Hashimotos Advice

Dear All

I posted on here back in January. I'm a 28 year old male with hashimotos disease. I was diagnosed back in December. I have been on 175mcg of Levothyroxine for around 2 months having worked my way up from 50mcg.

My last set of blood results(around a month ago) were as follow -

TSH - 0.75 (0.3 - 5.0)

T4 - 16 (9.0 - 19)

T3 - 5.1 (3.25 - 6.21)

Which all seems ok I think. I have another round of blood test including all the other general ones in a couple of weeks. Last time I saw my GP we discussed the above results and he suggested I see how I do over the next 6 weeks or so, now that my bloods appear normal.

I'm eating healthily, trying to avoid foods that are bad for thyroid / autoimmune diseases and I'm supplementing with Vitamins B12, B Complex, Vit C, Vit D. I haven't gone Gluten free yet but I think I might be getting close to going down that route.

Whilst my symptoms have definitely improved over the last few months I still don't feel well at all. I still have all the physical symptoms, such as puffy eyes, dry skin and scalp, thinning hair... however the stuff that is bothering me the most is how I'm feeling in my head. I'm still incredibly foggy, I can't remember anything, I feel pretty low much of the time and I seem to have about 25% of my normal brain capacity. I also feel particularly bad every 6 hours or so - around mid day, 6 in the evening, and 12 at night(this happens every day!). During those periods of the day I feel numb, feel low and get a dull head ache. Very strange. Stuff does seem to be getting better and I do feel better generally, I think, but I still feel along way from being well. And I still regularly have days where I feel as bad as I ever have.

I'm a little worried because I was sort of hoping that I would start to feel much better now that my bloods are normal. That doesn't really seem to have happened.

I guess I'm sort of trying to work out what to do next so would be interested if anyone has any thoughts.

I have more blood tests in two weeks time. If everything is still normal then blood wise, I think I am going to ask to to be referred to endocrinologist. I spoke to my doctor about T3 supplementation and he said he didn't know anything about T3. But hoping that this is something I can take up with the Endocrinologist. I think my bloods appeared normal from a T3 perspective when last tested so I don't think I have conversion problem. But, last time I posted on here someone suggested T3 to help relieve depressive symptoms so I'm keen to try it, given that I still feel pretty rubbish.

I was also thinking of going to see a specialist privately so I was wondering if anyone could suggest a good one in the London area.

I've rambled on quite enough. Let me know if you have any thoughts re blood tests and a good private endo specialist. Or anything else that might help!



14 Replies

  • It does take many months to feel better so whilecyour bloods are certainly in the right direction you could still take another raise of levo in my book so that your free t4 is near 20

    are you careful NOT to take your thyroid meds in the 24 hrs before a blood test because that can skew results

    hang on in there things should get better

    it took my husband a solid year on NDT after years on levo and then t3 to feel really well

    much depends on how long you were ill before treatment was started

  • Hi, thanks for your help. Yes I have always made sure not to take meds 24 hours before a blood test. I think I was quite bad for a while before I was diagnosed. I believed, and so did my doctor that all my symptoms were down to depression so I was quite ill for a good 6 months before I got the thyroid diagnoses. I'll get there in the end, I'm sure!

  • Joe your symptoms are exactly same as mine, I am on 4 grains NDT and adrenal support and still don't feel better. I've just had a load of blood tests and now I'm going to try gluten free. good luck!

  • Joe, symptoms can lag behind good biochemistry by several weeks/couple of months so hang in there as your GP suggested. T3 5.1 is good and in the optimal top third of range and has responded very quickly considering you were only diagnosed in December. It is low T3 which usually causes hypothyroid and depressive symptoms and brain fog. It also takes around 8 weeks to benefit from supplementing vits and minerals so more improvement should be forthcoming soon.

    Email louise.warvill@thyroiduk.org.uk for a list of endos recommended by members. You can also post a question asking for recommendations but ask for replies via private messages.

  • Hi clutter. Thanks. I've been euthyroid for about a month, so I probably still do need to wait a little time before everything to sorts itself.... fingers crossed. Great, I'll get in touch with Louise re endos. Thanks for that.

  • Hi Joe, I do think the addition of T3 will help you quite a lot. Levo didn't do much for me as I couldn't believe that taking a medication could make you feel worse. Anyway when 10mcg T3 was added to a reduced T4 I felt an immediate improvement. It took quite a while to discover that there were other medications available but, unfortunately, not prescribed by the NHS (although I do know that some Endos do prescribe).

    I am now on T3 alone and feel very well now. Levo plagued me with palpitations as well as other symptoms, I hadn't had before diagnosis.

    Blood tests don't always relate to how a person feels but doctors are happy to dispense antidepressants (for which there's not blood tests) instead of T3 which is the Active hormone we need in every receptor cell in our body and the brain contains the most.

    I do hope you are successful. Someone might send you a Private Message with the name of an Endocrinologist and if you email louise.warvill@throiduk.org.uk and ask for a list of sympathetic doctors.

  • Hi Shaws. Thats all good to know. Thanks. If I wanted to try out some of the other thyroid meds, would one have go privately to access those?

    Whats slightly strange, is that if I have a day when I feel particularly bad, the following day I often feel particularly good(feels like I'm a bit hyper). Like I suddenly have a lot of energy. I guess thats probably because my hormone and TSH levels are still fluctuating somewhat and I think I probably still have a bit thyroid function left. Could it be that on day I feel particularly bad(the result of low levels of T3 and T4), my TSH goes up(its suppressed on my current dose of levo ), which then stimulates my thyroid into producing that little bit of T3 that it does, which in turn makes gives me lots of energy(makes me feel slightly hyper. I think I also read that your TSH level has a part in controlling the rate at which T4 is converted to T3. Perhaps this playing a part

    I thought I'd mention this because on the days where I feel good and have lots of energy all my worst symptoms seem to go. Unfotunatly after about a day my hypo symptoms come back. But this has been regular feature of the last couple month or so. Very bad days followed immediately by very good days. It makes me think that T3 supplementation could work for me.

    Anyway, I don't know if that makes sense and perhaps I'm looking at it a bit simplistically. (putting my science hat away now!) Thought I'd share anyway.

    thanks gain.

  • Our TSH varies throughout 24 hours anyway that's why we advise an early morning blood test, otherwise some doctors might reduce meds according to ur TSH.

    Do you take note of who makes your levo and keep to that for a few months at least? Then try another generic and so on? Because levos aren't identical - but only fillers/binders I believe. I, (and I know a lot of other users) said that Eltroxin was the best for them but unfortunately this was discontinued which meant lot of members had symptoms again and were unhappy (especially as some had been on it for more than 25 years). Mercury Pharma insisted that their generic levo was 'exactly' the same as Eltroxin which they used to make but members believed diffferently because their bodies told them so.

    If we exercise too much, and I suppose if we use too much energy one day, and our T3 reduces which 'might' be the cause of you feeling not so good.

    I hope you feel better if you are able to get some T3 prescribed. Some Endocrinologists will as do some GPs. But some wont. In the UK if you go privately, T3 in the UK is extortionate for some unknown reason to me.

  • Actually if I remember correctly I think my last blood test was in the afternoon. I'll be sure to book one in the morning for the next one.

    I think I've been on a couple of different brands of Levothyroxine since I was diagnosed. I've largely been taking Levo made by Actavis. But I was recently given Levo from Mercury Pharma and have just started taking that.

    Initially I was still trying to exercise but I was finding, as you say, that I would feel pretty terrible afterwards so have knocked it on the head. Still trying to be active though and will go walking everyday.

    I'll get there in the end. Thanks for all your help Shaws.

  • If we exercise gently until we build up sufficient thyroid hormones to an optimum level that we feel good at, that's fine. If we exercise hard, i.e. to lose weight etc. all we do (as I mentioned above) is reduce our T3 which is the active hormone. In a healthy body the T3 rises automatically but you might not have sufficient when taking levo and maybe that's why you feel worse after excercising.

  • I really would try going gluten free, it worked for me. I was hypo for about 6 years and originally didn't have any antibodies. About 15months ago started to feel really ill and asked for TPO test which showed raised levels. Local endo said just carry on with levo but i I read Isabella Wentz and others and went gluten free. Felt a lot better 6 months later and my tpo went down from 120 to 13!

  • Hi crimple. I'm getting very close to taking the plunge re no gluten. It does seem to work for a lot of people. thanks.

  • part of the problem is on good days you do too much and then pay for it with a bad day

    Some people find that NDT is the only real answer

    you can buy it on the web without prescription but keep requests for that to PMs not on forum

  • It can take quite a few months of treatment before people with Hashimoto's start to feel the full benefit of the medication.Also 16 is not necessarily your optimum level of T4. I do not feel well unless my T4 is 21 and my TSH .001. It just depends on the individual. See what your Doctor thinks.

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