Welcome to the real world

After developing hypothyroidism following thyroiditis I couldn't get back to health on levothyroxine. I had great support from my GP and got referred too NHS endocrinology. I saw an endocrinologist who was expert on thyroid distorders who completely accepted that some patients dont recover i on T4 only do so she began a T3 trial. She left and I a locum who continued with her plan. I didn't get back to full health but felt like there was a plan.

I posted about how lucky I was. I saw the new permanent endo last week. He was very polite very direct and very clear that no one is unwell once TSH is normal and no one benefits from T3. The plan was to stop any further T3, take T4 and test and check again in six months. I totally get that he was following exactly what the evidence tells him is true and realise that from his perspective if my numbers are in range that's job done. I actually liked and respected him. He's being an experienced professional and doing exactly what his training, the evidence and guidelines tell him. But I don't totally agree that I'm a hypochondriac imagining feeling weak, dizzy and foggy headed. I now realise what other people experience. I think I've been spoiled in the past and I'm now having a dose of more usual NHS endocrinology....forget about how you feel your TSH is good and that means it's not your thyroid (you're probably a difficult neurotic).

I struggled too get the right dose of T3 so I'll follow his plan for as long as I can and see if knuckling down to a long period on a fixed dose of T4 is the answer. I suppose I should be open minded.

Michael

[thyroidmom84]

Hmmm he doesn’t sound like a good match for me. I had a GP also tell me no symptoms when euthyroid and I know this is completely untrue. I have also had the dizziness and weakness you’ve experienced.

[greygoose in reply to thyroidmom84]

It depends on your definition of 'euthyroid', doesn't it. There's a lot more to being 'euthyroid' than just having a TSH in-range. What's more, it's debateable if a hypo can ever actually be 'euthyroid'. Because when you are hypo, everything changes. A hypo needs more hormone than a 'euthyroid' person: lower TSH, higher FT4 and FT3. And, that's what they just don't understand.

[thyroidmom84 in reply to greygoose]

Is FT3 the most important indicator?

[greygoose in reply to thyroidmom84]

Yes, it is. That's the active hormone, the one that does all the work and causes symptoms if it's too high or too low. So, that's the one we should really be dosing by.

[thyroidmom84 in reply to greygoose]

Ty! I am about to have labs and want to make sure this is included

[greygoose in reply to thyroidmom84]

The labs usually refuse to do it because they believe it isn't necessary! Like a lab technician knows all about the complexities of thyroid!

[thyroidmom84 in reply to greygoose]

My endo who orders my tests is fortunately responsive to my requests. However, she normally does not include FT3- only FT4 and TSH.

[greygoose in reply to thyroidmom84]

That's what most of them do. They don't understand the results of the FT3, anyway.

[SlowDragon Administrator]

Getting FULL Thyroid and vitamin testing BEFORE T3 is stopped highly recommended

Getting same testing after stopping T3 is likely to show sudden and significant drop in vitamin levels

Likely to become extremely unwell as direct result

Have you done DIO2 gene test to see if you have this common genetic variation.

Also wearing a Fitbit (or equivalent ) can show how your resting heart rate and activity levels are all likely to dive

If you need a private endocrinologist email Dionne at Thyroid Uk for list of recommended thyroid specialists who will prescribe T3

[Hidden in reply to SlowDragon]

Thanks Slow dragon, I'll get those tests, and hope his treatment plan works out.

[FancyPants54 in reply to Hidden]

It won’t. You tried it at the start. Why are you even considering it? You could buy T3 and keep going.

[Hidden in reply to FancyPants54]

Hi fancypants, I was struggling to get a dose of T3 that worked for me and couldn't get much dosing advice after my consultant left. So I'm willing to give one last chance to getting a stable T4 dose. But you are probably right, and I'll end up back where I started and then I'll start self sourcing T3 and T4 and keep the medics at arms length.

[FancyPants54 in reply to Hidden]

Well you should carry on getting T4 from the NHS. Just buy the T3. I'm sorry you didn't find your correct dosing. T3 is hard to work with. But for some it's the only option if they want to feel well.

[birkie]

Hi mike77

I'm now hypo after being diagnosed with hyperthyroidism /graves I had a TSH suppressed and my T3 was 38.1 at its highest.. Unfortunately I had to have my thiyroid removed due to it being toxic.. My tsh is now 3.5 making me hypo my T3 is at the lower end I'm not recovering at all.. I was ill for 3 years I knew it was my thiyroid but gp insisted it was the menupause... My last year was hell I was showing all the symptoms of hyperthyroidism but my gp egnored my symptoms I was eventually diagnosed by another gp at my surgery she noticed my symptoms right away.. Bloods confirmed it... Why the hell don't gps/endos go by symptoms as I said to my endo after a bit of a tussle with him ( I said suerly we must all be different my tsh cannot be the same as yours my t3/T4 would not be the Same as yours so to say your TSH is in normal range means nothing.. umbrellaring these tests is so wrong for goodness sake take a look at your pacients listen to their symptoms belive me if the levo was working for me and I felt well I wouldn't be bothering my gp/endo.. I nearly died as I had thiyroid storm the symptoms were their and my gp couldn't even diagnose me... I was eventually rushed to hospital I will now not let any gp away with not looking at my symptoms even if my bloods say otherwise I'm due to see one soon again I will be pushing the fact my tsh has gone into hypo now do your job and rectify this.. I'm also due to see an endo I'll ask the same question to him to... Unfortunately you have to be tough with these people...

Good luck.. ❤️

[Hidden in reply to birkie]

Thanks for the reply. Its terrible that so many people have to battle to get symptoms considered as well as numbers. I admire your strength.

[MissGrace]

‘I saw the new permanent endo last week. He was very polite very direct and very clear that no one is unwell once TSH is normal and no one benefits from T3. The plan was to stop any further T3, take T4 and test and check again in six months. I totally get that he was following exactly what the evidence tells him is true and realise that from his perspective if my numbers are in range that's job done. I actually liked and respected him. He's being an experienced professional and doing exactly what his training, the evidence and guidelines tell him. ‘

You are a better person than me! I would have been polite and direct back telling him he was taking away an option for my recovery, quoting some of the evidence and explaining that I was an individual not a TSH reading in a fabricated range. I also would have questioned his undermining of the previous endo - that gets to the heart of the treatment debate here - and asked for a referral to an endo who shared the previous endo’s views.

Good luck on T4. I really hope it works. Life is so much simpler if it does and it does work for many. And I hope the endo you saw hasn’t put on your records that you had a trial of T3 and it didn’t work - just in case you meet someone more open minded in the future. 🤸🏿‍♀️🥛

[Hidden in reply to MissGrace]

Thanks Missgrace, it was more like I've just given up on the medics. I'll give what he says a go but I'll self source T4 and T3 if there's no improvement and stop bothering to involved doctors as that's what they'd clearly prefer. When I talked about some of the symptoms I get when under medicated I mentioned low libido. He told me he'd never heard of that in connection with hypothyroidism, which just made me know he was a diabetes specialist with little thyroid expertise.

[MissGrace in reply to Hidden]

Definitely. If you’ve got no energy you’re hardly going to be getting amorous twice a day! lol. 🤸🏿‍♀️🥛

[Hurtlocker]

No you are not being difficult..I am in your situation-symtoms.everything carbon copy..my BLOODS SHOW EVERYTHING NORMALhave done for 3 years and so long as bloods normal !!!job done -even though I feel like I am dying every day..Endo doesnt believe my syptoms and his nurse says she cant treat what she cant see,!!! My doctor is very supportive but her hands are tied .we both know problem is drug related but Endo must say what is tried or not as the case might be...I have an appointment to see Endo/nurse in Jan!!!last seen in Aug and I am going in there demanding some action..think reason they

ration T3 is cost!!!well if Sarah Vine (Michael Gove's wife can be given Nature Thytoid.which is combo T3 and T4) why cant it be given to me ...I am important too as I am not exactly asking for a "boob Job" just to be healthy thanks... struggling on Levo..aches pains..dizzy.faint afer I have taken 100mic per day sypyoms wear off towards 9pm and in the night and early am I am normal i.e

no syptoms to speak of so am quoting NICE guidelines this time .i.e. see article in latest Thyroid Uk Mag.sorry for long missive..let you know what happens.. busy boosting vitamins Too

Vit D 3.Iron and B12.!!!

[Hidden in reply to Hurtlocker]

I sometimes feel like a long missive too! Never knew Sarah Vine is on Nature Thyroid. Is that on the NHS? My new consultant said he didn't know what was in NDT and that it was dangerous.

From what I've just experience I get the impression that for some consultants we simply can't be telling the truth about symptoms. I think they'd do better saying at the very start that this is a controversial area in there profession and they either do or don't believe it's still possible to be ill and would we prefer to see someone who has experience and believes us. And even than we might not get fully better.

[Thor63 in reply to Hurtlocker]

Hi agree with Michael Grove statement he made cut backs on all school sport partnership positions, to help children receive more support and look at what cutting back does to people, poor health status, more demand on GPS NHS and direct cuts for all of us who really need help, understanding and answers with thyroid disease, private gp helping me, 6 years of feeling so poorly. All the best 👍

[birkie in reply to Hurtlocker]

Hi hurtlocker

Although I'm not condemning all gps/endos my experience was hell I live in a small town in Cumbria,I have posted on here several times about my experience in dealing with the medical profession. What really grinds my gears is the fact some gps cannot read pacients symptoms I was showing all the signs of hyperthiyroidism ALL OF THEM....but yet my GP could not see or diagnose them, blood work was always in normal range whatever the hell that means!!yet after years of sheer hell with my current GP I saw another...NOW before any one says you should have gone to another one in the surgery you must understand my surgery only has two doctors and its hell to get appointments, but what's even more annoying is this new GP who had only been in the practice for a week didn't even need blood work to see I was hyper she examined me and in a minute had me diagnosed blood results confirmed this eventho I'd just had bloods done from my original GP 3 weeks prior which was "yes you guessed it... in normal range!! He couldn't even diagnose thiyroid Storm thank god for the locum GP who rushed me to hospital what chance do we have as pacients if some gps or endos don't have the commonsence to look at the symptoms for goodness sake....are we to believe if a pacient turned up at his surgery sat down with the GP clearly having sores,ozzing puss,his skin infected and says I've seen a specialist who says its leprosy...the GP looks at his blood work and say"well you bloods are in normal range" now tatty bye..it's mad how much they get away with after all we are only trying to get ourselves well again and after all isn't that what our gps want....👍🏻

[Hidden in reply to birkie]

That's an awful story. I agree that few medics seem familiar with thyroid problems. I think they are taught that when we say we're ill it's psychological. I first presented with thyroiditis causing severe thyrotoxicosis this was only recognised after six months and my first referral was to psychiatry.

[tzracer]

Wow, another arrogant **** to add to the list. Totally dismissive of his predecessors work, on his opinion only by the sounds of it. You may well feel OK on T4 only, if you get a high enough dose, but you likely won't because it will be governed by your TSH and not your symptoms.

Your previous endo will not have been trying T3 for no reason.

I hope it works out for you and your get well.

[Hidden in reply to tzracer]

Thanks tracer. So tired of being ill and having to persuade doctors in I'm not lying makes it harder. I've not been able to work full time or safely drive for three years and am learning medicine is about fixing numbers not symptoms.

[HashiFedUp]

Good luck Michael. I have been through this for about 4 years now. And Levo T4 on its own did not help. I had t3 for a while and had temporary cessation from my symptoms but they returned, and I went back to just T4. After yet months of faffing with doses, I saw a new endo (mine had done on maternity leave). He knew nothing about Hashimoto’s and his advice was from the 1980s as far as I could see. So I went private - recommendation from here private message only. My new man is amazing. I’m on NDT - nhs refuse to prescribe - and I’m on my way back to health with a few hiccups along with way! Good luck.

[Hidden in reply to HashiFedUp]

Thanks for the reply Hashifedup,. Great to hear a story of recovery. I'd love a private message with your endo recommendation. Like you say I'm not looking forward to faffing around with doses of T4.

[Cheekycharlie1981 in reply to HashiFedUp]

Can you message me your new endo please.

[JAmanda in reply to HashiFedUp]

Thanks for your story and to the original poster. I’ve been trialling t3 but haven’t felt better and it’s been so hard to take, ear pressure, hip pains and weight gain, so am now having a self determined period in t4 only (higher amount than before). I am encouraged that you feel better on NDT as that will be my next trial (with the Endo if they agree or alone if not). Kingston nhs not anti t3 or NDT I think. Mike, I’ll be interested to see how (and I) get on.

[Hidden in reply to JAmanda]

Hi JAmanda, good luck, I'd love to hear how you get on. So far I'm having less peaks and troughs than on T3 but feel tired, hips ache and feel spaced out. I've been much worse so I'll see if things improve as I adjust to being off T3. Endo reckons that four month minimum on same dose is the way to go. 🤞🤞🤞🤞🤞

[JAmanda in reply to Hidden]

Actually I just heard my magnesium is very low so that could account for a lot of things especially muscles and eye flicker. Oh it’s a journey! I’ve put a monthly pill dispenser and am going to religiously take the vits suggested here and see if that helps.

[Hidden]

Blimey that sounds awful. Hope you are over the worse of the thyroid storm.

[Carysta]

I am using a homeopathic approach to support my thyroid and for the first time in years I have sustained energy, no dizzy spells and most of all no falls. The NHS work wonders but sometimes what is going on for us falls outside of their remit. Am also taking vitD3, vit B6 and following a gluten free and dairy free diet, so the results I feel are likely to be a combination of all factors.

I wish you luck