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A MyFibroTeam Member asked a question 💭
Westfield, MA
February 4, 2016
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Answer Summary

Members responded enthusiastically to the question about thyroid testing, with the vast majority reporting they had been tested and many... Read more

Members responded enthusiastically to the question about thyroid testing, with the vast majority reporting they had been tested and many sharing diagnoses of hypothyroidism, nodules, cysts, or Graves' disease, often managed with daily medication like Synthroid or Levothyroxine. Several members emphasized the importance of advocating for comprehensive thyroid panels beyond basic TSH tests, noting that symptoms can persist even when labs fall within normal ranges, and shared practical advice such as getting copies of lab results, seeking second opinions or endocrinologists when needed, and understanding that thyroid issues are common in women and often coexist with autoimmune conditions like fibromyalgia, lupus, and rheumatoid arthritis. A recurring theme was the overlap between thyroid and fibromyalgia symptoms, with many members describing how untreated or improperly managed thyroid conditions contributed to fatigue, weight gain, hair loss, and mood changes, and expressing relief or frustration depending on whether their doctors took their concerns seriously.

A MyFibroTeam Member

Sometimes doctors let your thyroid run high and don't tell you. They say it is normal but it is not. I have two relatives who have had repeated tests and told they were on the high side but it was OK. By the time they went to an endocrinologist and found that it is NOT OK they had gained tons of weight and had all the symptoms of low thyroid function. Symptoms on some people with hyperthyroid have the symptoms of hypothyroid. Once they were diagnosed and treated they began loosing weight and stopped loosing their hair, had more energy, the whole nine yards. I am able to just go to my GP, but that's not always the case for everyone. If you know something is wrong, don't give up till you get some answers.

February 7, 2016
A MyFibroTeam Member

@A MyFibroTeam Member. Wow, you have been through so much. I'm so very sorry. You are doing the right thing getting an attny but What a hassle for you. You are in my prayers. I hope you thyroid siuation and apartment siuation gets all straightened out. Much love and many hugs - Em xxxx

February 12, 2016
A MyFibroTeam Member

@A MyFibroTeam Member...I read your note and just wanted to share something with you. When I was having my thyroid issues...I had thyroid toxicosus (my thyroid overproduced thyroid hormones all day giving me chemically induced panic attacks) plus my endocrinologist ran me hyper thyroid. My blood pressure & heart rate were thru the roof, my organs & glands were no longer functioning correctly, I shook from head to toe, and would have a thyroid seizure (I could shake like crazy & then my body just went limp and I slowly dropped to the floor & usually had to stay there for 15 to 20 minutes). But the other thing that happened to me is I had fatty tumors, cysts, stys in my eye..all kinds of strange things like that. I have never had cysts before, the fatty tumors (it was 5 or 6) popped up in different places & grew very large very quickly, and I got a sty in my eye that swelled so large and when it finally popped, there had to be at lease 1/3 cup of junk (it scared the crap out of me). If it were me, are you seeing an endocrinologist? It may not be a bad idea...they can just do the once or twice a year check and you family can also run labs if need be. But with some of that stuff (not that it's serious) it's just a sign that you should check things out a bit just because your thyroid might be acting up on you. With thyroid, it's always good to take note of things that happen to you as a sign that your hormones may be off a bit and need to be tweeked (like being cold, overly tired, moody, pms like, fast heart rate, etc.). I always got cold (very cold) and so tired. Anyway, thought I would share as the fatty tumors may be a sign that you need to tweek your thyroid hormones. take care

March 23, 2016
A MyFibroTeam Member

@A MyFibroTeam Member, I did not catch all of your discussion but a note...It does take six weeks to realize the full effects of a change in your thyroid meds. However, you will feel a difference in how you feel sometimes in just a few days. I hope I can make this next point accurately...in the beginning, the doctors will give you a normal guess as to the hormone strength (based on your labs)...however, in the beginning the doctor may run thyroid panels and check & run them in a couple of weeks...things can be so off in the beginning and they are checking to see how you are responding & what your hormone levels are reading. However...if you have been taking thyroid hormones for a while & things are just becoming a bit off and need to be tweeked...you should take that new hormone for 6 weeks before you let a doctor run another thyroid panel. I had a doctor trying to do it every two weeks for a while...just another way to make some easy money...and I have heard others who have the same complaint. When your doctor makes a change to your meds...if you have been an ongoing patient and your doctor knows your thyroid history, they would probably tweek your meds and recheck in 6 to 12 months. That's ok to do. You need to learn your body for signs that your thyroid hormones may be off (hypo: cold, tired, kindof PMS like, and even a bit out of it; hyper: you can feel your heart racing & can't sleep, feeling tense & maybe clinching teeth...there are various signs and if you know how you body reacts...you will be your best advocate. kind regards & hoping for good days

March 22, 2016
A MyFibroTeam Member

It's true - agai., people with FM are usually suboptimal and have symptoms, even if the tests come in within range

March 8, 2016

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