A friend has recently been diagnosed with Fibromyalgia. I have read a lot about that condition being diagnosed when the patient actually has hypothyroidism.
Is there a way to rule out Hashi's? I know that an antibody test won't be conclusive unless they are high, because I (and many others) have never had raised antibodies with their disease.
Likewise, a high TSH would be indicative, but one "in range" may or may not rule a thyroid condition out.
From this very informative board, I know what parts of the range are usually optimal, but only for those on thyroid meds. My friend said that her doctor ruled out a thyroid problem, but I don't know if she had FT4 and FT3 tested as well, and what those values were. If he only did antibodies and TSH, and those were normal, we'd be back to square one and not know if she was hypothyroid and didn't have fibromyalgia. If she also has numbers for FT4 and FT3, what would bad numbers look like for someone not on thyroid meds like me? If I can get her to share her results with me, and/or get some private tests to cover all thyroid results (she has lalready had vitamins checked), could we see Hashi's if it was there?
I hope that I've made clear what I'm trying to ask. 🙁
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The only way to diagnose Hashi's is by testing TPO and Tg antibodies - both of them - and/or having an ultrasound of the thyroid when there's enough damage to be visible. You cannot diagnose Hashi's from the TSH nor from nutrient results. Nutrients could be low due to hypothyroidism, but hypothyroidism isn't necessarily caused by Hashi's. There are many other possible causes.
What's more, just relying on TSH testing isn't going to tell you much, either. It could be that the person has a pituitary or hypothalamus problem - Central Hypo - and whilst the TSH might look good, the FT4/3 could be low.
So, what she needs is full thyroid testing, and if antibodies are within range, an ultrasound.
Fibromyalgia is a syndrom, not a disease. You cannot 'diagnose' someone with a syndrome. A syndrom is a collection of symptoms. Symptoms have to be caused by something. And, it's very often a thyroid condition of some sort. But, could be due to something else. The doctors job is supposed to be finding out what is causing symptoms, not dishing out dubious dustbin diagnoses. This doctor is not doing his job.
Hardly surprising that the doctor isn't doing his job.
My antibodies were below range and my ultrasound normal when I was first diagnosed with hypothyroidism back in 2020 by an endo (diagnosed as subclinical by GPin 2017). I have not had either tested again since then, so don't know if either has changed.
I get that the TSH alone won't help, but are you also saying that the FT4 and FT3 numbers won't help either?
And about "diagnosed" vs. "having a syndrome", I may have misspoke. She told me that her doctor told her that she had fibromyalgia, and it was me who wrote here that she said she was diagnosed. Sorry about that. 🙁
I get that the TSH alone won't help, but are you also saying that the FT4 and FT3 numbers won't help either?
Ummm... I don't think I said that. Nor anything that sounds like that. I was saying that she needs to know what her FT4/3 numbers are, and interpret them in conjunction with each other. One result in isolation does not a summer make - please excuse the mixed metaphores!
The NHS does not tend to test antibodies more than once. That is because they do know understand antibodies nor the importance of know if you have Hashi's. But, could be that you just don't have Hashi's and are hypo for some other reason. If you want to, you could have them done privately.
Whether the doctor 'diagnosed' or just said she has Fibro doesn't really matter, it's still a way of fobbing patients off and consigning them to the dustbin, never to be taken seriously again! It ought to be against the law!
But, as greygoose has already said full thyroid testing is the way to go.
FM may or may not be a symptom of thyroid disease....many thyroid patients, myself included, have at sometime been diagnosed with FM, CFS and other syndromes. Not helpful!
If your friend is happy to pursue this then suggest she joins the forum and posts her results for advice.
Thanks, DippyDame. I just replied to greygoose, to see if FT4 and FT3 will be helpful, since I don't have any idea how to interpret those numbers if a patient isn't already on thyroid meds.
I will try to bring this up with my friend, but through past experiences, not many people believe that doctors can be wrong, and if you persist in that kind of conversation, they often think that you're some kind of conspiracy theorist, lol. I will approach this carefully with her, and maybe one day, she'll join us here.
Dr Lowe's work helped me join up the dots after I'd been diagnosed with hypothyroidism, FM and CFS. I then discovered that I have a form of Thyroid Hormone Resistance and need a supraphysiological dose of T3 to function
Cellular T3 is key...but this escapes most medics!
Great that you were eventually able to figure things out for yourself. I think that I'm going to discuss all of this with my friend (thanks for the article above!), and give her links to read. On the one hand, I'd hate for her to continue suffering, but on the other, I'd hate for her to try something that could jeopardise her health, and feel responsible for it.
A very simplistic way of advising your friend might be to advise that TSH over 3 or 4 should be checked by a retest a month or so later, and if still that high she should investigate hypothyroidism. I’d add that a GP is likely to say such a result is ‘fine’, ‘borderline’ or ‘Subclinical’.
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