How do I find out what is going on with my thyroid?

I have been on levothyroxine for about 15 years now, and just accepted that doctors knew what they were doing. I have never felt entirely well since I was first diagnosed, and have repeatedly been backward and forward to the doctors complaining about aches and pains, disturbed sleep and a general inability to cope with day to day life at my worst. I have NEVER had my underactive thyroid explained to me.

I have been going to Slimming World to lose weight, and was doing so a bit slower than others, but it was working.

All of a sudden, a weight gain, hair loss, dry skin.... the whole lot.

I went for a blood test and was told my TSH was 0.9 and my levothyroxine was to be reduced.

This was the point at which I started to search online for help and advice. I have been bombarded with information on TSH levels, T3 and T4, Hashimotos and adrenal fatigue, and to be honest I have no idea what all these things are or whether I have them or not.

I see that a low TSH means heading toward hyper, but how can I be hyper when I have all the symptoms of hypo and always have? Will the reduced dosage of levothyroxine mean I will put on tons of weight? Will I ache and pain and feel even more fatigued than I already do?

AND.... please, can anyone suggest what I do now? Thank you

6 Replies

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  • Having suffered many of your symptoms in the past - may I suggest you have a full thyroid profile tested. TSH FT4 FT3 Anti-TPO Anti-TG. These are crucial and basic. There is a resistance to testing FT3 due to cost - but you NEED to know if the T4 tablet you are taking is converting into the ATIVE T3. Every cell in your body needs T3. When you post the results - do not forget the ranges - and ask the Doc for your results to keep.

    There is excellent information on the Thyroid UK website - explaining the tests required - also all the vitamins and minerals that are so crucial to thyroid health. Have a good read and it will help you to understand more. If your Doc refuses to test the T3 then I would consider having it done privately.

    If you have read any of my posts - you may have noticed that gut health is so important in removing mysterious ailments from our bodies. Gluten is the culprit in everything - from heart - brain - gut - endocrine and anything else in between. So healing the gut has to be number ONE. I was diagnosed with Crohns some 40 years ago and after endless surgical interventions in my 20's and 30's I am now a much healthier person. It has been a long journey - and no quick fix is available....Hashimotos diagnosed only in 2005.

    Stick with this forum - follow the advice - and you will soon be well.....

  • Thank you for responding so quickly. I am going to need to write all this down so that I know what I am actually talking about! I will make an appointment with my doctor and ask him about T3 etc. If he refuses to listen, I would consider saving up and having it done privately. If my T3 levels are low, how would I then go about medicating for this if my doctor doesn't want to know?

    I will need to see what foods contain gluten. I only eat bread about once a month, but I do have Weetabix every morning!!

  • It's not just about gluten- also wheat [hybridised in last 2000 years only] which in a compromised gut can leach through molecules into the bloodstream directly.

    These then can act like hormones in the vulnerable ie: IBS ,Crohns ,Diverticular Disease etc.as well as those with struggling, but still working, thyroids.

    Oats are a better option and Gluten Free just like ordinary, but costs more. You do need fibre uptake to be maintained.

    PRE biotics are far more use than PRO as they are not killed off by pasteurisation.

    You are obviously a fighter and with application can beat this illness [and 'the system' if needed]! :)

  • I have been where you are with low TSH and high Free T4 but under the reference range Free T3. It means you have lots of T4 rushing around in your blood stream, not converting and so your pituitary senses this and does not send out the message for more, hence a low TSH and probably, when you get it checked, a below range Free T3. You may need to see an endo to get T3 prescribed. I went privately but my GP practice now gives it me on the NHS. For how much longer, I am not sure. I think the writing us on the wall for us obtaining T3 this way.

    You should also perhaps get your iron checked. I had a fight about that but got it done eventually and was found to be anaemic. This makes it hard for T4/3 conversion to take place. I am now on a supplement. Whilst asking, it would be useful to ask also for a full iron panel, ferritin, B12, Folate and Vit D. All can be low in us, when we have been on Levo for a long time. I hope you start to feel better soon. x

  • Unfortunately, many doctors know very little about how best to treat thyroid gland problems

    Get a copy of your latest blood tests with the ranges and post here (or on a new question if you don't have them to hand). You are entitled to a copy of all your blood tests and keep a copy for your own records.

    Doctors have no right to reduce your medication due to the TSH alone, it can make you feel worse as they haven't taken into account your clinical symptoms.Go to the date July 15, 2006 and read the question. There are also other topics at the top of the page which can give you helpful information.:-

    web.archive.org/web/2010103...

  • Thank you all for being so helpful. I followed that link and something there really jumped out at me.

    "From partially depriving the people of sleep, their TSH levels significantly increased and remained elevated throughout the following day."

    I wake every night, four or five times a night that I am aware of ( and then have to get up and wee!!). It makes me wonder if my TSH levels were low when I had my blood test simply because I may have had a night's sleep?

    I have never had a copy of my blood tests, but I intend to ask now! I am going to make an appointment with my doctor for next week and ask for an explanation of his decision, and how he can justify it.

    I have also taken on board the gluten question, and the Weetabix will be replaced with porridge. I eat loads of pasta, but will replace it with either gluten free pasta or I will eat rice and potatoes. It is all worth a try.

    I don't eat meat, but I do eat fish so get my protein from that along with Quorn products and eggs.

    This decision by my doctor has actually flung me into a depressive state and I have cried for two days. I have spent a fortune in fees, and struggled to lose nearly 3 stone, and this is how I am paid back for trying to look after my own health.

    The more I read about this, the more I think that doctors just want us out of their hair. Is it just that we get free prescriptions and they don't want us to cost more?

    I am so glad I found this site :-)

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