Unfortunate 3 month review

[lau99]

Good evening and long time no see, everyone I hope you have all been well this summer just gone.

I've been away from here for a while, just to try and really focus on my recovery. Around the time I was last here, I had been newly diagnosed with SIBO privately (that I had previously suspected I had for roughly a year and a half, but the NHS shooed me away on countless occasions). Treatment for that involved 2 weeks of broad spectrum antibiotics followed by a month of the keto diet and strictly no sugar, carbs, or most sweeteners. The antibiotics had predictably killed off a lot of good bacteria also, so I ended up with stubborn oral thrush and skin candidiasis on my hands, which I needed to take quite a lot of fluconazole in intervals over a couple of weeks to get rid of (thankfully successfully). That brings us to now, where I am taking a daily probiotic and some digestive enzymes, all alongside my T4 and T3. My bathroom habits (sorry) have improved greatly, though my mysterious bloating sadly remains...

Thyroid-wise, I feel a lot better with the addition of the T3. Less achey overall, don't seem to gain weight quite as easily (though the lingering extra kilos are thought to be connected to the SIBO), can sleep throughout the night without needing a nap in the day, and all without any hyper symptoms. Sadly, today was the dreaded day of my 3 month review of my NHS T3 trial.

It went about as I expected, except that my actual endo didn't show up and I saw a registrar who replaced her instead. Lots of gaslighting and...dodgy sounding "information" (the most shocking of which being that apparently the thyroid doesn't even produce T3, the cells in our body do that??), along with the predictable condescending attitude, and finally, trying to take the so-called "T3 supplement" away from me. He said that I probably only feel better because of the placebo effect, that it's probably in my head, that the way I felt on T4 only is how "normal" is supposed to feel...the unfortunate and hurtful usual. I told him all the above about my unresolved gut issues, which I thought might be important since that's where thyroid medication is absorbed. He didn't seem to care, nor did he respond to any of it - he just stared at me blankly as if he didn't even hear any of it! He also seemed to almost pat himself on the back for the fact that I was now "cured" of my Graves', and told me that it doesn't affect me anymore (how in the world can he tell me what does and doesn't affect me anymore...?) ! A whole lot of self-congratulating and not a lot of listening to me, really.

That Graves' comment has been coming up more and more in these consultations recently. Nevermind the fact that this whole ordeal has been deeply troubling and traumatizing for me, but I don't even think it's ethical for healthcare 'professionals' to say things like that. I'm not fully convinced that someone can cheat their way out of the 'chronic' part of a chronic illness diagnosis given how much it can bleed into all areas of your life (and if you could, it certainly wouldn't be by removing an otherwise healthy organ resulting in becoming reliant on lifelong medication and torturous consultations). It isn't right to use such absolutist language like "you're cured!" in these circumstances. It hurts, because my life has been irreparably changed by this disease that I'm apparently "cured" from. Imagine the false hope I was given at 19 being told I would be "cured" after having this horrible surgery. None of the doctors I've seen have ever had Graves' disease. Most haven't even had thyroid problems. They don't know what it's like. I don't claim to know how they feel in their personal lives; it is simply not their place to tell me how the heck I should feel in mine. I wish I'd told him that.

Anyway...I asked if I could have some more time to "think about" whether or not I want to come off the T3 (meaning that I want to stay on it), but I worry that it's only a matter of time before it really does get taken away from me. Plus, when it runs out, I doubt I'll have any more dispensed for me. I asked if maybe because I was so thyrotoxic for so long, that's resulted in me losing some kind of sensitivity to thyroid hormone, hence why I need so much to feel well? But of course, that idea was ignored and not really refuted? I dunno. Anyways, that was my update x Sorry as usual for it being so long!! Not sure what to do the next time I inevitably have to fight for my T3 again..

[SlowDragon Administrator]

Lots of gaslighting and...dodgy sounding "information" (the most shocking of which being that apparently the thyroid doesn't even produce T3, the cells in our body do that??), along with the predictable condescending attitude, and finally, trying to take the so-called "T3 supplement" away from me. He said that I probably only feel better because of the placebo effect, that it's probably in my head, that the way I felt on T4 only is how "normal" is supposed to feel...the unfortunate and hurtful usual. He also seemed to almost pat himself on the back for the fact that I was now "cured" of my Graves' and told me it doesn't affect me anymore! A whole lot of self-congratulating and not a lot of listening to me, really.

What a truly unpleasant and unfeeling man

[lau99 in reply to SlowDragon]

Agreed I never come away from endo appointments feeling good about myself or my situation. They're great for making you feel down for the rest of the day.

[shaws in reply to lau99]

Some people say anything in order to persuade the patients that 'something' else is better.

We, the patient, knows full well what suits us, what makes us feel much better and more normal and certainly wouldn't be searching for help/advice on a forum if levothyroxine was restoring our health.

Thankfully, due to this forum we learn more and have support and many members return to good health by avoiding 'experts'.

What I cannot understand is that the 'experts' seem to work on theories alone and don't listen to the patients properly, neither do they seem to be knowledgeable about the disabling symptons someone many have who are prescribed 'options' instead of optimal dose of thyroid hormones.

[Yeswithasmile]

Just wanted to say how sorry I am that he is obviously such a massive egotistical dick. How sad is it that these supposedly educated people have this illusion of superiority? That they can sit and literally blag their way through purely because we are all so lacking in grey matter. To top it off their constant lack of empathy and compassion adds to the insult. In my house we tend to refer to them like this…

GP = kwik fit fitter. Basic knowledge with spanner’s.

Consultants = bmw technician (feelings of grandeur but no more knowledge than a kwik fit fitter just better diagnostic tools.

You may have guessed we own a garage and my partner likes to say he’s a doctor of vehicles 🤣

I can say that I have spent years stressing over doctors and consultant appointments. I do have a prescription for t3 but I also buy my own. Once I discovered how easy and surprising cheap it was to do without a prescription I decided that whilst a script is great and I’ll keep it as long as I can, I will no longer sweat/bow down boosting their egos just to keep it. It sounds to me like your knowledge far outweighs his and so you are never going to find answers from him anyway.

I’m sorry I haven’t anything positive to help but I do feel for you x.

[fuchsia-pink]

I'm so sorry, Lau.

In terms of his comment about the thyroid not producing T3, I suspect he's actually right: the thyroid produces T4 and IT converts into T3 (or not so much, if you're a rubbish converter). And it's because I'm a rubbish converter that I feel so good with lio added into the mix. And if that's only a placebo effect - frankly who cares? You don't actually know that ANY medicine works - just if it makes the patient better or not, and surely that's enough! The costs of lio is coming down and down (now only 50p per tablet with a private prescription apparently, although obv our "beloved" NHS pays a whole lot more) - so it's not even a particularly expensive placebo is it?!

Hang on in there, please: don't let them take away your lio, and if "they" get snotty, say that you need to see someone else before such a drastic decision is made - as the previous person seemed to have "issues". I doubt there's any point complaining formally about him and his lousy attitude, but please stand firm and don't consent to losing your lio xx

[Jazzw in reply to fuchsia-pink]

Just to say…

The thyroid does produce some T3–well, a normally functioning thyroid does. About 20% of our daily requirements, in fact. The other 80%, as you rightly say, is what the body needs to convert from T4 to T3. Most of that conversion takes place in the liver, some in the gut and a few other places.

So your Endo is uninformed lau99 . Probably shouldn’t really be calling himself an Endo.

[pennyannie]

Hey there again Lau :

Good that you are writing this all out and hope you find this cathartic :

Can you just remind me - what dose of T3 and T4 are you now taking as it reads that you do still have a T3 prescription and am guessing you under Devon CCG rules and regulations and likely stuck on 10 mcg T3 ?

I'm glad the T3 has helped you - surely the fact is the trial has worked for you and therefore a clinical need identified :

The rudeness, disrespect, lack of empathy and alarming lack of understanding of any thyroid knowledge is power for the course and probably why your last appointment was with a stranger who was not invested in your health but in cutting NHS costs.

Your journey has been long and arduous but you are a much stronger woman coming out of all this and you will find a route through this just as you did, when your journey started on here several months ago.

I have read that those of us with Graves are used to higher levels of T3 than maybe seen in other patients.

I also know that my reverse T3 was well over range in 2016 which is excess, unconverted T4 and now feel much better on the much lower level of T4 found in NDT.

I presume the big build up of excess T4 I was carrying through Graves was exacerbated by being solely dosed on T4 monotherapy after RAI thyroid ablation, and then not converting the T4 for too many years, simply compounded my problems.

I don't know but would imagine I've now cleared this build up and my level would now be back in the accepted range.

P.S. As I understand it, you say you do feel better on a T3/T4 combo so surely this means there is a clinical need and your prescription for at least a measly 10 mcg T3 if in Devon is maintained ?

Your probably not enough T3 yet to say you feel " so much better " BUT there have been improvements so surely you keep this NHS starter dose of Liothyronine ?

[Rock_chick1]

Oh, I know of an endo just like that in the South West!

[lau99 in reply to Rock_chick1]

Terrible how there seem to be quite a number like that in this area

[tattybogle]

" and...dodgy sounding "information" (the most shocking of which being that apparently the thyroid doesn't even produce T3, the cells in our body do that??), "

Well i'm not a scientist , i don't understand this and i need diogenes help for that .. (and i understand fushiapink 's point that some T4 is converted to T3 in the thyroid rather than ? the thyroid directly producing T3 without it being T4 first) .. but

....... i seem to remember diogenes making some comment once about 'de-novo ' T3 production from the thyroid .. and this latest research from his colleagues does seem to say there is some actual T3 produced by the thyroid :

onlinelibrary.wiley.com/doi...

Triiodothyronine secretion in early thyroid failure: The adaptive response of central feedforward control

Rudolf Hoermann,Mark J. Pekker,John E. M. Midgley,Rolf Larisch,Johannes W. Dietrich,

09 December 2019.

"We combined in silico analysis and in vivo data to explore the central influences on thyroidal T3 production."

"with the feedforward control of thyroidal T3 secretion and enzymatic T4-T3 conversion."

" While T4-T3 conversion provided the main T3 source in euthyroidism, this was overtaken by increasing glandular T3 secretion when thyroid reserve declined. "

But whatever is correct , eg. if the thyroid makes only T4 and the cells in the thyroid then convert some of it to T3 before secreting it ,or it does make some actual T3 directly.... The fact remains if you loose your thyroid gland, you've lost those cells , so you then won't have as many cells in your body to convert T4 to T3 . so you'll be compromised to some degree in the T3 production department.,,,

So him saying "the thyroid doesn't make any T3, your cells do " suggests to me that he either:

a) doesn't know as much about the thyroid as he thinks he does. or

b) is trying to be a 'clever twat' just for the sake of it.

[tattybogle in reply to tattybogle]

further evidence to put under the nose of the Enso who says 'the thyroid doesn't even produce any T3'jbc.org/article/S0021-9258(...

De novo triiodothyronine formation from thyrocytes activated by thyroid-stimulating hormone

"In normal humans, classic studies have estimated that only ∼21% of daily T3 production is derived from thyroidal secretion (the rest coming from deiodination of T4 to T3 by deiodinases D1 and D2) (7). However, in patients with untreated Graves' disease (a disease of thyroidal hyperstimulation by TSH receptor-stimulating antibodies (8)), thyroid tissue is markedly enriched in T3 concurrent with increased T3 in the circulation (9, 10). Although some increased thyroidal T3 production in Graves' disease might be derived from intrathyroidal deiodination of T4 to T3 (11), the aforementioned study of untreated Graves' patients reported increased thyroid tissue T3 only after Pronase digestion (7). Moreover, mice with whole body D1/D2-double knock-out (DKO) nevertheless maintain normal circulating T3 levels (12). Taken together, these findings strongly imply that the thyroid gland has the capability to contribute importantly to circulating T3 via a mechanism involving de novo T3 formation, and this may be particularly important in Graves' disease."

tandfonline.com/doi/full/10...

" Finally, a mechanism for TSH receptor-driven increased production of T3 in thyrocytes, independently of deiodination of T4, has been described, adding a further level of complexity. 32 "

[NIKEGIRL]

Well what a terrible day u had. I am learning to be assertive. You were passive in that appt and by that you knew that the registrar didn’t know some things but u allowed him to spout his crap anyway. It is ok to speak up and disagree with the registrar. We r not talking about getting aggressive. You are the one living this life, albeit crappy, but u have the right to disagree with the registrar and say that the T3 trial is helping is a positive way. Some more T3 would be good to enable u to make more positive progress and you do not consent to the trial being discontinued. Be assertive and speak up for yourself. Sadly no one else will do it. Do not go to these appts alone. Take close family members or very close friends who will advocate for you. Honestly I don’t know what to say. I have PTSD from drs and what u r experiencing is traumatic. Just putting that out there to validate your experience. I wish that wasn’t the case. Love to u always.

[shaws]

Refuse to stop the T3 - tell them your health has improved with its addition and its relieved your horrible symptoms.

Let the Endo have his thyroid gland removed and don't give him any replacement at all. Then he can experience a little of what a patient has to go through.

Tell him you've taken advice of multiple people who've hypothyroidism but recovered their health by being prescribed either a combination of T4/T3, or T3 alone.

I was far more unwell on levo than before I diagnosed myself when TSH was 100. GP had phoned me earlier to inform me that tests were fine and I had nothing wrong with me! He apparently did not know that 100 TSH meant the patient was seriously hypothyroid.