Advice needed please :-)

I've been feeling pretty ropey for the last couple of months so I asked for a blood test. I saw a different GP to normal (but still as hopeless) who yet again didn't think my symptoms are due to my thyroid but grudgingly agreed. I have just been for a print out of my results and although they've tested lots of things, the only thing that appears to be relevant is the TSH result which is (of course) "normal" 1.94 (0.30-4.70). No T4, T3, antibodies, B12, vit D, ferritin etc., so basically I've wasted my time! However,under the TSH result it has "excludes primary hypothyroidism and hyperthyroidism). What do they mean by this??

I have Hashis, am on 125mcg of T4 and have been GF for about 3 years, have recently done the leaky gut diet and am still keeping away from soya, fluoride, dairy, nightshades, coffee, soya etc so I was hopeful of some improvement. They haven't even bothered to test my antibodies and I am a bit dismayed that my TSH is still fairly high. Has anyone got any advice what I am possibly doing wrong?

Thanks a lot

10 Replies

  • The course of your illness is not dissimilar to mine. Hypo and then TPO +ve followed by gluten free and then dairy free diet, which has helped. Have you ever done any private blood tests? I realised the only way to monitor things was by getting Vit D and B12 tested, they were low so I supplemented. Iron, ferritin and folate were OK. I also got Selenium tested after supplementing for a few months. TPO's came down after adjusting diet.

    Blue Horizon tests showed that my T4 and T3 are low in range. I cannot function if TSH is more than .20. GP threatened I would have heart attacks and osteoporosis if I increased my meds but I insisted. Now on 112 mcg levo but still not great.

    I had the D102 gene test but that came back negative so next thing is to check my adrenals as if they are struggling that can affect ability to use levo medication.

    I have done a lot of reading including Izabella Wentz, who I find helpful. At the end of the day what doesn't make sense to me is why the medics think that someone who needs thyroid meds will be fine just on T4 when a healthy thyroid produces T4 and T3 among other things. Maybe I will end up getting T3 by whatever means, NHS isn't going to provide it but I'm fed up of not being quite right!

    I do hope things improve for you. I can say with a TSH level like yours I would be on my knees, but we are all individuals.

  • Well, your TSH is still a bit high. You probably need it to be one or under.

    The lab comment was for someone not on thyroid hormone replacement - they obviously didn't know you were already on levo.

    I agree with crimple, you need full, comprehensive tests. And, the only way to get those is privately.

  • Hi Crimple

    I've had everything tested in the past and all of my vitamin levels have always been OK. I rattle with supplements so that's a bonus! My TSH has always been around the same level, T4 average and T3 low in range, when they bother to test it that is. And as usual every GP I have ever seen doesn't see the need to have T3. To be honest I am keeping T3 on the backburner in case I really go downhill :-(

    I feel like I have done everything I can and I still can't reduce my antibodies/TSH. I feel there is a piece of the jigsaw that I am missing somehow!

    Greygoose, I have an appointment on Friday to discuss my results but I may as well cancel it as there's nothing TO discuss! I have been thinking of getting privately tested and these "results" have made my mind up. Blue Horizon here I come!

  • I think that's the best idea. But why keep T3 on the back burner? Why wait until you get really bed, when it will be all the more difficult for you to recover? Why not get the T3 now and spare yourself a lot of suffering?

  • I'm just a bit worried about going it alone. Up until now I haven't been too bad so haven't wanted to rock the boat! If T3 was a cure-all it would be a different matter but when I read posts from people not doing well on it makes me uneasy about trying it. This may change in the near future of course ;-)

  • OK, I see. But you'll never know if it suits you if you don't try it.

    Of course, T3 isn't a cure-all, but nothing is. Many people insist that NDT is a cure-all, but that doesn't suit everybody, either. But, we'll never know if we don't try it. And, we do need T3. Every cell in the body needs it. And if we can't make it or convert T4, then we have to try getting it from elsewhere.

  • I'm going to get privately tested and take it from there because I can't stand this lack of energy. I didn't have a lot to start with but now it's getting ridiculous!

  • That sounds like a very good idea. :)

  • Do you know how much it costs to have a full private blood test

  • Yes I've been looking at Blue Horizon.

    They are offering a discount this month :-)

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