High Calcium, High Parathyroid blood readings

Jill - if you google parathyroid dot com (or calcium parathyroid vitamin d) you will find a resource from a clinic in the US that specialises in parathyroid medicine/surgery. It is written in simple English (some of it a bit basic for my liking but it is aimed at Joe Public) so is easy to understand.

They say that if you have high calcium and high normal/high parathyroid hormone (PTH) levels you will also have an abnormal bit of parathyroid tissue. Vit D, they say, is low as the body's attempt to get the blood calcium back to normal by preventing it being absorbed in the gut. Dealing with the extra PTH secretion will bring the vit D level back to normal. I don't think anything you have done has had any effect.

The calcium comes from 3 different places including from your bones - as a result of the action of the extra PTH in your body. Remove the extra PTH and eveything will go back to normal. The US clinic is a bit scathing about the lack of knowledge on the part of endocrinologists and other doctors who see very very few cases (like PMR it's not a common disease) but yours seems to be totally on the ball looking for a growth on the parathyroid glands.

This is actually one of the primary reasons for our needing to be monitored whilst on steroids - looking at your blood levels will catch things like this easily enough. Having high calcium levels in the blood isn't actually very good for you so good on your doc for pouncing on it!

Do keep us up to speed with how you get on - you'll be glowing gently for an hour or two for the scan :lol:

EileenH

Each day, I thank (all the Gods that people believe in) for meeting up with Eileen.

Eileen perhaps you were meant to get PMR to help us out. (OK Tongue in cheek) I would not wish it on my worst enemy. :twisted:

Thank you for that MrsK - with friends like you ... :lol:

My latest escapade is to have torn my knee ligaments! :oops: It doesn't hurt as such unless I stand on it the wrong way and even then it's a sort of strange icky feeling rather than what I would call pain! Most inconvenient! At least it's the right end of the ski season but I won't be walking far for a while or driving since the brace restricts bending movements considerably. Back to the beginning of the bad PMR and learning to adjust - hope I can remember the procedure! :wink: :roll:

Greetings from a roasting northern Italy - 23C. In April, for goodness sake. What is to come I ask myself.

EileenH

Ouch Eileen! I tore my cartilage aged 8 and it's been a real pain in the (knee!!) eversince, so you have my sympathies. Fantastic weather here in Basingstoke. Actually had to move into the shade whilst gardening and I lived in the dust bowl called Spain for 10 years, so should be well used to it 8). Hope the knee heals quickly.

Lizzie

I agree with Mrs K! Lucky we have Eileen! Sorry about your ligaments Eileen - I thought that was very painful??

This has prompted another question. You say about routine blood checks while on steroids? I saw my GP this week and asked if there were other routine tests I should be having and could I have a Vit D test. His response was that

1. They don't like doing Vit D tests when you are on supplements already and its complicated and very expensive.

2. It wouldnt do any harm to check cholesterol and blood pressure occasionally but thats all.

I've got a feeling I was being fobbed off??

Beev

Hi beev

At first I had ESR and CRP monthly then cholestral , diabetes at least every 6 months and I had full bloods after 2 years I also have my blood pressure checked 3 monthly I now as I am 2.yrs6mths into this bout only have ESR and CRP every 2 months I had a Dexa scan after 6 months We discuss my weight !! as that is the only real side effect I have had She was also monitorring my salt levels as they went down just under where they should be but back to normal now I also have my eyes checked once a year for Glaucoma My Dr does seem to have a sort of a tick list on the Computer she refers too when she sees me

Eileen I am so sorry about your knee another pain to deal with !! Only 23 deg the sunny New Forest for some unknown reason hit 25deg today !! It is now bound to rain all summer

Hope everyone is OK

Mrs G

If you'll excuse the expression: BOLLOCKS!!!!

Vit D testing is not that expensive - you don't do it every week. Not every lab does it but that is something different. Why shouldn't it be done if you are already on supplements - you need to know if they are having the desired effect and boosting low levels. That statement is rubbish.

If you are on longterm steroids you need blood sugar, calcium, full blood counts and a few other things checked regularly, along with BP and (really, weight :-( ) I know, I know! MrsK will probably tell me the other things that need to be kept an eye on - I've quoted this off the top of my head.

Frankly, if he hasn't been keeping an eye on you he should be reported and, all things considered, I'd have definitely been looking for a replacement rather a long time ago. Long term steroid use is fraught with problems - we've discussed that enough. If the GP doesn't keep an eye on you he won't know if you are having problems - especially some of the more obscure ones. Did you read the House of Lords debate? That Lord's family member had not been monitored properly - signs of Cushing's syndrome are a mega signpost to get someone off steroids asap. It seems to have been ignored. It's laziness at best and medical negligence at worst with potentially serious consequences.

Grrrr! Oh BTW - ligaments is extremely painful when they are pulled. Mine are snapped - very little pain!

EileenH

Hi Eileen, Sorry to hear about your knee but glad it’s not painful and will be better in time for the ski season. I hope it won’t cramp your style too much.

Thank you for the information and the website. You’re right about my doctor – she’s a gem, supports me in trying different approaches, but knows when to draw the line as she has done with this and was very gentle in the way she built up to giving me the whole picture.

The endocrinologist she’s recommended does 450 parathryoid operations a year. But they don’t do the radio guided MIRP procedure here in Australia. At least I haven't found anyone yet. It will be a full general anesthetic and 1 or 2 days in hospital. The US website says mini surgery is a 20 minute procedure and you’re ready to go home after an hour and a half. Quite a difference?

Sun's up, or would be if there weren't a solid blanket of grey over the sky. Might have to go for a walk later. Thanks again Eileen and I'll keep in touch.

Jill

Thanx Eileen

You did make me laugh despite the content of your post! :lol: Are you sure you can get away with that word on here?? I bet it's moderated off.

Is there anywhere I can quote to him that details all the tests that should be done? Otherwise, he will just get cross with me - I dont want to get him offside as I think the others in the practice are worse. At least he lets me do my own thing and isnt dictatorial.

I tend to decide for myself when to have an ESR test - and add in cholesterol, blood sugar when I think I should. I will get the nurse to do full blood count and calcium next time as well and get her to check my BP too. I get my eyes tested every year at the Optician because my mother has glaucoma.

Yes, I did skim the House of Lords debate. I have informed myself a lot by researching things online and by this forum so I hope I would be aware of such symptoms.

Take plenty of red wine for the ligaments.

Thanks again

Beev

Beev

If you either go to www.pmr-gca-northeast.co.uk or google British Society of Rheumatologists and look for the BSR Guidelines on PMR issued June 2009.

Print them off and have a good read.

In the diagnoses part - you will find that a Vit D test should be done, as part of the exclusion tests.

Also look for the thread on here called Vit D - just use the search experience box on the page you are on.

Do not let him intimidate you. The Vit D test is not expensive, what is expensive is if your test comes back low, then the Vit D called Dexetrol is expensive and has to be imported from German and you need up to 40000 units per day till your level comes back up.

Vit D deficiency causes aches and pains - just like PMR, which is why it is in the exclusion tests.

How do I know all this, well after long time on steroids for GCA, I got aches and pains, thought oh no this cannot be PMR as I am already on steroids. It was not - it was Vit D deficiency.

On the website are news letters and in the last one, their is an article on Vit D.

We have enough to put up with, having PMR and/or GCA without unhelpful GPs. But we just have to keep on educating them in PMR & GCA.

Beev - I asked the GP here what she thought was essential and she said blood sugar, cholesterol, weight and BP were things that should be done regularly and a full blood count and the other things (electrolytes and calcium, liver enzymes) should be done now and again. By regularly I think she meant 6-monthly, the rest annually. The rest, she said, were not directly to do with the steroids but part of keeping a good eye on a chronic disease process. I did see one recommendation on the internet that blood sugar and BP should be done 3-weekly in longterm steriod patients but that does seem a bit OTT! And if it applies, obviously ESR and CRP - but that would be a waste of time in me!

As MrsK said, these are things that are supposed to be done at the outset: noone should be started on alendronic acid without the calcium and vit D levels being known and sorted out if they are low purely and simply because the AA can't work if the vit D and calium levels are not adequate. So there are probably quite a few people taking the stuff to no good end. And anyway - you shouldn't give calcium supplements without knowing if the patient actually already has a high calcium. Lots of patients with PMR present with a mild anaemia - you can't tell that without doing a blood test (although my MIL's doctor thought looking at her eyelids was good enough - we had it established the accurate way: her haemaglobin was 4.7 g/l, normal in a woman is about 12!). No wonder she was breathless - and what had he done? It's your heart he said, here, take this digoxin. Which needs careful monitoring to get the dose right, just like warfarin - he'd never taken a blood test!

This was a few years ago - but there are still docs who won't do a blood test, mainly it has to be said, older ones. On the other hand, some are too dependent on the results as we know when told we can't have PMR, the bloods are normal.

What is the most important aspect, though, is the continuing care aspect, to SEE if the patient is developing the signs of Cushing's syndrome, or if their skin is getting very thin and damaged. A patient living alone may not obviously be mentally affected by the steroids (uncommon, but it does happen) and the older generations have traditionally been reluctant to seek out their doctor for something they think is unimportant. If the doctor sees you and checks you out properly before you can have your prescription the risk is minimised. Doesn't have to be a doctor - the nurse can probably do it better. Most rheumatology patients do have a nurse practitioner who knows more about living with their disease than the docs do - we tend to be under our GPs so it is their responsibility.

BTW - didn't know red wine was good for ligaments - but its good for most things, so why not! :wink: :lol:

EileenH