Low T3 Syndrome in CFS and Fibromyalgia

[DeniseR]

Has anyone seen this research paper? Didn’t even know ‘Low T3 Syndrome’ was a thing. I always wondered why taking T3 seemed to cure my CFS and Fibro. Now just to work out why peri menopause has set me back again and how to fix it!

frontiersin.org/articles/10...

[DippyDame]

Yes, I've posted it many times

Have you read this?

healthrising.org/blog/2019/...

[DeniseR in reply to DippyDame]

No I haven’t! Will take a look. Thanks.

[RedApple Administrator]

The paper is dated March 2018. I wonder if anything has happened since then as a result of it.

'Conclusion

The most remarkable finding in this CFS case–control study was a higher prevalence of the “low T3 syndrome,” attributable to a subgroup of CFS patients. Chronic low-grade metabolic inflammation was not convincingly noted. Low circulating T3 may reflect more severely depressed tissue T3 levels. The “low T3 syndrome” might be in line with recent metabolomic studies pointing at a hypometabolic state. It also resembles a mild form of NTIS and the low T3 syndrome experienced by a subgroup of hypothyroid patients with T4 monotherapy. Our study needs confirmation and extension by others. If confirmed, trials with, e.g., T3 and iodide supplements might be indicated.'

[DippyDame in reply to RedApple]

We can dream!!

In my case it appears to have been a form of thyroid hormone resistance causing low cellular T3/cellular hypothyroidism. After much "digging" a supraphysiological dose of T3-only turned out to be the solution for me....but medics do not approve!Endo said I should take Levo, which after 20+ years had left me barely able to function!

I self medicate otherwise I may have faded away by now!

it's a ridiculous situation but I'm not going to start another rant....!!

[DeniseR in reply to DippyDame]

Same here! I self medicate too and have done for about 10 years. Endos and GPs just patronise me and tell me I should stop. 😢

[DeniseR in reply to RedApple]

I couldn’t find anything else on it unfortunately but it would be nice if this was at least considered when GPs and Endos are ‘trying’ to help! 😕

[Marz]

If you scroll down to Related Posts - there are 10 more posts similar to yours where Low T3 Syndrome is discussed! There could be more info for you .... 🌻

[DeniseR in reply to Marz]

Thanks, I’ll have a look!

[Delgor]

Thanks DeniseR for posting this as I have never heard of Low T3 syndrome before. I was diagnosed with CFS years ago after having a Coxsackie B virus which caused my thyroid to go overactive with a goitre which resulted in a thyroidectomy. I was fortunate in finding a virologist who prescribed NDT and was kept well in the main on this up until a couple of years ago but unfortunately that isn't the case anymore. May I ask what medication you are taking please as I wonder if Armour isn't suiting me anymore. Thanks in advance.

[DeniseR in reply to Delgor]

Hi Delgor

Sorry to hear your not well again.

I’m in the same boat tbh. I’ve been taking T3(Liothyronine) for about 15 years now and was also diagnosed with CFS and Fibromyalgia before that. T3 worked amazingly for me but now I feel that Perimenopause has changed everything and I’m struggling to find my way through. It doesn’t help that labs are only testing TSH at the moment either 😕

[Delgor in reply to DeniseR]

Hi DeniseR,

Thanks so much for replying although I'm sorry to hear you are having problems as well. Yes hormone changes of any kind will upset the applecart and it's so hard to find an endo who specialises in thyroid problems. As for testing TSH only - there seems to be a purge on it at the moment but I'm now doing my own private tests as I feel rightly or wrongly that I need to take control of my own health. Take care!

🤣

[qkcam in reply to DeniseR]

perimenopause can be difficult. .i am sorry you are having a hard time.. someone recently told me about this test. it is supposed to be very accuate to help see what hormones are doing .. it saddens me so little research seems to be done on female hormones. dutchtest.com/

[bookish]

Thanks for that. I'd thought that my reducing FT3 might be NTIS as everyone seemed happy to ignore it and FT4 wasn't so bad then, and I hadn't appreciated that there was also low T3 syndrome or potentially central hypo. Unnerving that the report states that the cellular level might only be 1-6% as compared to the 30% of serum and that (in rats) the affects are highest in liver & kidneys - just where I am seeming to have issues developing. Brain is clearly better for what I've changed already, but who knows for how long if I can't get the FT3 up. Agree that oestrogens/progesterone balance affects everything else hugely. Best wishes

[qkcam]

Hi I have been experimenting off and on with thyroid.. CFS for a couple decades. Where can I find info on how those of us that are self dosing are following which protocols? sorry if this isn't making sense. but brain fog.. was on 112 tirosint and 30mcg t3 felt better but sleep was becoming non exhisistant.. I am not sure it if was the thyroid or the caffeine though but I stopped the T3 out of sleep desperation about a month ago.. and now I can hardly move my body. would love to find more info ..thank you

[humanbean]

was on 112 tirosint and 30mcg t3 felt better but sleep was becoming non exhisistant

If thyroid hormones make sleep difficult or impossible there are a couple of things you can try without involving a doctor or asking for an increase in dose.

1) Change the time you take your thyroid hormones e.g. if you normally take them at night then try taking them in the morning, or vice versa.

2) When on T3 you can split the dose into two or three doses and try to take them every eight hours or every twelve hours, or spread them out during the day while doing your best to avoid taking them near food. You can take Levo in the morning, the evening, or during the night.

3) Whatever dosing schedule you use, remember to keep good records of everything you've tried so that you don't reinvent the wheel.

[qkcam]

thank you humanbean.. I feel silly..my memory is SOO bad I forgot i even asked this question here. I just placed a more complex post with details .. I totally forgot about this and it was less than a week ago. I need to figure out how to remember these things. thanks again for your suggestions. I can try mixing things up : )

[humanbean in reply to qkcam]

I wouldn't worry about forgetting asking a question. I do it often, and I'm fairly sure I'm in very good company. Sometimes I will forget entire threads that I created, sometimes I'll forget a reply I made to someone else's thread which someone then follows up and expects a response.

I need to figure out how to remember these things.

I have thought that a useful feature of the forum would be if members could set an alert for any post they want to be reminded of. As it stands at the moment if I get an alert and I follow it up, I might think to myself "I'll answer that later". But closing the thread gets rid of the alert, and it often then becomes a case of "out of sight, out of mind". I would like it so that I could set a "semi-permanent" alert for something I want to remember, which I could then remove later.