Hyperparathyroidism and hypothyroidism

[CarolynHatcher]

I was diagnosed with hyperparathyroidism and also hypothyroidism. I am waiting on blood work to see what my levels are for both. The symptoms I have are nausea, leg weakness that comes and goes, terrible anxiety, near fainting episodes and more. Can all these symptoms be related to hyperparathyroidism or is it anxiety from it?

[helvella Administrator]

On the parathyroid front, I have a tiny number of links which might help:

helvella - Parathyroid Links

Some links to parathyroid information.

Last updated 20/10/2024

helvella.blogspot.com/p/hel...

I'd assume it is NOT anxiety. At least until proved otherwise. After all, there are potential treatments/approaches to organic issues and they need to be considered and tried as appropriate. How much worse to assume anxiety and ignore that it might be a real organic disorder - and so not treat it?

[CarolynHatcher in reply to helvella]

True..my endocrinologist said usually don't have symptoms unless calcium very high. My calcium fluctuates. I am waiting on blood work results to see where my numbers are both for hyperparathyroidism and hypothyroidism.

[Jazzw in reply to CarolynHatcher]

Endocrinologists often know even less about parathyroid conditions than they do thyroid conditions—so I’d take that comment about not expecting to have symptoms with a pinch of salt. Especially as you can actually have parathyroid issues without having elevated calcium.

I’m going to tag birkie as someone I know here who has experience with a parathyroid condition.

[CarolynHatcher in reply to Jazzw]

Thank you so much 💓

[bantam12 in reply to CarolynHatcher]

Calcium levels will naturally fluctuate with Hpth which is why it typically takes several years to definitely diagnose. Symptoms do get worse when calcium is high but often there are no symptoms or ones that are easily explained on other things.

It took 2 years for constant blood tests and scans for me to get a diagnosis and surgery, the scans were inconclusive which isn’t unusual but luckily I had a good surgeon who went ahead anyway.

Be careful if you are prescribed high dose vitd as this can send the calcium much higher which you don’t want, Drs don’t usually understand hpth very well so it can be a battle.

[CarolynHatcher in reply to bantam12]

I was told to take 2000 iu vitamin D by internal medicine. I probably should stop it.

[bantam12 in reply to CarolynHatcher]

First line of treatment is usually to supplement Vitd as levels are low in hpth, occasionally that is the cause of the deranged calcium and parathyroid so it will correct it but if the cause is an adenoma it won’t.

Drs may prescribed huge loading dose injections which can be a problem but if you are taking it orally then at least you can stop taking them if it causes levels to rise. As long as you keep an eye on your levels then follow your Drs advice, you never know it might do the trick.

[RedApple Administrator in reply to bantam12]

bantam12 'Be careful if you are prescribed high dose vitd as this can send the calcium much higher which you don’t want, '

Does this rise in calcium cause any specific symptoms, and if so, could they be 'wrongly' attributed to or mistaken for something else (e.g. thyroid)?

[CarolynHatcher in reply to RedApple]

I was diagnosed also with hypothyroidism..waiting on blood work to see levels

[RedApple Administrator in reply to CarolynHatcher]

Yes, I understand. Am just wanting to clarify whether the symptoms of too high calcium could be mistaken for thyroid issues. We sometimes get people who are convinced their symptoms are thyroid related when their blood work suggests otherwise. 😊

[CarolynHatcher in reply to RedApple]

I have high calcium, high PTH, and parathyroid adenoma picked up on scan..waiting on ENT apt

[birkie in reply to CarolynHatcher]

If they've picked up the Adenoma, then surgery should be straightforward Carol , but as many of us paratroopers know that doesn't always happen unless your calcium, pth, are high, this shouldn't be the case you have an overactive parathyroid gland shown on the scan.

I hope they put you forward for a parathyroidectemy , ideally the surgeon should do 4 gland exploration to check all 4 glands, because more that one can become overactive 👍

Best of luck ❤️

[bantam12 in reply to RedApple]

Hypercalcemia can cause numerous symptoms ( not everyone will get symptoms) and these are often attributed to other causes which does delay diagnosis. My Endo at the time was convinced I was overmedicated on Levo so all my symptoms were down to that 🙄 And of course the usual vitd deficiency, anxiety , stress, depression words thrown around but they were also non starters, eventually she ordered a 24 hour urine test which sealed the deal as the results were obvious so after 2 years she referred me to a surgeon and he was furious it had taken so long !

The majority of Drs will never have come across Hpth so they don’t know how to test and diagnose it, makes it a long and frustrating process.

[CarolynHatcher in reply to bantam12]

It took me 5 years to get a diagnosis. Internal medicine missed it even though calcium was high and i was symptomatic at that time. I told her it all feels like it is in my neck whatever is going on. Go figure. My new family doc picked it up. It has been a long road and still continues. At least I now have a referral gone in to ENT. Now it's just a waiting game. As for symptoms before diagnosis, I had high heart rate, high BP, countless visits to ER as I thought I was having a heart attack and no one picked it up. Symptoms have gotten worse but add in anxiety on top of. It's been, like I said, a long road.

[birkie in reply to CarolynHatcher]

Hi carolynHatcherThe endo is gaslighting you...your calcium does not have to be sky high to have primary hyperparathyroidism there is a parathyroid condition called normocalcemic where the calcium can be in normal range but at the top end or just in range and you can still have the condition, and you can still have the most awful symptoms.

I have primary hyperparathyroidism and had graves disease, I had full thyroidectomy in 2019 which rendered me hypo , my first diagnosis of primary hyperparathyroidism was in 2004 with a watch and wait approach [ which I thought was what they did 🫣]

After full thyroidectomy my calcium went over range again and after bloods they again diagnosed primary hyperparathyroidism, but again I was told ..." ho your calcium is bouncing in and out ,as is your parathyroid we will just keep an eye on your levels 😡

Heres a little test...if your calcium and parathyroid are both high but still in range this should not be...in the same way if your calcium is low and parathyroid is low, we call this the broken see saw...our calcium and parathyroid go up and down in a see saw method, if one is up [ parathyroid] then one will be down [ calcium] healthy parathyroid glands will regulate calcium levels , if an adenoma is present [ over active parathyroid glands then the method is broken].

In the other condition which is SECONDARY HYPERPARATHYROIDISM you will have a low calcium with deficient vitamin D , in this condition the calcium going low causes the pth to raise...so the specialist will give you vitamin D to bring your calcium up in effect lowering the pth.

But some endocrinologists see the vitamin D deficiency and just give loading doses of vitamin D, ignoring the calcium level, high loading doses of vitamin D should only be given if your calcium is below range or very low , because as in my case i took high loading doses of vitamin D which raised my calcium further giving me worse symptoms, don't let them make that mistake, however they will no doubt give you vitamin d if your below the range.. make sure you have your calcium range before they do that, in fact get all blood work printouts 👍

Another gaslighting is you don't have symptoms...that's tosh, I have awful symptoms some you have mentioned, but the worst is wanting the toilet to pee way more especially through night, thirst being another, bone or body pain, pain in the loin area [ probable kidney stones indicative of primary hyperparathyroidism, nauseated or feeling sick and headache.

My advice would be is to do as much research as you can on primary hyperparathyroidism and hypo as may endocrinologists have limited knowledge of these conditions 👍

I would also urge you to have...calcium, parathyroid, vitamin D , magnesium, bloods done, magnesium gets depleted with primary hyperparathyroidism but most gps will not test magnesium, so it's[ Ca...PTH, VIT d, Mg] PTH should be drawn into an EDTA TUBE usually a purple top tube..you may have to ask if they are using the edta because as in my case they never used the correct tubes..[ EDTA as a preservative in it to keep the blood fresh]

Best of luck on your journey I hope you get the answers you need ❤️

[CarolynHatcher in reply to birkie]

Thanks for all the information. My calcium and PTH are both up. Actually, my calcium was up in 2020, but internal medicine didnt mention it. I went to internal medicine for fasciculations, racing heart and high blood pressure. I told that doctor that i dont feel right and it felt like it was all in my neck. I was told it was anxiety. My new family doctor finally figured out what was going on around May of this year. I also have nodules on my thyroid. This has created so much anxiety which is making the symptoms worse. The fatigue is bad. It feels as if all my energy just leaves my body. The only thing that helps is drinking lots and lots of water. It has been a long road but I am now referred to ENT to have surgery but that could take months.

[birkie in reply to CarolynHatcher]

I'm glad your being seen to Carolyn, unfortunately nothing as lit up for me on my scans, and my bloods bounce between normal and primary and normocalcemic and because the nhs don't consider my calcium and pth to be very high I'm just like a lot of hyperparathyroid patients left to deal with our symptoms .I drink so much water when I'm in a flare up my urine looks like water, and I know that's not good either, I'm in one now my pth as gone over again but calcium is mid to top end so.....again doctor as taken my vitamin D blood , and I know if it's deficient they will try to give my large doses of vit d🙄 pushing my already mid to top calcium over😡.

If I had the money I'd just go to my parathyroid surgeon in bambury Oxford he said he could do 4 gland explanatory but it's around 7 grand😔

Weird isn't it that I can have surgery if I pay , but not on the nhs at the moment, ho and yes the waiting list for parathyroid surgery is long😡

[CarolynHatcher in reply to birkie]

Thank god I'm referred to ENT. Can I ask what your symptoms are? I have weakness. Not sure anxiety or hyperparathyroidism.

[birkie in reply to CarolynHatcher]

My symptoms and I have many.. can be put into 3 categories

My first symptoms in 2004 were fatigue, weakness in lower limbs , I had slight palpitations, sweating [ which I forgot to mention] I couldn't sleep at night without needing the toilet up to 4/5 times, utter thirst , headache, very dry mouth and lips , body pain like rheumatic flu.....diagnosis through blood tests and 24hr urine [ primary hyperparathyroidism] recommended [ watch and wait approach]😡

2014] new symptoms with above symptoms , now sweating profusely, hand tremors, fast heartbeat insomnia, weight loss this continued from the end of 2014 until 2018 when I was eventually diagnosed with hyperthyroidism, turns out I actually had graves thyrotoxic..full thyroidectomy , most of those symptoms went after my thyroid was removed, the symptoms that remained were..sweating, weakness, body pain, headache, toilet trips , thirst, slight palpitations [ nothing like my fast heart rate in graves] .

So these symptoms were still with me , then in 2020 on looking over my thyroid bloods I noticed my calcium was over range, I went back to my last thyroid bloods done some 8wks previous and my calcium was over on that test, I contacted my gp who just said " ho they are only mildly raised"😡

No such thing, your calcium is raised for a reason, I got full bloods done and my pth was over to!! Endocrinologist saw the bloods did her own and sent me the report....diagnosis primary hyperparathyroidism, gp decided to just keep an eye on my bloods...watch and wait again.

I refused and saw the private parathyroid surgeon in Oxford got the definitive diagnosis PRIMARY HYPERPARATHYROIDISM and been having scans and bloods since 2020, my surgeon in Liverpool [ nhs] wants a target a lit up gland as I've already had invasive neck surgery, the nhs like to see the little gremlin, but they don't always light up on scans and according to my surgeon in Liverpool I have a lot of scar tissue.

But I'm going to go out on a limb here and say I'm sure it's not anxiety your suffering with, I got that diagnosis everytime I saw a gp or specialist, I kept saying " it's not anxiety something is very wrong " i can honestly say when I'm in my flare up.. like now...i have this sense of dread😭 it's hard to explain , but you feel just plain weird, I sometimes feel like tearing my hair out [ what I have left😂 because I'm practically bold on top, I feel like I'm going mad at times , it's just so hard to explain.

I hope you get the op and you don't have to wait to long❤️

[CarolynHatcher in reply to birkie]

It sounds like you are describing me to a tee. Fatigue, weakness in lower limbs, nausea on and off, feels like im crawling out of my skin, sense of dread like you said, sweating, and then cold, feels like it's affecting my breathing like it stops (could be anxiety), hair falling out, bone pain, constant drinking to keep up energy and because of thirst...it's affecting my mental health. I was told so many times it's anxiety. But at least I now have a referral to ENT like I said, just hope I don't have to wait too long. I was also diagnosed with hypothyroidism and on Synthroid. It feels like I'll never get out of it 😪

[Chickenfriend in reply to CarolynHatcher]

hi Carolyn, I had raised calcium levels for years. Doctor told me it was nothing and put me on anti anxiety meds, because I had bad anxiety attacks. I was so weak, all muscles were affected. I bought a toilet seat for next to my bed, because I no longer could make it to the bathroom in time. I was tired all the time and my vision deteriorated. I could not think straight anymore and thought I had a form of dementia. I finally was sent to endocrinology and my surgery was scheduled a few weeks later. I had growths on my parathyroid. I also was diagnosed with hashimotos and hypothyroidism. Since the surgery , for both thyroid and parathyroid (already 4 years ago) I have no anxiety attacks, at least no full blown ones anymore. I can make it to the bathroom and my eyesight improved. I am still dealing with poorly controlled thyroid stuff but I take that any day over all the parathyroid symptoms. Good luck with your journey

[CarolynHatcher in reply to Chickenfriend]

Wow! It's been so hard for me also. All doctors say anxiety and hyperparathyroidism does not cause the symptoms I have. It is so frustrating and affecting my mental health. I was on Synthroid for hypothyroidism and I gave that up this week as I think that drug also causes a lot of side effects. My symptoms come and go. I have flare ups of weakness and anxiety. I tried Lexapro for the anxiety but couldn't get through side effects. I am hoping surgery will solve it all. Thanks for your reply.

[Chickenfriend in reply to CarolynHatcher]

I don’t think all doctors know what symptoms can happen with hyperthyroidism. But it is a fact it can affect the brain. I found an article on line saying that without surgery it can lead to dementia over a long time with chronic high blood calcium levels. I also developed osteoporosis from it, since that calcium in the blood came from the bones. Not everyone has this effect on the brain. But for me it was the most scary symptom. The anxiety that came out of nowhere, no thoughts provoking it. The brain fog poor memory and dyspraxia. I sometimes was so lost, I didn’t know how to myself a cup of coffee and could not follow conversations.

Good luck with the surgery. I definitely felt a lot better , not right after , but soon after and could focus on just the thyroditis. I am on an easy digestible 10.000 mg vit. D. When I decrease, my vit. D in blood levels are always low.

[CarolynHatcher in reply to Chickenfriend]

Thanks for sharing your journey. It makes me feel not so alone or that I'm literally going crazy. Surgery cannot come soon enough. My vitamin D is 50 so borderline low and I'm taking 2500 IU. Like you said, the anxiety comes out of nowhere and it's so hard to function and work.

[Chickenfriend in reply to CarolynHatcher]

Yes, it was very hard to function. I was in a way lucky it happened all during Covid for me. So I was worked from home, and could lay back down in between work sessions. My body no longer knew how to fall asleep. Like I was too exhausted to make the transition from wake to sleep. That probably did not help my mental state either. I just know you are not crazy, and you are going to feel so much better after surgery. Maybe after a week of the surgery. That first week I had suddenly low calcium in blood, what gives tingling sensations all over the body and nausea . After that I felt much better and even fell asleep sometimes! 😀

[CarolynHatcher in reply to Chickenfriend]

Thank you for your support

[Jazzw]

You may also find this site helpful: parathyroiduk.org/hyperpara...

[Capan24]

I have Hashimoto's. I also had primary hyperparathyroidism when I was 54 years old, which resulted in surgery to remove two of my parathyroid glands related to two adenomas. The symptoms I had with my hyperparathyroidism was extreme fatigue and my blood pressure became elevated due to the elevated calcium. When I had the surgery to remove the parathyroid tumors, they also removed two thyroid nodules showing Hashimoto's, which I already knew I had. After my surgery, I felt so much better and had my life back. No more high blood pressure or fatigue. If you have hyperparathyroidism it's really important to get it taken care of because it robs your bones of calcium causing osteoporosis. They should be also doing a dexa scan to check your bones. Since having my tumors removed, I have had no further issues with my other two parathyroid glands and feel great. Good luck to you.

[CarolynHatcher in reply to Capan24]

I have a dexa scan scheduled for December 4. I have an adenoma on one parathyroid gland but I also have a couple of nodules on my thyroid. ENT referral sent in so hopefully won't have to wait too long for surgery.

[Capan24 in reply to CarolynHatcher]

They only thought I had one tumor too. But when they went in there and checked all the other glands they found the second one. The recovery from the surgery wasn't too bad, just a bit of a stiff neck for a little bit. The scar on my neck is about 1 in long and it is barely visible. If you do have osteopenia or osteoporosis, your bones can get better after you have the surgery done. Mine got a little worse before they got better. I do a lot of weight-bearing exercises and take citrical maximum Plus in vitamin K 2, 100 micrograms daily. I hope you feel better soon.

[CarolynHatcher in reply to Capan24]

Thank you for replying. By any chance were you on Synthroid and if so, did you have any side effects from it?

[Capan24 in reply to CarolynHatcher]

I was diagnosed with Hashimoto's about 8 years before the surgery and was started on Synthroid. I don't remember the initial start of my dose. I'm currently taking 100 micrograms daily of Synthroid. The thyroid nodule that they removed confirmed what I already knew that I had Hashimoto's. I did not have any side effects from the Synthroid.

[CarolynHatcher in reply to Capan24]

Thanks for replying 🙂

[Fruitandnutcase]

Can I add - and I know it’s probably depressing but keep a check on and look after your bones as untreated hyperparathyroidism is unfortunately one of the things that can lead to osteoporosis so it might be worth asking about a DEXA scan to see what’s happening with them.

Sort I’ve just noticed Capan 24 has mentioned osteoporosis- that will teach me to read every single comment.

[CarolynHatcher in reply to Fruitandnutcase]

I have a DEXA scan scheduled for December 4th

[CarolynHatcher in reply to CarolynHatcher]

I have bone pain left of tailbone when sitting for long periods as I am a medical transcriptionist so a lot of sitting..also, my ribs hurt when laying too long on one side or the other.

[Fruitandnutcase in reply to CarolynHatcher]

Good that your doctors have thought of that. It will be interesting to see what your DEXA scan will show although hopefully your bones will be ok. You need to get your hyper parathyroid sorted before anyone starts treating your bones though. . An MRI scan would be better if you can get one.

Could you get standing desk which would help? I know sitting for long periods is not really good for me, well it’s not really good for anyone especially as you are possibly hunched over a computer so perhaps your employer could organise something like that for you. Don’t let anyone fob you off with ‘anxiety’ though.

[CarolynHatcher in reply to Fruitandnutcase]

Thanks for your reply. I might actually retire after Christmas so let's see. I had internal medicine apt this morning and doc told me to see psychology for my anxiety if I won't take meds 🙄. I have hypothyroidism and on Synthroid. I stopped that med and feeling better even though not 100%. I will discuss with endocrinologist about staying off that med at next apt. My TSH is in normal range. Internal med doc said Synthroid doesn't cause the symptoms I have of weakness and anxiety. It's a struggle. Parathyroid surgery probably the answer to it all.

[Fruitandnutcase]

Hyperparathyroidism surgery may well - if you put up a question you may well find a few people on here who have had it.

Have you checked out all the vitamins and minerals that the moderators tend to recommend, it would be a good idea to have them all well up.

Can’t help you with Synthroid - I had Graves’ disease. I did spend a year on carbimazole along with levothyroxine but I was fine. . Again you could post on here to see how others have found it - I’m sure you will probably find others who don’t agree with your doctor.

Bit of a nerve to tell you to see psychology for anxiety. It’s a bit like doctors who prescribe antidepressants - I’ve always said there is a difference between depression and feeling depressed because your doctors aren’t listening to you. Apart from anything else your thyroid can mess all sorts of things up and your doctor should know that once he’s fixed you, he won’t be thinking you are anxious. Good luck.

[CarolynHatcher in reply to Fruitandnutcase]

I agree, once it's fixed, anxiety will go away and all other symptoms 🙂