Diagnosis of hyperparathyroidism and vitamin d

[birkie]

Hi everyone ❤️

I'm hoping someone can shed light on this, I was diagnosed with hyperparathyroidism in Aug last year since then the endo has only done blood work and an uptake scan, the scan showed no uptake! But my levels of calcium were 2.62, 2.87,2.71..range 2.10..2.60)..my PTH levels were 8.3,9.5..,in Nov last year the endo noticed I was vitamin D deficient at 29..range 50..70..,he prescribed vitamin D, im suffering terribly with the symptoms, insomnia, bad body pain, bad headache, weeing a lot thirsty, totally exhausted, sweating and fast heartbeat, my gp noticed hyper symptoms and asked if I was on some stimulant, my history is... Hyperthyroidism (graves) in 2018,2019 thyroidectomy, I have never felt hypo, only hyper, even after one blood test showed hypo!!, I spoke to a lady recently regarding hyperparathyroidism which she has been diagnosed with I told her my blood work and the vitamin D, b 12 I was taking she asked me to look up hyperparathyroidism in relation to taking vitamin D, taking vitamin D can cause the PTH to give a false reading ie lowering it, but the body lowers the vitamin D level to protect you from high calcium, so if you take vitamin D your parathyroid levels lower but your calcium will go higher, these are my latest results done on 1st Feb, PTH.. 4.4( lower than the 9.5) calcium 2.80..(higher than previous ones).. Is this why I feel so rotten been in bed for a week now, I'm also trying to deal with thyroid medication to get myself to euthyroid, my last thyroid blood were.. TSH.. 0.1...range.. 0.30...4.50..mU/L.. Very low!!!

T3..16.5...range.. 3.10..6.80.pmol/L.. High

T4..2.5..range.. 11.00..22.00pmol /L.. Low

Although I'm not really bothered about the TSH or T4 levels as I'm on T3 medication so these levels will be about right, my T3 level is weird as I'm only on 35mg of T3.. Been increasing slowly from 10mg upwards to 35mg, I think the T3 reading is possibly wrong so having a re - test on the 13 of April, only time the nurse could do it.. 😠.. I'm beginning to think that having a diagnosis of hyperparathyroidism is maby affecting my recovery from thyroidectomy,???.. I know the only cure to hyperparathyroidism is to remove the offending gland or glands, and I'm bewildered as to why my gp is letting me suffer so bad, I have an appointment with the endo but not till June 2nd 😔 don't think I can last that long.. 😞😞😞

[Jazzw]

Hi Birkie. I’ll start by saying I’m no expert on parathyroid issues but was intrigued enough to see if I could help figure out what’s going on here.

Usually, when someone’s had a thyroidectomy, parathyroid issues tend to be of the hypoparathyroid (under active) variety because the tiny parathyroid glands may get damaged during the thyroidectomy.

However, your parathyroids appear to have become over-active and that’s most likely to be because at least one of your parathyroid glands has a benign tumour on it.

Both your calcium and PTH levels were found to be over-range (presumably in August last year?). That’s a fairly clear sign that the above scenario is correct (see this page: parathyroid.com/low-vitamin...

Your body lowered its Vit D levels on purpose because the person you spoke to is correct (at least partially—I’m not clear from what you wrote exactly what she said). Raising Vitamin D helps your body absorb more calcium which is something you definitely don’t need! So yes, it’s driven your calcium levels even higher. I think I’d stop taking it...Not surprised you feel rotten.

I don’t think your doctor knows a lot about parathyroid issues (not surprising if you consider how few of them have a clue about the much more common thyroid issues!).

That link I just added—it recommends printing it off and taking to your doctor. Might be exactly the thing to do. I agree that waiting until June to see someone seems pretty sadistic!

[birkie in reply to Jazzw]

Hi jazzw.. ❤️..I have just about read up on everything I can on parathyroid disease, I was unaware of the vitamin D, as I concentrated on elevated calcium and pth.. Due to getting nowhere with the endo I reached out to a parathyroid site on you tube, he explained the relation to taking vitamin D with elevated calcium and pth level, I posted my blood work saying I was taking vitamins D a lady responded saying look up hyperparathiyroidism with vitamin D, obviously its the calcium that's the most important, I've just got off the phone with my gp, he has said the endo has said your calcium levels are only slightly elevated.... Here are some I have these. . .2.67..2.89..2.75...2.67..2.68...all calcium con.. Pth 8.2...9.5...I was trying to tell him their is no such thing as slightly elevated, I've put my results in to calcium pro app.. It says VERY LIKELY YOU HAVE HYPERPARATHIYROIDISM! he was quite rude and kept saying he is more interested in my T3, T4 TSH... I told him to forget the T4, TSH as they are OK for someone being on T3 only, yes my T3 has shot up but I think that's a glich.. I'm having them re done tomorrow now by him.. The awful gp.., 🙄.. He firstly dismissed the hyperparathiyroidism as the endo has not confirmed it but I have a letter from him saying and I quote.. The cause of her Mild intermittent hypercalcaemia, the main differential being PRIMARY HYPERPARATHIYROIDISM AND FHH.) my FHH test was negative, so to conclude its hyperparathiyroidism 🤷‍♀️

[Jazzw]

Re your thyroid test results—well, obviously your FT3 is looking too high but I completely get where you’re coming from given the dosage you’re on not being particularly high.

Lazy doctors will point straight at that and decide that’s the issue but right now your body’s got enough to contend with, dealing with the calcium/PTH/Vit D balance, without you shocking it further by changing something else. I’d be tempted to leave things as they are until you get the results of the second FT3 test. I’m sure you do the usual thing of testing 12 hours after taking your T3?

[birkie in reply to Jazzw]

Hi... ❤️Yes I have my last T3 at 8pm then get blood drawn at 9am the following day water only.. Yes I think their is a problem with the T3 result,, on that day the nurse was doing a full thyroid pannle and an ionised calcium test for this endo... More bloods,, I mean what does he want from me!!! I've had several tests since Aug last year all pointing to hyperparathiyroidism, why as he done nothing😠.. The nurse put the blood in one tube.. I was sitting thinking as she prepared the vile for going to the labs,, should the ionised calcium not be in a red top tube,, an ionised calcium test is a fasting test so I prepared for this,, and low and behold I got a message from my surgery saying there had been a technical problem with my ionised calcium test,, turns out she did put it in the wrong tube,, and now due to her incompleteness I can't have the re test till 13th April ( also doing the T3 re test then to).. So I'm thinking did they also make a mistake with the T3???? 🤷‍♀️🤷‍♀️🤷‍♀️ I really can't go on,, I'm struggling everyday but this last week as Been the worst.. 😭

[Jazzw]

Just to add, I think it’s possible your doctor has mistakenly concluded you have secondary hyperparathyroidism. But if that was the case, your calcium levels would have been low, rather than high.

Just to explain things a bit more, here’s the page on hyperparathyroidism from Parathyroid U.K.: parathyroiduk.org/hyperpara...

[birkie in reply to Jazzw]

Hi jazzw. ❤️

Thanks for the info I've read everything I can get my hands on regarding parathyroid disease, I was diagnosed with it in 2004 but my surgery did a wait and see approach so I left that surgery because I still felt unwell and was getting nowhere, I can to the surgery I'm with now and was diagnosed with me/ cfs fibro.. So I believed that diagnosis, I have since gone on to have ostioporosis and ostiopein, kidney stones gal stones, stomach/ gut problems ect just being diagnosed this year with the ostio problem after a dexa scan.. The endo has wrote saying I have hyperparathiyroidism NO DOUBT, my gripe is why are they not doing anything about it.. I've just rang my surgery to try to make an app to see a gp and again due to covid he can only talk over the phone, my voice sounds like I've smoked 50 cigarettes a day,, never smoked in my life, I have a swelling on the right hand side of my neck, unless he is going to jump down the phone he will not be able to examine my neck😠.. The last gp I saw organised an app with an endo for June, but stated A.. You do not look well.. B.. please keep an eye on your heart beat.. C.. if you feel your not coping with the symptoms ring up the surgery and get an app right away, yeah right😠😠😠 they are not taking this seriously, I was diagnosed last Aug 😭

[Jenny583]

Birkie, Stop taking vitamin D now! And get rid of that so called Endo too!

I had to do a lot of research a few years back, as I felt very ill, could feel something squirting from my neck, I mentioned it to a friend who told me to see GP urgently. Friend told me she had to have a growth removed from her neck. I looked it up & saw "primary hyperparathyroidism" - so I gathered research, & as a result of my mention of my friends experience I got a blood test. It turned out to be a much rarer condition, but the fact is I had been refused tests for years. GP was clueless, & would have let me rot but for friends tale.

Dr's know nothing about parathyroid, & yours clearly know even less, or they would not have prescribed vitamin D! I don't have the research papers now, but from memory I recall that vit D is very harmful in primary hyperpara, & they should have investigated cause by now.

You might want to slowly reduce the T3 for now too. My T3 shot up when my calcium came into range, could be a connection?

Oh, and it wouldn't hurt to use scare tactics, say - a friend of someone had primary hyper, & had to stop calcium & vitamin D & then an operation to remove tumor. That is true cos I just told you!

[birkie in reply to Jenny583]

Hi jenny583.. ❤️

Yeah when I conversed with this lady she urged me to look up hyperparathiyroidism and vitamin D, apparently if you have a low vi D level it can be a sign of hyperparathiyroidism because the body lowers the vitamin D to prevent the calcium going high.. So if you take vitamin D all it will do is lower the PTH giving a false reading but your calcium will remain high or go even higher in my case!! I have stopped the vitamin D and are going to ask my surgery to perform another PTH in a couple of weeks, they have refused any more pth tests as mine as gone from 9.5 to 4.4 but this is only because of the vitamin D, if they still refuse I will get it done private, but really should not have to do this,, could you give me some advice on trying to get my gp to bring my endo app forward,, also should I be seeing an endo?? I've already been diagnosed with hyperparathiyroidism by an endo,, should I not just be seen by a parathyroid surgeon?? I know all the endo will do in June is more blood tests as mine as done since Aug of last year, I just can't go on anymore.. 😔😔😔

[Jazzw in reply to birkie]

I can only imagine how frustrated you must feel—this isn’t ****** good enough, is it?

Did you spot, towards the end of the U.K. Parathyroid site article I linked to, it said this:

======================

“Your GP may refer you to an endocrinologist to arrange the diagnostic tests, but if the diagnosis is already clear from your blood tests, you can ask to be referred to a surgeon with expertise in parathyroid surgery, who can arrange any further investigations needed. These usually include imaging scans to try and locate the gland(s) affected. By going directly to a surgeon, you will avoid long waits for endocrinology appointments and increase your chance of being listed for surgery without too much delay. However, where diagnosis is uncertain, or where other factors need to be assessed, a referral to an endocrinologist may be necessary.

Finding an experienced surgeon

It is important that parathyroid surgery is carried out by a highly skilled surgeon. Do not hesitate to ask about your surgeon’s experience, the number of operations they perform and their complication rate. You can find out more about your surgeon here

baets.org.uk/wp-content/upl...

This information is collected by the British Association of Endocrine and Thyroid Surgeons (BAETS) and is updated annually.”

=======================

Waiting to see another Endo isn’t going to help any time soon because it sounds like you need referring to a surgeon anyway. So all that will happen is that the Endo will refer you on, which will take even longer...

On that list of surgeons, is there one near you that you could ask to be referred to?

[birkie in reply to Jazzw]

Hi ❤️

Thanks for replying, as I say I've read just about everything on parathyroid disease, I had an uptake scan in Nov last year that showed no uptake, so he the endo put me on vitamin D.. I have since found out that these uptake scans do not always show up anything and are not needed to get a diagnosis of hyperparathiyroidism as your endo, specialist should go off your blood work, also I have had surgery in the neck area already and parathyroid glands can migrate to other areas in the neck or chest.. I really don't know what the endo app will achieve other than delaying the problem further and keeping me ill.. The endo I was in touch with was from Newcastle apparently he deals in parathyroid surgery, Im now no longer his patient as I cannot travel to Newcastle (, covid rules I live in Cumbria) so my new gp who I must say was concerned about me as got me the app in June, unfortunately he is not in our surgery this week, 🤷‍♀️ so the gp who is calling me later on today is the one who couldn't diagnose me with hyperthyroidism 🙄 so I have no faith anything will happened with him.. He will no doubt concentrate on the high T3, he as Been trying to get me off T3 since last year, 😭😭

[Jazzw in reply to birkie]

Yes, I have little faith in my GP too.

Are you nearer Carlisle or Lancaster? Looking at the list of surgeons who could help, there are 2 in Carlisle who seem reasonably experienced in parathyroid surgery and one in Lancaster.

[birkie in reply to Jazzw]

Hi❤️I'm an hour away from carslile my son lives there.. But is this a private endo app?? I can't afford to see a private endo.. This is why I'm getting frustrated with both my gp and endo WHO DIAGNOSED HYPERPARATHIYROIDISM, the next move should have been removal of the gland or glands.. 😠 For some reason the endo has done nothing but blood test after blood test.. Nothing is changing 😔😔

[Jazzw in reply to birkie]

No, I don’t think this is about going private—I think this is about being able to say to your GP:

(1) I have a diagnosis of hyperparathyroidism

(2) I’ve taken advice from Parathyroid U.K. (you’ve read the pages—he doesn’t need detail )

(3) I know that the uptake scan isn’t needed for a referral to a surgeon and seeing another endocrinologist isn’t actually required

(4) I know that these 2 surgeons in Carlisle are surgeons with experience in parathyroid surgery who I could be referred to on the NHS

(They are Ludger Barthelmes and Michael Williams, both based at Cumberland Infirmary).

And if the GP tries to get on to your thyroid issues, be insistent that’s an entirely separate issue and one which you’re happy to discuss once you’ve had a repeat T3 test but right now, your parathyroid issues are of greater concern to you.

If he refuses to refer you, ask for a clear explanation of why they want to waste NHS resources in sending you to an Endo who can’t help fix this problem and will only refer you to one of these surgeons anyway!

I’m not saying it’ll work but there’s a lot to be said about being clear about what you want and sticking to your guns. You know far more about thyroid and parathyroid issues than this GP will ever know. xx

[Jenny583 in reply to birkie]

Hi birkie,

I'm relieved that your'e stopping the vit D. The parathyroid hormone levels not all that relevant, its the calcium that's important. Also - if T3 is high - whatever the cause - that will raise calcium levels too. Here's an example ...

Hypercalcemia, an Uncommon Presentation of Hyperthyroidismclinmedjournals.org › ( sorry can't due the link).

It sounds like your GP is the one that's poisoning you? does the endo know that she's put you on vit D. That is very negligent of her, you could point that out as you have patient rights (if you are in the UK? ) If I were you I would do everything in my power to get an urgent referral to an endo, one that knows about parathyroid. Your'e right - you shouldn't have to go private, if I had to go that route I would send the bill to whoever poisoned you!

I might even go to the hospital, you have that right.

You must be feeling ghastly! You can't afford to wait till June, when was your last blood test, do you have the ranges? you may need to convert to whatever assay they use on the 'beware of high calcium' ranges in the web articles, but anyway your'e over range, & that's all that matters.

I was sent to an endo after confirmation of secondary hyperparathyroidism,(which is low calcium) but you clearly have primary,( high calcium) which needs urgent attention.

Please storm a proper Endo or hospital with your paper work now. Best wishes. x

[birkie in reply to Jenny583]

Hi.. ❤️ Thank you for all your help.. Actually it was the endocrinologist who put me on vitamin D not the doctor, so that's worrying in its self.. He did this because my uptake scan showed no uptake, so because my vitamin D level was 29 deficient he put me on the vitamin D, my pth was 9.5..i don't have the ranges to hand on this) my calcium was 2.87 and now is 2.80..ranges 2.10...2.60..before that test my other one the first one done was pth.. 8.3...calcium 2.87..he re did them 8 wks later and they were pth.. 9.5..calcium 2.78..ive had intermittent high calcium levels in my records going back to 2015..but gp never acted upon them.. 🤷‍♀️

[Jenny583 in reply to birkie]

Birkie don't go by the range you see where it says (calcium 10) your range is in n/mols. It's high, & anyway the PT & calcium levels do not predict the severity of symptoms.

If you are feeling that rough you need to see a hospital Dr. That endo who put you on vit D probably thinks your hyperparathyroidism is caused by thyrotoxicosis, but even if it were - he is negligent. The cause needs investigating ASAP & you need proper care right now. I hope you have family looking out for you.

😰

[birkie in reply to Jenny583]

Hi❤️Unfortunately I live alone 😔 I take my care in my own hands, but I can say this site has been a god send when I was diagnosed with hyperthyroidism (graves).. So to be diagnosed with hyperparathyroidism also is heartbreaking for me, I was just trying to get to grips with my thyroid medication T3.. Doing well tolerating it as I'm very bad with synthetic meds, I've gone from 10mg T3 to 35mg lactose free, I'm lactose intolorent, I feel I will never recover until this parathyroid thing is resolved, I live a stones throw away from the hospital, my gp is supposed to be rining me after 4...Just waiting on that call, but if I get nowhere I will go to hospital as I can no longer live like this.. 😢

[Jenny583 in reply to birkie]

I'm so sorry, that's just awful! like you - I live alone. I was always ready to phone hospital when I felt really bad, GPs were useless.The plan of action you have in mind is the right one IMO.

🙏

[birkie in reply to Jenny583]

Hi.. Sorry but what do you mean by thyrotoxicosis, do you mean over medication I'm only on 35mg T3... I have no thyroid, 🤔

[Jenny583 in reply to birkie]

Hi, I saw the T3 is very over range, so I wondered if the Dr saw that as hyper. I would feel very hyper with a result like that! Graves hyper can come back a little, even with no thyroid - I think?

[Jazzw]

Parathyroid U.K. also have a FB page—might be worth joining and asking for advice there?

[SlowDragon Administrator]

parathyroid.com/low-vitamin...

If you are over 35 years of age, and your blood calcium is high (over 10.1) you are almost certain to have primary hyperparathyroidism--a disease caused by a tumor. If your blood calcium is high and your vitamin D level is low, then you are almost guaranteed to have a parathyroid tumor (primary hyperparathyroidism).

If your endocrinologist tells you that your calcium is high because your Vitamin D levels are low... and wants to give you Vitamin D to make your calcium go down... then you should print this page and take it to them. This is wrong. You should also download the CalciumPro app on your iPad, iPhone, or Android phone/tablet. The CalciumPro app will graph your data so you can show it to your doctor.

[birkie in reply to SlowDragon]

Hi slowdragon ❤️Yes I've read that page too.. I've armed myself with info I'm in bed again just waiting on the call.... My vitamin D was 29..and my calcium was clocked at 2.87 and 2.80, my pth was 9.5...as I said the endo sent myself and my gp a letter saying I have hyperparathiyroidism 🤷‍♀️ I really don't know what they want from me,, seems like the endo again has requested more blood a ionised calcium test,, this will show nothing as the problem lies with the over active gland or glands which should be removed, I'm at my wits end I've had a terrible week can't stop weeing very thirsty, my heart is beating fast... Mostly on getting up and turning over in bed and a really strange weak feeling in my legs.. Bad body pain too.. 😭

[SlowDragon Administrator in reply to birkie]

Some of that could be high Ft3....which is very odd in itself on only 30mcg T3 only

Request endo do ultrasound scan of thyroid.....sometimes thyroid can grow back

[birkie in reply to SlowDragon]

Hi slowdragon ❤️

I don't think the high T3 is a true result, as I said the nurse was taking the full thyroid pannle and a ionised calcium, she put all the blood in to the same tube, I know that ionised calcium should be done separately, but I was to frightened to say anything as this particular nurse is not nice, I recived a message last week saying I need the ionised calcium test done again as there was a technical problem... The problem was the nurse didn't put the ionised calcium blood in the right tube (red top one) it says on the printout of the thyroid blood work.. so I'm dismissing the whole blood test and getting thyroid bloods re done on the 13 April only time they can fit me in... I asked if it could be done sooner than the 13th,the receptionist said NO we only have that appointment, weird seeing as it was their fault in the first place not mine but nevertheless I have to wait, in pain, with hyperparathyroidism symptoms not doing well😭😭😭