I seem to have symptoms of this condition and wondered if anyone can help?
I cannot tolerate vit d and I seem to have hypercalcaemia symptoms too. I don’t know if my thyroid health is causing this being not well controlled at the moment or if it is the parathyroid itself?
My recent private parathyroid test and calcium test returned as normal so I don’t understand why?
I see an endocrinologist occasionally and he has never suggested this could be affecting me but the appointments are always too rushed and not thorough with him.
I previously had radio iodine treatment for the thyroid in 2004 but these symptoms only started 3 years ago.
Hopefully, there are people with similar symptoms that may be able to advise.
Thanks
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Sailing14
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I have taken a high dose of vitamin D (5700) over the past week but every other day and my symptoms deteriorated and I have stopped it for now. I really don’t know what is going on but it definitely had an affect taking the higher dose.
I take co codamol 30/500 (2 a day), vitamin D, until I stopped on Saturday and regular paracetamol.
If it is a hyperparathyroid condition, am I correct to stop the vitamin d until I can maybe see someone? Or could my thyroid condition be causing it to go hyper?
Also, could it be hypoparathyroidism and not hyper even though above results are in range?
Some people are so sensitive to vitamin D supplements that the idea of taking 1000 International Units (25 micrograms) would be horrific. Even a 400 International Unit dose (10 micrograms) - usually regarded as being suitable from birth - causes very unpleasant effects.
No matter which form.
No matter which route - mouth spray, swallowed, even topical.
No matter what additional ingredients - active or inactive.
No matter supplementation with magnesium or any other nutritional supplements.
Few foods have appreciable vitamin D content - other than when fortified. Which ends up being just another way of taking a vitamin D supplement.
Virtually nowhere is this issue acknowledged other than in a few very specific issues - overt parathyroid issues and sarcoidosis and one or two other disorders. But as many will confirm, getting anywhere with parathyroid issues can be impossible. Ironically, it seems more likely that they will be diagnosed after a thyroidectomy.
The only obvious option is for those affected to rely on light exposure - sunlight or artificial and accept all the negative effects associated with that - skin cancers being the most widely known. And costs!
I had severe reaction to vitamin D supplements…..UNTIL I corrected low magnesium levels first
I had 4-6 months terrible bone pain as bones remineralised after decades of low vitamin D
My vitamin D was 12nmol at one point
It was 50nmol when I started supplements
I now take 5000iu per day as spray and maintain at 100-125nmol
I even bought a vitamin D lamp (very expensive) and it still caused bone pain …..because it was the level of vitamin D increasing that was the issue ….bones were having to firm up
I used to be to be able to take vitamin D bug it is only the last three years I seem to be affected but if it is a parathyroid issue then that would be why.
It’s frightening to think that the condition is so difficult to get diagnosed. Hopefully, my thyroid blood test will be able to show me that it could be this causing the problems.
To not take vitamin d goes against all advice on the forum and the N HS (at least through the winter) but it does make you wonder is it better to get all we need during summer months as you said.
Thank you. I take vencamil 100 mcg but I have been moving between accord and Mercury Pharma because of the way I have felt. I know this will mean it could affect the thyroid panel results but do you think it could be attributing to ill health also?
B12 folate and ferritin are normal and all taken in January.
The symptoms of hyperparathyroidism can be similar to other conditions and not easily identified. Typically it takes several years to diagnose hpth as the majority of Drs have little to no experience of it, also the levels of calcium and pth naturally fluctuate so takes a long time to catch a trend of elevated levels.
It took 2+ years for me to get a diagnosis and surgery for hpth.
If your latest results came back within the normal range then you will have to keep testing to see if they do go over but you may be barking up the wrong tree altogether, your symptoms could well be thyroid related and that’s what an Endo would latch onto before even thinking about hpth.
I’m another one who cannot tolerate vitd in any form but I do take the odd spray of better you brand occasionally, I however seem to be fine with very low levels and have been for years.
I doubt you would get a Dr to agree to monthly bloods unless there was clear suspicion of an hpth issue, they are reluctant at the best of times ! Besides levels can fluctuate within a short time so you’d be lucky to catch it when higher. The other test you could ask for is a 24 hour urine calcium clearance test but a GP may not be able to do this or even understand the results. You say your thyroid isn’t well controlled so maybe look at sorting that before getting to focused on parathyroid, that is what an Endo would do before thinking about looking for other causes.
There seems to be a lot more controversy lately about the benefits of vitamin D supplementation. It seems that studies suggest it's nowhere near as important as it has been made out to be, most especially by the supplement industry.
Maybe stop taking it for a while, and see if your symptoms improve without making any other changes to your thyroid meds etc? And then resume supplementing at the basic UK recommended dose of just 400iu . I found this video interesting (you don't have to subscribe to zoe to be able to watch it!) youtube.com/watch?v=zI0ptL9...
From my reading on the forum it's usually suggested that you test after being on a consistent brand of Levothyroxine for at least six - eight weeks. Just thinking if you've been chopping and changing brands it may affect the results.
I was told I have secondary hyperparathyroidism due to vitamin D deficiency. Thankfully I can tolerate supplements and I'm due to retest soon so hopefully my vitamin D levels will have risen and pth levels will have dropped to within range.
My GP will only do a bare minimum of blood tests. Thyroid tests once a year (no FT3 testing) I'm still titrating up so do my own tests.
I hope you get to the level that helps your symptoms. I can’t really explain mine, except I felt more unwell with the high dose vitamin D and after taking it for only a week or so.
That is interesting about your hyperparathyroidism being caused by low vitamin D. Could I therefore, have hypoparathyroidism in not being well on a higher dose of vitamin D? There is the blood test due soon though to check my thyroid and I understand too, about the changing in brands but as a lot of us do, we try to see if anything will help make us feel better.
Hypoparathyroidism is a rare endocrine disorder that occurs when the parathyroid glands in the neck produce too little parathyroid hormone (PTH). PTH regulates calcium and phosphorus levels in the blood and bones. When PTH production is low, calcium levels drop and phosphorus levels rise, causing an imbalance. The most common cause is damage or removal of the parathyroid glands, which can happen during thyroid surgery. •
I have had my thyroid removed by radio iodine in 2004 so this could be a possibility and I have noticed helvella ’s post recently on this.
I had half my thyroid removed in 2022 due to suspicious cells in a large nodule. At the time I remember asking my surgeon if I still had my parathyroid glands. She said they were intact.
I realise it was a few years ago but is it possible to ask if yours have completely gone/been destroyed?
There are others on the forum that have had RAI or understand more than I do and may know what happens to parathyroid glands after having RAI. I'll check and tag a few members. pennyannie
You could also if you wanted do a new post asking what happens to parathyroid glands after RAI.
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