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Vitamin D & parathyroid - how bad are these numbers?

(20 Posts)
LarkDescending Fri 29-Nov-19 15:50:38

I've been a bit surprised to be told by my doctor this week that I am Vitamin D "deficient", having had a non-disastrous Vit D level of 69 nmol/L a month ago, albeit tested by a different lab.

New results are given as follows (plus many others):

25-Hydroxyvitamin D: 51 nmol/L (ref range 75-150)
Calcium: 2.37 nmol/L (ref range 2.20-2.60) (adjusted calcium the same)
Parathyroid hormone: 12 pmol/L (ref range 1.7-7.5)

Doc says the parathyrold hormone is elevated because of the low Vitamin D - clearly the latter is suboptimal and well below this lab's reference range, but is it really so bad as to be deficient? Maybe the parathyroid hormone elevation is insignificant anyway for all I know.

Obviously I am not looking for a diagnosis - got a raft of other signs & symptoms including gastro issues which may be causing malabsorption and are being looked into. But any informed comment on the above would be helpful - doc didn't have time to spend with me on the results.

OP’s posts: |
LarkDescending Fri 29-Nov-19 15:57:35

Female aged 51 (menopausal), in case relevant.

OP’s posts: |
Allthepinkunicorns Fri 29-Nov-19 16:01:38

Yes you are deficient. There is a fab group on facebook which has helped me. Its the vitamin d deficiency uk group. There is lots of useful information.

msmum007 Fri 29-Nov-19 16:09:53

Apparently most of the population in the UK is vitamin D deficient (I think about 40% ish!)! I am deficient too! I have MS and the heat/sun makes me feel unwell and enhances my existing symptoms. He can just give you a simple vitamin D tablet, with calcium in it too, as it’s better absorbed that way. However the powers that be have now also stopped my vitamin D3, as they say I can easily buy that as a non prescription item.
However I already do take them, as part of a multi vitamin tablet, so next time I have blood’s taken, I’m going to ask them to check my vitamin D again yet again, as before I was taking these vitamin tablets which have 300% RDA of vitamin D3, but I was still found to be deficient.

LarkDescending Fri 29-Nov-19 18:05:05

Thanks people. I have actually been taking Vitamin D3 tablets (1000 iu daily) every day for the last month, so it is surprising to see my numbers getting worse rather than better. Given my gastro problems it may well be that anything taken by tablet/food is not being properly absorbed. I have now bought a high-dose oral spray.

I wonder whether anyone has experience with the parathyroid aspect?

OP’s posts: |
msmum007 Fri 29-Nov-19 19:13:56

I wonder if you are taking Calcium too, when you take your vitamin D3 supplement? You need to take it, like you have to drink orange juice to make iron tablets absorb far better. So with vitamin D3, take a Calcium supplement too.
Ideally the best way is to take one that is combined.

BestIsWest Fri 29-Nov-19 19:29:37

I had hyper parathyroid- had an adenoma and ended up having surgery. My calcium was anywhere between 2.7 and 3.1. Had the gland removed eventually after a fight.
HOWEVER. It is possible to have a Parathyroid adenoma and have a normal calcium reading.

There’s a very good FB group - this is their website - you will see that people on there have had normal calcium readings. Ask for a repeat check.
FWIW The Parathyroid could be causing your gastro issues.

BestIsWest Fri 29-Nov-19 19:30:20

Sorry - website
www.hyperparathyroiduk.com/

Allthepinkunicorns Fri 29-Nov-19 20:33:49

If your deficient then 1000 iu won't be enough for you. I was prescribed a dose of 50000iu when I was diagnosed, but I was really deficient. I'm now taking 5000iu a day, which I buy myself.

BellaBraithwaite Sat 30-Nov-19 00:01:45

I was very deficient at 27. Within 3 weeks of taking 4000iu I was at 73. I'm planning to take the 4000 Daily for the foreseeable future. I take it with K2 to aid absorption

So I'd up your daily intake ASAP to 4000 or 5000 a day . You need @Bettertobehealthy as her advice is excellent on this subject

kissmelittleass Sat 30-Nov-19 23:15:17

@BellaBraithwaite where do you buy the K2? I didn't see any in Boots when I looked

LarkDescending Sat 30-Nov-19 23:39:22

I must say I don’t know anything about K2 so will look into that. Am taking calcium in my menopause support supplements and have upped my D3 to 4000iu daily - many thanks for those pointers.

I found the parathyroid site which BestIsWest linked to very interesting. The symptoms of primary hyperparathyroidism read like a catalogue of my last year or so. I am nevertheless hopeful that mine is secondary and can be sorted by getting the vitamin D sorted - will see how that goes!

OP’s posts: |
Flossie44 Sat 30-Nov-19 23:51:17

Really interesting. My dd, aged 11. Has just been diagnosed with hyper parathyroid. She’s had low vit d for years (16) and has taken drops and tablets on and off.

I have no idea about the para thyroid element so am interested to learn. She has low potassium too if this has any significance??

Bettertobehealthy Sun 01-Dec-19 18:34:34

Hi OP ,

It is most likely that your hyperparathyroidism is secondary. Which can be caused by renal problems, long term lithium treatment , mal-absorption of vitamins and minerals, low vitamin D etc etc. There is a 2% chance that you have normocalcaemic primary hyperparathyroidism.Which is sometimes considered to be an early stage of full blown primary hyperparathyroidism.
IF you were to be measured with high blood calcium , then statistically there is a 99% chance that you have primary hyperthyroidism , caused by overactive parathyroid gland or glands (of which you have 4 ) . BUT you didn't have high calcium, so that does NOT apply, unless you subsequently get high calcium levels. Above 2.5 mmol/L, ( at your age.)

Obviously your doctor has the full facts , regarding blood tests, your medical history and it appears from that, he has concluded that you have secondary hyperparathyroidism due to reduced vitamin D

ASSUMING that is the case , and it does seem overwhelmingly likely, then to counteract that cause, you should try to ensure you have sufficient VitaminD3 , in your system, and that you have enough calcium in your diet/supplementation. When this is the case , then your parathyroid hormone PTH , should drop to mid range or even below. OFTEN , in this country , because of the prevalence of low vitD , PTH is higher than that , which can, in some circumstances, lead to osteopenia, osteoporosis and osteomalacia.

You probably know that there is some controversy about how much vitaminD we require to become replete. Many vitaminD researchers say a blood level 100 -150 is optimal. Sometimes you might be told that 50 is ok, more recently 75 has been adopted by some parts of the health service. It is slowly changing , and going up. Which is good. The human natural level is about 120-140 , that's what we achieve when we live in sunshine , as we did for millions of years , in sunny Africa. We evolved to have those kind of levels , we get them now , when we are in that sort of environment. Every cell in your body has a receptor for vit D , 2000 of your genes have vitamin D response elements , you need the right amount , to remain healthy.

FOR yourself ... bearing in mind that you do have absorption problems , then I might suggest you use an oral spray ...this is absorbed direct into the blood stream. It does not go through your digestive system. 4000 IU per day , long term would seem just fine . After about 60 - 90 days , your blood level should settle at it's equilibrium , for that daily supplementation dose . It would then be a good idea to measure, Vit D and PTH , and calcium. This will tell you if you have responded. DO NOT just suddenly stop VitD supplementation , maybe your blood level will come back as 170 , which is not harmful at all, many people reach that in just sunshine. You might like to reduce your daily dose by 500 or 1000 IU , if you are responding so well. You may be a weak responder , some people are. You may need more , say an extra 1000 IU. By taking a measurement you can decide the best course of action . We have a 6:1 variability in our response to supplementation.

When your blood level of vitaminD ( calcidiol) reaches 80 or above , then your gut cells become maximally efficient at enabling the regulation of calcium extraction from your food. Daily you require about 200 mg of calcium , to replace that lost by excretion etc. The efficiency with which you extract calcium from a diet containing say 1000 mg of calcium would then be 20%. IF you are low in Vitamin D , you may not be able to turn up your rate of extraction , it may peak at only 15% , say , THEN , you can only receive 150 mg from your diet , then your bones weaken and donate the rest ( 50mg) , under the direction of a raised PTH level, in order that your calcium blood level continues to remain 'normal'. That is the process that may go on with low vitamin D . You can now avoid it .

IF your diet is low calcium , then it might be useful to increase it.

I have posted quite a bit here on Mumsnet about Vitamin D , have a look at some of my old posts for lots more information . Or get back to me for more info.

Here is one where I explained in more depth about this very important subject. www.mumsnet.com/Talk/general_health/2841497-If-you-are-vitamin-D-deficient-what-have-you-been-prescribed
A long read , but very informative.

Best of luck , hope that was useful. PHEW.

BTBH
.

LarkDescending Sun 01-Dec-19 18:57:10

Thank you very much BTBH - that is indeed (extremely) useful.

I have already been diagnosed with osteopenia earlier this autumn, after 3 low-impact fractures in the summer, so getting to grips with these issues is going to have to be a priority. I have chronic inflammation in what is left of my gut after surgery (and low ferritin and B12) so absorption looks likely to be a problem. I am now on day 2 of high-dose spray supplementation.

I really am grateful for your very thoughtful and detailed response, and indeed to all who have taken the trouble to contribute to the thread.

OP’s posts: |
Bettertobehealthy Sun 01-Dec-19 20:07:28

Hi again Lark ,

you have mentioned that you have osteopenia , therefore you might like to know about some research at Harvard and U. of Nebraska, showing that bone health can be improved by more protein than is usually recommended.
When bone breaks down , in order to donate calcium to blood , it does so by breaking down the collagen matrix ( protein ) and so releasing the mineral content. When bone is rebuilt , ie.repaired , in this case , you need sufficient protein in the diet . current recommendations of 0.8 gram per kilo of body weight , per day , do not seem to be sufficient. It appears , in this research I have mentioned , that those with osteopenia , were able to rebuild bone , with 1.2 grams of protein per kilo of body weight. with the vitamin D levels above 100.
Bones also require magnesium, when rebuilding . boron , being another bone nutrient. Magnesium is a cofactor of VitaminD , it is required when processing VitD . Try to ensure your diet contains healthy levels of these nutrients. i.e. plenty of Greens ,a variety of veg, if you can.
You have mentioned that you have inflammation of the remaining bowel, it would therefore be doubly important, to maintain a blood vitamin D level , where I have suggested. VitaminD has anti-inflammatory properties. It acts upon your immune system , gut bacteria will improve , the levels of helpful bacteria go up and the levels of unhelpful bacteria go down.

best of luck , again

BTBH.

LarkDescending Tue 03-Dec-19 16:44:42

Many thanks, BTBH, for the protein tip. I think I am going to have to ask for a referral to someone who can help me manage to extract as much suitable nutrition as possible from small portions (low appetite/nausea) and without overloading my ravaged & unhappy gut with too much fibre which it doesn't cope with. So much of the standard advice out there presupposes a healthy and anatomically intact starting point - I have had not a single iota of help in real life on this in the 2 years since major surgery, and now am significantly lacking in several key nutrients.

I used to be a keen cook and enthusiastic restaurant diner, but nowadays the issue of food is so loaded with pain and problems that I really wish I didn't need to eat at all!

Thanks again for the thoughtful and very helpful input.

OP’s posts: |
Bettertobehealthy Tue 03-Dec-19 17:28:53

Hi Lark ,

only too pleased to help.

Look here for lots of info re: vitamin D and the gut.

vitamindwiki.com/Overview+Gut+and+vitamin+D

Best of luck again !

BTBH.

LarkDescending Wed 04-Dec-19 10:17:53

Great link - many thanks flowers

OP’s posts: |
Perid0t Tue 17-Dec-19 20:47:40

Hi OP...

It sounds like you actually have normocalcaemic primary hyperparathyroidism. It will have caused your osteoporosis and your vitamin d deficiency.

Look at the parathyroid.com website to understand this properly. It is extremely important you are referred to an endocrinologist sooner rather than later.

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