Hi. I have had fibromyalgia for around 12 years, which has been treated with high doses of morphine that I am now almost free of. I have always suspected a thyroid problem linked to my fibromyalgia, as I gained 64lb after diagnosis, despite eating healthily, but my blood test results were always normal. I stumbled across information about T3 in a book a couple of months ago and tried. I now take 100mcg daily in 4 doses and feel so much better. I keep seeing forums discussing T3 (though not for fibromyalgia - I think it's mainly for bodybuilding), in which everyone seems to take it for around 3 months then have a break. I just wondered whether someone could tell me whether it can be taken continuously for fibromyalgia or treatment breaks are advised.
I would be so grateful for any advice you could offer.
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Vaniajc
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If you need T3 then no breaks are advisable. The bodybuilders don't actually need it. They are probably going hyper trying to cut fat, thus the breaks.
That's fantastic that T3 is helping your pain. What did your so-called normal labs look like? Do you have any results you can share?
I dont really know what they mean, I've just read a bit about T3 helping euthyroid fibromyalgia patients. I can believe the difference in my pain - that's why I'm tapering the morphine. My face and fingers have also lost their puffy appearance and my brain fog has lifted considerably. I'm so glad I read that book! 😊
Those results suggest a struggling thyroid or possibly central hypothyrodism,although free T3 is great (or was that after you started taking T3?). You'd expect a higher TSH with free T4 ear the bottom of the range. Not euthryoid anyway. Most healthy people have TSH around 1.2.
Thank you so much for your advice - the results were before I started taking T3 (finger prick test at home). The T3 has made a huge difference to my fibromyalgia pain (it has pretty much gone, even without the high dose of morphine I've been on for years), cognition, and energy levels, and the puffiness I had in my face and fingers has disappeared, so I really want to continue taking it, but I was concerned about heart issues with long-term T3 use, as my blood pressure seems a little bit higher than usual. I don't really know enough about it to know whether I might be doing myself harm, and I wasn't sure what the results meant. I have heard about tissue-level thyroid problems though, and given the improvement in my symptoms, I think that's definitely a possibility.
No, before. I took my temperature for a couple of weeks as well, and it was always around 2 to 3 degrees too low. Don't they look right for before? I should also say that it was a finger prick test - I heard afterward that they aren't always that accurate.
Well, your fT3 level looked pretty good given your fairly low-normal fT4 level. But you may have some kind of tissue resistance going on. Symptoms are the ultimate judge of the effectiveness of any treatment.
Some I'm sure will tell you to take levo to increase your T4 first, but then you can get into rT3. So if you feel good and all is well, don't change anything. Godspeed!
It looks like you have a peripheral resistance to thyroid hormone, which doctors don't recognize. Fibromyalgia is associated with hypothyroidism. I would continue with your liothyronine but keep a close check on your heart rate. You are on a very high dose called a supra-physiological dose. I would try reducing your a little every couple of months, just to see if you still need the high dose.
You may find taking a magnesium supplement helps your fibromyalgia in the longer term.
It is not some alternative medicine or made-up thing - it is real, it is being researched and (probably) the world's top specialist is one of the authors of this chapter:
Thanks for posting this link Apart from symptoms, is there a way of knowing that this is going on, helvella? I thought I'd seen mention of a urine test but not sure where.
Glad to hear its had such an amazing effect on you. It is a very high dose you are on so agree with others that its worth trying to reduce periodically to see if you can. Dr Lowe wrote a lot about the link between Fibromyalgia & thyroid & found that some patients only did well when given t3 only. Its quite a step you made but if it works ...... wishing you all the best...
I'm assuming that you are self-treating and self-testing. Be aware that doctors will freak out about you taking 100mcg of T3 per day (if you tell them), so be prepared and decide what you are going to say about it if you ever have to discuss it with your doctor.
Of course, if you are self-treating and self-testing you don't have to discuss it with your doctor at all, if you don't want to.
As helvella noted there are a number of conditions that can cause impaired thyroid hormone action. These are nearly all genetic. Since most of us develop problems later in life the genetic conditions will not apply, which means you don't need to study and understand the excellent but very complicated paper she referenced. My view is that the sort of resistance to thyroid hormone (RTH) that we develop is probably caused by endocrine disrupting chemicals (EDCs) in the environment. This is a very deep subject.
Most forms of RTH tend to affect the brain and some other tissues more that the heart (the reasons are very technical). This means that when you are on high doses of thyroid hormone you need to be careful not to overstimulate the heart. This is why I suggest a cautious approach.
The only way you can titrate your treatment is by going by signs and symptoms, adopting a little caution. A urine test can measure T3 levels over 24 hours but my view is that blood tests are more accurate. In any event this information is of little use to you, you are taking supra-physiological doses of L-T3 and your fT3 will be abnormally high.
One important point for fibromyalgia is to try and get good sleep, natural sleep. Fibromyalgia patients suffer from the 'alpha / delta sleep anomaly', as they go into deep stage 4 sleep they revert to light stage 1 sleep. About 70% to 80% of growth hormone (GH) is produced in stage 4 sleep and GH is needed to repair micro-trauma to tissues that occurs in daily life. Experimental subjects that are deprived of stage 4 sleep develop fibromyalgia like pain. So, natural sleep is important. You may find you are sleeping deeper since you started L-T3. In this respect magnesium helps also. You can take your L-T3 twice daily if that is easier, at breakfast and bedtime.
Since most of us develop problems later in life the genetic conditions will not apply, which means you don't need to study and understand the excellent but very complicated paper she referenced.
I do not believe you can conclude that genetic conditions do not apply even if the issues only appear in later life. Let us take one trivial thought example:
Someone has always had reduced sensitivity to thyroid hormone for genetic reasons. However, until something affected the ability to produce thyroid hormone, this had been compensated for by producing more thyroid hormone than other people resulting in higher blood thyroid hormone levels. They were never noticed because there had never been a reason to test!
Now there is an issue, it is revealed by what would in most people be seen as adequate thyroid hormone levels not having the expected effect of making the person well. I suspect only a particularly on-the-ball GP would ever pick that up.
I should have been more specific. I had thyroid hormone receptor mutations in mind. These are rare and present with unusual blood test results. These are lifelong conditions and can have effects no matter how good the thyroid is functioning. Other minor genetic variations such as the DIO2 polymorphism tend to surface once a person has become hypothyroid. The obvious example of a genetic condition that presents in later life is male pattern baldness. In general I think the sort of problems we see are likely to acquired rather than of genetic origin.
Thank you for explaining that helvella. I didn't develop Graves until I was in my 60's and I've only discovered that I have a faulty gene since having the DIO2 test, which explains why I felt like I was dying when I was only taking Levo, after having RAI.
Keep an eye on heart rate and blood pressure and good luck 😃 Check your B12, folate and ferritin levels, you need them optimum not just in range. Mine were woefully low. And vitamin d levels 100-150. I just cannot tolerate t3 only and use NDT. T3 sent my blood pressure sky high😞 For two days on 37 1/2mcg a day brain fog vanished totally... Was soooo good... But blood pressure went aaargh scary so had to drop again. Managed 11 1/2weeks before switching back to NDT, Nothing has helped pain so VERY glad to hear your pain is reducing😃 We are all so different.
Thank you so much to everyone for your help and advice - I didn't expect so many replies! You all seem to really know what you're talking about. Given your advice and the fact that my blood pressure has risen since taking the T3 (I am doing self-testing and medication, as my GP wouldn't do anything to help), I will reduce my dose and see if my symptoms are still better and my blood pressure goes down.
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A friend of mine has real problems with fibro and I will get her to read this 
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