Hi everyone! Im new here, and i just came across this site so i decided to see if someone can help us understand my sister's condition, which unfortunately get worse each and every day. Unfortunately the doctors at her Gp seems not to care or help :(. Unfortunately Her thyroid was been removed more than 10 years ago and she's now on levothyroxine 400mg everyday. After many blood tests she has been doing, her doctor called her today that they can't find the medicine in her system and she has no iron in her body so they need to increase the levothyroxine to 500mg which confuses us, because anytime she does blood test, the results states that everything is fine but Her symptoms get worsen each and every day, at the point that she needed to remove her wedding ring as she could feel pains in her bones.
Please if anyone has similar condition or have any knowledge about it, we will really appreciate your advise and help.
Thanks in advance
Written by
Linam2019
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Sounds a bit strange. I haven’t come across anything like this before but I think if it was my sister I’d be asking to have copies of all of her thyroid blood test results (and her iron results).
She’s entitled to have them—that’s a legal right, so don’t let anyone tell you otherwise.
Then I think I’d maybe post them here for comment.
Unfortunately, doctors can be very uneducated in thyroid issues—they’re taught it’s simple and don’t get a lot of training on how it really works. It’s not their fault—many times thyroid patients are easy to treat but there’s a core of patients whose hypothyroidism is trickier to treat.
Sometimes patients who no longer have a thyroid need an additional thyroid hormone called liothyronine. Many doctors avoid prescribing it because it’s expensive (it shouldn’t be but that’s a longer story) but some people just don’t get well without it.
But start with getting hold of the blood tests and posting the results here. We’re not doctors but there are people here who have enormous expertise in interpreting what they say.
It is essential that the results include reference intervals (also called reference ranges, normal ranges or various other things).
The number of people who really need 500 micrograms of levothyroxine is tiny. And if she does, she should be seen by an endocrinologist who is an expert in thyroid issues. (Not a generalist who mainly deals with diabetes and sex hormones.)
Alright I will let her know. Thanks again for your advice . Can you please advice us of any specialist centre ? we currently live in Milton Keynes thanks
You can only be referred to an NHS consultant by a GP - so bear in mind that the GP may not agree to it and the endo can refuse to see you. It's different if you go private ... You don't need to see the nearest person to you, but must obv be reasonably convenient.
You will get the most from a private endo appointment if you have a recent FULL set of thyroid blood tests - ie TSH, free T4, free T, thyroid antibodies, and key nnutrients - ferritin folate, vit D nd B12. Have an early morning, fasting blood test with a 24 hour gap from taking previous dose of levo (take the next levo straight after the blood test). You will see lots of posts here about private testing - some discounts are available on the Thyroid UK site and onThursdays.
In addition to getting the list of endo's helvella mentioned, its also worth googling the hospitals reasonably local to you and seeing if any mention thyroid in their thumbnail biogs - you will see that the VAST majority are focused on diabetes.
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