New to Thyroid Help

I have had a high TSH level for the last 12 years and have been prescribed Liothyronine and Thyroxin at different times. The medication always made me feel far worse and nauseous, never any better at all, so after struggling with it for, at one point, 6 months, ,my GP agreed that I could stop taking it.

Recently I have been feeling so tired mid-afternoon that I fall asleep very quickly - like falling off a cliff not gradually. So I have started taking something called Thyroid Support together with Ocean Kelp today. I found these on Amazon. Am I doing the right thing?

10 Replies

  • Hi and Welcome :-) .... difficult to know if you are doing the right thing without seeing your results with ranges. Iodine has always been a topic of discussion on this forum and it has been mentioned that it can exacerbate problems if you have Hashimotos - the autoimmune condition of the thyroid.

    You will need to have anti-bodies tested for Hashimotos. Have you had your Famous Five tested - Iron - Ferritin - Folate - B12 - VitD. Ferritin needs to be around 80 and the rest towards the top of the range for the T4 to convert into T3...and also so you feel healthy. rT3 can make you feel poorly as can low results in the list I have mentioned.

    Taking Thyroid Support of course will not cause harm - but is it getting to the root of the problem ? How are your adrenals ? Do you have gut issues - causing mal-absorption ? There is also a liquid T4 you can take which I believe people here have found successful as sometimes it is the fillers that cause the problems.... click onto adrenals at the top ! click onto Health Conditions at the top !

    Hope you soon feel better....

  • Thank you for this. It's a bit overwhelming though. The only test results I have are as follows: Serum TSH level = 8.78 mU/L and Serum free T4 level = 12.7 pmol/L.

    Do I need to go back to my GP and ask to be tested for Iron - Ferritin - Folate - B12 - Vit D and for Hashimoto's?

  • Most people feel better with a TSH of 1 or below when on treatment. Your FT4 is also low - although you have not given ranges - just from reading others I can see it is. Labs vary so ranges are important for people to comment.

    Yes you need to go back to your GP and ask for the following :- Thyroid anti-bodies - Anti-TPO and Anti-Tg ....That test will confirm Hashimotos.

    Yes you will also need the Famous Five tested as they are NOT included in a FBC - Full Blood Count.

    Yes it is daunting - but you just need to take baby steps and keep on reading until it sinks in. We have to take control of our own health in order to be well. The Thyroid is complicated and very few Docs are able to decipher results or treat well.....

    The main Thyroid UK website is a wealth of knowledge and it is worth spending time there - it also updated so its a way of keeping up to speed.

    Hope all goes well with the Doc and you get the tests you NEED :-)

    If you want to take a peep at my Profile you will see that I have Hashimotos and that my journey has been a long one... Have learnt so much from this forum - so many people point you to the right websites/articles so you can learn for yourself. Having good information enables you to ask the right questions - leading you to even more answers....

    As you will see from the B12 website - Low Iron and B12 will also cause fatigue - many symptoms overlap....

  • Thanks very much for this really valuable advice. I will arrange to see my GP again shortly. And I wish you good health on your journey.

  • Always ask the receptionist for a print-out of your blood test results for your own records. I can never remember numbers particularly if there's a lot of them. The must have the ranges (figures in brackets) as labs differ, for some unknown reason and if you have a query you can post her for comments.

    Marz is right, we have to take a hand in getting knowledge re the Thyroid Gland and this is a link:-

  • Baby steps are important as if you try to do too much at one its difficult to work out what's working and what isn't. I've been recently supplementing with minerals and vitamins and though not perfect can see a big improvement. Keep posting as you go on your journey and plenty of help and support will be forthcoming I'm sure. Glad you have found us!

  • I have 8 years of trouble and cannot take pills .I am better on Liquid Thyroxine so perhaps you try that although you may have problem persuading theNHS to pay! It is easier and better absorbed by the body Good Luck!

  • There is no subsstitute for levithyroxine, as I am aware, if you have hypothyroidism your doctor should not have allowed you to stop taking this. Maybe you were on the wrong dosage. It has to be measured and monitored so carefully. Don't buy anything off amazon, you are feeling tired because you need thyroxine.

    I have had this condition since birth and feel sick if I'm on the wrong dosage. You need to find another doctor for a second opinion.

  • I have an under active thyroid

    I take tablets the doctors give me. Just watch what you eat, the right diet you should be ok

    Don't get them online, you don't know if they are safe.

  • Hi Wakcor, it certainly is overwhelming, and unfortunately the medical profession seems to be too stressed to analyze each patient and come up with any treatment other than thyroxine. There is resistance to testing free T3 which would give important diagnostic evidence. They refuse to do a saliva test for adrenals which might indicate your adrenal function and may be the reason your thyroid hormones fail you. Many posters find themselves here seeking answers.

    But it may not be wise to take supplements until you have a better idea of what you need. I think you could safely take B vitamins with extra B12, vitamin C, magnesium and vitamin D3. It's likely your are deficient and overdosing would be unlikely. Some people have found a gluten free diet very helpful.

    The website Marz posted (STTM) is very educational and easy to understand. You can find many topics. I am also going to post a short video by a functional neurologist and this will give you an idea of the interconnections of many hormones but don't be discouraged. Knowledge really is power.

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