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Hi.

I was diagnosed with an underactive thyroid earlier this year and have sought support because I am really struggling.

After a few months of blood tests and increased levothyroxine doses, my doctor confirmed my thyroid function was in the healthy range. This was the same 6 weeks later (a few weeks ago). The thing is, I feel dreadful.

I have a doctors appointment this coming week and I am worried I will be 'dismissed' again, like I felt last time I went and said I didn't feel any better (the doctor saying my function was fine now).

I am constantly tired. I ache in places I feel too young to ache in (constant lower back pain, hip pain, elbow pain) and feel drained. I get waves of dizziness, even when sitting, and it feels like I have a constant lump in my throat. If remotely anxious, my voice sounds crackly which it's never done before and like I am swallowing a ball of cement - not that I know but I can imagine lol). Also, I just don't recognise myself anymore; I feel snappy one minute and happy the next and I feel paranoid all the time.

I don't know if this is all related; I have seen the looooong list of symptoms and knows most of these are listed. However, I'm still feeling none the wiser and want to educate myself on this medical matter to help myself (as I don't feel 'heard' with my GP). It may also be impacting me the fact me and my husband were trying for a baby (which is how I was diagnosed).

Any advice would be great; other than being supportive I am not sure what help I can be to others, being so new. But I will try :-) xx

10 Replies

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  • Hello and welcome.

    Your first step is to go to your GP surgery and ask for a copy of your latest blood tests with the ranges. This is your right under the Data Protection Act 1998. If your tests are under 40 days old you they will either be free or cost a few pence. You may be given a print out immediately or may have to wait a few days for them print out.

    Once you get the print out come back on here and start a new thread. In the thread put the test name, result and range like in the example below for example:

    TSH 3 (0.35- 5.5)

    FT4 12 (11- 26)

    Then posters will comment on whether you are under medicated or not.

    In addition it is worth getting your vitamin D, vitamin B12, ferritin and folate tested. Most people with thyroid issues are low in one or more of these. If your GP refuses to do them then you should do them privately. Go to thyroiduk.org.uk

    and look under private testing. You want the Blue Horizon plus 11 pin prick test.

    Also while you are looking at testing I suggest you read the entire site. ThyroidUK is a recognised charity on the NHS Choices website therefore if you find anything which supports your request to have the tests done on the NHS I suggest you print it out and show the GP.

  • Thank you x

  • hi welcome to the forum!

    The absolute first thing you must do is get copies of your results. it's your legal right to have a copy under the Data Protection Act. You need to see exactly what was tested, and what the results were. Doctors know very little about thyroid, so you really can't trust them when they tell you that you're 'fine'. They have no idea whether you're 'fine' or not!

    For example, your doctor telling you that your 'thyroid function' is now 'fine'. Of course it isn't! If it were, you wouldn't be taking levo! Some doctors seem to think that levo 'treat's the gland, and makes it work again. It doesn't. It just replaces the hormone that your gland can no-longer make. And your poor gland with never function correctly again. How much levo are you taking?

    So, get your results, and post them on here, and let's see what the situation is. Don't forget the ranges! OK? :)

  • Thank you x

  • I would definitely advise the Vit D test as well. I had all the dreadful aches you describe when I had a severe Vit D deficiency. All sorted once I got my Vit D levels back to where they should have been. x

  • I had a similar story to tell. All was apparently fine, but nobody tested my T3. The standard medication, Levothyroxine is a form of T4, and it relies in the body converting that to the active form, T3. It eventually turned out that I can't convert, even though all the other things suggested above were good.

    I was given T3, liothyronine. But unfortunately I had a very severe reaction to it. Luckily I am fine on NDT or natural dedicated thyroud which also contains T3.

  • As well as going with the advice above I would get a test for antibodies. Blue Horizon finger prick test will do 11 tests and you can get a Vit D test via City hospital. Both respond very quickly sending kits and results quickly. Tests should be early in morning and you shouldn't eat breakfast, have only water to drink. Don't take any mediaction (for thyroid) 24 hours before test, take it after. This applies to both finger pricka nd venous tests.

    If you are positive for antibodies then it would be a good idea to try a gluten free diet. I'm afraid it is a very steep learning curve trying to get to grips with your thyroid "health" but people on this site will give you lots of good and helpful advice. It has helped me a lot. I have learned a lot but it has taken me 3 years to fully understand what my particular issue is.

    I started off "just hypo" went on to levo, then issues with manufacturers inability to produce correct dose. Just as I seemed to get back to something resembling normal I developed antibodies. Don't be fobbed off if they say you don't need to worry about them!! That's when I went GF and also lactofree and things improved again. Next step is to check if I am converting properly T4 to T3!

    Hope you soon get some answers and don't be afraid to keep coming back and asking questions.

  • I agree with the other comments here - If you were "fine" you would not be on thyroxine T4 - your thyroid needs help as it is not producing enough of the hormone. These hormones are mighty powerful and do a lot of work for your body. You also might need to be check for anaemia and B12 deficiency. You need to have the correct levels for these, especially if trying for a baby. I would go back and ask to be retested again and also for your ferritin and folate levels to be checked. If still not happy by the response of your GP, get a second opinion. You are within your rights to do this and if you are struggling, this can course problems with fertility too. You want to be healthy for when you do get pregnant and during the pregnancy for both you and your baby. Are you due to see a gyne at all? If so, ask them to get your bloods checked and tell them the problems you are having, mine did and my thyroid was out of kilter, I was then referred to a Endo who was brilliant at the time and not only did she sort my thyroid levels out, but I also got pregnant quite quickly after that. Best of luck and let us know how you get on :)

  • All. Thanks for so many helpful replies. It's been 1) helpful and 2) comforting that this isn't 'just me'.

    I've just been to the doctors and saw a GP I am assuming is new as never heard of her. What a breath of fresh air! I almost cried with relief.

    I'd taken a typed summary of my symptoms over the last couple of months which she sat and read properly. She then informed me that they've only been testing my TSH levels as 90% this is enough. She said that the other 10% often go under the radar and 'fobbed off' by doctors. She apologised for that and said she would always rather do a full set of tests before dismissing it as 'it must be somethings else as the normal tests are ok'. She also talked through my fertility issues and has scheduled me in for a 9am set of tests on Monday as this will, all being well, fall into my 1-5 day start of period window to test that at the same time. She's testing my TSH, T4, T3, iron, blood sugars, testosterone / oestrogen and for signs of coeliac disease. Plus things I can't event remember.

    Obviously, I don't want bad news but it'll be good to know what's going on to work from. Not half a craic. She also says she's not one to not up my levothyroxine dose if I feel poo just because blood results say it's ok.

    Thanks again. When I get to grips with this illness myself I hope to be useful to others.

    P.S. Also ordered two books off Amazon that arrived today.

  • I am so pleased TP_7 you got a GP that listened and willing to do all the tests. All the best and let us know how you got/get on. :) Take care :)

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