The Parathyroid Forum

[LoriO]

I was diagnosed after I passed out at the gym and fell and hit my head giving myself a concussion. Went to the ER to get my head checked and when they ran blood work it came up showing high calcium. I was told to follow up with my GP and then my GP had me go see my endocrinologist DR after another round of blood work showed high calucium again.

[AOLFAN]

Have been diagnosed with HPT but at the moment they are unsure if it is primary or secondary. I was diagnosed with fibromyalgia after years of pain, fatigue, bp spikes, GORD etc and figured that was that. Suddenly 6months ago my bp spiked at 200/110 and I ended up in the emergency dept, where a doc checked my calcium which was 10.68. Following that my GP checked my PTH (114) and vit D which was less than 8 and sent me for the parathyroid scan(which showed no adenoma but said my right side was more reactive than my left). I was referred to an endocrinologist who diagnosed me with vit D deficiency, so I have been taking vit D for the last few months and feeling worse and worse. I contacted a surgeon myself who saw me today and is sending me for a Fasting Bone Metabolising Study test - anyone know what that is? Apparently the results of this will tell him whether my HPT is secondary caused by vit D deficiency or primary due to a parathyroid tumour.

My results have fluctuated all over the place over the last few months Calcium 10.68, 9.2,9.6,9.8 PTH 114, 50, 68, 22 Vit D increased from 8 to 20 where it has stayed no matter how much vit D I take.

[Admin]

Hello AOLFAN,

Your blood results are all over the place so I'm not surprised that they're not entirely sure what the cause is. The 10.68 calcium in conjunction with the 114 PTH looks like Primary Hyperparathyroidism blood results, but then your most recent 9.8 calcium / 22 PTH looks more normal. Hopefully the bone metabolism test will help them come to a conclusion. I see in your other post that your scans were negative, mine were negative but I still had a tumour in there - scans should not be used to diagnose, just be used to tell the surgeon where to find the tumour. I hope that they're able to get to the bottom of it. Keep us posted and just shout out if your have any questions or want to have a good old moan.

Best wishes,
Simon

[AOLFAN]

Thanks Simon

I think the hardest thing for me is getting family members and people close to me to understand how painful this is. It is bad hoping you have a tumour, but that is what I am hoping - at least then there is a chance this can be fixed! I have put on so much weight and I feel like they think I am being fat and lazy - not getting that I can't do the things I used to because of pain and fatigue. Tests are tomorrow, so hopefully will get some answers soon...

[Admin]

Hello,

I know what you mean about family, it is so difficult to get across to family and friends just how unwell we feel. Hang in there! At least the folks on here know what you're going through.

Simon

[LoriO]

Alofan, that is the hardest part of diseases like this. You LOOK fine so it is hard to convince people that there really is something wrong. Hoping you get a good diagnosis soon. Keep us updated.

[sarah]

Hi, I was diagnosed when I was pregnant. I mentioned on my medical history form that I had a four year history of kidney stones and I got this lovely 'mad professor' endocrinologist who decided to make me his pet project. He instantly knew what was wrong with me however my bloods were not giving him the answers he wanted. He persevered as he was positive that he was right and did weekly bloods until finally a few weeks in there was a very slight fluctuation in the results. He got me a scan and it showed I had 2 tumours. They operated on me at 30 weeks pregnant, removed both affected parathyroids and put metal clips on the others so that they could be easily located in the future. They were really concerned about operating at the right time as they said it could bring on labour so they couldn't do it too early but didn't want to leave it too late as it would have meant that the baby could have had problems in that her body wouldn't have been able to regulate it's own calcium, she would have suffered fits and had to take calcium and vit d for her entire life. The operation went well, I was still pregnant when I woke up and Isabelle is now nearly 6 and thankfully is fine. I noticed an instant change in myself and things I had just learnt to live with and not really taken much notice of such as nausea at night time, dizzyness in the morning, itchy shins, frequent trips to the loo and the most weird one of all, whenever I ate cheese all the hairs on my arms would stand up, I would get goosebumps and I would sweat profusely at the back of my neck and on my arms, all of those things stopped almost immediately. My Mum also says I became less irritable. I never even realised they were symptoms until I looked back. Then a few months later came another kidney stone and so it continued. I was referred back to the endocrinologist who didn't even have the decency to see me himself but just got one of his trainees to tell me that he had cured me and they must just be residual stones. Each time a stone came I went back to the doctors and was finally referred to a urologist who wasn't interested in why they were there he was just interested in getting them out and booked me in for lithotripsy, by this time Isabelle was nearly 3 and I had a 3 month old baby boy. The lithotripsy didn't actually break down the largest stone I had but seems to just put cracks in it, which in effect just made it bigger and it took me four months of agony, diclofenac, paracetamol and codeine (which causes the worst constipation in the world and also doesn't really want you to stop taking it when the time comes that you don't need it anymore, deciding instead to leave you with crippling withdrawal headaches and insomnia for a few weeks) and feeling like the most useless mummy ever before I finally passed it. I was scanned and told that my kidney (always the left one, have never had a stone in the right one) was finally free from stones and it felt great to know that it was all finally over, 8 years of it finally finished, until another one came, allegedly one that the scan must have missed, and then another and another! This time the doctor tested my bloods which he said were fine and told me that I should try a low oxolate diet as this is what could be causing the stones! I looked at the list of foods, hardly any of which I actually eat and felt completely let down. I tried to explain that the endocrinologist had needed to test my calcium and pth levels weekly for a few weeks before he had found any evidence but he just told me to try the diet so I went away, tired from all of it and feeling like I was banging my head against a brick wall. It is apparently extremely unusual for women to have this condition so would it not be a miracle to have been cured and then have something else start to cause stones made up in exactly the same way as the old ones!!!!! A year passed and I appeared to be stone free, although the cheese thing has started again, the night nausea, frequent need to pee and itchy shins, all of them nowhere near as bad or as frequent as they were before but they have returned nonetheless. Then 6 weeks ago I passed a stone out of the blue, no renal colic, just went to bed feeling like I may have cystitis and passed it when I woke up in the morning and then 2 days later my urine looked like pure blood and then the renal colic started and the diclofenac, paracetamol and codeine got brought out from the back of the cupboard and am still waiting to pass it. This time I am not letting things lie and am not going to be fobbed off. They wouldn't have put metal clips on my remaining parathyroids so that they could easily be found in the future if there wasn't a possibility that they could go wrong. I thank the endocrinologist for being so fantastic in diagnosing me initially and ensuring my beautiful daughter was born healthily but I think he was extremely arrogant to get someone to tell me I was cured and just dismiss me like that. I had my bloods done on thursday and a kidney scan on friday which revealed that my left kidney is full of stones and calcified. I am due to go to the doctors at the end of the week to get the results and I am sure that they will say that my pth and calcium levels are fine. This time I am going to insist on weekly blood tests and a vit d test as I am not sure if they have done that one or not. Sorry, I appear to have written an essay. I hope no-one has dropped off whilst reading! It feels good to have got it all off my chest to people who understand. Thank you x

[Admin]

Hello Sarah,

Welcome to the forum, my god you have been through the wringer! I know exactly what you mean about your blood tests not always indicating Primary Hyperparathyroidism - 75% of my blood test result were 'normal'. I had the same problem but although my endocrinologist was the most pleasant doctor I have ever come across, he did discharge me as okay the first time round (he never mentioned what he was looking for and unfortunately this was the one and only time I had not done my own research). 2 Years on from that I worked it out myself and managed to convince my GP to re-refer me back - another 8 months later and we finally got there. I hope you get to the bottom of it again soon!

Best wishes,
Simon

[Rach]

Hey Sarah! I really feel for you, it sounds like you've had an awful time of it, I hope they soon sort you out again. I too was diagnosed when pregnant. My first trip into hospital was at 22 weeks, I had hurrendous kidney pain. After 3 days they managed to get the pain under control and I was allowed to leave. It happened again at 37 weeks pregnant, this time the pain was absolutely unbearable and it lasted for days. Thats when they diagnosed the hyperparathyroidism. They think I passed a stone whilst I was in hospital and after 6 days I went home again...then returned a day later and had my son 2 weeks early! Hehe! The doctors at the hospital said they wouldnt do anything whilst I was pregnant, my son is now 5 months old and Im still waiting for my op, but after reading your post Im worried if he's ok after me having this high calcium for my whole pregnancy. When I went into hospital my calcium level was 3.12, so really quite high. Should I get him checked out? Also, as I've probably had this high calcium for a while, Im wondering whether my other son, whose 2 tomorrow, is ok? Im a bit concerned now. I hope you soon feel better Sarah, I found the kidney pain was excruciating and worse than labour, so I really feel for you. Luckily I havent had any major pain, but everytime I get kidney twinges I fear the worst! Take care, Rach

[sarah]

Hi, I would think that it they both seem ok then you shouldn't worry too much, although as a mum that's a large part of the job description, to worry! I'm not a doctor and can only go by what I was told by the endocrinologist that I saw. I would have thought that you would have seen signs already if there was anything wrong. I was told she would be prone to fitting and that would have manifested itself quite quickly so I am sure you would know by now. They tested Issie's calcium levels the moment she was born and again a week or so later to check that she was OK. It was just a heel prick test and really quick. It may be worth asking if their levels could be tested just to put your mind at rest. Happy birthday to your little one tomorrow.