Thyroid UK

A bit about me

Hi everyone,

I'm new to this site, and so far I'm glad I found it. There appears to be some very knowlegable people using the site, and some of the info has been a real eye opener.

I was diagnosed with hypothyroidism in Aug 17 (aged 37) This was after months of doctors appointments. My father, who also suffers with the same condition, suggested I ask my doctor for a specific thyroid check. I'm on levothyroxine 50mcg. My follow up blood tests and endocrinologist appointments have been positive. I still don't feel 100%, and that's lead me to this site in the search for more answers.

I still have days where I have 'brain fog/confusion'. I still occasionally have bowel troubles. I have the worst mood swings. I used to be such a positive person who leapt out of bed in the morning, now sometimes I can barely drag myself out.

I'm open to any advice (you guys seem to know so much more than me), and I'd also be glad to hear from people who are suffering from similar symptoms. (It'd be good to know I'm not alone).

Thanks for taking the time to read my post, and thanks in advance for any replies.

8 Replies
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Was 50mcg your starter dose in August?

Did you have a follow up test 6-8 weeks after starting Levo?

It's normal to retest 6-8 weeks after starting, increase in dose, retest after another 6-8 weeks, increase, repeat until symptoms abate and you feel well. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges if that is where you feel well.

Have you had thyroid antibodies tested?

Have you had vitamins and minerals tested - Vit D, B12, folate and ferritin?

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Hi Susie, 50mcg was my starting dose. I was retested, the doctor wasn't completely convinced so he asked me to continue on the levothyroxine and be retested again, these results came in just in time for my endocrinologist appointment. He has told me to continue with the 50mcg which i have done (I've forgotten to take my medicine once). I've been given a number via my doctor to arrange counselling to do with emotions. I forgot to mention above that from time to time I can be watching tv and out of nowhere I'll start welling up. This can happen when I'm watching the news or football, and it happens with no good reason.

I haven't had any other tests carried out other than blood tests that I was told to attend. I've read that I should be able to request my results from my doctor.

Reply

Yes indeed, if you are in the UK then the Data Protection Act legally entitles you to your results. Pop along to the surgery and ask for a print out - don't accept verbal or hand written results (mistakes can be made by people who don't understand them), make sure it's a print out and includes the reference ranges eg

TSH: 2.5 (0.2-4.2)

Some surgeries charge for paper and ink but it shouldn't be more than say 50p to cover costs (my surgery doesn't charge). If they want to charge a silly amount then ask to look at the screen and take a photo.

Once you have the results, post them on the forum for further comments.

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I am in the UK, I'll do that this week, thanks for the advice.

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Hi Steve I’m hyper so the flip side but I get very emotional - some days I cry for ages. It’s all very strange but I’m realising it’s my thyroid and Graves’ disease. Also for me accepting this condition is hard too. You’ll get lots of support on here though x

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It's a huge learning curve for me at the moment. I feel that I'm underinformed on the subject. I'm not blaming anyone imparticular, but the lack of advice that I've received is worrying. This is a lifelong condition that can have so many implications on a persons health, I feel like I should have been made more aware of what I am dealing with. Thanks for the support, I hope you find some answers too.

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Yes I agree you are kind of left. I felt exactly the same, I was told ok this is what wrong, take these meds and thee you go. Best advice I’ve been given is learn to rest and listen to your body because when you do too much it will tell you x

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I agree too - I was diagnosed hyper 2 1/2 years ago. Was told take these tablets - told GP I felt very tired, drained, not eating etc. - was told 'of course you feel ill with thyroid problems' ! Had to have camera down the throat and was told may be coeliac - had to have a blood test which confirmed it despite never ever having any symptoms - this woman used to make and eat her own bread !!! Saw endocrynologist later who in between texting on his phone said I needed to have the thyroid out !! No alternative treatment offered. Last year was I was told via telephone call from GP I'd got Sjogrens syndrome - I'd mentioned to them that sometimes I choked on my food. When asked what it was she just said it was dry mouth. Saw rheumatologist last month and he was amazed that it wasn't explained how dangerous it was to me especially now that I have dry eyes too. If you read everything here you will come to realise that you will know more than the doctors and you will be left to treat yourself and have to badger them to do tests !! But your not on your own here !! Don't lose hope - you can work through it.

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