I have been trying to find some more information on fibromyalgia, and hypothyroidism. I have myxoedemic legs which are big legs from the knee to the ankle. It’s not oedema, or normal fat otherwise the swelling would go to my toes.
Recently I have been on a diet and lost 11 kilos but still I have big legs. I asked my doctor to yet again do my levels T3,T4 and Free T3,Free T4, and each time the test comes back normal. So although I have normal thyroid levels I have symptoms that tell me that I have hypothyroidism because of my myxoedemic legs and cold hands and feet.
There was a paper written just recently on this topic but I can’t find it, anyone got any ideas for me to take to my next doctors appointment?
In the past I have taken Lugols iodine but I was wanting to go along the traditional route and get some meds from my doctor. Barb
My first thought is that most doctors just look at a patient's lab values and treat according to those parameters. This is unfortunate because a lot of patients who truly have thyroid problems fall through the cracks. I was one, others I know were too. Ask your doctor if he would put you on a trial of thyroid replacement hormone to see if the leg swelling susbsides. If it does, then you know that you need to be on the replacement hormone.
This is a good article that supports what I have just stated.
Well an interesting question because no it made no difference to my legs at all!!!
I just felt better because I was doing something. It doesn’t make much sense I know but that is one of the reasons that I wanted some thyroxine or something similar.
Thank you for responding to my issues, I will have a look at the various recommended sites now and get back to you. Thanks Barb
Thanks for that reference. I am not concerned with the appearance it is more that I have an undiagnosed thyroid problem that is not being treated. I have to say that I have had it on my legs since 2005. So the issue isn’t urgent but just frustrating!
I do have some eye issues so I will now just go and look that up because evidently myxoedema and eye pathology go together. I’m afraid the doctors here have not been of much use with this or fibromyalgia, but given my background if I work out what is wrong and inform them well they will
order the test or give me a prescription. So it’s up to me to work it out!!!
Hi y’all , I have had my thyroid checked so many times its not even funny, every time normal… My mother had thyroid cancer… And I have every symptom of thyroid disease… I decided I’m going back to the endocrinologist I saw 7 years ago when my hair started to fall out … It’s 80 degrees out and my hands & feet are still cold.
Even when my mom had thyroid CA, her levels were normal… It was her calcitonin level that was off.
Ok that reference was very helpful and I will print it out and take it to my next doctors visit. This gives me something to work with and your question is perfect, I will ask him to put me on a trial thyroid replacement and see if my big legs are addressed. many thanks much appreciated Barb
Wow it is interesting just how useless the thyroid tests are. I think that in part the problem is the emphasis that doctors have on evidenced based practice. They mistakenly think that it means that the tests must be positive, whereas the Cochrane Foundation concerned with evidenced based practice also takes into account signs and symptoms. In other words they threw the baby out with the bath water.I hope we both get some treatment for our conditions. Cheers Barb
Sounds like you need to take charge of the next doctors appointment and get some more tests done. it’s interesting that so many of us have this issue. Cheers and Good Luck Barb
I was looking up some information on iodine supplementation to see if it was safe to take if you a on thyroid replacement hormone. My doctor recently wanted me to take iodine, but something told me not to take it unless I was tested further.
Anyway, I came across this information that I thought I would share with you.
That’s very interesting, thank you. It was a GP who actually prescribed the Lugols iodine for me!!
I had wondered at the back of my mind about the connection with the adrenals and for that matter the pituitary after all they are all linked.It looks like I will have to get some further tests done and does explain why I still have my big legs!!
Maybe I should not be in such a hurry to get some thyroid supplements! There is so much about so many conditions that none of us know anything about, I just wish that doctors would Practise in that way rather than the God like authority that they seem to prefer. Anyway thank you very much for the reference I will study it some more and give it some more thought, I am a bit slow these days and take it to my GP maybe between us we can come up with some answers, Although it may already be too late and I may not be able to fix my legs. I think that the whole body but particularly the endocrine system works on a feedback mechanism and I wouldn’t be a bit surprise dto find out that the issues is in the adrenals or pituitary. Thanks again Barb
You're are so welcome. I've come to feel that "when in doubt, do nothing" these days is the safest approach. Then research everything before proceeding. I can't really bring myself to just automatically follow the doctor's advice without doing that first. I've been burned too many times. After all, we are the ones who have to live with the consequences in the end.
Yes the hormone producing organs are intermingled and when one goes down, they all get goofed up.
I've been suffering for fifteen years and just recently had to be the one to push for lyme testing. My results were positive for Lyme and co-infection. If I hadn't followed my own feelings, I would never have found out. My doctor didn't think I had it.
Don't give up on your legs, the cause may still be discovered. Keep me posted so I can investigate along with you. I don't know if I've had those tests mentioned for hashimoto's but I'll be asking about them for sure next doctor visit.