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It's not hyperparathyroidism, it's low vitamin D

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Little Audrey
Amanda Lynne
Meggy
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It's not hyperparathyroidism, it's low vitamin D Empty It's not hyperparathyroidism, it's low vitamin D

Post by Meggy Mon Jun 09, 2014 7:18 pm

According to a gp anyway who says I have never had high calcium (his surgery referred me!). I have no bloods back from my last tests but have some from April 1st (read into that what you will!). Only problem is I can't make head or tail of them - help!

I'm assuming the range next to each figure is the normal range?

calcium is 2.58mmol/L (2.50 adjusted) so normal?

Phosphate 0.74mmol/L Range 0.8 to 1.5

25 Hydroxy Vitamin D <20 Range should be > 75

Parathyroid hormone 41.4omol/L Range 1.3 - 6.8

I can see why they want me to take Vitamin D supplements. The plan is to take 20000 unit capsules of colecalciferol 3 times a week for 12 weeks then repeat bloods.

2 questions, 1) why has it taken over 2 months to realise my vitamin D is low?

2) Why was I treated like a fraud?! *I* didn't make up a raised calcium level; it was my consultant who said hyperparathyroidism, not me, I didn't self diagnose, I was just happy to get a diagnosis that wasn't dementia. I don't care what it is, if it IS vitamin D deficiency causing my problems I don't care, just find out what caused it and sort it out.

Oh well, rant over. I did see my referral letter on screen, I was described as pleasant:-)

...or perhaps it was peasant!

Meggy

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Post by Amanda Lynne Mon Jun 09, 2014 7:45 pm

Oh Meggy
These GPs are useless I can't understand why it has taken this long to decide you have low vit d.
You would need to know what range the lab you had calcium done at works from, some are from 2.50 some 2.55 and others 2.60.
I think that is quite a high dose of vit d and it could raise your calcium and as it's not low ATM it could push it into the high range.
Also with a high dose of vit d you can get some symptoms so keep an eye on that and go back to your GP if you are not sure.
As for why they made you feel like a fraud, I think many of us have experienced this and it's awful, you are not a fraud, you are unwell and it's their job to investigate that and hopefully find out what is wrong.
I'm sure you are pleasant and not a peasant. Very Happy 
Amanda xxxx
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Post by Little Audrey Mon Jun 09, 2014 8:48 pm

Meggy, if your calcium is 2.58, I would think your PTH should be lower than 41.4. I always have to convert UK numbers into US numbers so I can better relate. Your calcium of 2.58 would be 10.3 here in the US. I had a calcium level of 10.3 twice before surgery. The first time, my PTH was 36.3. The second time, 1-1/2 years later, my PTH was 68.0! I think your vitamin D is low because your calcium is as high as it is. In my opinion, taking vitamin D is not going to help your situation any, and it's not going to take care of the problem. My doctors prescribed 50,000 IU of vitamin D twice weekly, when my calcium was 9.8, PTH 112.0, and vitamin D was 34. It did not help at all! Three years later I had 2 parathyroid tumors removed! I guess you're going to have to go through the same darned thing before your doctors realize you DO have hyperparathyroidism.

Not much you can do but keep smiling and keep marching. Eventually, someone will figure this out and help you. In the meantime, we're all here to cheer you on!

Audrey

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Post by Meggy Mon Jun 09, 2014 8:55 pm

Thanks everyone, my hope is that, although my endocrinologist had requested this, he had previously mentioned that is need surgery so I'm going to do add they say but go back if the symptoms worsen at all. Just feeling a bit stupid to be honest and a bit of a fake. Bone scan was fine by the way:-)

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Post by Brigitte0 Mon Jun 09, 2014 9:05 pm

I think most of us have some sort of a problem with Vitamin D deficiency; it seems to be a recurring theme. I took 50000 iu of Colecalciferol for 6 weeks and am supposed to now go onto a maintenance dose... but the Chemist can't get it so I can't take it! I'm still waiting to find out the results of the blood tests but the Endo "is unavailable" which isn't helpful as I don't know what's happened to my levels and nobody will tell me anything! Grrr!! This whole disease is about keeping you guessing.

Take courage from being pleasant (not peasant)! Keep your chin up.

Love
Brigitte x
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Post by Tigerlily Tue Jun 10, 2014 4:18 am

calcium is 2.58mmol/L (2.50 adjusted) so normal?

Phosphate 0.74mmol/L Range 0.8 to 1.5

25 Hydroxy Vitamin D <20 Range should be > 75

Parathyroid hormone 41.4omol/L Range 1.3 - 6.8

Hi Meggy

Your calcium is close to the top end of some ranges (but as it is still "within range" they would regard it as "normal") and your phosphates are low, which is often the case in hyperparathyroidism. Vitamin D deficiency is often an associated factor in HPT.

Is that PTH level correct, by the way?      Or is it 4.14? 
If it's 41.40 in UK (and not US) units, then it is extremely high.
Was the blood taken late in the afternoon?

Love from Tigerlily xx

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Post by Meggy Tue Jun 10, 2014 6:14 am

I looked on Dr Norman's site and am in the blue cloud for hyperparathyroidism, just. Just wish I knew my calcium levels in December when my gp decided to refer me as this doc said I'd never had high calcium. The PTH is correct and it was an early fasting blood (didn't need to be fasting, just didn't have time for breakfast first!).

I have a sneaking suspicion this doc is a berk but will go with the flow for now. Being pleasant again you see:-)

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Post by Little Audrey Tue Jun 10, 2014 4:54 pm

Holy cow, Meggy, if your PTH is 41.4 in UK numbers, that is TERRIBLY high!!! Wow!

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Post by Tigerlily Tue Jun 10, 2014 6:21 pm

That is a high PTH, Meggy, especially so early in the morning - an early fasting PTH test is regarded as the best in some quarters; PTH creeps up during the day as you get moving and peaks at about 2 am, I believe. (Correct me if I'm wrong, someone, please. I don't want to pass on incorrect info.)

Has the consultant referred you back to the GP to do the Vitamin D suppplementing ?
Have you asked at the surgery for a copy of the consultant's letter that he wrote to your GP after you saw him?

20,000 iu Vit D3 3x per week is what is usually recommended, but I agreed with my GP to raise the Vit D very gradually at 4,000 iu per day and had regular 2-3 weekly blood tests of Ca/PTH/Vit D to check that this amount would not send the calcium too high. In the end it peaked at 2.73, so taking just the smaller amount of Vitamin D did raise my calcium, which is always a possibility. The body doesn't like the calcium to be too high.

If you are seeing your GP anytime soon, you might ask him if that high PTH level is OK with him, being around 6x the top of the laboratory range. Mine was 12.7 recently (2x the top of the lab range) and I was rather worried about that.

And see if the consultant mentioned that high PTH level in his letter back to your GP.

I'd be interested to hear what both of them think of that high level.

Love from Tigerlily xx

PS Loved the bit about being happy with any diagnosis that wasn't dementia - that's a classic!!   cat  cat  cat  cat  Four cats for that!

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Post by Meggy Tue Jun 10, 2014 8:20 pm

I am rubbish at this, was so pleased with myself for asking for a copy of my bloods but didn't realise I wasn't given the most recent ones! Interestingly (for me anyway, the rest of you are probably glazing over!) My consultant contacted me after that set to say he was worried about the low cortisol, no mention of the vitamin D levels which now, 2 months later, need treatment.

Pharmacist did have some stock of tablets in but thought I was to have 20000 3 times a *day*, glad I read the prescription, 3 times a week should be enough I think. He also thought I should take 3 in one go whereas I thought one tablet on 3 different days would be better. Just taken the first one... ok so far:-) Mind you, the pharmacist told me there were no side effects at all to be aware of - Google here I come!

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Post by Meggy Tue Jun 10, 2014 8:21 pm

And how do you do the cats? I am *so* jealous!

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Post by Little Audrey Tue Jun 10, 2014 8:53 pm

Meggy, if you click on the little smiley face above the message box where you are typing, there are all sorts of emoticons to choose from. Just click on the ones you choose.

Audrey

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Post by Meggy Tue Jun 10, 2014 8:55 pm

I think its cos I'm writing on my phone, it doesn't like my smilies:-( You'll just have to post extra!

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Post by Lucycatnaps Tue Jun 10, 2014 8:58 pm

Hi Meggy,
I totally understand how you must be feeling, it just seems to me to be so subjective on how everyone gets treated, same symptoms, different people different doctors and varied outcomes!  I am just sat in limbo at the moment, waiting for my next appointment mid July in which I am sure he will start me on Vitamin D as well.  I have not had my D levels tested yet, have the form to get it done the week before my appointment so will see what it is then at the height of summer.  I've been out and about today and tonight the thirst is really bothering me.  Still no news on when they are going to do the FNA on my neck lump.  I can't do kitty pics either, maybe just as well as am looking after my daughters 2 cats as well as my 3 whilst she has a new roof put on her house. Please let us know how it goes as I am very reluctant to have to take it but it seems to be the only way I can disprove this FHH diagnosis.
Hugs Sue
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Post by Little Audrey Tue Jun 10, 2014 9:03 pm

Ok, Meggy, just for you.  cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat cat 

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Post by Little Audrey Tue Jun 10, 2014 9:08 pm

Well, Sue, don't be discouraged if your vitamin D turns out to be low, and your doctor prescribes D supplements. There's a good chance you will be told you have secondary HPT, due to the low vitamin D. This happens to so many of us!! It happened to me too! I finally told my doctors there were wrong, and I was not going to take it any longer. Aren't I a little rebel?  bom  I hope they have all learned from my case. Probably not, but it would be nice.

I'm so sorry so many of you are struggling so badly to get that diagnosis. Believe me, I remember the feeling well! Don't give up! Your time is coming!

And I just noticed that you also said you can't post any cats, so here are some for you too.  cat  cat  cat  cat  cat  cat  cat  cat  cat  cat  cat  cat  cat  Oh, I do love cats!

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Post by Lucycatnaps Tue Jun 10, 2014 9:10 pm

Cataclysmic Audrey!
Sue
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Post by Little Audrey Tue Jun 10, 2014 9:13 pm

Good one, Sue!!!  Laughing 

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Post by Jasmine2 Tue Jun 10, 2014 10:40 pm

Keepin' it fair for us dog lovers - dogtastic!

J
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