CFS linked to low thyroid... new medi... - Fibromyalgia Acti...

Fibromyalgia Action UK

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CFS linked to low thyroid... new medical paper


I hover between the HU thyroid forum (which gave me enough info to heal myself), the CFS forum & the PTSD forum.

I've just seen the above link on the facebook thyroid page (ITT = Improve Thyroid Treatment). I have a friend who has recently been told by her GP that she has CFS. Not sure how similar CFS and Fibromyalgia are, apologies.

5 Replies

That is interesting, I was diagnosed with primary hypothyroidism 17 years ago but continued to suffer on T4 treatment. Got referred again when I couldn't walk more than 10 feet, just slept most of the time as zero energy. He tested everything thoroughly then scratched his head and said I will probably discharge you with a diagnosis of ME/ CFS. I told him that is a throw away diagnosis. Long story but in the end he said I was actually suffering from Central Hypothyroidism which is quite rare and usually gets misdiagnosed because the thyroid levels at first glance look normal, although you have full blown symptoms and illness. Central Hypothyroidism cannot be monitored by the TSH level, just dose titration until all symptoms are resolved. I think there are lots of women out there thinking they have ME/CFS when in fact they have some form of hypothyroidism. I know because they almost stuck that label to my head, but they were wrong! I would advise anyone in that situation to push for thorough thyroid analysis by a thyroid specialist Endocrinologist. Levothyroxine is no wonder drug and certainly did not work for me, however it does help a lot so I would definitely give it a go. There is no danger taking Levothyroxine providing you are monitored. You will soon know if you don't need it, it's only a hormone at the end of the day.

marigold22 in reply to Lulu2red

You should go over to the Thyroid Forum, and learn about how to get correct blood tests for thyroid. There are certain ones you need, also many doctors (GPs and consultants) are incapable of interpreting them correctly. You are legally entitled to have copies of your blood test results (it's your body), but unless you request a copy you don't see it. Many of my old thyroid blood test results were either right at the lowest or highest end of the Range or out of Range. But the doctor ignored it completely.

It sounds to me that you have been fobbed off with an easy diagnosis by your doctor... when you know your thyroid is involved.

marigold22 in reply to Lulu2red

Hi again Lulu2red . I had a mega bad night and have only just surfaced. Re-read your reply to me.... I always knew I had hypothyroidsim - diagnosed 1981, and was prescribed Levo (T4); always felt worse on it than before taking any thyroid hormone prescription. In 1995 I saw a private doctor who told me that my body couldn't convert the T4 into the usable thyroid hormone T3. So he stopped the Levo (T4) prescription and gave me Liothyronine (T3). Until then I had no idea whatsoever there were other options to take for low thyroid levels. There is also something called NDT (natural dessicated thyroid).

However, and it's a Big However, there is a massive uprising currently about the various thyroid hormone replacement prescriptions. Doctors only want to prescribe the Levo (T4) for apparently various reasons. There is a massive fight going on by a group called ITT (Improve Thyroid Treatment), which you can find on Facebook mainly. They have done an amazing job so far by getting Lord Hunt (of the House of Lords) involved to get to the bottom of the reasons we Thyroidies are being treated so very badly, and basically left to rot.

But your main priority is You. You must learn how to get the correct blood tests done - either on NHS or privately - and also learn how to get and interpret those blood tests. It seems we are all having to fight for our rights, whilst feeling very ill. Best of luck x

That is really interesting. I was diagnosed with Fibro and used to have awful pain and fatigue. In later years it is the fatigue that has taken over. Later I was also diagnosed with an underactive thyroid and given levothyroxine which helps somewhat. However I believe this article is on the right track. It's may be not how much T3 and T4 in your system but what use your body is making of it, how active it is.

As I said to Lulu2red , you should go over to the Thyroid forum, and learn about correct thyroid blood tests to do, and also how to interpret them correctly. Whilst on there, you will see that many of the thyroid forum members are having to fight through in order to get better, and only do so by learning from that amazing forum. The army of (mainly) women on there have helped me to recover my health.

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