The Parathyroid Forum

[john b]

Hello!
I'm from the Uk and have recently had my calcium serum levels tested which has proved to be elevated at 2.7mmol/L then 2.69mmol/L two weeks later. On testing my parathyroid hormone level, it too proved elevated. In a month, they (the NHS) will again test for calcium levels; I have just submitted another blood test for - I believe - Sarcoidosis.
About eight years ago I started with respiratory distress symptoms; and they tested loads of things and could not give me an answer. In the past 6 or seven months the doctor I am seeing eventually give me a bone profile test to come up with these results; which makes me wonder why they did not do it sooner; actually, it makes me wonder why they did not do it over 20 years ago when I was off work with chronic fatigue syndrome?
My symptoms presently are mainly this respiratory distress (chest pains) when I exert myself, pseudo-gout or pains in my shoulders and knees, tenderness felt when I push the ridge of my shin bones, quickly loose concentration and forget things, apathy, aches down my legs and gall stones. No kidney stones seen on ultra scan, but would not be noticed if small anyway. I think though, the NHS will tend to view my symptoms as asymptomatic and not necessarily proof of Hyper-parathyroid disease.
I think because of my symptoms the specialists will probably take a wait and see attitude, though I know, when you pay privately, a more proactive approach is taken.
I suppose I should try to get the doctor to look at the more symptomatic conditions: looking at kidneys, shoulder joints for calcium, heart... I don't know! Any suggestions?
Thanks for reading!

John

[Admin]

Hello John,

Your blood calcium in relation a high PTH is in my non-medially trained and humble opinion, is a classic case of Primary Hyperparathyroidism.
Whilst it's always a good idea to rule out sarcoidosis with a chest x-ray, in terms of blood tests, blood calcium tends to be raised in sarcoidosis, but, in sarcoidosis, the PTH would be rock bottom, off the scale low, virtually undetectable! Why? Because like most endocrine systems, it works on what's called negative feedback. Blood calcium low - parathyroids pump out PTH to bring it back up! Blood calcium high - parathyroids shut down and stop PTH production in order to lower the blood calcium to normal levels. The only medical cause of an elevated blood calcium in conjunction with an elevated PTH is our old friend Primary Hyperparathyroidism. The major problem with diagnosis of Primary Hyperparathyroidism is that GP's don't see much of it and many of them have not seen a patient with Primary Hyperparathyroidism. I was my GP's first case and he's in his 50's! As such my GP wasn't very good at diagnosing me. Even having a blood calcium at the high end of normal and a PTH at the high end of normal is not normal! When a blood calcium id at the high end of normal - say 2.6 then you would expect the PTH to be at the low end of normal or even lower than the low end of normal.
Primary Hyperparathyroidism is always diagnosed on the basis of blood results and never symptoms. It has to be said though that any endocrinologist worth his salt should be able to diagnose you correctly on the basis of what you've told me.
Symptoms wise, you sound like a mirror image of me!

10 years before surgery, I started to feel generally unwell, especially achy in winter. My ribs would be tender and painful to breath in and out, sneezing was agony!
'pseudo-gout or pains in my shoulders and knees, tenderness felt when I push the ridge of my shin bones' - been there had that, got the t-shirt!
'quickly loose concentration and forget things, apathy, aches down my leg' Had all that, had to quit my business and am just in the process of starting back up! As I like to put it - 'I became very stupid very quickly' - besides the memory problems - thinking things through became a real struggle.
When you finally get to see a consultant, concentrate on the bloods - it is never ever normal to have a high blood calcium and when in conjunction with a high PTH, the only diagnosis can be Primary Hyperparathyroidism. The only cure is surgery and the sooner the better. It is possible to short cicuit the system and go straight from a GP to a surgeon - my surgeon (Mr. Andrew McLaren at Buckinghamshire NHS) will accept patients on basis of blood test results and a letter from the GP. Once you're under a surgeon - they will sort you out. Medical endocrinologists can plod along and leave you hanging. My medical endocrinologist was willing to let me wait and get sicker, but I had done my homework and already e-mailed my surgeon. My medical endocrinologist referred me back to my GP with the diagnosis of 'Mild' Primary Hyperparathyroidism and I got my GP to refer me to McLaren for scans and surgery.
Do your homework, don't take no for an answer, line up a surgeon if you can and you'll get there. Any questions, just shout out! I've been through it all before - the misdiagnosis, the ignorance about how this condition can make you feel. Where abouts in the UK are you? You may have a good team on your doorstep.

All the best,

Simon

[john b]

Thanks for your time and all that info Simon!
I had some more tests 3 July 12: calcium went down to 2.55mmol/L, maybe because my PTH was 113ng/L they sent me for more tests on 25 July 12; also I was Vitamin D deficient at 30nmol/L
my PTH went down to 89ng/L and my calcium down to 2.52mmol/L.
So in 3 weeks I will have another test as they seem to think it might go down and stay down, or they are trying to work out if there is some trend going on.
However, between the one month interval I have these tests could not these levels have gone up and down several times, and could it not be a game of chance as to whether my next results will be high or low?
So I'm thinking, as I can go to the hospital for the test withing a range of several days, maybe I should go when my brain is foggy and I'm feeling out of sorts.
The last GP I was seeing went to another surgery and I had a discussion with another GP, which did not impress me; he said it's normal for some people to have high levels of calcium.
I feel frustrated.

Again thanks for info!

[Wilson]

I know what you mean John. It is so frustrating and i don't really want an op if its not absolutely necessary. In terms of symptoms i am osteopenic (but could be anyway being post menopause at 52), have rotten short term memory (but my friends say they have too!) with spells of apathy and low mood. It may be due to primary hptd, but then again it could be my age!

I am being monitored while taking 2000iu/day of vitamin d (was also low at 30nmol) as one (!) of my consultants thought that there may be a significant chance that i have secondary disease as i avoid sunbathing as i am fair skinned. I agree with those test results being a game of chance - maybe we've missed the really high calcium blips...! My calcium has only ever been highish a couple of times (2.69.2.71) and same goes for pth; i've also had high normal calcium and mid to high pth. So not a clear cut case although i've had two ultrasound scans which show 'something in keeping with an adenoma' in lower right side of neck.

My gp thinks its just vitamin d deficiency as apparently nearly 50% of uk population is insufficient/deficient - do they all have hptd?!

[Admin]

Hello John,

My lowest blood calcium was 2.45mmol/L at that time my PTH was 69 ng/l (within normal limits) - I had a 2cm tumour removed.
Blood calcium and PTH go up and down continually, the important point is that it would only ever be normal to have a PTH of 113 if your body was desperately trying to get it's blood calcium out of a state of hypocalcaemia (low Blood calcium). Far from having a low normal/low blood calcium - you have an overtly high/high normal blood calcium and so your PTH (if you have 4 healthy parathyroids) should be low normal or plain low. A PTH of 89ng/L and calcium of 2.52mmol/L is still not normal.

Just a few questions - have you seen the endocrinologist yet? GP's are generally useless at diagnosis Primary Hyperparathyroidism - they don't see enough cases to spot it! Any endocrinologist worth their salt will soon get to the bottom of this and send you to a surgeon.

Has anyone tested your calcium/creatinine clearance ratio yet (this is a morning fasting blood test with morning urine sample) - this test will prove Primary Hyperparathyroidism by showing that excess calcium is spilling out into your urine. With no parathyroid tumour, it's not normal to find very much calcium in the urine.

For me, I did find that my blood calcium was at it's highest when I was most unwell, but that may have been a coincidence.
It's only normal for some people to have a high blood calcium - if they have a genetic abnormality causing FHH. FHH is very very rare, my endocrinologist first told me I had this because my blood calcium & PTH were mildly elevated. This was later disproved by a genetic test. Your blood cannot be explained away with FHH as your PTH is too high.
I think the main point is not to expect too much from your GP - mine was useless with Primary Hyperparathyroidism - he knew nothing about it and I was his first patient! The good news is that he has had the good sense to refer you to and endocrinologist - if your endocrinologist doesn't realise what's going on then I'll eat my hat! Once you're under the care of the endocrinologist' the GP will take a back seat and do what the endocrinologist tells him. I've been unfortunate enough to have been under several different hospital consultants - it's then that you realise that GP's are just glorified first aiders and anything other than a sore throat or a rash and it's over to the specialists.
You'll get there soon enough - its the people with bloods like mine that take diagnosing and 2 attempts by an endocrinologist. You should get a diagnosis very quickly. If you don't I know how you can short circuit the system and get straight to a surgeon.
Any questions whatsoever, just shout out!

Simon

[susie]

Hi Wilson and John B.
How frustrating for you both. It seems to me that you are both clear cases of Primary Hyperparathyroidism and that you shouldn't have to wait and see (but as Simon would say, "I am not a doctor") I was lucky as my calcium and PTH were clearly high, but my GP when she referred me said that I was asymptomatic, which I suspect delayed my treatment. She never actually asked me about symptoms, and when I asked her if it could be causing my memory problems, she just said it was my age. I am, however, grateful to her for checking my calcium and PTH, in a routine review of my Vitamin D medication, because if she hadn't I could still be waiting. As it is I am due to have my operation next Friday.
What I want to say to both of you, and anyone else who is in your position, is you need an operation and waiting for it will only increase your symptoms. So, if you need to get a second opinion, or, if you can afford it, go privately, even if it's just to get a definite diagnosis.
XXXXXX Susie

[Wilson]

Good luck for friday's op Susie. You must be very relieved its nearly all over! Please post afterwards to let us know how it went.

[Dave]

Hi John
A couple of comments from my own experience:

1) PTH level is critically dependent on the sample being treated correctly and tested quickly. The longer it sits around, especially if not on ice, the greater the likelihood that the normal decay curve of PTH will give a reading that may appear lower than actual circulatory PTH levels. I've had PTH as high as 252 and subsequently as low as 180. The latter may be due to the time taken to get the sample assayed, rather than a real 25% difference in actual PTH levels. Some GPs suggest that patients actually attend their local hospital for the bloods taking, so that the analysis time is minimised and my GP practice has certainly discussed with me the possibility that I might need to adopt this strategy if they have any more issues with substantial variability of my PTH level.

2) [Ca] will be dependent on your state of hydration. If you drink a lot, you'll pee out more calcium. If you are dehydrated, you'll have a higher reading. My surgeons and GPs advice to me has been to make sure I keep up the fluids (ie water, not dehydrating liquids!) in order to try to keep on top of the calcium, which in my case now sits at 3.1 mM (ie very high relative to "normal" of 2.4!).
Dave