Endo decrease my T3 for over medication?

[birkie]

Hi everyone ❤️

Well I'm not surprised I'm writing this post, on my last thyroid blood work being:

T3.. 6.4...range.. (3.10....6.80)

TSH..0.05.. range.. (0.30...4.50)

The endo decrease my T3 from 40mg to 30mg because I was over medicated, the only reason I agreed with this was because of awful symptoms I've been having since early 2020..frequent trips to the toilet especially through night, server thirst, dehydration, constant headache, bone/joint pain, horrible metallic taste in my mouth, stomach pains, constipation, feeling sick being sick, muscle weakness, bone vibration, server tiredness, irregular heart beats, just a feeling of being very unwell, the gp said all the above symptoms would go after I decrease the T3... They have not the only thing I've noticed is the metallic taste as diminished slightly.

I have just received my new thyroid bloods done on 14th March 22:

TSH...(23.47)....range.. (0.03..4.50)

T3..( 1.5)..range.. (3.10..6.80)

T4..( 2.5)..range.. ( 11.00..22.00)

These were taken 9 wks after decrease, I'm obviously hypo NOW!

I had an appointment with a gp this Wednesday to discuss what's been happening I tried to explain to this gp (1,) these symptoms have not gone and are linked to primary hyperparathyroidism as I've had 2 over range parathyroid hormone and over range calcium I'm still fighting with the endo on this, gp seemed uninterested in this and went on to ask what I wanted I said to see a parathyroid surgeon, he refused that!! , saying I could maby see an endo again😠 OK by now I was a little angry saying "the endos don't really know much about thyroid and parathyroid illness he took offence to that, he got my bloods up for parathyroid, June 21 and insisted my parathyroid was OK at (5.3) I then went on to tell him he had the wrong information as I'd had further blood done on Dec 6th 21 and the pth was (2)...range.. (1.60..6.90)..now further tests done on march 17th 22 at this surgery:

PTH.. (6.6)..range.. (1.60..6.90).... From (2)

Calcium.. (2.64..adj to 2.49)

Vitamin D.. 43 ( note I've been on better you vit D spray 3000iu since September 2020 after it came back as 29

I mentioned the relationship between calcium and parathyroid hormone being if both are at the high end their is probably something going on with the parathyroid glands, I have 5 in my records, unfortunately he wouldn't listen and was resting his elbow on the chair with his hand resting on his cheek like he was soooo bored, I then said in a firm voice "JUST LOOK AT THE PRINT OUT" he then asked me to leave the surgery, he never sorted the thyroid bloods out even tho I asked what they were he would not furnish me with them so I got a printout at reception, I'm now left in limbo.. I did ring my surgery asking reception to let the gp who decrease my meds know what the results are and what does she recommend? that was yesterday afternoon so far nothing from my surgery, obviously I'm not silly after being on her for some years I know I will trilateral up by 5mg 👍 but what a way to treat a patient 😠😠😠

[Jazzw]

Oh Birkie. That’s just awful. 😞😢 I’m so sorry xxx

If you have the energy, please put in a complaint. But I know you probably don’t have the energy.

Makes you despair for all the other poor patients of this ignorant man.

[birkie in reply to Jazzw]

Well I was so frustrated when I got back home I first rang the surgery up to ask for the thyroid results to be shown to the gp who decrease my t3 meds as to what plan she has now!! I then fired an e- mail off to practice manager going over what happened in the appointment, and asking for a meeting to discuss my treatment with this surgery over the last 4 years, she as 3 day to respond to me 🤞🤞🤞

[shaws in reply to birkie]

I think you're doing the right thing. We, the patient, know full well what thyroid hormone or dose relieves our symptoms.

[birkie in reply to shaws]

Hi shaws🌹

I honestly don't know what my surgery are playing at, I rang on the 23rd March to ask for the gp to be informed of my thyroid results they are bad TSH is 23.47...T3 1.5..T4..2.50..it said on the printout see gp within 7 days.. I had no response so I rang again on Thursday 31st to ask if the gp had seen the results, the receptionist just said again she would put a note on the GPS computer to call me she was not in surgery on Thursday but was in on Friday but I received nothing from her.. 😠.. Also I sent the e mail to practice manager on the 23rd and nothing bk from her either, it says in our pamphlet they have 3 days to res that's way over now... To be honest I'm getting stressed out by this, I'm only trying to find out what's going on.. And I'm now out of my thyroid meds to.. 😠

[shaws in reply to birkie]

Ring surgery tomorrow and demand a prescription is left out for you or has it been sent to your pharmacy?

If you have a negative response. State that you have been stressed out due to the non-action from the surgery and that you have had to contact a Healthunlocked forum for assistance and advice.

Put your complaint (you wont be popular in the surgery) but they. may sit up and do as they should have done already.

Tell your GP you've been onto a Healthunlocked forum help line because you are now desperate and require a prescriptions but getting no help from whoever you speak to.in the surgery.

[birkie in reply to shaws]

Actually I think I'm stupid shaws and to kind as I'm on T3 I didn't want to re order the T3 because I get 4 months supply so I know it costs a lot of money, (I've just about had it with this sugery) when the gp actually gets round to contacting me I was going to ask if I could go bk on T4 lactose free for a trial as I'm sick of them saying all my symptoms are down to the T3 meds even with the 10mg decrease I still have bad symptoms, yeah I'm actually going to go down to the surgery as rining the receptionist gets nowhere 😠

[DippyDame]

Maybe he was sussed out by a well informed patient and could only respond by being rude because he had no answers...It's a monumental disgrace birkie

Makes you wonder why that type become medics....

This is the GMC's statement on Good Medical Practice...

gmc-uk.org/ethical-guidance...

It states -

Good medical practice describes what it means to be a good doctor.

It says that as a good doctor you will:

make the care of your patient your first concernbe competent and keep your professional knowledge and skills up to datetake prompt action if you think patient safety is being compromisedestablish and maintain good partnerships with your patients and colleaguesmaintain trust in you and the profession by being open, honest and acting with integrity.

How does that equate with your experience?-

he wouldn't listen and was resting his elbow on the chair with his hand resting on his cheek like he was soooo bored, I then said in a firm voice "JUST LOOK AT THE PRINT OUT" he then asked me to leave the surgery, he never sorted the thyroid bloods out even tho I asked what they were he would not furnish me with them so I got a printout at reception, I'm now left in limbo..

Just in case you feel like complaining!

[birkie in reply to DippyDame]

I already have DippyDame👍 I've fired off an e - mail to practice manager going over everything that occurred, and asked for a meeting with her at the surgery she as 3 days to respond 👍 thanks for taking the time to reply to me❤️ think I just wanted a good let off of steam.. 😌😌

[DippyDame in reply to birkie]

Good luck...

[tattybogle]

perhaps i'm missing something , but while your PTH and Calcium results keep coming back within range , surely he will have difficulty justifying referring you to anyone for suspected parathyroid issues?

The huge difference in your TSH /fT3 levels from lowering T3 from 40mcg to 30mcg is very surprising .. especially the fT3 being now being so far under range while still taking 30mcg everyday.

Did you take 30mcg every day leading up to this test , or did you take some days off taking any T3 at all?

[birkie in reply to tattybogle]

HiMy PTH in June 2020 was 8.1..(range...1.60...6.90..my calcium was 2.53 range 2.10..2.60) top end.. Aug 2020 PTH... 9.5...calcium 2.54 top end this is considered a bad relationship between PTH and calcium if both are at the top end their is a problem,.. i took my T3 as I always have spilt 3 times a day 8am 2pm 7pm...one hour before after food so no absorbtion problems, I have colitis and are lactose intolorent on teva lactose free T3.. I found the result alarming especially the T3.. I have been very unwell since early 2020 with the symptoms I mentioned, also your calcium does not have to be over range to have a parathyroid tumor, the endo wrote to me telling me I probably have primary hyperparathyroidism in 2020 but they are doing the old watch and wait just keep giving her blood tests if we get a normal one bk we can discharge her, I was actually discharged by the first endo on my 24H urine calcium test as not having enough calcium to Diagnose primary hyperparathyroidism, you don't use the 24H urine test as a diagnosis that was after the 2 over range pth and top range calciums in june/aug, 🤦‍♀️

[tattybogle in reply to birkie]

but your if your parathyroid results and calcium results have been back in range since 2020, i still don't see how the GP can refer you to a parathyroid surgeon just because you had out of range results in 2020 that have since returned to normal. Presumably they are not at all keen to re-operate on someone who's already had thyroid surgery unless they have very good cause, due to all the scar tissue that's already there. making further surgery in same area problematic ?

So given the circumstances, 'watch and wait' seems a reasonable course of action for your parathyroid concerns.

And to be fair ..lots of your symptoms which you say are parathyroid do present as 'overmedicated' (I had calcium oxalate crystals in my urine when i was overmedicated on Levo , they went away when dose was reduced) .... so trying a reduced dose of T3 to see if your symptoms improved also seemed like a reasonable idea to me. Certainly it was worth a try .

The massive change in latest TSH /fT3 result is concerning , i agree.

But i don't see what you realistically expect the GP to do about your parathyroid concern while those results are 'normal' again .

I'm not saying you're wrong to suspect parathyroid problem .. just saying i don't see what the GP can do differently on that issue unless your results go out of range again.

being pragmatic ...what would you want to happen if you were referred to a parathyroid surgeon ?

it doesn't seem like your going to get anywhere with the NHS about the parathyroid issue at the moment... perhaps it's time to cut your losses and find somebody private if you really want somebody to re operate on your neck while you have 'normal' looking PTH/calcium levels

[birkie in reply to tattybogle]

Well actually if you study parathyroid problems in a normal health person we see a see saw effect if pth is mid range the cal will be lower and vice vesa. However in parathyroid illness if both pth and calcium are at the top end.. In a V ) THIS IS A BAD RELATIONSHIP BETWEEN PTH AND CALCIUM) you don't have to have over range calcium, pth, plenty of people have parathyroid surgery with levels that go over range then bk in range both pth cal.. All the parathyroid glands do is regulate calcium its a tight regulation.. Just because your bloods go bk in range does not mean you don't have a tumor on one or more pth glands, mine went bk in range then one I had done in June 21 was top range pth top range cal.. Now just last week.. Pth 6.6 top range cal 2.64..adj to 2.49 top range showing a bad relationship between PTH and CALCIUM.. its not as simple as being in range am afraid, especially since I now have ostiopein, passed kidney stone loads of them have renal impairment, calcification in most joints and heart ( calcium deposits due to untreated hypercalcaemia) all in my records its a complicated disease 😔

[tattybogle in reply to birkie]

i realise that, honest ... but i still don't see how they can refer you until your bloods show a problem again.

[birkie in reply to tattybogle]

Actually the guidelines for primary hyperparathiyroidism are cal over 2.50 with top range PTH or over range PTH.. Kidney stones, ostiopein, ostioporosis, renal imparment, the guidelines recommended surgery 4 gland exploration, but as you say getting past the nhs is virtually impossible, most go private and have the tumor removed, also the watch and wait procedure just leaves you to become more ill with kidney stones worsening ostiopein, ostioporosis, worsening renal problems ect, so that's not a good more like a death sentence 😔

[tattybogle in reply to birkie]

" I was actually discharged by the first endo on my 24H urine calcium test as not having enough calcium to Diagnose primary hyperparathyroidism, you don't use the 24H urine test as a diagnosis that was after the 2 over range pth and top range calciums in june/aug, 🤦‍♀️"

NHS don't use 24hr urine test as a diagnosis for hyperparathyroidism , they use it to rule out FHH (See below)

So if they previously referred you for investigations in Secondary Care for suspected primary hyperparathyroidism based on serum calcium +pth results , and then Secondary care discharged you due to a 24 hr urine test , it looks to me like they think you have FHH ..in which case NICE guidelines seem to say it doesn't need treating ?

nice.org.uk/guidance/ng132/...

"1.2 Testing and assessment in secondary care

Excluding familial hypocalciuric hypercalcaemia

1.2.2To differentiate primary hyperparathyroidism from familial hypocalciuric hypercalcaemia, measure urine calcium excretion using any one of the following tests:

~24-hour urinary calcium excretion

~random renal calcium:creatinine excretion ratio

~random calcium:creatinine clearance ratio.

Testing and assessment in secondary care:

Why the committee made the recommendations:

Excluding familial hypocalciuric hypercalcaemia

The committee agreed that it is important to exclude familial hypocalciuric hypercalcaemia (FHH) because it needs no operative treatment. Evidence showed that the 3 tests recommended are equally accurate in the diagnosis of FHH. The committee were not able to recommend thresholds for these measurements because the evidence is inconsistent."

[birkie in reply to tattybogle]

Been tested for FHH it was negative,

[shaws]

Just considering the following sentence alone:-

"I'm still fighting with the endo on this, gp seemed uninterested in this and went on to ask what I wanted "

I think you've knocked his 'nose out of joint' by seeming to know more than he does about how to treat a patient with hypothyroidism.

[birkie in reply to shaws]

Hi shaws❤️Totally correct he let me leave his office without addressing the THYROID results how very unprofessional of him... Yes I think your right in what you say shaws, he even admitted the parathyroid thing was above him and I seemed to know way more than him on that subject, think I know more about thyroid also, I told the gp who decreased my T3 meds I didn't look over medicated my T3 is in range..At 6.4.. She pointed to the TSH saying but this is 0.05...so you are over medicated 🤦‍♀️

[shaws in reply to birkie]

No wonder we are not impressed by any GPs knowledge.

Next time tell GP that the TSH is from the pituitary gland not the thyroid gland.

Once-upon-a-time - before blood tests were introduced - we were all diagnosed upon our clinical symptoms alone and prescribed NDTs (natural dessicated thyroid hormones) that seemed to be more tolerated as it is made by 'animals' thyroid glands'.

NDTs saved lives without the need for blood tests since 1893 but by taking account of our clinical symptoms alone. Before that people just died.

It is very unfortunate that the UK's experts' in hypothyroidism removed NDTs from being prescribed. Just goes to show that their knowledge is very weak. despite NDTs long history in saving lives.

[birkie in reply to shaws]

Actually shaws I did tell her it's from the pitruitry and it's just a stimulating hormone, it's T3 that's the golden rule with us who take T3 only.. No need to do T4 test doc.. She argued its a hormone your wrong TSH is the best way to see how your thyroid is functioning, well doc I wonder what you think now when you sed my latest tests.. 😂

[shaws in reply to birkie]

One of the GPs in my surgery phoned to tell me (a number of months ago) that 'your TSH is too low - your T3 too high and T4 too low!

My response: "As you know, doctor, I take T3 only, so my T3 will seem high and T4 is low because I take none".

His response ' T3 converts to T4' - "No doctor that's untrue. it is T4 that is supposed to convert to T3".

[Jenny583]

Could it be that the Vitamin D is causing more problems, by carrying calcium to bloodstream?

[birkie in reply to Jenny583]

Thanks for mentioning vit D.. I spoke to the endo he said to up the vit D even tho my calcium has been bouncing around at the top end 2.59.2.64 adj to 2.49 last cal done.. I actually decrease vit D for a month before my bloods to see if it made a difference obviously it hasn't.. Endo make the mistake thinking the deficient vit D causes high PTH when in fact it does not and you don't give some one vit D with a cal of 2.54.. As they did with me.. 🤷‍♀️🤷‍♀️

[Jenny583]

Oh Birkie! if it was me I would have done it the other way around, & taken the D3 BEFORE tests! you need to prove the calcium is over range to have a hope of getting anywhere.otherwise you are playing into their hands.

But anyway I would not be taking D3, as D3 is what enables calcium to go over range - & you really don't want that - if the calcium is making you ill. + the T3 that you have to take to function seems to kick off the high calcium, which will make you MORE ill.

I don't know if you felt better without the D3, but have you tried it? & if so did your symptoms ease?

Do you have pro bono medical lawyers where you live? that would be my 1st port of call.

I hope you get some help from somewhere, as I can't help but feel these 'Dr's' are setting you up.

😰

[birkie in reply to Jenny583]

HiI had high cal before going on vit D.. 2 at 2.61..but gp said they are only mildly elevated 🤦‍♀️ I made him send them to the endo who requested the pth cal test my cal was 2.54 in Aug 2020 and my vit D was 29 in September 2020 unfortunately the endo as not done my bloods correctly the labs used an old vit D from 2019 in june/Aug 2020 you have to do all 3 in one draw pth, cal vit D they have played me about since 2020 with incomplete blood results, highest cal was in March 21 at 2.68 then 2.59 in Aug.. Honestly they don't know what they are doing.. Wish I could win the lottery 6 grand would do so I could go private 😔

[Jenny583 in reply to birkie]

No offence birkie, but are you sure they don't know what they are doing? After all- they are supposed to be medically trained.But I get what you're saying, about all the mishaps - but - call me cynical, but it all sounds too much of a coincidence that they would be making so many blunders since 2004?

I really feel for you, & wish I could deliver a big hug + a big magic wand.

Please don't let them get away with any more nonsense!

😠🥺

[birkie in reply to Jenny583]

HiIt's not that simple I was diagnosed with early onset of primary hyperparathiyroidism in 2004 at my old surgery, as I was getting no further ahead with them my results were.. 4 calciums.. 2.61. 2.61. 2.61.then 2.68 with over range pth and high calcium oxalate crystals in my 24hour urine calcium test, my partner made me leave that surgery I got into another surgery the one I'm with now and did see a lovely Dr.. ( no longer at the surgery 😔) who listened to me then sent me to see Dr ong at Newcastle he diagnosed me with chronic fatigue, fibro, ME.. I never had another pth done but did have calciums did in routine blood work they were 2.76..2.89..2.67..2.64 and so on from 2015 onwards they are the only ones I can find no gp acted on those calcium results, so when my thyroid went nuts in 2017 (took gp over 12 months to diagnose me as overactive 2018 (graves lost my thyroid) I was having blood work done for thyroid that's when I noticed the over range calcium, but gp didn't pull me in, I got printouts and found them myself so my journey begins again with primary hyperparathiyroidism 😁.. Told you it's not that simple 😂

[Jenny583 in reply to birkie]

Ok birkie! I have no words! I hope you hold these quacks to account while you are still able to. That is blatent negligence! The UK have an overseer from what I can gather, also MP's & maybe the mafia, surely they are paid by your taxes to haul these dangerous incompetents before some disciplinary body. 🥺

[DippyDame in reply to Jenny583]

The reason most of us are here is because the medics supposed to have the knowledge to treat us appropriately are just not capable of doing that job.

We have had to learn about thyroid disease in order to recover our health.

Many of us, myself included, have to self medicate to ensure we can function.

The state of thyroid care for patients who do not respond to basic levothyroxine treatment is appalling, evidenced by the fact that well over 120,000 dissatisfied patients have turned to this excellent forum.

I hope you are keeping well

[birkie in reply to DippyDame]

Hi DippyDame❤️

That's so true.... When my thyroid surgeon asked me if I had any questions for him before I go under the knife I said only one "will I be able to take the synthetic thyroid hormones I will need for the rest of my life" ? Cheerfully he said "ho yes absolutely thousands upon thousands of people take synthetic thyroid hormones and have no problem at all, you'll be fine... Yeah rite... 🤦‍♀️🤦‍♀️🤦‍♀️

[shaws in reply to birkie]

Maybe a number of Endos need to have their own thyroid gland removed to actually find out how disabling symptoms can be and may also be a 'good' learning curve.

Why should, mainly women with hypo only be prescribed levo (it definitely doesn't work for me) and people are usually told they are 'depressed' and given another medication without ensuring both FT4 and FT3 are at the top of the ranges with a low TSH.

[Jenny583 in reply to DippyDame]

Hi Dippy, yes I agree with you. Thyroid Uk has helped so much, I would not be here if not for TUK.I know full well that many cannot tolerate levothyroxine, & it may be that I may turn out to be one of them, only time will tell, as I had to do things the other way round by starting with some very dodgy self sourced substitutes, for me the excipients in NDT were a problem. & only now after decades of being hypo am I finally able to obtain Levo - again with help from this forum.

But I will almost certainly be needing to source T3 soon!

This forum really is a Godsend. Take care.

[shaws in reply to Jenny583]

When I was first diagnosed I met an older woman in the local hospital. As I was newly diagnosed and given levo I felt awful.

Especially when awful palpitations kept husband and myself awake.

The woman was very friendly and she told me she had hypothyroidism but was active/talkative/nice and said don't worry 'you'll soon be fine on levothyroxine.

I certainly was not but I can understand that many patients who seem to do fine on levo confuses the doctors why some are still complaining whilst others seem to do o.k. on levo.

[Jenny583 in reply to shaws]

Thanks for sharing that shaws. I get woken by palpitations, don't get much sleep either. I hope it doesn't get worse when I increase dose by 12.5 tomorrow.

[birkie in reply to Jenny583]

Good luck with your increase jenny I hope it works for you.. 👍👍🌹🌹🌹🌹

[Jenny583 in reply to birkie]

Thanks birkie, I hope & pray that you get the solution for yourself too!🤗🤞

[tattybogle in reply to Jenny583]

Why are you increasing before the GP has done any bloods on 100mcg ?

[birkie in reply to tattybogle]

I'm not on 100mg..im on T3 was on 40mg gp said my bloods showed over medicated, at T3.. 6.4..TSH at 0.05..so at the request of an endo who she consulted with she decreased me.. Obviously I need to go bk up as I'm now hypo.. TSH.. 23.47.).T3..1.5..)T4..2.50) these are my results after the decrease 🤦‍♀️ so will need to increase by 5mg then re set again in 7wks..🤦‍♀️

[birkie in reply to tattybogle]

Sorry that's my eyes it's like looking through watery milk thought that post was directed to me tattybogle.. 🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️

[Jenny583 in reply to tattybogle]

GP won't do bloods, only telephone consults. I have to continue with monitoring with private overseas finger pricks to check TFT's 🎯

[tattybogle in reply to Jenny583]

Jenny583

What.... so they prescribe without knowing what your bloods are ? how is that supposed to work ? are you supposed to tell them your private results or do they just guess......

[birkie in reply to Jenny583]

I'm afraid this is all to real jenny their are a lot on here that can't get proper bloods done, my own cousin had 2 supressed TSH with over range T3 but because it was only one point over the nhs range she was not treated, or offered further blood tests, she has just come bk from a private appointment in Leeds to see if she can get sorted he as done bloods.. At her cost but as looked at her previous one on the nhs and said if they come back abnormal he will refer her bk to the gp with the blood work as she should have had further blood tests done by her gp in the first place 🤷‍♀️

[Jenny583 in reply to birkie]

Sorry birkie, I am only getting 4 hours sleep each night!

What I mean't was; that I wonder if they are being deliberate? when they treat you so appallingly! maybe I'm getting cynical in my old age, it just strikes me that their incompetence is disturbingly suspicious given all their training?

[Jenny583 in reply to tattybogle]

The GP based his judgement on the MMH test I had after 6 weeks, he knows that with the 7lb weight gain in 7 weeks + the 3 stone weight gain in 3 years (after I ran out of reliable T3) means that I need at least 50% T3, & that I need sufficient T4 to convert to the active T3.

[birkie in reply to shaws]

My mum was hypo the gp put her on levo.. ( this was way before my graves diagnosed she died before I got that) she took her levo 175mg daily no problem at all.. But she died of motor neurone disease not even anyone on my mums side of the family ever had this condition, I thought she might have died with complications of thyroid, she did have a heart attack in her late 50s..😔

[shaws]

I think that when a hypo patient responds to a doctor as if we know more than they do (we actually do in many cases) that their ego is damaged and they don't like us very much.

It reminds me of my GP - after a blood test "Mrs G your TSH is too low, your T3 too high and T4 too low". "Yes doctor that's because I take T3 only, so T3 will be high. T4 will be low as I take none. GP "but T3 converts to T4". "No doctor, it is the other way around.

[birkie in reply to shaws]

Yes I had the same thing with a gp some time ago saying T3 converts to T4.. 😂.. Same as my results the endo requested the gp decrease my T3.. Eventho it was in range at 6.4..it was the TSH that scared them🤦‍♀️ 0.05..i have no thyroid I thought my levels looked good.. All my symptoms do not show over medicated, I never went on the toilet as much especially through night to wee or had utter thirst bad headache, bone joint pain, bone vibration ect when I was very hyper T4 100..t3 39.6..TSH not detected, nor when I was on T4 and I wasn't converting or absorbing the drug.. 🤷‍♀️

[Jenny583 in reply to birkie]

I wonder if there is a technical term for a morbid fear of the pituitary to thyroid signal.Pitothyrophobia?

[Jenny583 in reply to shaws]

Yes, your story many times. It's a classic !😰

[bantam12]

If your calcium is high taking 3000 vitd is not helping, in your shoes, (which I have been,) I wouldn’t be taking it. There’s little point in expecting a GP to know much about hpth, it’s not something they come across that often if at all, you need to see an Endo who deals with hpth and he/she can refer you to a surgeon.

[birkie in reply to bantam12]

Well, I've seen one endo face to face at Hexham sep, 2021, he as discharged me on one blood test ( PTH.. (3.6)..calcium (2.41) vit D 41..and one incomplete blood test done Dec 6th 2021..PTH..(2)..,no calcium, no vit D.. My last blood done last week are PTH.. 6.6..calcium.. 2.64..adj 2.49..vit D 42..)..the other endo I never saw face to face discharged me on my 24hour urine calcium test being to low to diagnose phpt, so endos are just as bad.. Well that's been my experience so far I'm afraid, I asked to see a surgeon but was refused by my surgery, again saying I can see another endo... God I wish I could go private 😢😢

[Jenny583 in reply to birkie]

Could your loved ones start some kind of 'go fund me' birkie? sorry if that's a stupid question, I no longer know how the world works!

[birkie in reply to Jenny583]

Me either jenny, 😂 but you need to be careful when on any benefits I'm on pip, because if someone does a go fund me page it can be classed as earnings... So I was informed, 🤷‍♀️🤷‍♀️

[Barb1949 in reply to birkie]

Birkie, PIP is not affected by earnings. You can be in any job and qualify for PIP. Other benefits may be affected by income and,/or savings. I have been in receipt of DLA then PIP since mid 1980's and worked for DWP in the benefits section. 🙂

[birkie in reply to Barb1949]

I also claim universal credit, when I sold my house I had to come off it as I got 20 thousand pounds off my house, I had to live off it till it was all gone then go back on universal credit, I was told if I get any money like earnings or if someone does a charity thing it can be classed as earnings, 🤔🤔

[bantam12 in reply to birkie]

My diagnosis was only definitely confirmed with a very high urine calcium despite being over range on every blood test, so if your results are inconsistent I can see the problem. I don’t believe your GP can refer you to a surgeon, mine certainly can’t, it has to be via a Consultant.

It isn’t easy finding an Endo who specialises in hpth, I saw an NHS one who wasn’t much good so I went private but even she needed some convincing and it took several more months before she referred me to the surgeon.

I’m sure I’ve said before to you that many members on our pth forum spent years trying to get a diagnosis so it’s not an uncommon problem.

[birkie in reply to bantam12]

Yes it's getting the NHS to realise it would be better to treat the patients than letting them suffer in pain with awful symptoms, the NHS must be purging money sending us to specialist after specialist I've seen heart specialist, Head specialist, gastro, renal, bone specialist none could help, my heart as calcification in the LAD.. Server calcification in knees, ankles, shoulder, I managed to get a cortisone injection for my shoulder, I've lost 5 teeth and one is falling out now😔 lost count of how many times I've been hospitalised for kidney stones my EGRF is always low the last being 57...range 90.00 to 120.00..i did think after my thyroidectomy I'd go back to what I was before, but I haven't, actually my thyroid bloods I thought were OK at T3.. 6.4...and TSH at 0.05...cant see why she decrease it.. But even with the decrease I still have the awfull symptoms, honestly I'm thinking of moving my bed in to my bathroom 🤦‍♀️if you read the guidelines the 24H urine should only be used as a tool not to Diagnose your bloods are the diagnosis, not even the simbi scan can be used to Diagnose only a tool for the surgeon, so you to had to go private then many members on our site had to go private for their op as the NHS wouldn't touch them even the lovely lady on our site (administrator) had awful trouble with the NHS endos.. She as now had surgery with a parathyroid surgeon at Oxford and she's very well now..🙌🙌🙌

[Jenny583]

I give up! will 🙏 for a miracle instead. On second thoughts....make that 2 miracles. x

[birkie in reply to Jenny583]

I'll do the lottery tomorrow jenny🤣🤣🤣 I'll cross everything 🤞🤞🤞

[tattybogle]

it's not the GP's job to understand all the complexities of hyperparathyroidism. his job is to refer you you to an endo for further investigation if primary hypeparathyroidism is suspected according to the criteria set out in the NICE guidelines. You have previously been referred to endocrinology because primary hyperparathyroidism was suspected. but after further tests were done by endo, you were discharged because in their opinion, and after taking into account your Vit D tests and your 24hr urine calcium tests, you don't have primary hyperparathyroidism.

Only endocrinology can refer you on to a parathyroid surgeon .

A GP cannot refer you directly to a parathyroid surgeon.

You GP has offered to refer you again to endocrinology .. which is all he can do re. your concern that you actually do have primary hyperparathyroidism .

But you won't accept another referral to endocrinology. and so you are angry and spend the appointment trying to convince the GP that endocrinology are wrong about something very complex that it's not even his job to understand anyway ..... and then when you raise your voice he asks you to leave ... which is why he didn't have opportunity to discuss your recent dose change in T3 dose .

So, he offered you what he could ... you refused to accept that , and then got angry and raised your voice , so he asked you to leave ..... meaning there was no opportunity to discuss your thyroid blood results.

You can complain all you like . but the GP did nothing 'wrong' here . you're understandably angry because you don't like the re -referral to endocrinology option ...which is the only option he can offer...... i can see it is very frustrating,... but you're asking him to do something he can't.. and getting angry when he offers you what he can.

It wasn't him who requested you lower to your T3 dose.. it was somebody else .. so surly it would be more useful to discuss the latest TFT's with the person who requested you lower the dose ?

[birkie in reply to tattybogle]

I couldn't see the gp who lowered my dose unfortunately, but seeing how I've been very ill since 2020 with no help at all from professional people I've every right to be angry.. And a gp can refer you to a surgeon plenty on our site have, you can by pass the endo, the admin on our site as just done a table of bloods from me I gave her all my results she says they look like primary hyperparathiyroidism, and I need a second opinion,

[tattybogle in reply to birkie]

..... the GP offered you a second opinion. Perhaps if you want to see a surgeon you might have done better to have said yes to this repeat referral to endocrinology first ?

can you ask to be referred to an endo who is good at parathyroid issues... does the parathyroid group have a 'list' like we do here ?

[birkie in reply to tattybogle]

I will of course go to another endo if that's all I'm offered, we do have a list of endos on our site, the one I'd like to see is in Oxford but he is out of my nhs area and he is inundated with patients at the mo think his not taking anymore on at the moment, but I'm in touch with our lovely admin lady so I will be asking her if she can recommend any endos.. The only thing I know is after having an over active thyroid ( graves thyrotoxic, my thyroid swelled inwards pushing on my throat, my thyroid used to hache something rotten it pulsed in my neck.. I now have the same feeling on my left hand side it pulses with sharp pains its horrible 😔

[shaws]

My goodness me! It's no wonder we get frustrated and annoyed especially when TSH is nearly 24 - even worse is T3 below the bottom of the range and T4 well below.

TSH...(23.47)....range.. (0.03..4.50)

T3..( 1.5)..range.. (3.10..6.80)

T4..( 2.5)..range.. ( 11.00..22.00)

I think the Endo needs to be taught properly about "how best to care for and prescribe for a hypothyroid patient whose TSH has gone sky-high and T3 (the ACTIVE thyroid hormone needed in our millions of T3 receptor cells and brain and heart have the most receptor cells - you're certainly not provided the amount needed for your body to function normally.

It should not be up to a patient, who probably contributed to all of the medical professionals 'training/qualification !!!' to try to restore their health but find that themselves are having to search the internet for advice.

If only Dr Skinner and Dr Peatfield and Dr Lowe were able to teach those who've chosen endocrinology. All of these three doctors- as students - had no internet to search for information. They knew the most basic clinical symptoms of a dysfunctional thyroid gland and thus treated their patients who recovered their health and I assume it would have been NDTs mainly.

Due to the first two doctors doing as they were taught as students, who were then pursued by the 'organisation' in later life when blood tests were introduced; for not following the 'rules' now laid down. The new 'rules' seem not to work effectively.

Dr Peatfield was a brilliant doctor but due to the pressure brought about by the 'authorities' resigned his licence so that he could still 'advise' those who had hypo but symptoms not being relieved. He was a kind and gentle soul. Dr Skinner was loved by his staff and all were shocked and grieved when he died suddently at work. All of them saved lives too:-

dailyrecord.co.uk/news/real...

[birkie in reply to shaws]

The only reason I agreed to the decrease is because the gp keeps saying all my symptoms are due to over medication, when does over medication make you urinate up to 7 times a night makes you drink and can't quench your thirst, server headaches, bone pain bone vibration, I had 2 over range parathyroid hormones and over range calcium, endo said its probably primary hyperparathiyroidism then got one normal blood test bk and dismissed me, I'm still fighting that.. Just had my parathyroid hormones, calcium, vit D done by a very respected lady on parathyroid site I'm on, it clearly shows a bad relationship between pth and calcium, that's why I wanted to see the practice manager to go over all the information 🤷‍♀️