Night Sweats – Weird symptom of Primary Hyperparathyroidism?

Just a very quick one bit off topic but thought I’d throw it out there.

Anybody ever have poor body temperature control during the day – feeling cold when others in room are warm and vice versa.

Night sweats!  Just recently started having night sweats again – not talking about a bit clammy but soaking through the mattress, duvet and pillow.  I had this a few years ago and it’s back again.  Mentioned it to GP last time, but he didn’t seem bothered.

It could be my proctitis flaring causing a fever but have wondered if it could be the Primary Hyperparathyroidism.

Any body else suffered?

113 thoughts on “Night Sweats – Weird symptom of Primary Hyperparathyroidism?

  1. SNAP. I thought I was just weird or going through the menopause early.

    From the previous post, I thought the voice box check was an essential part of it all. Its a good job I’ve got this place to put my freaky thoughts on.

    Thanks for starting this.

    Hope Callum’s ok.

    • Oh thank god for that! I thought my IBD had gone haywire and I had some sort of minor blood poisoning causing a fever and night sweats.
      As I said it last happened a few years ago and lasted for what seemed like a month – had to get mattress protectors but still ended up having to get a new memory foam mattress. BTW swear by memory foam for a great nights sleep helps ease the aches and pains wouldn’t be without one now.
      When I last had a bout of these night seats I lost 2 stone in weight very quickly in 2-3 months. The scales are dropping at the moment despite not dieting.
      Last time I had them I’m not exaggerating when I say I could wring my nightwear out in a morning everything was sodden. Going to have to take a large beach towel with me tomorrow so I don’t get the mattress at the hotel wet through. It’s awful because there’s nothing I can do about it. Hope it doesn’t last too long this time. Maybe it is a hormone thing – I think Primary Hyperparathyroidism can interfere with other hormone levels. You know what I hate about all this – I have mentioned all of these weird and wonderful symptoms to some medic or other at some point and no one has ever put them all together and said – oh yes you have Primary Hyperparathyroidism. I had to work it out myself. Bloody frustrating.

  2. YES!!!! I have never in all my life (ladies don’t sweat!) sweated like a stuck pig lol I wake dripping:0( and hits suddenly without warning. I now in my mid 60′s and had my menopause 20 years ago.
    KAB. my surgeon did a camera up my snoz before my second surgery, to look at the vocal cords.

    • Hi Ann. Apparently where I am having my surgery (private hospital) hasn’t got the facilities to do it just before surgery. like Foggy had. Are you seeing anyone at the moment with your illness? Are they just fobbing you off?

      I don’t think all this going private is any better than going through the NHS. However, 2 years ago I had a branchial cyst removed from the left hand side of my neck and went private. My consultant had retired from the nhs but kept seeing private patients. I had an ultrasound on the Wednesday and was in for my op on the Friday. I think to get the full benefit you need a consultant that concentrates on private patients only.

      Mr Talati, I wish you had been and endocrinologist. x He took my tonsils out in 2001 too!

      How are you feeling about tomorrow Simon? Good luck. Don’t know if you are online where you are but my thoughs will be with you.

      Karen

      • Think mine can’t believe me…? My eldest had B strain Meningitus 4 times in 3 years and they didnt like that either??? God bless Simon xx

  3. I was diagnosed with PHTP in September. My calcium levels have been 2.85, 2.74, 2.84 and 2.86. I have had a number of symptoms over the past few years but put it down to the menopause. Recently I have started crying over trivial things. I am hoping it is due to the PHTP, but there are times when I feel I am losing it. Is it something others with PHTP have experienced~?

    I am 53 years old. I have been referred to a surgeon for a parathyroidectomy.

    • Hello Suzie,

      Welcome to the blog – you’re the second new visitor who’s left a message today! That’s busy for here! :)
      I’ve burst into tears a number of times when watching something disturbing on the news (not normally a problem) and back in March last year when my father was in hospital with a stroke, I couldn’t keep it together! – it is the Primary Hyperparathyroidism don’t worry, you’ll be back to normal when the tumour’s out!!! I also used to have crying fits mixed in with laughter which made me think I was going mad. There have also been times when I thought I was losing touch with reality – all linked to the Primary Hyperparathyroidism. Post surgery I don’t cry, I don’t feel tearful and my sanity has returned! :) Not many medics know the whole symptomatology of this disease – so don’t expect them to make the link. Many undiagnosed Primary Hyperparathyroidism patients just end up on antidepressants because some of the symptoms can be so similar – depression, poor sleep, poor memory etc.
      I’ve gone from not remembering if I’d just put sugar in my coffee to being able to remember everything quickly and from not being able to string a sentence together to rattling out sentences like a machine gun.
      Keep us all posted on how you go on and any questions, just ask, there’ll be someone on here who knows the answer.
      Best wishes,
      Simon

    • Hi Susie,

      Some of the symptoms are very scarey. I was diagnosed with severe depression but had already been diagnosed with Primary Hyperparathyroidism so my GP and I knew it was symptoms of the Primary Hyperparathyroidism that were causing my symptoms. Its a very lonely illness at times but there are alot of people on this blog who understand perfectly how you feel.

      I would burst into tears for no reason at all. I felt like I was going crazy. It will get better after surgery, believe me.

      Take care.

      Karen x

  4. Hi Simon,

    Thanks very much for your prompt reply. It is really helpful to know that I am not having a breakdown and that it is the Primary Hyperparathyroidism. Did you figure out a way to help others understand what was going on without looking as if you are wallowing in self pity? I have just read yours and others comments as to wishing you could give others Primary Hyperparathyroidism for a day and see how they feel, that is just what I feel like. The problem is that I often look alright and so it’s hard for others to understand. I want to say (and sometimes do) “I DON’T FEEL WELL AT ALL, SO DON’T EXPECT SO MUCH FROM ME. I CAN’T GIVE IT AT THE MOMENT.” I feel, rightly or wrongly, that some people think I am being a bit melodramatic.

    I am really grateful to be able to share with others who really know what I am going through.

    I had a sestamibi scan a couple of weeks ago and am hoping that the adenoma(s) show up and that I don’t have to fight the surgeon for an operation. I am very grateful that I saw an enlightened Endocrinologist, who recognised straight away that I need surgery.

    With thanks, Susie

    • Hi Suzie,

      I can’t begin to explain to anyone who doesn’t have this condition, just how it impacts on your life.
      I have to admit that I didn’t make the connection between Primary Hyperparathyroidism and the effects on the brain until later on.
      I’d check, re-check and check again the front door was locked and thought I was developing OCD – but I now know it was poor memory.
      I struggled at work to makes sense of things which should have been simple. I left my laptop bag outside the business unit door after locking the door and just forgot to put it in the car – I did this several times but fortunately never had it stolen as I quickly drove back after getting home and noticing. Films and television became boring as I could not process what was going on. Comedies were a waste of time! I stopped laughing and became a 41 yr old Victor Meldrew. I felt mentally and emotionally detached from my partner and family. Everything seemed grey and I felt that I was treading water in a pool of custard, mentally, emotionally and physically. Before surgery I was worried just how much of my old self would come back – there was no need to worry as I am now fully back to normal whatever normal was! :)
      How to explain it to others? I used to explain it like this:
      I have a benign parathyroid tumour which is making my blood calcium levels vary out of control. Normally blood calcium levels are a nice flat line and that means our muscles and brain work normally. When my levels go up and down it affects my brain and muscles and some days I feel low and I can’t think straight and my memory is poor, my muscles are weak and painful and I have no energy. I have good days and bad days, the good are okay and the bad are awful. People tend not to see me on the bad days and on the good days I appear normal. This makes me feel like a fraud and that to the outside world, there is nothing wrong with me. There is something wrong with me I have a tumour and when it gets taken out I’ll be back to my old self! That’s how I tried to explain it to people. Only my partner knew how it all really affected me as they saw me all the time – good and bad. Even my mother didn’t really know how much it affected me as I only saw her on days when I was well enough to drive 40miles there and 40miles back.
      On the sestamibi scan – don’t worry about a negative scan!! Diagnosis is made on your blood work alone – your high results scream Primary hyperparathyroidism. The scan is just a tool for the surgeon, to find the general area of the tumour. A good surgeon will go in without a positive scan. The scan allows him to plan the surgery and go in direct to the tumour with a smaller scar. If your scan is negative or poor (like mine) the surgeon will still go in and check all 4 parathyroids to check them all for disease. Checking all 4 needs a bigger cut – 5cm rather than 2cm scar if your surgeon is skilful enough to do a mini operation. An inexperienced surgeon might want to do a larger cut. Each surgeon is different. I booked using the NHS choose and book system where you can chose your hospital/surgeon. I travelled from Sheffield to High Wycombe in Bucks to have a good experienced surgeon to do it. I’m very pleased with the results on the size of the scar (checking all 4) and the tidiness of the scar.
      All the best!
      Simon

    • Suzie,

      I could cry just reading your post. It reminded me of how frustrating it was to try and explain to people how I felt. Everyone (friends and family)presumed it was something to do with my thyroid. I used to want to scream out or get it tattooed on my head that I did not have a thyroid problem, they are nothing to do with your thyroid!!!

      My brother even commented to me that he couldn’t be that bad! This was after I was barely able to walk one day after climbing up the steps of a church tower and back down again. I couldn’t walk properly for 3 days. People don’t listen or understand. I had to print off articles and beg my OH to read them, in the first instance. He didn’t inderstand either. The only people taht have really understood have been people that have experienced the illness.

      I hope you keep well and hope this blog helps you.

      Karen x

  5. I was sent for CBT Cognative Behavoiur Therapy for depression, I have suffered with it most of my life and knew it was not depression, do they listen…nope!
    I am hoping to convince my gp to do a blood test again……. If my calcium is ok….then my vit d will be the trouble me thinks. It has been low for years as per PTH, but The symptoms for that are the bone pain, muscle weakness, memory, and the “waddle” associated with PTH…the story goes on…da da
    Suzie , welcome xx

  6. Thank you thank you thank you :)

    Ditto all of the above.

    Thank you Simon for starting this blog so that we can all feel normal!!

    Kaz x

    • You’re welcome! It is a lonely illness which can make you feel like a fraud, most docs no so little about it and there aren’t many websites where you can be amongst fellow UK sufferers. USA sites are fine, but it’s nice to be amongst fellow Brits with our NHS experiences.
      Simon

  7. Thank you all very much. This blog has been the most helpful thing I have experienced re the Primary Hyperparathyroidism. I was desperate for support from someone who has gone through it and now I have a number of people and I can’t begin to thank you enough.

    It’s a relief to know that one day I might be the social, active person I once was and that I will get my humour back. I am dreaming of walking the hills and having the energy to get in touch and meet up with friends again, something I haven’t done much off for sometime.

    Susie

    • You’re welcome Suzie!
      It is a help to be able to chat amongst fellow sufferers – especially UK ones.
      You will be social again, you will have the energy to get in touch with friends again – take it from me! Been there and come out of the other side!
      Whilst you’ve got the tumour still in, is is hard to imagine that your life can ever get back to normal. I always worried that the happy go lucky, sociable person I used to be was lost and gone forever. I’m more or less back to my old self and was within the week after surgery. I think the rest will come when I get my social and work life back on track and just start living again.
      Soon all be over and back to normal!
      Simon

  8. I’m off to see the surgeon for the first time tomorrow. Have a list of questions to ask, thanks to this blog.

    I hope all continues well with those of you who have had the op. I’ll let you know how it goes with the surgeon. On his list of credentials it says that he is someone who does do minimally invasive Parathyroid surgery, so I am hopeful he knows what he is doing.

    Regards, Susie

    • Hi Susie,

      Glad to hear that you found my blog helpful! As Primary Hyperparathyroidism is relatively rare and there is little relevant web based information for UK based people, I had hoped this my blog might help others in their journey – especially those who have had problems with diagnosis like myself. Good luck with your visit tomorrow and please drop back and let us all know how things have gone – the more information/experiences we have from other people, the more helpful the blog gets for any new visitors who drop by. Would be good to know who your surgeon is, if you don’t mind telling saying, so I can add them to our list if they’re not already on there.
      All the best,
      Simon

      • Hi all…….well had blood tests done again!!! Vitamin D and calcium, also going for a further Dexa to see if there are any changes since my surgery in 2010. She was not pleased that I had not had any follow ups for the Severe Osteoporosis I suffered, this can be repaired if caused by PTH. So its waiting again, but my feet and ankles are murder after sitting, again. A lot of the symptoms are related to very low Vit D….including the “waddle” we see in PTH. Can’t wait to get the results now…………..:-)

        • Hello Ann,

          Hope you can finally get sorted out properly! I used to have the waddle – most of which went when I got my vitamin D back up, although I still had some before surgery and none since. Let us know when you get your results!
          Simon XXX

        • Hi Ann,

          At least they seem to be now taking you seriously. I hope you get some answers. Let us know and keep well.

          Karen xx

  9. Hi All,
    Thinking of you Ann and hope the blood tests prove helpful.

    I saw the surgeon yesterday. The sestamibi scan clearly showed one parathyroid gland on the right. The surgeon reckons he can remove it with minimally invasive surgery, should have a 1 inch cut. He says that when it is really clear on the scan, it usually means there is just one adenoma. Apparently when there is more than one adenoma the results are often not so clear. He will check the PTH levels in theatre, but will not check the other glands.

    He also said that in Victorian times people were often taken into psychiatric hospitals with PHTP. I’d like to have said: ” isn’t it a shame that so many people are still being mis-diagnosed and treated as if they have a mental health problem?”, but I didn’t, I was too busy trying to remember all the other questions I had to ask him.

    He also said that in 30% of patients who have the operation the symptoms don’t disappear after surgery. He intimated that this is because they are so general if you were to ask a random group of shoppers in the supermarket, at least 30% would say they had the same symptoms, so basically he was saying it isn’t necessarily the PTHP causing them. If that’s the case I feel very sorry for that 30%, as it is no joke feeling like this.

    The surgeon is Christopher Wong and he works in Bristol NHS and in the private sector in Cardiff.

    • Hello Susie,
      Good to see that you had a nice positive scan, rather than the faint ‘hot spot’ I had! Good to hear that he’s doing an intra-operative PTH blood test this will allow him to confirm that he has taken the diseased parathyroid gland out and there are no other bad ones lurking in there pumping out PTH. I liked your quip about mental health! Surprising to hear that 30% of supermarket shoppers continually feel like death warmed up – no wonder most of them walk around the aisles like zombies, pushing their trolleys in my way, generally being a pain in the neck! :) I do think that surgeons like to add the caveat about not feel much better – so they don’t get unhappy patients screaming at them when they don’t feel 20 years younger all of a sudden. Generally, most parathyroidectomy patients feel a great deal better after surgery – he says after just getting back from a brisk 2 mile walk with the dog. That reminds me, I must return my crutches to the physiotherapy department! :)
      I’ll add Mr. Wong to my list of minimally invasive parathyroid surgeons!

      Simon

  10. My second surgeon was gobsmacked when I went back two weeks later !!! He said he would not have believed the improvement….., So it can happen.Have been going back down with some symptoms as you know, see gp again on 28th for blood results Yeah!!!
    Hope he will get you in asap Susie. xxxx

  11. Fantastic to hear you did a 2 mile walk today Simon.
    Ann, I get the feeling that even those who treat the condition don’t realise how bad it makes you feel. I do hope that this current problem gets sorted quickly and that if it is another adenoma you don’t have to wait too long for treatment.
    I have my first bone scan on Thursday next week. I don’t think I have had the same bone pain some of you have had, but I do wake up with some pain in my pelvis and ankles. I have had more of the stiffness and pain in my joints, which comes if I sit in one position for too long. I have trouble getting out of the bath. Also. my legs get very weak and wobbly if I do too much.
    Has anyone else had restless legs? I have been experiencing it on and off for a few years and now wonder if it is due to the PHTP?
    Love, Susie

    • Hi Susie,

      I used to have a real problem with restless legs! It’s one of those conditions that’s virtually impossible to describe so someone who hasn’t had it. Mine used to begin in the evening whilst sat down watching TV, but of course the real problem comes when it’s time to ‘try’ to get to sleep with fidgety legs which you have to move around all the time. Not a pleasant experience for the other half either. I haven’t had it since my operation, and I believe that it was related to the Primary Hyperparathyroidism. So I think I’m cured – but I do get bouts of anaemia and this in itself can cause restless legs…so I can’t say I’ll never have it again.

      Simon

  12. I have had the “legs” , thing for years??
    Forgot to say well done Simon ;-)
    Susie …Muscle weakness is a symptom of Severe vitamin d defiecency . Now, we know that is also a symptom of PTH, now I understand the mixture of things. No wonder it is all so difficult to pin point.

  13. Thanks, Simon and Ann, it sounds as if the restless legs are quite likely connected to the PHPT. I have had it on and off for about 7 years, and, as with you Simon, it starts in the evening, usually when I am sitting down watching TV.

    I have also had a sub-optimal vitamin D for a number of years and was on calcium and vit D until the PHPT was diagnosed. Now I just take vitamin D, which the endocrinologist said I should continue taking until after the surgery to help prevent my calcium dropping post op. I am supposed to take two a day, but was feeling so bad recently I decided to reduce it to one a day. I don’t know if it related, but i can see some improvement, especially with my aching joints. It’s all such a fine balancing act.

    Thanks for maintaining this site Simon, especially as you are hopefully past the worst.

    Sue

  14. From all the research i have done over the past five years, vit D is a no no, it only raises the blood calcium, and can in some cases cause strokes! Please be careful with it.

  15. Thanks Ann, it seems there are conflicting views about vit D, but I am aware that it probably raises my calcium levels, as that is what it is designed to do. I will go carefully. I will also check it out with one of our GPs, although I am not sure they all understand the condition. The one who did my calcium levels (she wanted to do it before renewing my prescription for vit D) and subsequently diagnosed PHPT and referred me to an endocrinologist, didn’t think to stop the calcium with the vit D, it was me that asked if I should still be taking it. She then put me on a lower dose, but another GP rang me up and told me to stop the calcium altogether and put me on vit D without it. So it’s not surprising I don’t know what to do.
    Have you any more news re yourself?

    Susie

  16. I am so happy I found this site. I was diagnosed with a suspected adenoma 2 years ago. I am still waiting for sugery. When I told the endo about the night sweats and daily nuclear meltdowns i was having, he said I probably had lymphoma. No one appears to know about the temperature fluctuations. I get so hot my skin hurts. I saw my surgeon in May and I’m still waiting for a 15 minute operation. It made me feel so much better to know that others feel normal after the surgery. I’ve spent 2 years feeling like a freak and I really didn’t think my life would ever return to normal. I am trying to get to New Zealand to have the operation as they can’t give me any firm time period here(another 3 to 4 months maybe) It’s hard to function when you know you could feel better and can’t get medical help for months or years after the diagnoses. I live in the richest province in Canada and will have to go to USA or further to get this surgery quicker.

    • Hello Jane,

      Welcome to my blog, good to hear the website has helped you realise that you’re not alone with night sweats and Primary Hyperparathyroidism. I can’t find anything online in medical texts about night sweats and Primary Hyperparathyroidism, but there’s a few of us on here who have had them – so we’re guessing there’s a link. I had a couple of bouts of night sweats after surgery as things settled down – but none since. Virtually everyone feels so much better very soon after surgery and things continue to improve for months afterwards. I’ve been on crutches for 3 years with even short walks causing me to be laid up for several days with swollen joins and muscle pain. I can now walk the dog for several miles with not even a twinge of pain. My brain and memory are back to normal and my depression has lifted! The sooner you can get the operation the better. I thought our National Health Service (NHS) was bad – but it only took me 2 months to get surgery! If you are considering surgery in the USA, then I’m sure you have heard of Dr. Norman in Florida – he specialises in parathyroid surgery. Although I had my operation on the NHS (for ‘free’) my surgeon also does private patient work if you fancy a trip to the UK! :) I hope you get something sorted out soon, so you can get tumour out and your life back.
      Best wishes,
      Simon

      • Thanks Simon. You must feel reborn! I wish some of the medical profession would read your blog. My surgeon was dismissive about the awful sypmtoms and said she rarely operated on anyone that actually felt bad. The only thing she told me to watch for was kidney stones. Your blog is doing a great service for all of us.
        Jane

        • Hi Jane,

          I have yet to meet a medic who does understand the symptoms we go through – my rheumatologist swore that none of my joint swelling/joint pain/muscle aches pains & stiffness came from the Primary Hyperparathyroidism – and when I see her again for the first time after surgery – she will no doubt declare my new found pain free mobility – a spontaneous remission of ‘arthritis’ and nothing to do with the parathyroid. She sent me for every test under the sun. MRI, muscle conductivity, nerve conductivity, cancer the lot! All negative – still she would not link my symptoms to Primary Hyperparathyroidism. My surgeon was more understanding – but said he had patients with very high blood calcium and PTH and NO symptoms whatsoever. My surgeon said that I should forgive my other doctors ignorance – because they don’t see enough patients with PHPT to know enough about how we feel! Maybe they should go back to med school? :)
          Simon

    • Jane, your best bet is Dr. Norman in Florida, it is all he does all the time. They had a blog but it got too much rubbish there, so they closed it. The people in Canada were really having a bad time getting surgery.
      parathyroid.com
      a lot of reading but very interesting x good luck

      • Thanks Ann.
        I’ve looked at Dr. Norman’s site. I’ve actually contacted them and Dr. Larian in California. They are pretty expensive($13,000.00) and have a month wait time. My surgeon is supposed to contact me today about my records and test results, so I’ll fire them off and see who has the shortest wait period. New Zealand is a lot cheaper than most of the USA clinics and I have family there. I don’t know whether they do the MIRP or not. At this point they could use a chainsaw and I wouldn’t care.
        Jane

        • I was unlucky to have two bad ones,,,typical me lol, 2nd inside the Thymus! I suppose the air fares all add to it for you too..:-( Usa is expensive but i would have gone if I had had the money..

  17. Hi Jane,

    I’m glad you have found this blog. I too am thankful for it and although it doesn’t speed up our treatment, it does help to share stories and discuss some of the lesser known symptoms of the disease. If only the experts would listen to us, or, as you say, read this blog.
    As for the night sweats – I have always put mine down to the menopause, but may be they too will disappear after the operation.
    And as for your Dr saying that she has rarely operated on anyone who felt bad, she should read Dr Norman’s site, as, after surgery, often those who thought they didn’t have any symptoms only realised they had been under par when they started to feel so much better. I think the disease often comes on so slowly, and the decline in energy, cognitive ability, joint pains etc develop so gradually you don’t notice the subtle changes, and accept them as the norm.
    I hope you don’t have to wait too long for your op.

    Susie

    • Hi Susie,
      Do you know when your surgery will be? I’ve had a conversation with a clinic in Montana that sounds pretty good. They said I could get in within 3 to 4 weeks and it’s really close to Calgary…about a 5 hour drive. I had an interesting development on the weekend that feaked me out and was funny as well….I started stuttering. It does give me a little extra time to try to remember what I was talking about! I’ve been completely worn down this last week…fighting with my surgeon and feeling tired and stupid, so maybe it’s like a nervous tick? If it keeps up, maybe Simon can add it to the weird list of symptoms. :0
      Jane

  18. Hi Simon (and all)! What a fantastic blog!!! I am a 30 yr old female, recently diagnosed with primary hyperparathyroidism (back in Nov 11), and just a few days ago had my sestamibi scan. This site is a great resource, I have always been a bit of a morose person, but in the past year or so depression/anger/frustration seemed to constantly be at a point where i just want to give up. I’m hoping that after the surgery I’ll be as fresh as you (and the others commenting) have been. I am a bit apprehensive about the surgery because I sing (er, “throaty yelling” is a better term) in a band, and have had to put many plans on hold until I have the surgery and recovery period etc. I’m in the U.S., in Miami, Florida, and hoping the surgeon that my Doctor recommends is as skillful with this type of surgery as others have been. I look forward to reading through your site more, and feeling a little less insane ;) I would like to send over some photos of my experiences as well, aside from the text book medical websites, there is very little information that feels relate-able on a personal basis – your blog is doing a fantastic job of that. cheers, and congrats on your surgery recovery! – Jean

    • Hi Jean,
      Glad to hear you like the blog and you’re finding it helpful!
      Being in Florida you’re on the doorstep of the famous Dr. Norman – the parathyroid surgery expert – would be good if you could get him to fix you.
      I know what you mean about the depression/anger/frustration – it really did change my personality for the worst until I got the bad gland out. My throat was sore for a few days – but that was down to the tubes from anaesthetics. I had no change on my voice – there was some tightness in the neck but a few stretching exercises sorted that out.
      You’ll be back to your old self soon after surgery!
      Keep us posted and feel free to post as much as you want.
      Best wishes,
      Simon

    • Hello Jean, check to see if your insurance will cover going to see Norman in Tampa FL. This is all he does daily.. much good luck x

  19. Hi Jane and welcome to the site Jean,

    I don’t know for sure when my surgery will be, but my surgeon hopes it’ll be in about 2 months time. I saw him for the first time on the 14th January.

    I had a bone scan this morning, will get the results in about 3-4 weeks time.

    I haven’t had a stutter, but I have had a twitch in my right shoulder for some years now. I am hoping it is related to the PHTP, but only time will tell. I don’t know I am doing it, but my right shoulder often feels uncomfortable, so that may be the reason it’s been twitching. I can quite see a stutter being caused by the condition, as it really does affect ones mental ability.

    Best wishes one and all, Susie

  20. Correction, I saw the surgeon for the first time on the 14th Feb. Valentines Day. How could I forget, or, should I say, “How do I remember?”
    Susie

    • Hi Susie,
      I set up the appointment with Montana and suddenly my own surgeon had an opening. My surgery will be on March 5th. I’m really excited. I’ll keep you posted. I’ve made a list of all the cranky nasty things that have been going on. I’ve also done a lot of the brain training on Lumosity…and ended up with very bad scores. It will be interesting to see what happens after the surgery.
      Jane

      • Good luck lass xxxxx
        As an aside, I have a vitamin d level well under the correct level !!1 Surprise……………But the Calcium is ok, thankfully: so the waddle and a lot of bone pain is the vitamin drop that the raised calcium causes. See how I feel after a few weeks on meds to build up my low levels, xxx

        • Hello Ann,

          Good news on the blood calcium! I know I felt pretty rotten when my vitamin D level was at a severe deficiency level 5 nmol/L. I had no strength in my muscles and couldn’t turn round in bed or lift myself up in bed or a chair without pushing using my arms, at its worst I had to be lifted out of the bath. I also had the waddle gait and the bone pain. Hope you start to feel better soon! I noticed a difference after about a week of high dose vitamin D replacement. How much vitamin D per day have they given you Ann?

          Simon

          • I am not much good at the chemical names but will tell you more when I get the script filled tomorrow lol She said my level was about half the lowest level it should be??? To be honest I am not sure she knew what she was up to… The meds seem to be anti Osteoporosis things, to stop one getting it, well I am at high risk of fractures?rotflmao Normal stuff for NHS..

          • Hi Ann,

            Maybe you should be telling them what you need. Hope the meds work for you. Maybe you can start getting somewhere now.

            Take care,

            Karen xxx

      • Hi Jane,

        Looking forward to hearing how well you feel after surgery – I’m sure you’ll get your old healthy self back like I have.

        Best wishes,

        Simon

  21. Hi Jane, Brilliant news re your operation. Will be thinking of you on March 5th – just looked in the diary and realised it’s on Monday, so not long to wait nowl. You may have the record (on this blog) for longest length of time from diagnosis to surgery. It must have been pretty tough when they misdiagnosed you with lymphoma. Is your surgeon going to do minimally invasive surgery?
    I hope you keep your list of cranky symptoms, I think we need to join forces to and let the medical profession know what this disease looks like from the inside.

    Let us know how it all goes.
    Take care,

    Susie

  22. Nice one Jane but jealous.com up here in Scotland.

    Finally got my surgeon appointment through. I was supposed to have seen him by now (within a month of last consutancy appointment) and now have an appointment for the 3rd April (2 months after seeing consultant). So unless he is damn speedy and has no surgery waiting lst there aint no way I’m going to be seeing my consultant post op on the 3rd May!!

    Am going to call his secretary in the morning to find out what the delay has been and if it can be brought forward.

    How I wish I wasn’t relying on the NHS right now!

    Kaz

        • Right, she said my D was at about 25/7 should be 52, then asked me if she should give me meds now or wait for the dexa (tears hair out) I am now on Alendronic Acid 75mg, one a week…prevent Osteoporosis, bit flipping late, I am high risk fracture…
          Also Calcichew D3 x2 daily xxx, They are 4 times the strength of a multivit. We will see… but have sat for 20 minutes in the sun today, bare arms and face, the correct way it seems. I pray this will be the up path xlol Will be watching you all xxxxxxxxxxxxx

    • Hi Kaz,

      It took me 2 months from diagnosis to see surgeon, then another 2 months on his waiting list before surgery date. Sounds like a long way off but you’ll be post-op before you know it. Once you get a firm date for surgery, time just flies by!
      Hope it not too much longer for you.

      Simon

  23. Thinking of you Jane and hoping all goes really well tomorrow.
    Best wishes, Susie

  24. Hi, It’s the night before surgery. I’m really excited. I will have to stay in overnight, but will just have a local, so I hope to feel good by the time I get home. Thanks for your support.
    Jane

  25. I had my surgery on Monday. The doctor found the bad gland and removed it. They were a bit slow getting the results back from the lab, so they started stitching me up. The hormone levels didn’t go down! She said that they would have to give me a general and start exploring for the second one. She found another large gland that didn’t show up on the scan and took that out, but the levels still didn’t go down as far as she wanted. I do have one normal gland but no one can find the forth one. I am feeling better, although the anesthetic has made my entire body really stiff and sore. I’ve ended up with a 2 1/2 inch incision which is pretty swollen, but no pain. It feels like I tied my scarf too tight. I’m already feeling better mentally and a nasty pain I’ve had in my back has disappeared. I can hardly wait to see what changes the next couple of weeks bring!
    Jane

    • Hello Jane,

      Great to hear from you!
      Sorry to hear your case wasn’t clear cut, but it sounds like you’re on the road to recovery! Your hidden gland may be lurking in your thymus – that seems to be a common place for hidden parathyroid glands. I was very swollen around the scar for a good couple of weeks after the surgery although the scar itself was nice and clean and healed very well. I think the swelling must come from all the poking around they have to do if they’re hunting for more than one gland. The mental recovery is very quick and my memory and ability to speak without pausing for thought came back within an hour. I had my first dream for ages, the night after the surgery – I think my brain was too dysfunctional to produce a dream before.
      It seems to take a week or so to get most of the benefits after surgery especially the aches and pains – but sometimes longer in some people.
      I hope you’ll be fully back to your old self very soon!
      Best wishes,
      Simon

  26. Hi Jane xxxx so hope you will be A1 asap. A lot of the swelling is because the skin has tiny drainage channels and the fluid can’t just flow away so now collects. You can massage with Vitamin E cream/ E45 to aid the progress. Bless I am glad it’s over for you xxx

  27. Congrats Jane, Glad to hear you are on the road to recovery :)

    I’m hoping I’m going to be next X No luck on moving surgeon appointment (well they did give me an earlier date but I’m out of the country with work – hope the surgeon is as nice as his secretary :)

    Think what I am currently looking forward to most is a good nights sleep!

    Hope everyone is doing just fine!
    Simon your blog is getting tres busy!

    Kaz xxx

    • Hi Kaz,

      Trust me, you’ll sleep like a log once it’s out.
      It does seem to be picking up a bit – unlike my very first posts when I felt like I was screaming into the void of cyberspace.
      So much for Primary Hyperparathyroidism being a rare condition.
      Simon

  28. Good to hear you have come through your surgery Jane. I hope you’ll soon be zooming along. Sorry it wasn’t straight forward and that they couldn’t find the fourth gland.
    Best wishes, Sue

  29. Hi All
    Thank you for all your kind wishes. I’m feeling very peculiar right now, so I haven’t been responding. I have real mental fuzzies and just haven’t been feeling right. I’m doing better at finding words and remembering things and I’m sleeping like a rock, but there’s still something wrong. Can’t put my finger on it. Maybe the gland she couldn’t find is acting up? Simon, you said you were completely clear headed after surgery? Maybe I just need a bit more time. I am feeling sort of tingly and have some pins and needles, so I’ve been taking lots of milk, calcium and vitamin D.
    Jane

  30. Jane suggest you take Calcium.=Calcichew-D3 os similar… the tigling is the severe drop in calcium nd the body reacts. If you feel really ill go to A&E, you could be HyPOparathyroid, the opposite to PTH and it can be serious. If you take the calcium and feel better, you should be ok. Hopefully thats all it is xxxxxxxxxxxxxxxxxxx god bless

    • Hi Ann,
      I’m taking calcium and vitamin D, but my doctor is a milk fanatic. I don’t like it, but I’m drinking about 3 huge glasses with the calcium. My tingles appear to be gone right now. How did they find the on on your Thymus? Did your symptoms abate for a while?
      Thanks
      Jane

      • I really don’t know how he found it?? He is a specialist in Parathyroid surgery. We knew it was down low from the Sestamibi scan, so he probably guessed. I had improvement for a couple of months, but some of the symptoms crept back. Now after 18 months and a lot of moaning!!! my calcium is ok, but the vit D extremely low. If you look up vit d you will find some of the symptoms are the same as PTH!!! One assumes that as they are linked, thats why they are similar feelings xx
        Been on the extra vit d for nearly two weeks now and I think I feel a bit better… I am away next week so won’t be about. xxxtake care…x

  31. Hello Jane , hope all is improving for you . It did take a few days for me to feel “right”. My scar was large and angry , you can see on another thread here, but now 5 weeks on it is far better. As your surgeon sounds good I think it yours will fade very well
    Dave

  32. Hi All,
    I hope you are feeling better today Jane. I have been thinking of you.
    I rang my surgeon’s secretary today to see if they can let me know when my surgery is. She said I was on the waiting list, but apart from that she had no real idea of how much longer I will have to wait. I told her how long it is since I was referred (Last September to an endocrinologist and then in December to the surgeon) and how bad I feel. She was sympathetic, but couldn’t do much about it.
    Good to hear you are still doing well Dave.
    XXX Susie

    • Hi Susie and KAZ,
      I hope your able to get going on surgery. It’s so hard to wait when you know that you will feel better. There were days that I was frantic and didn’t think I would ever get in. I will have to have another go at it myself. All the stuff that was going on before has returned! I have an appointment with the doctor on friday and she will hopefully schedule another scan. Poor Susie! Call again next week and tell her that you will take any cancellation or opening and ask whether they can refer you to another doctor that isn’t as busy. If you keep calling the secretary maybe she’ll look harder or remember your name if there is something. My surgeon didn’t know I was there until she saw my chart. Her receptionist took pity on me and stuffed me into a tiny timeslot. She’s probably in trouble now after all the problems kept me in the OR for 4 hours. I have a lot of sympathy for you both. I know how bad it feels, but at least we have each other. It was awful not knowing anyone else with this problem. Hi Dave! My neck is nearly healed. I took the tape off yesterday and it is pretty lumpy but looks OK.
      Jane

  33. Dear Jane,
    Thanks fro your advice. I will try ringing my surgeon’s secretary next week to see if I can speed things up a bit.
    Apro po of your operation and the surgeon not finding your missing gland, have you read Simon’s account of his operation and the use of
    methylene blue to help stain the gland and make it easier to locate? It does sound suspiciously like you have another adenoma lurking somewhere in your body. I am really sorry it hasn’t been straight forward for you, I hope you don’t have to wait ages for another operation if you need one.
    XXX Susie

  34. Hi All,
    I am still waiting for news of my surgery. Feeling particularly irritable and frustrated with almost everything and everyone at the moment, but trying desperately not to take it out on the innocent. It’s a feeling of helplessness – I have always felt we have a great health service, but what will it take to get my operation? Are they waiting until I have more serious problems, like a pathological fracture, High blood pressure, heart disease or kidney stones to name but a few. I did think about a photo of my urine for the blog, showing what looks like sediments of calcium, but don’t think it will be as amusing as Simon’s blue ‘pee’ so you’ve been spared.
    I tried my surgeon’s secretary again today, but she’s on annual leave for the day. Hope to get her tomorrow and press my case.
    Best wishes to all who, like me, are in ‘limbo’ land waiting for sugery,
    Susie

    • Had 18months waiting for my second poppet. You rant and shout all you need ,,,we totally understand xxxx Sorry I haven’t got the money, I would pay for the lot of you xxx

    • Hi Susie,
      I was frantic while I was waiting as well. I did find something that helped me, but I am always a little hesitant about suggesting things like this. There is a Canadian homeopathic company called Bell that makes a product called Calcium Buildup Remover. It sounds like drain cleaner, but it actually did help me and they have a distributor in London. I can’t see anything in the ingredients that would be harmful. http://www.biofriendncare.com/
      I figured it was worth a try and it helped the headaches and joint pain. I hope you’re drinking gallons of water to wash all the sediment out of your kidneys.

      I’m feeling a bit better now. The pain I had in my back/kidney has gone away and I’m sleeping really well. I guess I was expecting a miraculous change, not a small slow one. I went back to see the surgeon on Friday and she announced that I was cured. She couldn’t really remember me or what she did, but said that she had fixed my problem. She also told me to come back in 6 months and get my blood levels tested because this could come back!!! I’m wondering about that as the little suckers are sitting in a jar somewhere, so how would they come back? Oh well…starting to feel better so it’s all good. I’ll be thinking about you and Kaz. It’s really hard to wait.
      Jane

  35. Thanks Jane and Ann for your support. I am so glad you are feeling better Jane, it is an encouragement to hear how much difference the surgery makes.

    I rang my surgeon’s secretary again and the news wasn’t good, my surgeon has apparently got a huge back log on his waiting list, so they cannot give me any idea how long I might have to wait. I was so discouraged after speaking to her I contacted Mr Andrew McLaren by email to see if there was any chance of my transferring to his care in High Wycombe. He emailed me back that same day and said that he would be very happy to see me if I could get my GP to refer me. The next day (yesterday) I went to my GP, and (I think reluctantly) she said she would fax Mr McLaren’s secretary asking for a referral. I may not get in any quicker, but after all the good things I have heard about him (thanks Simon) I figure I haven’t got anything to lose. It would be an added bonus if I also got to have my surgery earlier, as (I don’t need to tell you), much of my life is on hold until I feel better.

    It looks like it’s a race between you and me Kaz. Hope the appointment with the surgeon next week goes well. I won’t be too jealous if you get in first.
    XXX Susie

    • Hello Susie,

      Stephanie Boniface on here, recently saw Mr. McLaren after being left hanging for a year by Addenbrokes in Cambridge. It took her four weeks to see him from referral by GP and after seeing him a few days ago – she has an estimated surgery date of early May! So, not a bad waiting time all told.
      Of course the other plus point is that you’ll be seeing one of the best around for parathyroid surgery. Give him my regards when you see him.
      I can’t believe you’ve been left so long without surgery – 6 months after diagnosis by an endo’ and still no date for surgery!
      Hope Mr. McLaren gets you sorted!

      Simon

      • Well done you, I have to be honest, that is how i got my 2nd, going elsewhere. my problem was the endo then! ;;-{. I wish so much good luck, this man is a parathyroid specialist too xxx
        Has the rule about 16 weeks from seeing the surgeon gone now??

  36. Thanks Simon and Ann,
    I have had a bit of a difficult day, feeling quite tearful and low. Rang my GP practice this afternoon to see if the doctor has sent the referral letter (which I asked for on Thursday last week), but no joy, the receptionist said she would get the secretary to let me know when it has gone off. Everyone says it’s good to push your case, but I’m not so sure. It almost feels like the opposite.
    Sorry for being such a moaner, but I am really struggling.
    XXXX Susie

    PS The bone scan shows I have osteopenia

    • Hello Susie,

      Sorry you’re feeling low, I know exactly where you are right know as I have been there before. Things grind slowly in GP surgery land! In fact I’ve had my fill of lazy GP surgery secretary Nazis, who treat you like you’re a low life imbecile. (Me, bitter? No!) I remember the head GP’s wife who is also a secretary, telling me 2 days running to ring back tomorrow when chasing up my referral to Mr. McLaren. I felt like screaming down the phone ‘Look, I’ve got a f***** tumour in my neck which is ruining my life… and you want me to phone back tomorrow???’ But, I didn’t!! :) The main problem is that the condition, makes us emotionally unstable and so we’re not able to deal with things as easily as ‘normal’ people. The good news is, you’re in the system, you will get sorted soon, I know it feels like an age away, but you’ll soon be the other side of this dreadful disease. I can’t begin to explain just how much better you’ll feel emotionally and physically. I try to look back and remember just how bad I was, but it’s now becoming a distant memory. Soon, your bad health will be a distant memory and you’ll be feeling great again! Stick in there, keep moaning, if you need to …. I know I needed someone to moan to when I was going through it.
      P.S. I had osteopenia on 2 separate scans 3 years apart – your bones will build back up as soon as the tumour comes out. I intend to make sure they scan me again in 2 years time just to make sure.

      Simon

      • Oh Susie, ((((((huge hugs)))))) as Simon said we are all knowing just how you feel xxxx
        I was almost crawling along the corridors at the hospital to see the surgeon, so I have been pretty whacked out too, I just so wish these people would get a few days of this at its worst…..
        Fingers crossed my pills seem to be working, more energy and less pain, actually sleeping a bit better too. I will be going for another dexa too ….yes I will.
        Take heart sweetheart , it will happen xx

    • Hi Susie,
      I’m sorry you’re feeling so bad. I wish there was something you could do to feel better. I think the depression and helplessness is even worse than the physical stuff. I waited two years, almost to the day, before surgery. The emotional side of this is paralyzing. Don’t let them make you feel worthless. I think you should keep after them. You can tell them that the surgeon is waiting for them to send the referral. I never knew whether I was going to dissolve into tears or sink my fangs into people….sometimes I did both at once! Happily, I now seem to have a bit more control over my outbursts, though my co-workers still keep a respectful distance. This will be over soon! I’m sending you a big mental hug.
      Jane

  37. Thanks one and all for your support. It’s good to hear how well you all are after the surgery.

    I wish I could go into the surgery, smile sweetly at them, and say, ” thank you but I have decided I no longer need your services.”

    Next time I ring the surgery I will try saying that Mr McLaren is waiting for the referral.

    Susie

  38. PS Has anyone else experienced a slight numbness / tingling feeling in their feet? I don’t have it all the time, but every now and again. – it came back last night. I did go to the doctor about it before the HPTP diagnosis and she said it was probably caused by my shoes.

    • Hello Susie,

      One of my main problem areas was my feet/ankles. I had swollen painful ankles for 3 years which rarely went down, the swelling and pain seemed to be in the tendons around the ankles. They got worse after exercise – if I walked more and a couple of hundred yards, then they would be swollen and painful for the following week – pushing me into taking tramadol (very strong painkillers from GP) for the following week just to get around and get to sleep. I had a lot of knotted tension and pain on the arches of the feet, and would go to sleep rubbing them as they constantly felt on the verge of going into spasm/cramp. All this was caused by the parathyroid tumour and apart from the odd very rare ache, everything is back to normal. Found this on a website: Cramps and paresthesias (pins and needles/numbness) are reported in approximately 50% of Primary Hyperparathyroidism patients. I also used to get cramps and spasms in my upper back muscles which plagued me for the last 3 years – even the tramadol didn’t mask the pain from that! I’ve had 3 different sets of hospital fitted orthotic soles given to me and 2 sessions of physiotherapy. My rheumatologist was convinced that all my troubles came from my inflammatory bowel disease – I tried so many times to convince her that is was the tumour but she refused point blank to accept this. Whilst I’ll never be able to prove her wrong and me right, I haven’t had a twinge since getting the tumour out and recently walked a 5 mile round trip to the pub and back with the dog, with not so much as a twinge. I think we can guess who was right and who was wrong! P.S. Don’t expect your GP to know anything about PHPT, let alone guess as to which symptoms can be linked to it and which can’t. Your GP will no doubt have forgotten whatever they have learnt about PHPT as a student a long time ago. My GP at least had the good grace to admit to me that he knew nothing about the condition and that I was his one and only ever patient with PHPT and he’s in his early fifties.
      Simon

  39. Thanks Simon. You really did suffer, no wonder you know so much about the condition.
    After my last post I did look up paraethesias and, as you say, it is a symptom in some people with PHPT. I was interested to see that it is also a symptom of low vitamin D, which many of us also have. It’s a while since I went to my GP about it, but at the time I think I was slightly anxious it might be MS.
    Out of interest, how are your bowels doing? Has your inflammatory bowel disease calmed down? I know that constipation is a symptom of PHPT (I suffered with it on and off for some years) but in the past couple of years I have had the opposite problem, in fact (sorry if this is too much information) I can go 4 or 5 times a day and often it is really offensive and loose. I saw one of our GPs about (well over a year ago) it and she said I had irritable bowel syndrome, but I was not (and still aren’t) convinced. I can’t help thinking it’s all linked to the PHPT.

    Susie

    • I have no problems with constipation any more as you would expect. The high blood calcium causes us to pee out too much water and we end up dehydrated ( so too much water gets drawn out of the stool, causing constipation), but I would say that it’s a kind of dehydration that doesn’t make you massively thirsty – although I always used to have to go to bed with some water and the inevitable night time trips to pass water. That’s all over now though post surgery! High blood calcium can cause over production of acid in the stomach – causing indigestion and acid reflux (heartburn) in many of us. I went from a cast iron stomach to having a delicate stomach and chugging Gaviscon in the middle of the night. Before the PHPT self diagnosis – I used to think it was the anti-arthritis tablets I was on, but after stopping those – I wondered if my IBD had moved further up the gut – my gastroenterologist ‘offered’ another gastroscopy, I declined! :) Anyhow I digress as usual! My theory is that the high stomach acid level means that when food gets to the small intestine where most digestion happens – not all of the enzymes (which break down the food) work well in an acid environment. The body should make the small intestine alkaline, but there is too much acid from above to neutralise it all. My theory is that undigested food goes into the colon, large intestine and causes gas pains and loose stools etc. Many people with PHPT complain of IBS and I have heard some describe acidic stools which burn as they exit – I have suffered from this, and I now wonder if the PHPT from 13 yrs ago set my IBD off?? Who knows, it’s a nice unifying theory, but just that, and it’s not going to help me either way. So yes, I think your IBS and PHPT may well be linked – I have read on parathyroid.com of many peoples IBS reversing afterwards. IBD on the other hand is quite a different condition, which is chronic and virtually incurable – except for removing the colon entirely – much like decapitation is a cure for a headache! :)
      Be good to hear from you that it all clears up for you after surgery!
      Simon

    • As with Simon , I had chronic gastric problems, A little improved now, as for the bowels , like you it was several times a day, and ditto for consistency . Now that too is improved, This pth causes so many problems that are not always recorded. Keep strong xx

  40. Thanks Ann and Jane for your support and care. I will of course let you all know what Mr McLaren says when I finally get to see him. I hope you are both still doing well. Any more news Jane on your missing parathyroid gland?
    XXX Susie

    PS If I stayed with my first surgeon I should be in line for my operation within the next 3-4 weeks, as they have a policy of treatment within 14 weeks from seeing a specialist. I saw the Endo on December 21st, so it was 14 weeks last Wednesday. But when I spoke to the surgeon’s secretary well over a week ago, she could give me no idea of how long it would be, (he has a huge back log of people waiting for surgery) so I figured it was worth going for gold with Mr McLaren instead.

    • Hello Susie,

      I’ve just had a thought – and yes, it did hurt! :)
      A while back, one of the regulars on here (Callum – who has had all of his parathyroids removed due to MEN1, a very rare condition which affects parathyroids, pancreas and pituitary!) made mention of the surgeon Mr. G Wishart at Addenbrookes.
      He has his own site for MEN patients – and he links to mine for the parathyroid surgeons list.
      Anyhow, long story short, God, I do tend to go ’round the houses’ – he told me I should amend my list of surgeons to remove Mr. G. Wishart who was the ‘parathyroid surgery expert’ at Addenbrokes. Why? Because he had gone private only – this is no doubt why there is a massive backlog of parathyroid surgery at Addenbrookes and you were stuck slap bang in the middle of it! No doubt they were treating those with life threateningly high blood calcium first, and leaving the less risky, but equally ill ones ’til last.
      Truth be told you were well placed at Addenbrookes because they were very up on Primary Hyperparathyroidism and parathyroid surgery, unfortunately you came along just as Mr. Wishart left them in the lurch.
      I must say at the time when you said you were having problems at Addenbrookes, it seemed strange, but in hindsight it now makes sense.
      I imagine that you haven’t been told about the situation as it doesn’t exactly look good on the hospital.
      Simon

  41. Hi Simon,
    I’m not under Addenbrooks, but my story is similar to Stephanie’s, in that I have asked for a referral to Mr McLaren after already seeing a surgeon in Bristol back in February (who has such a long waiting list they could not give me any idea of when my surgery might be.)
    Mr McLaren has accepted me on his books, but is now waiting for the scans from Bristol before he sees me for my pre op etc. I feel relieved that he is going to do my op, I feel like I will be in really capable hands.
    Has anyone heard how Stephanie is getting on?
    XXX Susie

    • Apologies Susie,
      I’m getting mixed up with Stephanie Boniface!! What was I saying about needing to move to a forum based system – so we can keep track of conversations. I could blame it on my parathyroid, but as that’s been taken out I can’t! :)
      Great to hear you’re on Mr. McLarens books now – hope Bristol pull their finger out and send the scan.
      Going to have to track down Stephanies last posts and get back to you…

      Simon

  42. PS I can’t find the page with Christine Ballard’s posts, how do I search for her comments?
    XXX Susie

    • Hello Susie,

      This is Stephanie Boniface’s (Bonny) last post – she has surgery with Mr. McLaren in early may!

      Hi Simon

      Met Mr McLaren yesterday at Stoke Mandeville Hosp, I gave hime your regards and told him that you’re doing well. He smiled and said that was good to hear.

      He’s checked my scans from Addenbrookes and apparently they show there is something on the left side but as its not clear if its a single adenoma or not will have to have the full exploration with an overnight stay.

      Must say I was very impressed and have full confidence in him, he said it will probably be early May for surgery at Wycombe Hosp,which was a pleasant surprise considering I have been waiting over a year for Addenbrookes to stop dithering. So exactly 4 weeks after contacting Mr McLaren I have been seen by him, assessed and have had all the pre op checks. Funnily enough I received a letter from Addenbrookes this Monday for an appointment to see their surgeon.

      Thanks again for setting up this website, without it I would never have known I could go to any hospital and wouldn’t have found Mr McLaren.

      Best wishes
      Bonny

    • Hello Susie,

      Searches for Christine don’t bring anything up but a search for Chris does.
      Christine Ballards posts are generally over on this page:

      http://doihaveprimaryhyperparathyroidism.wordpress.com/2011/12/13/a-question-about-parathyroid-surgery-surgeons-from-cassy-a-new-visitor-to-the-site/
      There should be a search box on the right hand side of the site.
      Think I need to bite the bullet and set this forum up.
      I think in the mean time I might set up a Chat/comments page so we all post to the same page.

      Simon

  43. Hi Simon,

    Sounds like a good idea, as it would be good to see everyone else’s comments at a glance. I am very impressed with all you are doing for us, especially as you are over the worst yourself. Thanks.
    XXX Susie

  44. Hi,
    I just stumbled on this website when I was looking for resources on parathyroid. I was diagnosed last week but first blood test that showed high calcium and PTH was 17 months ago. The specialist has requested more tests but has confirmed I will be having surgery for para. At the moment I get very tired legs, can be tearful, nightmares, often feel exhaused and now occassional stuttering. I am not an anxious person at all and these occassional incidences of stuttering is the one thing that is really worrying me. (Scaring me a lot actually).

    I would appreciate any feedback from anyone that is going through the same.

    • Hello Elaine,

      Welcome to my blog, which I set up in desperation as I was initially undiagnosed despite seeing an endocrinologist for high blood calcium test results, found during a routine blood test ordered by my rheumatologist! I was left hanging for 3 years until I finally worked it all out for myself and asked my GP to refer me back to the endocrinologist – it still took him a further 6 months to agree with my self-diagnosis.
      Unfortunately endocrinologists and other medics still consider Primary Hyperparathyroidism a disease of stones (kidney stones), bones (thinning of the bones – osteopenia or osteoporosis), groans (abdominal pain), and moans (depression). After suffering the symptoms myself for over 13 years (with the last three being the worst), and chatting with many other fellow sufferers on this blog – I can reassure you that there are so many other symptoms which we all go through – and which the medics know little of! The symptoms you list are typical of what many of us go through!
      I’ve had the tired legs, muscle pain, muscle spasms, soreness, burning, muscle weakness in the upper thigh and upper arms (have to push up with arms to get out of the chair), crushing fatigue – no mental or physical energy. The psychological symptoms can be scary! I’ve had the anxiety attacks – a sudden sense of impending doom for no reason whatsoever, I too would also break down in tears for no reason or whilst laughing, the laughter would suddenly turn to tears. Depression was a problem, not something I’ve had before and a label I wasn’t comfortable in using, but looking back I was depressed – everything was grey, boring and uninteresting, I stopped watching my favourite comedies – there was no point any more. Life was like treading water in thick custard – mentally and physically. I too had trouble spitting words out – stuttering, lost for words, couldn’t remember names for things or people without a struggle. There may be other symptoms you have which you haven’t yet attributed to the Primary Hyperthyroidism – have a look at the list of symptoms on here for more information.
      The good news is that all the symptoms will go away after you have the parathyroid operation. The mental aspects are the first to leave you, within hours and days you’ll get back to normal, some of the physical aspects may take longer, few weeks. I’d say you come out of the worst and are virtually back to normal after a full month has passed. So don’t worry, you’re not going mad! You’ll be back to your old self soon after you’ve had surgery.
      There’s 3 or four other UK sufferers on here who are due surgery soon and I’m sure that they’ll chip in and help out soon.
      I’ll pop your first message to us on the front page, so everyone sees your message, so they can say hello!
      Any more questions about the symptoms, surgery etc, just shout, we’re here to help out.

      Best wishes,
      Simon

    • Hi Elaine,
      Don’t worry about the stuttering! It’s a relief to find someone else with the same problem, but rest assured, it will go away as soon as you have the operation. I really thought I was losing my mind when it started.The calcium in your blood disrupts all of the electrical circuits in your body and brain. I stuttered when I was tired or confused, which was most of the time. I had surgery a little over a month ago. I expected to feel fantastic right away, but when you’ve had this for a while it takes time to heal the damage. My thought processes are gradually improving and the stuttering stopped immediately, but I think the emotional stuff is slower coming round. I didn’t realize how tense I was until I started to recover. I’m back to being fairly calm now. The night sweats are a little better but still having nightly attacks. I hope you are able to get through this quickly. The waiting is really hard(ask Susie!).

      Jane L

      • Hi Jane and well done on your surgery xxx As you say it can be years before they find out what the problem is. I had treatment and CBT for depression ect ect I knew I wasn’t depressed as I had it for a lot of my life! Anyway…ask to have your VitaminD tested now. It is probably very low.
        I can now honestly say after just a few weeks, I actually am feeling better, taking these Calcichew d+ pills. My confidence is coming back, I am not so scared and nervous, and even been out walking on my own. All these had become a real problem !!!! I can’t believe it is just the Vit d, but I am not doing anything else?? I am almost feeling normal lol still some pain in the feet and ankles , but so much better.

  45. Hi, My name is Jane and I was diagnosed with Parathyroid disease last year after suffering from two episodes of kidney stones. Looking back, I had’nt been well for the past ten years, joint pain, tiredness, muscle weakness etc.
    I was referred to Alison Waghorne, a Consultant based at Liverpool Royal Hospital and underwent minimally invasive parathyroid surgery in June 2012. Although I am feeling much better and have lots of energy,things are still not right. My parathyroid and calcium levels have returned to normal however I am still experiencing severe hot flushes and some emotional disturbances (crying and bouts of sadness).
    I cannot tolerate any wheat and eat a gluten free diet – I have been tested for coeliacs disease however blood tests are all negative (this is likely to be because I have not eaten any gluten for the past ten years). The Registrar who is following me up at the local hospital is being less than helpful and advised me that I would need to eat wheat for six weeks and then have a repeat blood test. There is no way I am going to be doing that as I will be very ill.
    Just wondered if anyone else out there has dietary problems that could be linked to wheat or gluten?

    Best Wishes
    Jane

    • Hello Jane,

      Good to hear you got to see a good surgeon! I have Alison Waghorne on my list of minimally invasive parathyroid surgeons – Liverpool Royal seems to be something of a centre of excellence for thyroid/parathyroid surgery. How did you find the care there and the skill of your surgeon? It’s always good to get feedback from those who’ve been under the knife with a particular surgeon.
      On the intestinal problems, I have to say that 13+ years of having undiagnosed Primary Hyperparathyroidism reeked havoc with my digestion. Abdominal pain, acid reflux/heartburn, excess stomach acid, food intolerance, IBS like symptoms. I was chugging gaviscon for years then had to move to acid blocking tablets just to keep food down. I have now found that all those symptoms have gone post surgery. Could it be that your digestion problems could have been caused by the PHPT and you may now be able to tolerate gluten? Just a thought. obviously you’d have to explore this with your doctors.

      Best wishes,
      Simon

  46. Hi Elaine and Jane welcome to the blog,
    The waiting is very hard Elaine, I know how you feel. I was diagnosed last August, but as with all of us on this blog, I have had symptoms of PHPT for some years now, but it wasn’t recognised as such. To be fair on the doctors, I didn’t make a fuss until recently. I kept putting my problems down to the menopause. At the moment I am also struggling with tired legs plus some pain and stiffness (like Simon used to do I have to use my arms to push myself up from a chair). I also have days when I feel fragile, weepy and foggy headed. At the moment my bowel problems are worsening and it’s getting antisocial. I occasionally get stomach cramps and always have loose frequent stools, plus lots of wind, in fact I think I could power the whole of the South West with wind power. Umm, lovely conversation starter.
    I could go on, but won’t.
    XXX Susie

    • Classic symptoms sadly, don’t we all know. Shame the “Professionals” don’t see it as the same thing xxx My sincere sympathy to all who are still suffering xxx

      • Hi all,

        Finally met with my surgeon during the week. He seems fine so far! I have to have another scan (ultrasound of neck) my pre-op assessment and then I’m good to go. So fingers crossed within 7 weeks I’ll be done and dusted :)

        I have overdone it this week – took the week off work and have been catching up with friends but am now totally done in so am spending the next 2 days doing absolutely nothing before going back to work on Tuesday. I had forgotten how tired and sore I get! However it has been worth it :)

        Hope you all have a fabulous Easter and the bunny brings you much chocolate :)

        Kaz xxx

        • Hello Kaz,

          Great to hear you’re not far off surgery, you’ll be surprised how quickly it comes round once you have a date.
          You’ll soon be back to your old self, I still can’t believe just how much better I feel now compared to before surgery.
          Keep us posted!

          Best wishes,
          Simon

  47. Hi Kaz,

    Good to hear your news and that the surgeon seems fine. It does seems as if we are neck and neck as far as the surgery goes. I have yet to get an appointment to see Mr McLaren. He is in the process of getting my notes, scan results etc from Bristol, so hopefully it won’t be long now.

    Happy Easter to everyone.

    XXX Susie

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