Advice

I'm looking for some advice, I'm

Hypothyroid have been 13 yrs been on alt 150/175 mcg levothyroxine for about 12 of those years

I feel rubbish extreme fatigue depressed weight gain despite eating well and exercise joint aches and pains memory issues, as I work shifts including nights gp told me to accept that this is how I will feel ! Asked GP about t3 medication she told me in my area this is what's (levothyroxine )prescribed so accept it,

Thinking of paying to see a private endocrinologist

I also have high thyroid perioxidase levels 269

Free t4 24.6

Tsh 0.46

Any advice:(

13 Replies

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  • Have you the ranges for your results? As they differ from lab to lab it's a bit of guess work.

    A FT3 reading would be most helpful and it's annoying that labs and many doctors don't realise this. FT4 reading looks very high but that could be for two very different readings and my comment re FT3. You could be over medicated in which case your FT3 could possible be over range and too much can feel as bad as too little. But you could not be converting well in which case your FT3 would be low and again would explain why you feel rubbish. I favour the not converting well but it's not safe to say that's the case. You really need the full results and an endo should do that but again no guarantee from some of the posts I've read.

    Something your doctor should test though and will help your thyroid and general well being is to test Vit D, B12, folate and ferritin. I increased my conversion to almost perfect by supplementing when I saw the results from this. It's worth asking if your doctor requested FT3 reading and the lab refused or whether he/she didn't think it important.

    I don't have antibodies but may be that is another reason for your readings, I don't know. You can always have the tests done yourself but I appreciate you may not be in a position to do that and again there is no guarantee your GP will accept them or understand them.

  • Thank you will try to get a t3 reading as well and ranges but defiantly going to get a private endo

  • Sounds like low b12 and possible pernicous aneamia is why and that your GP needs to order Intrinsic Factor etc

    high Antibodies like that indicates stomach problems and likely why levothyroxine is not helping

  • You have to make sure the Endo is good and wise about treating a patient who has hypothyroidism. Many members have been badly disappointed and appointment was a waste of time and money.

    Email louise.roberts@thyroiduk.org.uk who has a list of Endocrinologists and then you can put up a post asking for a Private Message to be sent to you about their appointment/treatment.

  • Thank you for that info

  • I was in the same position as you in 2009 and then I read about T3 so I asked my gp for a referral to an NHS endo which she agreed to. He prescribed T3 to go with a lower dose of T4 and that worked well for some time. I have read before that for some people T4 alone stops working after 10-15 years. No idea why, but it certainly seems you need more help. I know it has become more difficult to get T3 on the NHS but it should be possible where T4 is no longer working. Your gp is appalling to say you should put up with it. After years of research I've addressed adrenal issues, am on NDT gluten free and symptom free. Don't give up hope, you can be well.

  • What's NDT? Does gluten free really help ? Yes gp even when told about my weight gain gave me a slimming world and weight watchers subscription ! Did you feel much better once starting the t3 ? As I've never really felt better !! Even from the beginning ?

  • NDT is natural dessicated thyroid from pigs thyroid or cows in some cases. GPs rarely prescribe it so it would have to be through a private doctor but do your research first to see if it's for you. Yes I felt much better after going on T3 but still not as good as I would have liked, hence the other change. Gluten free gas helped with muscle and joint pain and stiffness.

  • I am taking levothyroxine 75 mg.

  • Your dose is quite low but this is a link which may be helpful. Also up-to-date reserch has shown that a combination of T4/T3 works better.

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

  • 75mcg is barely enough to treat a fly

    we need to know results for

    TSH

    freet4

    freet3

    ferritin

    folate

    b12

    vit d3

    go back to your GP and ask that all those are tested so that an NHS choices site where many many people truly understand hypothyroid can work out why your not well

    be sure though to get bllod taken early morning

    fasting with onky warpter to drink from dinner the previos evening and on no account whatever take your levothyroxine in the 24 hours before the blood draw

  • Hi sunflower, we all have been through similar circumstances. You should try to learn as much as possible and as someone mentioned, a new endocrinologist might not even help. We've just watched a series of videos by Izabella Wentz and it's all about autoimmune disease which is what we have....and you prove it due to your antibodies. She advises finding the root cause which is often a virus like Epstein Barre and leaky gut. You asked if gluten is really a problem and it can be. Since gut health is absolutely essential it's good to know if gluten or dairy or even corn, any of which can create problems. Selenium is helpful for this and a trial free of any of those ingredients may cause a noticeable improvement . Adding apple cider vinegar before meals can get your digestion working better and is antagonistic to certain bacteria.

    I prefer a natural desiccated hormonelike Naturethroid since it contains T4 (which is all you get in your Levo), plus T3, T2, T1 and calcitonin. Really for any hormone to be utilized by your system, you need good cofactors like ferritin, folate, B12 and cortisol. Minerals really need acid to break down.

    You could also take Betaine HCL and digestive enzymes. I know it sounds like a lot but it is really fundamental to get the proper nutrition to make everything work. You could read articles at Izabella's site or this one: stopthethyroidmadness.com/l...

    We know you CAN feel better and if you would like to reduce the levo and get your own T3, you could ask for recommendations. Even NDT can be acquired.

  • Yes would like to try t3 and reduce Levo have been referred to an endocrinologist got full bld screen booked before hand so hopefully they hear all my symptoms and take it all into account thanks all for tips

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