Well my heart rate as gone a bit nuts these past few days, it's been unpredictable since last year round about march/May.. my PTH elevated along with a calcium elevation in June, these were my thyroid blood results on 7th April this year,
TSH.... 0.05....range... 0.30...4.50mU/L________ this is what he is fixating on)
T3...5.9...range.. 3.10...6.80.. Pmol/L__________says this is to high) should drop T3 meds by 5mg
T4...2...range 11.00...22.00 pmol/L
He is dismissing all other symptoms, bad bone pain, kidney stones, gal stones, weeing tons, very thirsty,bad acid wash back, constipation bad stomach pains.
He says the tremor and fast heartbeat are the TSH result) 🙄
I could not convince him about my calcium /PTH being elevated, as always with these hospital's he asked me what I wanted from him as he could not refer me to an endocrinologist only my gp could do that, I explained I rang my surgery speeking to the referral manager to find out how my appointment was looking for the endocrinologist, she asked me how I was, I told her about my heartbeat 133 this morning when sitting 131,120, she rang my doctor to tell him he asked me to go to the hospital just to be checked out, so this was not my idea doctor, he said their is nothing wrong with your heart... Well doh I know that, he dismissed me saying you will just have to wait to get the appointment with the endo, BUT your T3 meds are to blame, for the way you are feeling 🙄🙄🙄
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🙄🙄🙄 He actually said my TSH should be around 3.6 or above to feel OK.. And my T3 should be about 4.3...where do these doctors train. 🤷♀️🤷♀️🤷♀️🤷♀️🤷♀️
Thank you for the reply, but that actual doctor was on A&E.. Not an endocrinologist 🤦♀️.. I had all my print outs with me of blood tests, calcium, PTH and thyroid bloods, and 2 letters from 2 different endocrinologist saying I probably have primary hyperparathyroidism, this is what my symptoms are not over medication, I had a prominent tremor still have ,got up this morning server headache I've had since last June, peeing loads and thirsty with bad bone pain, that's when the endo did PTH test June 2020 which showed it elevated at 9.5...and a elevated calcium of 2.67...and a vitamin D of 29....his next move was a dexa scan in Oct which showed ostiopeania in my spine, and knees/ankles, calcification in joints, gal stone, and I've been admitted to hospital several times passing kidney stones one being in June 2019 just after my thyroidectomy, he then put me on vitamin D in Nov which did nothing for my calcium which was still elevated at 2.67..it did bring the PTH down to 4.4 but I looked in to this after some lovely advice from someone on here saying I should not be on vitamin D with primary hyperparathyroidism it only lowers the PTH it does nothing to lower the calcium, unfortunately like most doctors who don't know much about thyroid /parathyroid conditions he kept saying my calcium was only mildly elevated, I took offence to that saying there is no such thing as only mildly elevated, any elevation in calcium can give a person awful symptoms especially with a raise in PTH to... I'm afraid he was one of those doctors who just would not listen... He knew best, I beg to differ!!! I left him with the 10 rules of Norman.. I said look it up you might learn something, bad I know but he had me riled by then.. A waist of time sending me to A&E but I know why my gp did, what I need is to be seen ASAP by a specialist,, still waiting on that... 😞😞😤😤😤😤
WOW, that was interesting 👍 I'm printing that out, can I pick you brains on this... In A&E yesterday this doctor was fixated on the TSH being.. 00.5....range... 0.30...4.50..mU/L....and the T3 being 5.9..range... 3.10...6.80..pmol/L.....ok...he was very sure this result was the cause of my symptoms... Of course egnoring the weeing loads very thirsty, bone pain, server headache ect.... He only concentrated on my obvious tremor ( which you can have with primary hyperparathyroidism) and fast heartbeat which is also a symptom of primary hyperparathyroidism)... So I put this to him.. Here's my thyroid blood results in June 2020,when all these horrible symptoms started (actually it was around May when I noticed the tremors, bad headache, peeing loads, very thirsty, just felt very unwell, below are the results:
TSH... 1.28... Range.. 0.30...4.50..mU/L______ OK range, not over medicated..
T3...3.5...range... 3.1...6.8..pmol/L
T4...1.8..range.. 11.00...22.00..pmol/L.....on T3 meds only)
I showed him these.. He said so you felt OK on those as your TSH is a OK range... I said no!! I felt awful as you can see in the June I had a elevated PTH and a elevated calcium... So it cannot be over medication, rabbit in headlights comes to mind when I saw his face🙄🙄.. I then went back to the thyroid T3 bloods he said was causing the problem the 5.9...he said was to high... Here's what I proposed to him.... I said if I presented myself to you here in A&E with a T3 of 5.9...and a TSH of 0.5...would you Diagnose me as hyperthyroid???? NO YOU WOULD NOT!! Because my T3 has not exceeded the golden range of 6.80...pmol/L...in my records going bk to 2015 I pointed out several TSH that were suppressed or below range, and my gp never bothered about them... WHY???? that's when he said... "lets agree to disagree with this shall we... typical reply when you are caught out to answer with that doc.. 🙄🙄🙄
In my completely unprofessional opinion, and based on my own difficulties with doctors, the doctor you saw knows nothing about the thyroid or the parathyroids/vitamin D/calcium, so he decided to find something... anything .... to blame you for in order to get rid of you. And blaming TSH no matter what level it is is absolutely normal for doctors!
HiBoth my gp and this hospital doctor think I'm over medicated, it's strange in that I do have tremors but that is a symptom of primary hyperparathyroidism also.. He didn't seem to recognise this, I don't want to decrease my T3 medication as I've done well I'm on 35mg was going to go to 40mg but the symptoms of hyperparathyroidism have took its toll on me this last few weeks 😞😞..
I don't think doctors understand the Graves interaction and that antibodies can be sitting on your TSH receptors thereby distorting TSH blood test readings and making TSH's the most unreliable measure of anything and that they should be ignored in Graves patients.
As you know you need to be monitored and dosed on T3 and T4 numbers, and since you are taking T3 only and that's in range so it's a tick in the box.
And so the madness of the medics dogma contnues, and your stress and anxiety levels rise, and exacerbate the Graves which thrives on stress and anxiety :
I am so much better staying away - but fully appreciate not everyone is as easily " fixed " :
Thank you for the reply ❤️ but I was told by my surgeon that A. all my hyper symptoms would go after thyroidectomy... OK.. Well the bad tremors did, the hyper felling did, the sweating dumbed down a bit but returned in the May / June 2020 as the tremors have, along with peeing loads thirsty, bone /body pain, headache, fast heartbeat this I attribute to primary hyperparathyroidism as 2 endos wrote to me saying this... But going bk to the graves) which after a uptake scan I was diagnosed with both lobes full uptake hence A. Went in to thyroid storm, B. Thyroidectomy in 2019...i asked the surgeon and endo about my antibodies would they remain??? The answer was.. Maby for about a year but you will eventually have no antibodies after that time🤔🤔 is this a true fact?? 🤷♀️
I don't believe so, Graves antibodies wax and wane, this is an autoimmune disease, and as such it's in your blood and DNA and if triggered your immune system is likely to react :
The simple fact is that now you haven't a thyroid for your immune ststem to attack, you are not living with a life threatening issue but a life limiting issue if not medicated optimally.
You and I have been flipped from hyper to hypo - so in the eyes of the medics we are sorted :
A thyroidectomy is a better option than RAI as it's cleaner and more precise and the land and all it's contents removed from the body.
With RAI you drink a toxic substance that slowly burns out thethyroid in situ and the contents of this gland lay in your neck festering, dying, who knows the consequeces ?
No one has dealt with the autoimmune component of the disease, I don't believe it disappears - it is just that now the thyroid has been removed, we can't boil over and ramp up our thyroidany more as this can have serious consequences bcause it's a major gland.
We ow have to full ourselves everyday - and taking too much thyroid hormone medication will still present with overactivity so you just put less petrol in your tank.
Your T3 is in range - and I'm afraid Graves isn't understood well the the mainstream who seem fixated on TSH being in range irrespective of what the patient's history is or where the T3 levels sit.
That was interesting thanks, here's another thing about antibodies in the body, you said and rightly that when our thyroid was in our bodies our immune system was attacking it making it go overactive (hyperthyroidism) graves, so the thyroid was removed (in my case) went toxic, I put the antibodie question to the endo last June when he noticed my PTH was elevated along with a calcium elevation, PTH first (8.1) in June then( 9.5) in Aug 2020..i asked if like hyperthyroidism (attacking the thyroid gland, could I be doing the same ie... My antibodies attacking the parathyroid glands?? Absolutely not was his answer, it does not work that way... That was that!!! But in fact the immune system can attack any part of the body.. Heart, bowles, thyroid, brain, ect why not the parathyroid glands? 🤷♀️
Graves is not exclusive to the thyroid but when there is a thyroid there to attack the symptoms are such that you need medical intervention so this is when medical mainstream become involved because the thyroid is all important.
Loosing your thyroid to an autoimmune disease does not resolve the AI disease it simply removes the target of the attack, and generally in maintream medical this is the only time they see Graves so think it's a thyroid problem.
There is little research, if any, into the AI component of Graves, all we seem to know, understand and acknowledge is that your immune system can be more easily triggered by stress and anxiety issues.
You might like to ask this question to Elaine Moore as if anyone knows anything it is this lady. she has spent years researching AI thyroid, and since she has Graves, there is an understanding far beyong blood test results and numbers.
She helped me confirm i wasn't going mad around 5 years ago when referred to as conundrum by the NHS.
The first phase of Graves that tends to take you to the doctor, is allocated a 15-18 month window as an O/P and treated with At drugs - at which time you are encouraged to take invasive drastic steps as it is seen that hypothyroidism isn't life threatening and easily treated in primary care.
Graves disease doesn't read memos and it takes as long as it takes for this first phase of this AI disease to pass, and your immune system response to calm down.
There was a very interesting post a week orso ago from Korea :
The longer the antithyroid drug is used, the lower the relapse rate in Graves' Disease :
Looking a patients over a 7 year period from diagnosis :
As to my going mad - you are entitled to your own opinion !!!!
That's very interesting and thanks so much for responding to me I appreciate it, I live alone and get deep in thort about how I'm being treated by the medical establishment, I knew I was hyperthyroid well before my gp did, but he kept playing on the menupause 🤷♀️ I found out last year after requesting my medical records he only did TSH tests which showed some just on the range some below range and 2 suppressed! If only he did T3, T4 i might not have had to wait over a year to get diagnosed and just maby I could have kept my thyroid 🤷♀️
I think maybe it's the fact that once diagnosed hypothyroid there's free prescriptions.- not that I've ever had any prescriptions for anything before told I was with Graves in 2003.
Now I self medicate and my prescription just has eye drops on it - single phails and i can only have one drop per day per eye - so obviously when the need arises I need to top up anyway.
I know I'm cynical and it's not really healthy - but again living alone, it's a bit like a dog with a bone :
.i asked if like hyperthyroidism (attacking the thyroid gland, could I be doing the same ie... My antibodies attacking the parathyroid glands?? Absolutely not was his answer, it does not work that way...
he was right , the way Trab (graves antibodies) work is not by attacking the thyroid, but because TRab has the same 'shape' as TSH it is able to attach to the TSH receptors on the thyroid..... therefore fooling the TSH receptors on the thyroid that it is TSH , and so causing the thyroid to making more and more T4 /3 the same as TSH would make it do. The end result is continuously too much T4 /3 (hyper) even though TSH itself is not causing it , and TSH is correctly supressed, because the pituitary senses the extra T4/3 and turns the TSH production off.
Their full name is T(SH)Rab.. meaning Thyroid Stimulating Hormone Receptor antibodies.
There are no TSH receptors on the parathyroid gland for them to attach too , so they can't do anything to it.
However there are TSH receptors on some bit's of your eye muscles , which is why TRab can cause TED, and why RAI therapy which initially increases TRab levels is not a good idea in TED patients.
I hope I've highlighted your name of one of "Ling's " post - I'm no good with this stuff and it's not the paper I was referring to, but another to give you some thoughts, and hopefully not a further headache.
.i asked the surgeon and endo about my antibodies would they remain??? The answer was.. Maby for about a year but you will eventually have no antibodies after that time🤔🤔 is this a true fact?? 🤷♀️
i was curious so i just had a quick google of 'persistance of Trab following thyroidectomy' and it does seem that nearly always , they do slowly disappear within year or so..... however you do find an odd case here and there where they didn't .. one case a woman had ?some thyroid tissue in her ovaries.. (sorry didn't read it properly ) but in her case it was obvious there was an issue because she remained hyper even after the thyroidectomy.....and in other studies a couple of cases were "not included in results of studies because they still had Trab and needed further investigation/treatment.. so basically it seems they usually do go away , but unless you test them you can't absolutely rule out that you could still have some.
Sorry for my sketchy research... I'm teetering on the edge of a headache so didn't read anything properly.
Hi... 😂 Can sympathise with you on the headache 😔 I've had one on and off since May last year, but I know its linked to primary hyperparathyroidism, I read that article on the woman with thyroid tissue in her ovaries, very strange but the human body is strange!.. What's also interesting is every doc I've seen apart from my uninterested doctor, has noted I'm hyper one going so far as to ask if I was taking a stimulant.. 🙄 I said no just my thyroid meds, each have noted my blood work does not indicate over medication, and one set of blood work indicated hypo... BUT I was showing hyper symptoms, the doctor who was a locum at our surgery scratched his head😂... I really do think my ongoing symptoms are linked to primary hyperparathyroidism as the symptoms are similar 🤷♀️.. Last year I asked the endo in Newcastle to do the antibodie test just to be sure I don't have any hangers on😂 he told me their is no need to do that test as it will show nothing!! I'm now saving up to have the rumertoid arthritis test, and the antibodie test, I have ostio arthritis and ostiopeania, but my mother had rumertoid arthritis in her knees/ankles they were very painful and swollen as are mine they are also hot to the touch but the gp says theirs no need for a rumertoid test.. 🙄 Goodness knows how much it will cost but I've cut down on spending to squirrel some money away 👍
I was trying to understand hyperparathyroidism the other day.. that really did give me a headache ........ but that 'parathyroid.com' site did seem pretty good , and quite clear that you can't be 'a little bit high on calcium, so it's not a problem'.. it's either over , or it's not , and if it's 'over' it doesn't matter how much over it is....it's more about 'how long it's been over for' that causes all the problems.
Not surprised you've got a headache trying to get your head round it
I learned on there that the thyroid produces calcitonin in response to high calcium levels, (as part of the regulatory system for calcium as well as PTH from parathyroids)... which made me wonder "what happens to that bit of the calcium regulating system when you have a thyroidectomy ? "..... don't know the answer.. got a headache before i found out
I've read up on the 10 rules of Norman, yes any elevation in calcium even by 1, example Normal calcium is 2.10..2.60..so 2.61 can show bad symptoms where some people can have 2.80 and show only mild symptoms, it's the individual person, I have 7 elevated calcium going bk to 2015 one being 2.89..others being 2.67,2.61,2.75,2.68 and so on... But when these came back I for one never saw these because at that time I never asked for blood printouts, I would urge any new members on here to ALWAYS get blood work printouts🙏.. Also at no point did my gp request a PTH blood test with these calcium levels🤷♀️.. Hence I'm certain I've had primary hyperparathyroidism for sometime undiagnosed. I have ostiopeania, ostio arthritis, kidney stones, gal stone, ect this is what can happen when you do not treat primary hyperparathyroidism slowly over a period of years it will destroy your body, 😔
I agree , the amount of things they don't tell you that come back as 'wrong' on blood results is worrying.. especially if it's not just a one off odd result... i later found i'd had below range lymphocytes for several years at the same time as i was diagnosed hypo with very high TPOab... still not sure what this indicated , or if it mattered , but no one told me about them anyway.
And having read that parathyroid.com site . if i had your history of calcium results and 'osteo' and 'stone' thingy's, id be wanting my parathyroid thoughts to be taken seriously too.
Yep I'm trying to get to see the endo, the refera manager at my surgery is so nice far nicer than the GPS.. She as actually said goodness you have been through some pain this last number of year you definitely need see ASAP, the poor woman is trying so hard for me, I rang yesterday just to see how it was progressing with the appointment, her voice was so sad in that she said "I'm so so sorry Karen I did get you an early appointment with an endocrinologist but she as since decided to go on leave for a fortnight, 🤷♀️ still waiting 😔😔
One thing i don't understand,, if you have a total thyroidectomy ... what do they even do with your parathyroid glands ? i mean where do they put them, assuming they can even find/separate them in the first place... and is it even possible to have a complete removal of thyroid without seriously upsetting your parathyroids ?Are they supposed to 'just be a bit pissed off for a while' and then get over it and carry on as normal ?
And that's a good question, 👍 one I did touch upon, my surgeon was fantastic my scar is barely visible 👍.. He told me first their is a % chance we could nick your parathyroid glands in the process of thyroid removal, this in turn could upset the balance of them or just upset one, but the procedure is to remove as much thyroid tissue surrounding the parathyroid glands as possible , they sit at the back of the thyroid gland, and have 2 tube like things which anchor them to the neck.. After surgery you have PTH and calcium blood work to see if the parathyroid glands are working properly, you also need to take calcium tablets for a specific time, I didn't need to do that I only took about 4 calcium tablets after surgery as my calcium was OK so was my PTH so I was discharge, but well before this thyroid surgery,, in 2019 in 2004 ,i was diagnosed with primary hyperparathyroidism 🤷♀️ but the surgery I was with at that time did a wait and see approach, I got so sick of feeling sick I left moved to my present surgery and got diagnosed with ME/fibro/cfs... Think that was a wrong diagnosis 🤷♀️
don't know .. but you'd hope that if one of your parathyroids was enlarged at the time they would have seen it /commented/ ?removed it, during the thyroidectomy... i had got the impression that the way parathyroids go wrong is because they become enlarged.. so you'd think they'd notice.
... however my 'research' only extends to 'half an hour the other day'... so i could be talking rubbish.
I tend to think that a 'diagnosis' of cfs/me fibro in someone who they already know has something wrong in the thyroid department is deeply suspect...
This is where thyroid and parathyroid disease can become complex, first when I was very overactive the doctor tested my neck explaining their was no goiter... You do not always have a goiter with graves, in some cases which are usually people who do not seek medical help like in poor countries or people who live far from medical help leave the condition to where it develops a goiter, people are different and some can and do have swelling around the neck very visible some don't, my swelling was from the inside I had trouble swollowing food, and talked like I'd smoked from the age of 1..never smoked!! My surgeon told me after the op all my swelling in the 2 lobes were inside, this also happens with parathyroids, in that because they are about the size of a grain of rice any swelling (odema) small or large can cause terrible symptoms, you can have 1,2,3,or all 4 go overactive, it only takes 1 to feel the symptoms, some people will be mildly affected some will be badly affected, I've seen parathyroid surgerys done by Dr Norman, some patients had noticeable enlarged parathyroid gland/glands some didn't but that didn't mean it wasn't overactive, it's the calcium and PTH out put dr Norman focuses on, because that's the thing that affects the body in the long term.. That A&E doctor felt my neck yesterday, 🙄 he said you have no swelling in your neck... Firstly as I told him the parathyroid glands are the size of a grain of rice, try thinking of it like this you have a round bread cob you push 4 grains of rice in to it.. By feeling around the outside of the bread do you think you could feel the rice? Even if one was slightly bigger, Dr Norman does not go by scans or feeling patients necks he goes by the calcium /PTH out put... Elevated PTH elevated calcium vitamin D deficiency inevitable its primary hyperparathyroidism, I've certainly learned a lot from his site.. Now to educated my endo... 😂
A&E doctor 'feeling for parathyroids'... Mmmm .... Wonder how big he thinks they are supposed to be .... or where he thinks they are supposed to be... to be fair, i suppose A%E docs are better at looking for obvious signs..... like blood falling out all over the floor.
😂😂😂😂😂 Yea,, he even looked at me like I was nuts when I told him they can also migrated in the body, like high in the neck and chest, talk about something going over his head... Whoosh... It felt a bit surreal telling a man who obviously has gone to some teaching establishment for several years to become an A&E doctor that most of the stuff he was spouting was utter crap.... 😂😂😂
I hope I'm not giving you a bad headache with all this.. 🙏 But a quick note, both the endo and gp think T3 is not working for me.. Go figure... I think the cost is the problem, but if they come across this again with me... And I'm sure they will given what I'm going through at the moment I will call their bluff and ask for natural dessecated thyroid, 👍👍👍👍😂
HiWhen I was on T4, Thyroxine I had a conversion problem that's what the endo said so I was put on T3, started on 10mg and now are finally on 35mg was going to go up another 5mg making 40mg in all, but this hyperparathyroidism is taking a toll on me,, I split the meds through the day.. 8am 10mg,1pm15mg 8pm 5mg...this has worked that I now think my bloods look OK.. Of course the gp and A&E doctor say I'm over medicated 🤷♀️ I felt OK till last May as I said when these awful symptoms started then I had the elevated PTH and calcium been that way ever since last year 😤
I don' know enough to comment really -but I do know you are not over medicated and little and often makes sense for some people whilst others take larger doses - it's about putting into the body sufficient fuel to get your through the day :
I read the average person needs to utilise around 50 T3 daily just to function:
I read of some people on 6 grains of NDT so presume they aren't utilising well the T4 content and would probably be better off financially on T3 only.
I think it's abot having options readily available to try help rather than hinder the patient and when they don't know the answer, to be honest, and not just blame the patient in some sort of backhanded manner.
Ah ha .. well that makes sense...... except you still can't get more/ less calcitonin as a reaction to high calcium levels in the blood , like you would if you still had a thyroid ? and i think the thyroid only produces calcitonin as a reaction to high calcium , so maybe it depends on if the piggy's in question had high calcium levels ?
You can come into the playground as well - as we've swings, as well as roundabouts and seesaws - there is no one else here - we will be socially distanced !!!
Hi priscilla17❤️Thanks for the link... I've tried to join but for some reason won't let me, I don't have a Facebook account could that be the problem 🤔
Sallie Powell is the lady who set the website up and she will respond to you. If you are struggling to write it all down, maybe ask her to call you-if possible.
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NHS Endocrinology appointment with results of NHS T3 tests. Are latest bloods in my favour or will they work against me?
Hypo or Hyper I'm so confused 
DR says I'm fine!!!
