Vit D level is unreadable

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I've had 0-5 Vit D for 10yrs & have been on 20,000iu for 7 yrs. I've been ref to Endocrinologist in June ; last time I was ref to Endocrinologist all they said was that I needed to get Vit D levels up . I'm worried this new referral will also be waste of time. Has anyone else had similar experience ? Thanks

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4 Replies

  • Posted

    Hi Lise,

    I'm sorry I've not had this problem.

    It has been estimated that over 90% of the population of the uk are VitD deficient, just not to your extent maybe.

    Can you make sure the endo you see is a different one. Are you in U.K.? If so will you get a Choose & Book referral? If you do, rather than book it yourself online use the phone service to book, as they can tell you who you'll see, which online booking doesn't tell you.

    Sorry I can't help further.



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  • Posted

    Are you taking k2 with you vitamin d3?  K2 the vitamin not the mountain makes the d3 work in your body, without it d3 just sits there and makes you toxic.  You can buy k2 an d3 together with the right formulation,  k2 200 mg, Avec d3 1000.  You would still have to take a high amount but at least you would know it's going to work.  I buy mine at a small vitamin shop it's not hard to find.

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  • Posted

    Hi 1lise29487 I am not a Dr but your vitamin very low if you eat and get enough Sun expose than I think you should get your thyroid check I have low Calcium and vitamin , mri show that I have 2.6cm nodulê on my thyroid, just go see endocrine Dr ,goodluck

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  • Posted

    Hi Lise - I'm sorry you're suffering with Vit D deficiency as the symptoms can be horrible. The last respondent is correct - you prob have high Calcium as well as low Vit d and should see a consultant

    I think there IS a very good reason that you're GP is referring you back to the endocrinologist and it may well be important and not a waste of time. It will have nothing to do with Vit k or absorptiom of Vit D.

    When bit D levels persist in being low despite a high dose supplement then doctors have to look at other reasons for your body not keeping the Vit d level steady. Needing a supplement for 7 years is quite worrying and I'm concerned that your gp hasn't referred you sooner - when was your last appointment at the endocrinologist?

    Leaving aside Vit d deficiency caused by lack of sun or diet (which cannot be the problem because you are taking 20,000) units) the other most significant cause of low Vit d is a high calcium level. Has your GP mentioned your calcium level, or perhaps your phosphate levels?

    There is really only one cause of high calcium/low Vit d (other than kidney failure) and that is something called hyper-parathyroidism. This is nothing to panic about - so don't start panicking 😊

    Hyper - means 'too much'

    Para - means 'near to'

    Thyroid - means your thyroid gland in your neck.

    So all together hyperparathyroidism means you have TOO MUCH of something being caused by a gland NEAR to your THYROID gland. Basically we all have 4 glands in our necks which are near to the thyroid and these glands are called PARATHYROID glands - most likely your parathyroid gland(s) are producing to much hormone which is what caused the high calcium/low Vit D

    One of the sole purposes of the parathyroid glands is to maintain a steadily level of calcium in your body - low vitamin d levels indicate that one or more of the parathyroid glands has developed a benign lump and it (or they) are allowing too much calcium into your body.

    So that's why your gp wants you to go to the endocrinologist again - because she suspects hyperparathyroidism- an

    illness which is quickly and easily cured by removal of the enlarged parathyroid gland(s)

    You may also have some symptoms that are vague, or perhaps severe. Typically you will feel achey and tired for no obvious reason. You may have been told you have ME or fibromyalgia. Possibly you have had a kidney stone, or lots of heartburn/indigestion/ diarrhoea or constipation, have you been feeling very thirsty but not very hungry? And maybe you've broken bones by doing nothing very strenuous - low impact fractures are also a warning sign of hyperparathyroidism.

    I have hyperparathyroidism and am awaiting an operation - if you want to ask me any questions then please do, and I provide a link below which is to an American website which explains how low Vit D and high calcium are related. There are good support groups in the U.K. but the US website explains it all very well.

    Additionally they have an App symptom tracker which you can find in the App Store - it costs £2.99 and you don't need it now, instead just keep a record of your Vit d and calcium levels whenever they are tested - ask your gp to write down the numbers if you are not confident.

    I would seriously advise you not to miss your endocrinology appointment - hyperparathyroidism is quite rare and there can be all sorts of twists and turns in the diagnosis of hyperparathyroidism so keep track of your own Vit d and calcium levels and see the consultant to discuss them - between now and your appointment start to read about Vit D and calcium and of course hyperparathyroidism.

    You can find a lot of really good information for patients at parathyroid com and as I said, ask me questions if it will help.

    Don't be frightened - surgeons call parathyroid surgery "the quickest operation that makes people feel better the quickest" and if you are feeling rough you can pretty much expect to be well again once the offending gland has been removed. On the other hand ignoring the condition will start to produce serious problems after 25/30 years - so you have plenty of time - but it would be better to get it sorted out in June. 😊


    *Keep records of your Vit d and calcium levels (and the dates they were done)

    *Inform yourself

    *Keep your appointment

    Good luck. 😊

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