NHS Endocrinologist just told me I was hypERthyroid not HypO, and to stop T3 as it was damaging me. Am I wrong?!

[ChronicTonic]

I’m so upset!

I just saw an endocrinologist who told me that going by my TSH levels I was hypERthyroid instead of hypOthyroid.

I asked about all my hypo symptoms which she said were probably due to something else(!). Like, I’ve had and still have - to a lesser degree - every hypo symptom ever. Even now I’ve been on T3 for a few years I still haven’t escaped hyperthyroidism completely.

The endocrinologist said I needed to drop the T3 and just take more T4. And then to come back for her if I still required her opinion. In the meantime, by taking T3 I was irreversibly damaging my heart and giving myself osteoporosis.

I pointed out that I had lost two years of my life going to my GP and not having any help with my thyroid, and that three years ago, within 2 days of taking T3 I felt a different person: All my hypothyroid symptoms reduced, from chronic pain to my nails growing, being freezing all the time, to my thinned eyebrows, etc. Again she said these symptoms were probably due to something else?! Like, they’re textbook hypothyroid symptoms which almost disappeared when I took T3.

Apparently my successful experience taking T3 was completely subjective - she insinuated it was the placebo effect, or I’d made it up - to which I responded, “Ask my husband about his experience of me taking T3: he’ll tell you how I was transformed.”

She said my brother having DIO2 gene was irrelevant, she still wouldn’t prescribe me T3 even if it were shown I had the same gene, as to her mind it was purely academic and there was no scientific evidence behind the theory.

She was very firm in saying if she did something she didn’t believe in - ie; prescribing me T3 and thereby putting my health in danger - she wouldn’t be doing her job properly.

That’s fair enough if she doesn’t believe in T3, but to insinuate my symptom relief was psychosomatic, and say without saying it that my hypo symptoms were due to me being a chronic malingerer, and that I couldn’t know what a low thyroid felt like - which I bloody well can; readers, hypothyroidism physically HURTS - I’m just so effing insulted!

I went to my GP for 2 years when I could barely scrape myself out of bed and he wouldn’t prescribe me more T4 - which had never helped me completely anyway - even though I could feel, and visually see from the state of my nails and hair - that I wasn’t getting enough help with my thyroid.

Then as soon as I took T3 - because I had to take my health into my own hands - I was infinitely better.

I’m so effing cross to be so unsupported - as always - with my thyroid. And the Endo had the nerve to say the Thyroid Association etc agreed with her! Argh!!

I feel so let down by the medical establishment. Yet again.

Am I wrong??!

/rant over

[Ribenablackcurrant]

Hi, I have had a similar experience with doctors. Some are scared of any negative ramifications and don't give us treatment because of that. I have never been given any T3 despite the fact that my T3 keeps lowering because of my T4 meds. I nearly died from this and it's like they don't believe that I'm really ill. It's so frustrating. I feel your pain!

I know from other thyroid forums that doctors can and do prescribe T3 without issue. Sounds like you need to see another, better endocrinologist.

Good luck!!!

[ChronicTonic in reply to Ribenablackcurrant]

Thanks Ribenablackcurrant and Hidden for your support. I was - and am - so upset!

Emotionally, I feel like the endocrinologist set me back 5 years - to when I first went to the GP saying my thyroid meds weren’t working. As I say above, I then lost 2 years of my life before I came here and, with the help of the admins, took responsibility for my own health.

It’s just like taking to a brick wall all over again, only this time - unlike last time - I‘ve found the answer in T3. And yet, the information I‘ve found to help me function semi-normally is still not getting through to the doctor! Argh!

Lora, I’m so sorry about your friend. How traumatic for her.

And Ribena, yup, I know how that feels.

Sending hugs to you both x

[fuchsia-pink]

You have a suppressed TSH. This is because you are taking T3 meds. This is bit like saying that your garden is wet because it has been raining - ie it's what happens ...

There is a world of difference between having a suppressed TSH in consequence of being treated because you are hypo - and being hyper.

Why is it "normal" for you to have such a low free T4? And I can't see a free T3 result (going cross-eyed looking so it may be there and I've missed it ...) More levo may well be needed if you don't feel tip-top.

And while I understand it's true that people NOT ON THYROID MEDS can risk their heart and bones if they have very low TSH and too high T3, I believe that there isn't any reliable research to prove a correlation for those who are on medication and whose free T3 is still in range ...

And as for saying that T3 meds make us better only because of a placebo effect - given that there are SO MANY of us having exactly the same "placebo effect" - doesn't that actually prove it's nonetheless worthwhile

I feel very angry for you!

As Hidden says. I'd be changing endo ...

[ChronicTonic in reply to fuchsia-pink]

Thank you so much for your words fuchsia-pink .

I love your analogy about rain and a wet garden. I wish I’d had your certainty during my appointment!

I even had a moment in the appointment when I doubted myself as the endocrinologist was so vehemently opposed to my situation. I kept saying, “but I feel so much better on T3, so how can you explain the that and the fact my hypOthyroid symptoms have reduced?” And, “I know I’m not hypERthyroid as I know what that feels like and it’s really unpleasant.”

I just can’t believe she put every one of my classic hypothyroid symptoms down to ‘something else’ when I’ve been on Levothyroxine/ T4 for 25 years - with increased doses during my pregnancies.

It’s just the weirdest thing, the endocrinologist negating my entire experience of hypothyroidism because it didn’t sit with her world view. Especially as she said I needed to go up a dose or few on Levothyroxine/ T4!

And yet, according to the endocrinologist my classic hypothyroid symptoms were caused by something else, never mind that they improved with every increase of Levothyroxine/ T4 and were resolved by T3?

It makes no sense and now my head hurts.

There’s no FT3 test as the tests were by another consultant in another medical department and hospital. They were just my most recent bloods she has to refer to.

[fuchsia-pink in reply to ChronicTonic]

Stay strong! And well - despite your endo, not because of her

[Angel_of_the_North in reply to ChronicTonic]

And if T3 is just a placebo (meaning it has no actual physical effect), why is endo worried about it? can't have it both ways - it is effective or it isn't.

[ChronicTonic in reply to Angel_of_the_North]

Yes - this!

I was trying to explain to my husband how she kept contradicting herself.

And he had the gall to ask if I’d misunderstood. Argh!

I’m so relieved you lovely lot understand.

[Hillwoman]

You know, I think it's high time each and every one of us who encounters this kind of unsupported opinion from GPs and endos made a formal complaint about assertions of placebo/hypochondria/malingering/delusion/dishonesty/stupidity, complete with a list of relevant, up-to-date references. Only if we all object to this kind of gaslighting and professional negligence will our treatment change for the better.

[tattybogle in reply to Hillwoman]

Exactly . I ask myself "would my Dad have put up with being spoken to like this by someone who clearly knew less than him ? "......... no he bloody wouldn't.

[ChronicTonic in reply to tattybogle]

Hey ‘Scarecrow’ (I love the tattybogle village fairs and competitions up in Scotland)!

You’re quite right about your dad standing his ground, and I even dressed more smartly than usual to make a more serious impression. Don’t think the tears pricking my eyes in anger during the appointment helped much, though!

[tattybogle in reply to ChronicTonic]

Hi Abster. I think the damage done to our mental health by being continually made to doubt ourselves, can actually cause more damage to our lives than thyroid disease itself causes. It is a form of abuse,similar in effect to that caused by 'grooming' .We have been made powerless by 'divide and conquer' for too long, told Levo works for everyone else, T4 is turned into enough T3 by the body in everyone, it's just YOU making a fuss.

But ... We stand together....It's not just you ,or me , anymore ...... and i believe a change is gonna come.

I like to imagine increasing numbers of GP's frightened by the prospect of a consultation with an informed thyroid patient, when they themselves can't even remember whether Tsh goes up or down without looking it up, let alone know what deiodination means.

And i now fantasise that the new 'remote working' arrangements could lead to Zoom appointments with an Endo, where we could have forum members 'with us' in the room. Wouldn't that be fun The 'patient' could concentrate on controlling the desire to 'bang head against wall' and keep their tears in check with deep breathing , while the rest of us did the 'fact checking', and come up with a perfectly timed Knockout question.

I'n not advocating abusing Doctors, i don't think that helps anyone, but i do think it's time some of the personal, (and financial) insecurity caused by the medical establishment's attitude to us 'dissatisfied' thyroid patient's was given back to them in equal measure.

I CAN understand why they are scared to look any further than 'blame the patient' ,because of fear of the GMC, and peer pressure to conform to 'TSH is all you need',

but it's time they were equally scared of US.

And some of them do know the damage they are causing , i've seen it in their eyes......... along with the fear, when it looks like you might be about to mention T3.

Ps before there were scarecrows, there were hairy potato boggarts....... we are just disguised as scarecrows, so as not to frighten the people.

Tat

x

Edit;

boggarts and more.....

britishfairies.wordpress.co...

[Hillwoman in reply to tattybogle]

I think your idea of video appointments with TUK forum members on hand to deliver knockout blows is inspired! Absolutely brilliant!

[tattybogle in reply to Hillwoman]

Even better (going past fantasy to hallucination now)....... imagine if we could then split 30% of the Endo's wages between us all,(since we know more about thyroid biochemistry, and must surely be able to legitimately write 'thyroid consultant' on our tax return)

We'd all be able to afford a blood test, and some vitamins, and some hormones !, and could thus save the NHS millions in wasted appointments with other people we don't want to see anyway.

[Hillwoman in reply to tattybogle]

The goddess of inspiration is certainly with you today! 😂🤣

[ChronicTonic in reply to Hillwoman]

So true! It’s awful having ‘invisible’ health conditions - and I have a handful of them - as it’s so disempowering. For all the reasons you mention!

[SeasideSusie Remembering]

Abi-Abster

If you are taking T3, why hasn't your FT3 been tested?

Is your T3 prescribed?

[ChronicTonic in reply to SeasideSusie]

For the past 3 years I’ve been self-prescribing T3 with the help of you lovely Admins on this forum.

The bloods were for a different consultant in a different field (auto-immune issues/ MS-type conditions), hence no FT3. But the endocrinologist referred to the tests as they were my most recent.

All I want is for my thyroid to be treated properly. And monitored properly too, as you’ve pointed out!

[Alanna01]

I feel your frustration Abi. One doctor admitted to me that even though I spent half of every week in bed it was, to quote: "More than her job was worth" to raise my thyroxine by 25mg, even though I was only on 100mg. I left thinking but MY inability to make a meagar livelihood doesn't matter then, only yours??!

It might help to attend future appointments with your husband in tow. I am afraid to say that based on personal experience going to appointments with my children, that doctors seem to suddenly take any concerns you have more seriously if a man is present.

Especially if he can echo your concerns. If he can say 'Well Abi was transformed after taking T3, I felt like I got my wife back' it will be seen as objective and rational and more weighty than you saying "After taking T3 I FELT like I got my life back etc"

The reason is that women are often seen as depressed, emotional, more prone to using hyperbole and using overly descriptive language etc.

It's frustrating. It really is. I too agree that maybe its time we started reporting this sort of incompetency enmasse.

[madge1979 in reply to Alanna01]

I Could not agree more Alanna.

. my husband accompanies me to my Endocrinologist visits each time and I KNOW That it makes a huge difference to the way in which I am perceived and treated !!

... i.e.... they are more careful and respectful to you in front of a witness..

My husband asks lots of questions too which I'm so grateful for.

I have Graves Disease for which I struggled

To get a diagnosis for several years .. all the time becoming more and more ill ..

I just cannot believe the way that Many doctors

" bob and weave " to avoid taking responsibility for treating their Thyroid patients , simply because they know Nothing about the condition .

How they can go home and sleep in their beds, never giving us any further thought whilst they ignore our desperate pleas is diabolical .... to say the least !

Luv Mx🌹

[Alanna01 in reply to madge1979]

It is really disgusting. Why don't they just admit they can't help and refer you to someone who can? Your husband sounds great though. Very proactive with the questions. Great! Can I borrow him for my appointments? I definitely think you're missing a potential money spinner here.....

[pennyannie]

Hello Abi-Abster

No, you are not wrong - and I was in the same boat within the NHS system.

[Angel_of_the_North]

Well, an endo should know that TSH is not a thyroid hormone and you can't possibly be hyper with FT4 under range - plus when on T3 TSH is usually under range or suppressed and shouldn't be considered. They didn't test FT3 which is essential when taking T3, so you might be overmedicated, but no one can tell. Endo is ignorant and probably a diabetes specialist - so ditch useless endo. How do you feel? And is NHS supplying T3? If not continue as you are.

[heathermr]

I nearly died because of the same pig headed attitude about making judgements on TSH alone. Its utter madness, what is important is how you feel not the numbers on a sheet of paper. My TSH is zero, has been for years, I suspect pituitary problems after a head injury. When my TSH started to drop I saw nearly a dozen Endos and each one had not a clue how to help me. First I was on levo, then off it, then on again as I got sicker and sicker. In the end I took it out of their hands and put myself on T3 and regained my health. Still Endo shake their heads and want to change my medication. I have been on T3 nearly 10 years and I'm still here and doing well so theres no way am I stopping T3. By the way my T4 is zero and has been that way for a long time so you dont necessarily need any T4 in your body as long as you have enough T3.

Heather

[Alanna01 in reply to heathermr]

Very interesting. Glad you are feeling well. Just shows numbers ona sheet don't always give the accurate picture of what is happening.

[magsyh]

Yes the docs and endo's are really a waste of time. I have given up as sick fed up of arguing with them. You have to look after your own health. No one has mentioned that your b12 and folate is much too low? Your sodium too low? Your tryglycerates too high, your CRP raised? You need to supplement b12 and folate. Better to find methylfolate and b12. Eat more salt your cortisol could be low another reason for your CRP being a bit high. The tryglycerates problem is due to too much sugar and carbs. You need to insist on a T3 test or have it done by medichecks. They have a special offer on today.

[ChronicTonic in reply to magsyh]

Thank you for your input - it’s invaluable.

Considering I have most tests covered above, is this test sufficient for FT3? £29 -

medichecks.com/products/thy...

With the TUK30 discount I can get this test for £48.30 it includes Cortisol and Magnesium:

bluehorizonbloodtests.co.uk...

Or should I choose this? £61:

medichecks.com/products/thy...

Many thanks,

Abi.

[ChronicTonic in reply to magsyh]

Funnily enough, I’ve recently started the AIP diet to improve inflammation and reduce sugar and carbs. Hopefully it’ll help.

I’ll step up my B12 and methylfolate supplementation. Thank you!

[magsyh in reply to ChronicTonic]

Make sure b12 is sublingual as it absorbs better especially if you have low stomach acid. I use narrows sublingual 1000.

[ChronicTonic in reply to magsyh]

I have sublingual. It’s excellent. I’ve just been slack at taking it consistently.

So thanks for the nudge!

[magsyh in reply to ChronicTonic]

That should be jarrows.

[Batty1]

I only have one piece of advice RUN from this Endo!

[AlisonL]

Hi there. Just wanted to sympathise after being told the same thing myself by 2 different endos. I am on a combo of T3 and T4 with a suppressed TSH, and was also told I was risking atrial fibrillation and osteoporosis, amongst other things. Nonsense, because my free T3 level has always been normal. It's so upsetting to be talked to this way by doctors, and I've left many appointments in tears in the past, so know how you feel. Luckily I eventually found a consultant who agrees that I need T3 and, although he isn't all that happy about my TSH, he does agree that the free T3 and T4 numbers are what are important. I hope you can find a doctor who isn't as awful as this one x

[ChronicTonic in reply to AlisonL]

Thank you so much for your understanding - and for your sympathy! You sound like you’ve had the same experience as me: I had the heart and bones lecture too. Again.

I’m so pleased you’ve found a consultant who actually listens and understands. What a relief!

[shaws]

We definitely do not want a person with that attitude to treat us at all.

No matter what symptoms we had/have she'd ignore completley and just look at a TSH result. Considering that TSH is NOT a thyroid hormone when we take T3 or other than levothyroxine, our blood results will differ.

The fact that they are so ignorant as the above doctor seems to be, I would definitely not return to someone who has that very important ingredient missing "compassion".

She has obviously never come across a patient who was 'Thyroid Hormone Resistant' which means the person cannot recover as they cannot convert levo (T4 - inactive hormone) into T3 and is probably unaware that T4 HAS to convert to T3 - the Active thyroid hormone required in our millions of T3 receptor cells. T4 has no receptor cells as it is supposed to convert to T3.

hormonerestoration.com/

They don't want to prescribe T3 because of the astronomically increase in cost - its not our fault that other countries' T3 is much cheaper than in the UK. We have suffered due to the greediness of many of the suppliers. We have also suffered due to many inept doctors/endos not understanding that T3 is the Active hormone need to drive our whole metabolism and T4 is inactive and doesn't work for everyone. Those who do well upon T4 wont be on the internet looking for help/advice.