Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[CrispyChick]

Hi

I know I had a discussion with a few folks on another thread. But can't recall which one.

So here are my latest results and ranges, if someone in the thyroid 'know' could comment.

To recap I feel hideously poisoned and ill every day. Also contact flu like symptoms and cold all this time. Unless having a hot flush.

TSH - 0.81.  Range 0.23 - 5.6 mu/L
Free T4 - 16. Range 9-28 pmol/L
Free T3 - 3.4.  Range 3.1-6.8 pmol/L

I should add, this is similar to all my previous tests and when I've had antibodies tested, there's never been any issue.

Many thanks. X

[joziel]

Have you ever had rt3 tested?

Your TSH and T4 are okay but your T3 is quite low there.... and T3 is the most active thyroid hormone.

Certainly you could try adding some T3 for a boost. But you would need to see a private thyroid doctor, you won't get that on the NHS.

[CrispyChick]

Thanks joziel.

Can u send me the name of your thyroid doc again???

This is where I'm confused. What would warrant trying some low T3 treatment??? It's quite hard core, is it not? Is it likely your chap would suggest trying it because I feel so ill and it 'could' be that?

No. Not had reverse T3. Those three results were done by GP. So I think I'm lucky I got free T3!

[joziel]

I see Dr Momi at Functional Thyroid Care. You can google his website. He is based in Ireland but you see him on Zoom and he dispenses from UK pharmacies online.

Yes, he would very likely suggest a low dose of T3 as a trial to see if it helps. Not sure it's 'hard core' exactly, it's just medication like HRT.

The only place you can get rt3 tested really is the Blue Horizons Platinum thyroid test, which you'll also find with a google. If you use code TUK10 you'll get 10% off. It's still about £150. I've had to do so many of these...

[SundayGirl]

Quick question Crispy -- is that range for fT4 correct?

If it is then your fT4 isn't brilliant and could be better.
That fT3 on the other hand is not good (Yep, me and joziel agreeing on something at last!  )

How are your vitamin levels? Vitamin D, folate , B12 and ferritin.

Feeling cold all the time is a classic hypothyroid symptom. I noticed on another thread you mentioned about ear issues. Funnily enough, I had terrible ear problems, feeling deaf and like my ears were bunged up for years before my hypo diagnosis.

Have you ever spoken to your GP about central, or secondary, hypothyroidism? It's not as commonly diagnosed as primary hypothyroidism but is by no means rare. I'd speak to my GP about this for advice before jumping in to a private consultation. Then again, it could be primary hypothyroidism, or the start of it. A lack of antibodies doesn't necessarily rule this out.

I'm not saying never go private, just make sure you've ticked all the NHS boxes before this.

[joziel]

I definitely think, given all your symptoms and what you've already tried, that pushing the thyroid investigations is the best way to go. If nothing else, you need to rule it out and move on.

My feet are blocks of ice when my levels are low. I am starting to get up to where I need now, increasing my T4, and feeling so much better.

I realised that there has never been a time when I've optimised both thyroid and HRT. Last August I increased my HRT to get up to 600-800pmol range finally, but I simultaneously was starting to wean off thyroid meds - thinking that were not the cause of my symptoms because nothing got any better on them.

I now think the symptoms of thyroid and sex hormones being low are so similar that I'd only just got my HRT up to the range which works for me, when my thyroid levels were too low - and then I never recovered my previous function after weaning off meds. And since then I've been gradually increasing and trying to optimise thyroid again. Only now I'm on 100mcg T4 and 30mcg T3 do I feel better, and I'm supposed to increase T4 again. (Supposed to be 125mcg T4 and 30mcg T3. If I can, I will come down some on the T3.)

The other thing to say is that, if you need an NHS referral to endocrinology, get it sooner rather than later because it's a 5 month wait here. (Been referred to find out why I couldn't recover previous function and rule out anything else going on.)

[CrispyChick]

Thanks all.

Yes my range is correct Sunday girl. 

So, I'm debating this. I've had a very long detailed chat with Chat gpt today. He's great. My symptoms are highly indicative of a nervous agd immune response triggered by hormonal flux. And I keep changing and trying hornones.

It's basically ME/CFC triggered by hormonal flux. And, unfortunately (as there's no cure) I think he's right.

I will ask my GP about my thyroid results and mention secondary hypothyroidism. But equally I plan to monitor my cold and flu. I don't think I always feel cold with flu - yet my levels have always looked like that. So I think it is the ME. I'm showing raised and lowered white blood cells at present - which reinforces the immune response. When I'm cold it's a system shivery cold, not extremities, if that makes sense. I feel like I have the flu. I don't just feel cold.

So, one thing at a time I guess.

I've already been to endocrinologist joziel. I actually didn't have a long wait. But once there, he just turned me straight back round. So that's pointless.

My vitamin levels are currently amazing. D is high. B12 is high. Folate high. Ferritin doing ok now as I supplement.

So, on what way is my T4 not good???

And how were you diagnosed as hyp Sunday girl??? With the standard things showing in your results???

Like I say, I won't put this to bed. But I'm not now convinced it's my issue.

X

[joziel]

Wellll, I wasn't convinced either. But having tried meds now, I am.

The thing is, ME/CFS symptoms and low T3 are IDENTICAL. There are so many people with hypothyroidism who get diagnosed with ME/CFS, it's insane. Given there is a clear 'cure' and treatment for one and not the other, it seems a no-brainer to try the thyroid approach to me: https://meassociation.org.uk/wp-content/uploads/THYROID-DISEASE-AND-MECFS-FEBRUARY-2020.pdf 

"Some of the symptoms of low thyroid
function/hypothyroidism overlap
with ME/CFS – so this is a condition
that MUST be excluded before a
diagnosis of ME/CFS is confirmed."

[CrispyChick]

So, is it as sine as trying T3 - in my case?

I do t need the T4. I might not covert well - part of the problem?? 

Well, I'm not saying in putting if to bed. I'm currently trying double cerazette, in an attempt to stabalise my chaotic hormones and therefore bring some stability to my nervous and immune systems.

It's not going to be long before I know if it helps...or not.

So I will defo continue to consider thyroid. But I can't pretend to understand it. Everything I looked at on thyroid.uk looked like I was ok.

And...I'm continually frustrated by the lack of help. So my results are in range, but I could look elsewhere and he told I could try treatment??? I just can't wrap my head around all this. My GP is great. And she did test my T3. And I've already been to endocrinologist. So to pursue it seems odd. 

I'd love to hear from others who had similar levels then and pursued it with success. X

[joziel]

You haven't tested your rt3 at all. If your T3 is this low and only just in range and your rT3 is high, then you will for sure be feeling bad. And even if you don't accept that rt3 means anything, it can be agreed that a T3 as low as yours can cause symptoms.

As for going to an endocrinologist and GP - welcome to thyroid care in the UK. You won't get adequate care from the NHS or diagnosis. They do not understand thyroid conditions properly and probably couldn't cope with demand, if they did. Thyroid UK is also pretty conservative.

Yes, it is as simple as probably trying a low dose of T3 to boost your T3 and reduce any rT3. And seeing if you feel better. However, this could tank your T4 as even a low dose of T3 only can do that. (15mcg of T3 only did for me, in a similar situation to you - so I had to add in T4 as well.) Once you are taking T3, adding in T4 to a limited (low in range) amount should not cause excessive rt3 because the T3 you're taking counters the rT3.

Really, you can only try things and see if you feel better.

[SundayGirl]

The reason I asked about the range for T4 is it's a bit weird and not one I've seen before.

Having said that, with such a wide range your T4 is roughly a third of the way through it which is a bit on the low side.

Your T3 is low and, on the face of things, not enough T4 is being converted to T3. BUT -- This could be caused by other issues though, not just that your body has a problem converting. Conversion is downgraded to slow you down so your body can concentrate on fixing whatever is wrong.

I personally wouldn't pursue getting T3 prescribed privately in your situation. There may be nothing wrong thyroid wise and your levels are due to other things happening.

Please don't let yourself be labelled with ME or CFS until every single other thing has been ruled out.


My own hypo diagnosis was pretty straightforward in the end - when they got round to testing it. With a TSH well into 3 figures I had a frantic phone call from my GP within hours of my bloods being done telling me I need to collect a prescription first thing and take immediately  This was after I'd been back and forth for years with various things wrong. The dots were never connected previously though 

[SundayGirl]

As for going to an endocrinologist and GP - welcome to thyroid care in the UK. You won't get adequate care from the NHS or diagnosis. They do not understand thyroid conditions properly and probably couldn't cope with demand, if they did.

Huge round of applause for that comment  I could not agree more.


Medics don't get the training they should in thyroid matters. Even the so-called experts in endocrinology are diabetes focused.

Mind you, the majority of thyroid patients are female so ..........

[CrispyChick]

Ok. Well thank you for the input ladies.

Two differing opinions. 

I'll bring it up with my GP. I do t think I'm convinced. But will get her take on it before I pursue anything further or otherwise.

I absolutely take the point about ME/CFC. That said I've had every test under the sun over the last 7 years and nothing has shown up. Ever. So I think everything is pretty exhausted.

On chatting with chat gpt (it's amazing) it reads like hormonal fluctuations can trigger a severe nervous system / immune system response, in an ME format. That's what I think is happening to me. And it explains why chem meno triggered the worst crash of my life.

Right now I'm re attempting hormonal stability. Time will tell...

[joziel]

Your GP will reassure you that it is not your thyroid.

This means nothing.

It's your choice whether to pursue it privately.

[CrispyChick]

Ok.  I think i get it.

It's on my list. Right now I'm pursuing hormonal stability and nervous system calming.

If I get nowhere whatsoever, then I'll pursue thyroid.    and I can do that with your chappie in Ireland?