Feeling confused 🤔

How have I only discovered this website?

I'm 34 and have been suffering with an interactive thyroid since having my daughter almost 17 years ago. I was put on levothyroixine. Only a small dose 25

I was young and internet wasn't really available. The doctors didn't give me any information on it so I didn't really understand how important it was to take everyday until about 7 years ago. I was booked into a private hospital to have my kidney removed and the nurse asked if I had brought my levothyroixine with me and I said no I don't really take it. She kind of frowned and said you must take this medication every day but didn't say anything else on it. She just made sure I took it every day in hospital

So after that I was taking it and having regular blood tests and they kept upping the dose but even still I didn't realise how important it was. One night about 4 years ago I was in a club and I got talking to a random guy who had suffered most of his life with his thyroid. Well.... this man taught me more about my condition in 2 hours than my doctor did in all those years. So all those years of suffering just because I wasn't educated enough and wasn't told how important it was to take the medication!!

They still haven't stabilised it and I'm now on 250 every day. The past 3 weeks I've felt terrible. Depressed, extremely tired, can't lose any weight, cramps in my legs, dry skin, always feeling cold. This is how I used to feel when my dose wasn't high enough

I've got to have another blood test on Monday and my gp said they'll probably up my dose again

I always thought that 250 was the maximum and that was classed as full replacement

So just when I thought I had it nailed and understood it all I'm now back to square one and quite confused

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1 Reply

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  • First thing is do you have any actual blood test results? If not you need to get hold of them. You are entitled under data protection laws.

    You may be able to view test results online - ring and ask about this. If you can then apply for online access to your account. All GP practices are supposed to offer this, in reality very few have blood test results available online.

    If not then ask for print out of recent tests. Pick up in a day or two. They may make a nominal charge for paper.

    You need to know results for TSH, FT4 and FT3. Do you also have high thyroid antibodies? You need to know. Did GP test these? If not ask that they are tested.

    If antibodies are high this is Hashimoto's, (also known as autoimmune thyroid disease). About 90% of hypothyroidism in UK is due to Hashimoto's.

    Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

    You high dose suggests malabsorption and so likely Hashimoto's

    Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. Important to test these. If they are too low they stop Thyroid hormones working. Have these been tested, if not ask that they are. Always get actual results and ranges.

    If you can't get full thyroid and vitamin testing from GP

    thyroiduk.org.uk/tuk/testin...

    Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

    All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after.

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