Looking for help as feeling desperate to feel better!

Hello, I'm a newbie on here so please bear with me.

I started on a very small dose of Thyroxine 25mg back in September, after my bloods came back as TSH 8.25. (Previous bloods are Oct TSH 4.6, Nov TSH 3.71, March TSH 1.81. I went back to the gp on Friday as all my symptoms have come back, so he requested new bloods to be done. I have had the results back this morning to find that my TSH is now 1.51 and F4 is 17.7. Why do I want to sleep all day, be awake all night, struggle walking, banging headache and generally feeling ill.

Can your F4 make you feel ill at 17.7? (raised from 16.8 to 17.7 in 4 months)

Can anyone help me as this is causing so much of an effect on my life.

15 Replies

  • Ranges please.

  • TFS 1.51 (0.35-5.00)

    Free T4 17.7 (11.00-23.00)

    Thanks bluebug

  • Suggest you ask politely GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones to work in our cells.

    Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's, the most common cause of being hypo. NHS rarely checks TPO and almost never checks TG.

    Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online, but all should be doing this with couple of years.

    When you get results suggest you make a new post on here and members can offer advise on any vitamin supplements needed

    If you can not get GP to do these tests, then like many of us, you can get them done privately


    Blue Horizon - Thyroid plus eleven tests all these.

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later. Usual advice on this test, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) don't take Levo in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible.

    If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

    Assume you know that Levo generally should be taken on empty stomach and no food or drink for at least hour after. Many take on waking, some prefer bedtime, either as more convenient or perhaps more effective. No other medications at same time, especially iron or magnesium, these must be at least 4 hours away

    Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here, lots of information and advice about importance of B12, folate, ferritin and vitamin D.

  • My gp is referring me to see a Rheumatologist as the pain in my joints are so bad. I'm 34 and feel like I'm in my 70's. My quality of like has taken a massive beating and its now becoming harder and harder to drag my backside out of bed every day. My gp did test my kidneys, iron and for arthritis and they came back "fine".

    He did mention that my cholesterol needed testing and also that my thyroxine could be reversing itself??? What could that mean?

    Thank you for your reply's!

  • Does your family has a history of heart disease and/or strokes and are mostly non-smokers? If not you don't need your cholesterol testing.

    Otherwise it will be raised, but all that is an indication of is that your hypothyroidism is insufficiently medicated. If you go over to the main thyroiduk.org.uk website there is information about raised cholesterol levels and hypothyroidism.

  • Please get a copy of your test results with the ranges for your kidneys and iron. As fine just means they are in range. Also some nasty GPs (and I've had one) will say your blood results are fine when you are below range as they don't understand the long term problems being nutrient deficiency.

    Then start a new post with the ranges.

  • Are you still on only 25mcg levo?

  • Sure am. He said about raising it but I wanted to see what the bloods came back first.

    Regards Christine

  • Good grief! No wonder you feel so terrible.

    When people take thyroid hormones it affects their own production of thyroid hormone. A tiny dose of 25mcg may actually reduce your own production of thyroid hormone by more than 25mcg. So you could end up having less thyroid hormone than you had before you started.

    If you are elderly, and/or frail, and/or have a heart condition, it is normal practice to start people on 25mcg levo per day. All others should be started on 50mcg levo per day. Blood tests should be done every 6 weeks, and levo increased until TSH is around 1 (ish). In an ideal world you would have Free T4 and Free T3 measured as well. The thing that gives people symptoms is not the high TSH, but low Free T3, but doctors only usually look at TSH.

  • So with TSH at 1.51 and Free 4 at 17.7 I may not be on enough thyroxine? Thank you for your reply!

  • You should have grabbed the offer of a raise in dose with both hands!

  • Ha ha. It's become a daily struggle feeling so I'll all the time. I'll definitely push for the increase in dose. I'll keep you posted!

  • You don't know what your T3 level is and that is the active hormone that makes our metabolism work. It may be that even with a good level of T4 and an ok TSH that your T3 is low if you have a conversion problem.

    An increase in T4 might push up the T3 level so keep an eye on symptoms.

    Hope you feel better soon.

  • Thank you.

    As mentioned before my body doesn't feel like my own. Roll on Friday when I meet up with the gp!

  • Good luck for Friday!

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