Under active thyroid

I have taking 200mc of thyroxine for around 3 years, I also have phsoritic arthritis and fibromyalgia. So it's difficult for doctors to diagnose when I'm feeling ill, which is majority of the time. I have my bloods taken every month, however it is only to check my arthritis medication, every time I disscus my medication with doctors and consultants when I tell them what my dose is of thyroxine they always comment on it been a high dose. I only have my thyroid checked yearly, even though I still feel unwell, when it is checked they say my levels within range. When I read about others regarding not been given the correct testings this worries me, as even though I was diagnosed in 2007 I was only told vey little, like one level was to high and the other to low. I am going for my bloods to be taking next week, I am going to ask to have my thyroid to be tested to. Is there anything I need to ask nurse to check, also what do I need to ask my gp when I go for results, I'd be grateful for any advice as I'm fed up feeling ill all the time.

7 Replies

  • Your arthritis is auto-immune I believe. Have you had your anti-bodies for the thyroid tested ? You may have Hashimotos - or auto-immune thyroiditis. You need to have Anti-TPO and Anti-Tg tested to confirm this.

    Having just the TSH and the FT4 tested only tells you part of the story. So INSIST on having the FT3 tested - it is the only active thyroid hormone and needed in every cell of your body. It could be that Your Fibro diagnosis is linked to a LOW T3. It was in my case ! It is important to know if it is an auto-immune issue affecting your thyroid so you can begin to think about things in a different way.

    Have you had all the usual culprits tested ? B12 - Ferritin - Folate - Iron - VitD. They need to be OPTIMAL and do not accept normal from your GP. Always ask for copies of all your blood tests - it is your legal right. You need to be able to take control and monitor your own health.

    200mcg is a good dose - but you need to know if that T4 you are taking is converting into the Active T3. T4 is a storage hormone and does very little in the body.

    I am not medically qualified - just a fellow sufferer. You can check out my edited Profile by clicking onto my name. Yes it can be a long and bumpy road - I just found this forum late in life - so lots of catching up to do :-)

  • Hi marz, thank you so very much for your reply, I'll certainly ask next week, I'll read it out to nurse, this will help me to remember what to ask, as I've a terrible memory, if you don't mind me asking what is the difference between thyroid and hasimoto, I've seen it mentioned here several times thanks ☺️

  • Hashimotos is the Auto-immune version of thyroid illness. It is the most common in the developed world. Heaven knows why anti-bodies are not automatically tested - probably due to costs :-( When you have one auto-immune condition you often have others - which is why I was checking.

    You have to be polite and firm - it is your body and you need to feel well - so insist on the tests mentioned. Are you able to pay for your test privately ?

    To the right hand side of this page there is a heading Topics - scroll down and you will see Hashimotos - Click and lots of earlier posts will appear :-)

    How is your gut ? Most inflammation in the body starts with an inflamed gut....could be good to look at your diet....Please keep asking questions and people will be only too happy to help.

  • Thanks I will look x

  • Hi, can you ask for the test results and ranges and post here?

    I've recently had a real do abd am waiting for rheum appt looking at why my joints etc have been so bad. However, I'm starting to think it's been a combo of not quite enough thyroxine while on sertraline (Sertraline alters the amount you need) and low ferritin. I've started to feel slightly better with iron tablets though my ferritin was 55 - borderline. The endo I saw said it was a little low but didn't say to try to get it up. I started iron tablets as I had terrible itching like restless leg syndrome and fibro like symptoms. The gp wanted to raise ferritin to see if it would help. I too am on wuite high levrls of thyroxine given my weight but I'm wondering if this will change as ferritin rises.

    Given you have arthritis, do you know how your iron levels are - ferritin to be precise?

    My fibro symptoms are lessening at the moment. I wasn't offucially disgnosed with fibro, endo thought it was and physio but gp thought not.

    There's a little bit around in the non-mainstream med community about t3 helping fibro, But also, iron helps body convert t4 to t3 a so could help ease fibro? Just my theory but worth investigating imo.

    It would have to be proper iron tablets though. I *think* you can buy these however over the counter, but you'd need to know your ferritin levels first.

    And what Marz says :)

  • Hi haggisplant, thank you for yr reply, I will ask for a print out when I get my bloods done. I've not asked to be honest my bloods are monitored by the hospital this is done because of my arthritis meds, I also get a phone call from my docs every time I get my bloods took as my liver reading are alway bad. I'm going to ask for my last blood results as they were took only a few weeks ago, as soon as I get them I'll post them on here, thanks so much for your advice ☺️

  • Alice, fibromyalgia is not a disease, it is a syndrome. A syndrome is a bunch of symptoms. Symptoms have to be caused by something. Given that you are hypo, yours is more than likely caused by low T3. You need to get it checked.

    Given that you are already on a highish dose of Levo (T4) with not much relief of symptoms, the odds are that you aren't converting that T4 to T3 correctly. That could be for a number of reasons, such as low iron. But it would no doubt help if you could get some T3 added to a reduced level of Levo.

    But you do need to get your vitamins and minerals checked to make sure they are all optimal. That will probably help a lot!

    Hugs, Grey

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