Response to Women's Health Survey from Improve Thyroid Treatment group

[Arnie Pye]

The response to the Women's Health Survey from the ITT (Improve Thyroid Treatment) group can be found here :

https://drive.google.com/file/d/1sK6d8LManRI3mMIDT5nERThwRPOZlnRT/view

I thought it might be of interest since so many people with ME also have thyroid disease of some kind. And I suspect that many people with poorly treated or untreated thyroid disease are diagnosed with ME.

 

[Invisible Woman]

I was lucky enough to have a really good endocrinologist for a while. He was a private doctor so had the time to take a thorough history.

I was diagnosed with Hashimoto's in my mid 20s. However, it turns out that symptoms that I had consulted my GP about from my early teens onwards were all classic signs of developing hypothyroidism.

Each symptom taken individually might be missed by when you look at them together it's a fairly clear picture.

It's a clear example of the lack of easy feedback that patients who suffer from such a common disorder get such poor treatment.

 

[Arnie Pye]

There were far more responses to this survey than were given in the document from post #1 itself. All the patients who gave examples of doctors' comments, and many of them couldn't be included in the response itself due to lack of space. So, there is a supplementary document available, which is not part of the survey, with all the examples of eye-opening stuff that was said to patients by doctors, and they are given in this document :

https://drive.google.com/file/d/1M93pROcJB_9sV180HJpaJlEb0FYX6HCt/view

 

[DokaGirl]

My Hashimoto's was diagnosed in my early 20s.

Other than allergies, my first encounter with a long term disease. The fatigue now reminds me of the fatigue then. I was so weak and tired, with the hypothyroidism I would just come to a halt, and had to rest.

 

[Invisible Woman]

The fatigue now reminds me of the fatigue then.

Interesting.

The symptoms of low iron, hypothyroidism, allergies and ME definitely overlap in places and it can complicate trying to untangle what's causing it when I go through a bad spell. Sometimes it is just a bad spell.

The fatigue I experience with hypothyroidism feels rather different than ME to me.

With hypothyroidism and anaemia I will definitely feel fatigue as a primary symptom - fatigue occurring with no apparent cause. I will feel.my eyes shutting and fall asleep without trying to when on the sofa in the evening. Evening is usually when I'm most alert.

ME, on the other hand, feels more like I've been poisoned. I tend not to get that overwhelming sleepiness but feel hungover and ill. Often the more I need to rest the less I want to - I don't know if it's because I'm trying to distract myself from how ill I feel.

 

[DokaGirl]

Hi @Invisible Woman

Yes, it's difficult to sort out which issue is causing what.

With the complication of ME, I can't differentiate the ME fatigue from my hypothyroidism.

If something else is going on that causes fatigue it takes me a few days or longer to distinguish it from the ME, because I just think I'm in a crash. If other different symptoms come along then that twigs the realization there is a separate issue.

Several years pre ME and just before my hypothyroid diagnosis, I had exercise intolerance. An office job was OK, but as soon as I went and did my usual physical activity, a very few minutes in, I'd have to stop. My muscles just sort of came to a halt.

Once at the doctor's office potential signs, things like dry skin were pointed out to me. I think back then, (in the dark ages ), T4 was the test, and not TSH.

As for now with ME, my symptoms are much more complicated. I often feel like I'm hung over, and beaten up. Poisoned would also be a good description instead of hung over, for how I feel. And dragging my body through molasses. Or limp like a marionette at rest. There is also the feeling of weakness, which seems separate from the limp feeling. And, of course many of the other ME symptoms like OI, GI issues, memory problems, other cognitive problems etc., etc.

ETA: The problem of not being able to differentiate can mean other health issues come along that are just put down to ME, unless they are different. But worsening of symptoms one recognizes as ME, when they're not is a concern.

 

[Mij]

My sister gets dizziness from time to time from Hashimoto and has to take a day off work. She gets fatigue but can still work, but high impact aerobic exercise is hard for her. She experiences what she describes as 'brain fog', which is not at all close to what I experience with cognitive impairment.

She definitely doesn't have to pace or manage her energy. She can keep going until it's all done with no pay back the next day.

 

[Invisible Woman]

I guess for me "fatigue" is a symptom of hypothyroidism. When I get that fatigue it's a red flag to ask for a thyroid function test. I can normally tell if my TSH goes above 1.

All other bits and bobs such as anaemia etc under control (or as good as it gets) that sense of fatigue isn't there. Lack of stamina for sure, maybe fatiguability of muscles or brain.

The big overlap for me is pain. When my dose of T4 needs to be increased the background pain levels go up. It's very similar to ME background pain "noise" .

I got myself into an awful tangle a few years back. A hormonal problem masked my need for increased T4. The need for increased T4 masked many of the symptoms of the hormonal problem. I felt like I was dying - literally.

Of course my cognitive function was non existent and by the time I got myself to a GP my TSH was over 25. Once that started coming back down we realised the hormone problem needed to be addressed. It took many, many months of misery to sort out.

I was lucky I had previously been in the care of both a good endo and a good gynae and a decent GP at the time who helped me.