It's going to take all my energy to write this post but here goes, first I have no thyroid removed due to graves in 2019,on T3 lactose free. I had blood tests done I think it was Oct which showed a slight rise in my PTH being at 8.1...my calcium was only slightly raised, my endo did this test again which showed a PTH now at 9.5 calcium normal, he has since done a short synacthen test which has shown normal, I'm waiting on the results of an FHH test done about 3 weeks ago. In the last month I've suffered with pain in the neck on both sides sharp, throbing, feeling sick, totally fatigued weird sensation like tingling in lips electric shock sensations in arms and legs(may I point out in 2003/4 I was diagnosed with hyperparathyroidism and the symptoms are identical).. I saw my gp who confirmed the swelling in the neck, but put it down to the flu season even though I was showing no signs of a cold, flu or sore throat, just croaky all the time!.
I have just spoken to an endo who called to give me the results of the short synacthen test, I put these symptoms to her as maby being my parathyroid glands, she noted my last calcium level was normal that was about 2 months ago, but no PTH has been done since the 9.5 one the one and only test I've had on them.. She said we do not treat people who have normal calcium levels, but my calcium has been going up then back to normal 😠 over a number of years, I now have ostiopea.. Also in this last 2 weeks I had to go to the surgery because my knees are ankles became very painful and swollen my gp was so bothered she sent me for x rays on them, just waiting on results, she did mention osteoporosis being the culprit??.. Am I wrong in saying calcium in the blood stream is not a good thing for one's body? She's has now discharge me and is writing to another endo to take over my case( I thank her for that).. Its taken a specialist in parathyroid illness to see the anomalies in my calcium over the years and to have the FHH test done, but my worrie is if that test comes back normal where does that leave me😭 I'm feeling really ill in bed most days and sick of this, I mentioned NORMOCALCEMIC PRIMARY HYPERPARATHYROIDISM to her but she brushed that off 😠.. I'm wondering whether it's any use in carrying on I have no quality of life EVEN AFTER TOTAL THYROIDECTOMY, just about done with this and all the professionals who are their to help you arnt😭😭😭😭
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birkie
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Hi meme.I was slightly deficit in vit D being 29..im on 800iu 1 tablet per day.. But my vit D has been deficient for a long time I looked through my records and noticed several low vitamin D recorded but gp did nothing because it was one or 2 above the range, I now have ostiopein and gp thinks I might have ostioporosis in my knees and ankles... 😢 The pain is so unbeatable at times.. 😔😔😔
HiYes to little vitamin D can be linked to hyperparathiyroidism, I looked through my records to find several vitamin D results as low 29 and below... (25 is the lowest but my gp did nothing about it I was never told because back then I just took the doctors word for it🤷♀️ I know more now being on here ♥️ the new endo even wrote to my gp saying "it would be useful to see this lady's vitamin D results as she has several low ones, can you please do a vitamin D test ASAP... Gp did and I was immediately put on vit D.. But I don't think 800iu one per day is enough to be honest.. 🤷♀️
Calcium and pth must be tested at the same time and as levels will naturally fluctuate it does take a long time to get a diagnosis. A 24 hour calcium urine test might be useful and a sestamibi scan.
I've had the 24hr urine test that was normal, everything is normal apart fm the PTH and my ca going up intermittently 🤷♀️... Can I ask what a sestamibi test is.. ❤️
Sestamibi is a special scan with contrast which specifically looks at the parathyroids. Do you have kidney problems ? secondary hyperparathyroidism presents with high pth and unstable/normal calcium.
HiWas in hospital in july this year after passing a kidney stone I have had bouts of reanal colic with stones being passed.. I suppose I'm lucky in that the stones arnt big enough to get fully lodged yet.. Yes my pth was 8.1...then 9.5 with intermittent raised calcium, in some cases in my records it shows raised calcium but no pth done!!.. ♥️
Hi bantam.I'm I right in thinking you mean the uptake scan on the parathyroid glands? I've just received the results and no uptake was noticed... But I have read in certain circumstances this test is not always accurate.. My best friend had it about 2 months ago and it showed no uptake on her, she was rushed in to hospital for removal of 3 and a half of her parathyroid glands.. Yes her calcium was raised but she's only had 2 blood tests for raised calcium the endo who she spoke to.. Who I've just spoke to today was not bothered about her,, her symptoms were like mine are now.. But my calcium has been going up them back to normal since 1014..just shows you that those uptake scans don't always work!!.. ♥️
My adenoma didn't show on the mibi scan or ultrasound but my calcium and pth were consisteantly high so my surgeon was 100% sure I needed surgery and went ahead. Having parathyroids removed with no adenoma present won't help as that isn't the cause. If you have secondary hpth there is a drug called Cinacalcet which helps to reduce levels.
Hi thanks..It's really frustrating because my first bloods showed mild calcium rise and pth raise and the endo said hyperparathiyroidism? This was in a blood work test because I'm not recovering well after thyroidectomy and the endo felt like something else was going on with me, I've been on 800iu vit D now for over 2 months and feeling no better, just had server swelling in both knees and ankles with tremendous bone pain.. X rays have been done.. Waiting on results. Feeling sick most days, tingling sensation in lips, with electric shock feeling in arms legs and top of the head.. As my calcium has been going intermittently high then back to normal the new endo requested pth to be done along side calcium as I said they were both over🤷♀️.. I had this diagnosis in 2003/4 but they just waited till bloods returned to normal after about 8 weeks, nothing was ever followed up after that, but I continued to feel unwell finally diagnosed with ME/fibro a year later! I now find out I have ostiopein and my gp thinks the swelling of the knees and ankles could be ostioporosis 😩.. I know these can be linked to untreated parathyroid illness... Mones, stones and grones as it was called.. 🤷♀️
I have kidney stones (luckily never caused a problem ) and osteopenia caused by high calcium. It sounds like you need a second opinion and then possibly a referral to an experienced surgeon if an adenoma seems likely, the surgeon I saw was pretty annoyed I hadn't been referred earlier.
Thanks ♥️My new endo said he would be very reluctant to perform surgery due to me having a total thyroidectomy as he said trauma is inevitable 🤷♀️ my other endo has referred me back to him... I don't hold out much hope of him doing anything for me.. But the GPS and my specialist who saw me with kidney stones ect, were not bothered they just treat me with drugs, for pain and now we find I have ostiopein and maby ostioporosis 🤷♀️ it's clear to me calcium as played a part in this, my rhumertologyst did x rays on my wrists and their is calcification of both wrists I also have calcium deposits in my aterys to.. 😩
Having previous neck surgery can make pth op more difficult, my surgeon did have a problem with all the scar tissue and then he couldn't find any parathyroids ! He eventually took out what he suspected was the last remaining gland but luckily after a calcium crash post op my levels did stabalise so there must be a bit of a gland lurking somewhere. Kidney stones won't be effecting your calcium levels, in secondary hpth its a problem with actual kidney function, my husband had kidney failure which led to secondary hpth.
I can't really offer you any solutions, it's down to your Endos to sort it out but seeing an experienced parathyroid surgeon might be helpful.
Here is the most important fact on this page: since vitamin D is required for humans to absorb calcium in their intestines, a low vitamin D cannot ever be the cause of high blood calcium. This fact is not debatable. Thus, if you have a low vitamin D and your calcium is above 10.0, then the high calcium in your blood must have come from somewhere else other than your diet (it came from your bones). Thus, if you have a low vitamin D, and a calcium level above 10.1, then you are almost guaranteed to have primary hyperparathyroidism and need surgery to remove the parathyroid tumor. A low vitamin D cannot ever be the cause of high blood calcium.
If you have calcium, vitamin D and parathyroid results done at same time
Recommend you download calcium pro app and enter your results for evaluation
Hi slowdragon ♥️Thanks for the info.. I've seen that link you sent me.. ♥️ This is what I told the endo today😠 that vit D deficiency is not always the cause of high blood calcium levels she said this was above her and she was referring me back to the other endo in Newcastle the one who poo pooed T3.. 😠.. Not holding out any hope he will help me, because he said surgery would be almost impossible as I have already had thyroidectomy 🤷♀️ and trauma would be inevitable, my calcium has been going up then back to normal for some years.. I've just had the FHH test so still waiting on that, in these results on calcium being raised my gp never did anything about it.. 😠 It took this endo from Newcastle to bring this to his attention and he didn't ever do pth, when they did this year both calcium was slightly raised and my pth was 8.1 and on my last bloods it was 9.5 not huge I know but their must be some reason it's happening 🤷♀️
Sorry slowdragon 😩Fgot about my calcium it was 2.87..at one point endo said it was within range now.. 🤷♀️ I'm having bloods done on sat this week for thyroid, I've managed to sneak a calcium one in to.. Because the endo said they do not monitor calcium on a regular basis 🤷♀️
Hi humanbean ♥️And thank you so much for the link♥️ I have seen this and regularly watch this gentleman, I totally agree with him when he says to much calcium can be toxic to the body and I'm sure this is causing some of my symptoms, my calcium as I have said has been going up then back to normal going back as far as 2015..but gp and specialists have not questioned why, I myself didn't know until a new endo took over my case he scrutinised my records and found several anomalies in my calcium levels.. One being 2.87..just recently, with a raised PTH.. Then diagnosed hyperparathiyroidism, but upon urine, then 6wks bloods re test to which the calcium return to normal but PTH remains at 9.5 he dismissed the hyperparathiyroidism 🤷♀️ I have been in hospital with 2 bouts of passing stones this to me is calcium build up and was told so by the urologist, I have ostiopein, and now my gp (new one) thinks I may have ostioporosis in both knees and ankles, this is bone loss and could be attributed to untreated hyperparathiyroidism. I have just recently had the FHH test and are waiting on those results 🤷♀️
I hope your doctor will give you a Dexa scan to find out whether your bones are in trouble or not.
I worry about my own bones and calcium levels, although my calcium isn't as bad as yours. It's usually about 90% - 95% of the way through the range, but the uncorrected level has once been a smidgen over range. Having done some reading on the subject I can understand why you are so worried about it. I also have a family history of severe osteoporosis.
What's an FHH test?
I'm assuming you must have found this website already?
Hi♥️Just had the Dexa scan which showed ostiopein mainly in my spine, put on vitamin D, my mum had ostioporosis 🤷♀️.. And thyroid although she was hypo I was hyper, FHH is a familial hypocalciuric hypercalcemic test its genetic.. Its an inherited disorder that causes abnormally high levels of calcium in the blood( hypercalcemia).. And also low levels of calcium in the blood.. (hypocalciuric).. Just waiting on those results 😔
If it is in ng/mL then you need to be aiming for a level of about 40 - 60 ng/mL. If it is in nmol/L you should be aiming for a level of about 100 - 150 nmol/L.
In either case, your dose of vitamin D supplement is absurdly low.
To calculate the dose of vitamin D you should be taking, see this link and put in the information requested :
I take 4000 iU just as a maintenance dose, and I know some people need more.
You should be taking vitamin D3. The best kind of vitamin D3 supplements consist of a capsule shell/softgel containing oil and vitamin D3 only. Doctor's Best are a good make, but there are quite a few good ones to choose from with a range of dose sizes.
Hi ♥️My endo and gp calculated that dose of vitamin D 🤷♀️.. I'm also lactose intolerant, I've just had a hard lesson this week.. My new gp put me on codeine phosphate for the bone pain in both knees and ankles.. I started it last Monday after a couple of days the bowles went nuts again knew right away that I'd taken something containing lactose,, yes indeed turns out the codeine phosphate contains it.. 😩 I discontinued it when I read the ingredients I'm mad with myself for not doing this in the first place😠.. I'm now just getting bk to normal, inflammation is subsiding server pain and wind going to and passing less horrid mucus.. Getting bk to vit D I don't pay for my prescriptions so probably gp is being very stindgey in giving me the lowest and least expensive vitamin D he can.. I'm having re bloods done this Saturday and I've asked for vit D and calcium along with my normal 6wks thyroid bloods so it will be interesting to see if it goes up from 29...the level is mmol/L I think... 🤞
Hi. Gezzz I've just done that vitamin D link you sent... And thanks so much. ❤️❤️ I'm way off it says 6000iu daily, 800iu as you say in inadequate I'll be talking to my gp about this😠 won't be supprised if I don't see any improvement in my level 🤷♀️
HiYes I found that Web site to.. To be honest I've been trying to get info on parathyroid illness for the last few months after the diagnosis this year and then dismissal of said diagnosis by the endo, eventhough my bloods showed what my endo said was mild rise in calcium and PTH.. Because no calcium was detected in my 24 hour urine test and another urine test it was dismissed, but looking bk in my records their are 2 urine tests which showed calcium deposits but endo was not interested in past tests only in the present ones🤷♀️ which I think is unprofessional in my opinion 😠
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