The Challenges and Complexities of Thyroid Hormone Replacement (2010) Kansagra et al.

My wife's ME onset coincided with having a nasty bug whilst recovering from a thyroid operation, and being as thyroid function controls metabolism (implying energy conversion), I'm trying to understand if some (or all!) of my wife's ME-like symptoms really are all down to ME, or in part at least, to badly managed thyroid levels due to her hypothyroidism. Could it be, for instance, that her ME might have improved somewhat over the years, but that improvement masked by sub-optimal thyroid T4/T3 levels?

This is not a new study, but is something I came across whilst endeavouring (as a non-scientist) to better understand thyroid/pituitary/hypothalamus functioning. This bit of the conclusion suggests there is still much science does not understand regarding the relative merits of just T4 replacement therapy, versus combination T3/T4 replacement therapy. Including here, given the energy-deficit consequences of hypothyroidism overlap in many ways with ME - not sure about PEM though.

https://academic.oup.com/labmed/article/41/6/338/2657554

 

As someone with Hashimotos, diagnosed many years before ME, and having experienced poor information and under medication in the early years of being diagnosed with Hashimotos, I think it is almost impossible to say to what degree one will affect another.

I was lucky enough to finally find a good endocrinologist and got to experiment a little with T3 (which didn't help me). This was after developing ME.

All I can say is even when I feel symptom free in terms of thyroid, I still have severe ME.

Both conditions seems poorly understood and I guess it's possible that what made me susceptible to developing Hashimotos was also an underlying factor in developing ME.

To me, having experienced hypothyroidism before ME, the symptoms feel quite distinct. The "fatigue" you get is not the same, the aches and pains are not the same....

Would ME feel different to me without the thyroid isssues? I'll never know.

 

Also, ME affects other hormone systems, so why not this one too? Just about every bodily system seems affected in one way or another.

 

That's the thing -they're all interconnected and it's not just endocine hormones but sex hormones too. For example, giving birth and the menopause can trigger thyroid problems.

All the systems are related and connected in some way.

 

This post and subsequent discussion have been moved from another thread here at @Barry's request.

I find this interesting, because my wife developed ME after a thyroid operation, and contracting a bad flu bug during her convalescence.

I now understand - having been doing a bit of reading up - that the pituitary gland regulates the level of T3/T4 in the blood via a closed loop control; commanding the thyroid by way of TSH, to regulate T3/T4 blood levels to a given level. In turn the hypothalamus provides its own setpoint into the pituitary, thereby itself regulating at what T3/T4 level the pituitary/thyroid control loop should be controlling at. So anything going wrong here risks screwing up energy production. I think there are two cascaded (i.e. nested) control loops here.

My wife's condition is additionally complicated by the fact she has two medical conditions which can seriously deplete her body's capability for energy production: hypothyroidism and ME. If she only had the hypothyroidism, they could get it roughly right with the blood tests, and then fine tune with "How are you feeling? Do you still get tired?" But I think the complexity is evident here for someone with ME. My wife and I are becoming convinced her hypothyroidism has not been managed adequately, and that what we have presumed to be her ME getting slowly worse, is actually her hypothyroidism 'drifting' and needing more thyroxin.

But when you have two or more conditions, with significant symptom overlap, especially if one condition is more easily fixable, then it is wise to maybe not take your eye off the ball, as I think we (and GPs over the years) maybe have. This is currently a work in progress for us now.

 

Is she taking T3, too?

 

No, but having been on 75µg T4 for many years, and trying 100 for a while, the difference is very noticeable. Doesn't T4 just convert to T3 anyway?

 

If everything works fine (-> zinc, selen and others e.g.). She should have her ft4 and ft3 checked. I took T4 alone and I could have increased it to 100 micrograms or whatever, but it didn't improve hypothyroidism symptoms, only that I got hyperthyroidism symptoms, too. My ft3 remained low although ft4 was in the upper range (this is called conversion disorder of T4 to T3 in English I think; it seems to be not uncommon, and there exist several papers about this). There was a thread about this topic but I don't have the link.

 

Inara, we are currently in process of accessing test results, so will see what gives. But my wife walked significantly further the other night than she has done in many years, albeit still slowly and far from fully able. Both very pleased. Thanks for your input.

 

Sorry @Barry

 

I'm confused why you are apologising Inara? Don't see what you need to be sorry for, which worries me I may have said something to upset you without realising it. Really appreciate your advice, and will follow it up soon as able. Genuine thanks .

 

That's really interesting. Once we can look at my wife's results will first look to see if these have been measured.

 

There are very long threads in the other place re thyroid
The paper published earlier this year induced low T3 state, linking to Naviaux' s dauer state is interesting. There was a thread on it i think
http://www.meassociation.org.uk/201...levels-of-key-thyroid-hormones-20-march-2018/

 

No @Barry! Oh I was sorry to have taken the other thread off-topic. (Now I'm sorry to have upset you.)

 

It's very easy to lose track and forget about managing thyroid issues when you have ME.

I was undermedicated for years and was just told my results were fine & within the normal range.

Eventually, under the care of a good endocrinologist we discovered that "normal" or what feels right for me is actually borderline abnormal with almost below normal TSH and T4 just inside the higher end of the range. We experimented and when I self adjust I always put my readings in the same place.

If your wife can investigate T3 @Barry, that might be worth it. Though not all docs are prepared to let you try it out. I felt really awful on it.

 

Many thanks. Yes, must try and tune into these issues.

 

T'was me who started it . But no, it's really great to have all this help. Will work on it by looking at just one aspect at a time, to avoid complicating things.

 

Something else to check out now I think about it: certain medications, particularly those containing oestrogen can increase the need for thyroid meds a bit.

LDN can reduce the need in auto-thyroiditis.

I would also have a look at any other meds who mention thyroid contraindications even if they say it's okay if the patient is being treated for their underactive thyroid. I often found these affected me, even though many docs will say it shouldn't.

 

My aunt had a partial.thyroidectomy in 1980. With ME her hormones were all over the place.
She has been using temperature readings to titrate medication dosages and this seems to help stabilize things.

Note adrenals are often overlooked and can create havoc - there dosn' t seem to be a " nested" feedback loop on cortisol ( perhaps as it is key in fight or flight) . Treating thyroid issues if there are underlying adrenal issues could be disastrous .

 

I have thyroid changes in echogenecity ,no anti thyroid antibodies and presumed my thyroid is being pickled by an excess of cytokines