TSH 1.1 but still feel ill

I wonder if anyone on this wonderful forum can offer me some advice.

I was finally diagnosed with Hashimotos 3 months ago after finally booking to see a private endocrinologist after 8 fruitless years of going to GP with symptoms.

I now take 75mcg and 100mcg of T4 on alternate days and my TSH is now down to 1.1 but I still feel very unwell. I have a great deal of pain in my muscles, especially my back and neck. I was also diagnosed with fibromyalgia around the same time.( I firmly believe that the fibromyalgia is linked to my unresolved thyroid problems.)

Would an increase in my T4 help or do I need to take the DIO2 test to see if I need T3 as well? Not sure what to push for when I see my endo again .

I have put my life on hold for such a long time,I just want to feel well again.

Many thanks

J15

36 Replies

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  • Have you had your vitamin and minerals levels checked in recent months? If you haven't I think it should be the first thing you do.

    You need to know, as a minimum, ferritin (iron stores), vitamin B12, vitamin D, and folate.

    Muscle and joint aches and pains often occur in people who are short of vitamin D.

    Conversion from T4 to T3 can be helped by having optimal levels of iron. If you don't have enough iron then throwing more T4 at the problem won't help.

    People with thyroid problems have low stomach acid and so our nutrient levels often suffer. Getting them up to optimal helps a lot. Just being "in range" is not enough.

    Make sure you get copies of any blood tests including the reference ranges, and post your results in a new question. Don't just take your doctor's word for it if s/he says everything is "normal".

  • Thanks for your swift reply humanbean!

    All my vitamins and mineral tests that I requested from GP came back normal BUT I then read about getting a magnesium test at cellular level and got that done privately last week....turns out I was indeed magnesium deficient and am working to correct it now ASAP with transdermal magnesium spray. The blood test for magnesium given by GPs are useless,they only test magnesium levels in your blood, not at cellular level.(Excuse me if you already knew all of that!) Am also already taking a vitamin D supplement to keep me at higher end of range.

    Many thanks and best wishes

    J15

  • I'd be interested in seeing the blood test results, if you have them. :)

    Was it your GP who said they were normal?

  • zinc 14.3 umol/l

    25-oh vit D 60 NMOL/L

    SERUM IRON 16.7 UMOL/L

    T-FERRIN SATURATION 21%

    Serum transferrin 3.2 g/l

    TAKEN 3 MONTHS AGO

    gp said all ok. consultant glanced at them too and did not comment.

    thanks.

    j15

  • No ferritin result and D is still too low - needs to be in the 90s.

    No b12 result - needs to be about 1000 (even if that's over the range).

    No folate result.

  • ps diagnosed with hashimotos by high anti bodies

  • my tsh in November was 3.65 and has now fallen to 1.1 .....

    I was definitely beginning to feel better but have really slipped back this week. I don't understand how you can suddenly feel so unwell again if TSH is falling?

  • Before you do anything else, you need to know what your FT4 and FT3 levels are. They can be very low even thought the TSH is brilliant. TSH gives you very little information about your thyroid status.

    First of all, you need to know if you're converting before launching into expensive DNA tests. It could be that you Don't have enough T4 to convert. In which case an increase in Levo could do the trick.

    I Don't think endos do DIO2 testing on the NHS. But they can test FT4 and FT3 if they wish. At the same time, you need to ask for your vit D, vit B12, folate, ferritin to be tested. These all need to be optimal for your body to be able to absorb and use the hormone you're giving it. :)

  • Thanks for your reply greygoose.

    When you say optimal do you mean at the top of the range advised? I asked my gp for all those tests after reading posts here and all came back ok .I take extra vit D just to be sure as well as omega fish oils. I also read about the need to get magnesium levels tested at cellular level (not available on the NHS) and got that done privately last week....turns out I was indeed magnesium deficient and am working to correct it now ASAP with transdermal magnesium spray. The blood test for magnesium given by GPs are useless,they only test magnesium levels in your blood, not at cellular level.

    My ft4 was only tested once back in June 2014 when it was 10.7pmol/l.

    My Ft3 was tested last December at 3.8

    I was told that this FT3 result meant my body converted T4 to T3 ok.

    I had excruciating pain for 7 weeks especially in my spine and back at the end of last year as well as the usual fainting, low blood pressure, memory loss and exhaustion. I am terrified that unless I find the correct treatment for my thyroid these symptoms will all return. My GP just kept sending me home telling me my thyroid blood tests were normal. In desperation I self referred to see a private consultant. As soon as the endocrinologist looked at my notes however he said I should have begun treatment at least 8 years earlier. It truly is scandalous!

    If test DIO2 would help I will happily pay for it privately.

    Thank you so much for replying. Best wishes

    j15

  • my tsh in November was 3.65 and has now fallen to 1.1 .....

    I was definitely beginning to feel better but have really slipped back this week. I don't understand how you can suddenly feel so unwell again if TSH is falling?

  • Difficult to say without the ranges, but just because you have some T3 doesn't mean you're converting ok - it's rare to find anyone that doesn't convert at all, but quite common to find people that can't convert enough T3 to make them well.

    An FT3 of 3.8 sounds very low, even without the range. These doctors just do not understand how it all works!!! But I would have to see both tested together, with the ranges, to see how well you're converting.

    For nutrients, top of the range is sometimes too much - and sometimes, the range doesn't go high enough. B12, for example is optimal at 1000, never mind the range. But ferritin would be too high at the top of the range. You'd have to get the results and post them for people to explain.

  • Both of those Ft3 and FT4 results sound very low but it's not possible to tell without the ranges. Both need to to be in top quarter of the range. You need to get them done. If surgery won't do them, get it done privately through Blue Horizon with TUK discount.

  • thankyou I appreciate your advice. I didn't know I should be in the top of ranges.

  • Thankyou greygoose,

    I will take your advise and request the vitamin, mineral T3 and T4 tests you recommend in a couple of weeks before I see my consultant again.

    my FT3 of 3.8 was in a range set at 2.5 - 5.7 is that not ok?

    In case these are any use also ....

    zinc 14.3 umol/l

    25-oh vit D 60 NMOL/L

    SERUM IRON 16.7 UMOL/L

    T-FERRIN SATURATION 21%

    Serum transferrin 3.2 g/l

    TAKEN 3 MONTHS AGO

    gp said all ok. consultant glanced at them too and did not comment.

    thanks.

    j15

  • Jen, if you Don't answer by clicking on the 'Reply' button at the end of my comment, I'm not going to know you've replied. I only saw this by accident.

    No, 3.8 in a range of 2.5 - 5.7 is not OK. It's not even mid-range, and most people need it up the top of the range to feel well. Just being 'in range' is not good enough. It needs to be in the right place in the range. And that could have changed by now. You need regular FT3 testing until it comes up. I'm not surprised you still have symptoms.

    Your vit d looks a bit low. It should be at least 85, I believe. Zinc, impossible to say without the range. It's ferritin you need tested, not serum iron. I'm not surprised your endo didn't comment on the results. He probably didn't understand them if they were presented like that. They know nothing about nutrients, anyway. Better to post your next lot of results on here. Doctors think that anything 'in range' is 'fine'. They have no idea of the subtleties of reading lab results! lol

  • many thanks greygoose, your advice particularly on ft3 is very interesting.

    Is it correct then that taking more t4 (levothyroxine) should raise my ft3 levels to the top of the range?

  • If you are converting correctly, yes. But impossible to tell how you are converting without seeing an FT4 and an FT3 taken at the same time.

    T4 is the storage hormone. As far as we know, it doesn't do much else except sit around waiting to be converted into T3, the active hormone. But not everybody is able to convert correctly, for whatever reason.

    But, try increasing the T4 and see what happens on the next test. But it will take a while to raise that low level, and increments should only be 25 mcg at a time. Increasing too fast can stress the body and cause more problems than it solves. :)

  • Thankyou greygoose,

    I have learnt a great deal in the last 24 hours.

    I have 3 weeks until my next blood test so I may as well start a slight increase of 25mcg extra of t4? perhaps an increase on alternate days just to be cautious?

  • No, Don't do that. It will take a minimum of 6 weeks for that increase to show in blood tests, but will skew a test in three weeks time. Leave things as they are until after the test.

    I imagine you know to have the earliest test possible, fasting except for water, and leaving 24 hours between your last dose and the test? :)

  • should I get a blood test asap then via my gp so I can then increase my t4? I am in pain at the moment (back,neck ,shoulders) and really need to make some progress. I dont want to waste another 3 weeks.Thanks

  • Well, it dépends when you had your last increase in dose. Increases should only be every six weeks minimum. Anything less will not give a true result.

  • haven't had an increase in my levo for about 10 weeks.

    unfortunately when I saw endo 2 weeks ago I felt well and we agreed to leave my dose as it was at 100mcg/75mcg alternate days.

    2 days later I woke up feeling awful again and have stayed that way since.

    I now feel stranded until my next endo appointment in a months time.

  • OK, so it's not too soon to have a dose increase. But absolutely no point testing in three weeks because the results will be misleading.

  • should I get blood tests done asap by gp then increase levo next week?

  • That would be a good plan, yes.

  • Thank you for your patience greygoose. This is all quite new to me and my concentration is particularly rubbish at the moment!

    Will go to gp for blood tests asap.

  • Oh, I know exactly what you mean! It's very hard in the beginning, when we aren't up to par, to take it all in. I'm sure we've all been there, done that, got the t-shirts, even...

  • I will ask gp tomorrow for t4 t3 and tsh blood tests plus vits/minerals as advised.I feel like I know what to ask now. Thank you greygoose for giving up your time to steer me in the right direction.

  • No problem. And if your doctor won't agree, you can always get them done privately. :)

  • No 3.8 is poor. In that range min of 4.9 is good.

  • Hi Jen, you have good advice given. I just want to reinforce that sometimes self treating is more effective than waiting 8 years for a GP and then moving on to a REAL endo.

    You are more correct in your view of your problems than the doctors. I hope when you get your own health in order you remind others that soldiering on while waiting for the professionals may not be a good idea. Hashimoto's waits for no one.

  • Many thanks Heloise.

    I also have other health issues that complicated the picture so it was very difficult to know what was happening. I had no idea that I had a thyroid problem let alone the autoimmune disease hashimotos, I had never heard of it!

    I am trying to look forward now to a healthier future with the help of my endo and advice from fellow travellers on this site. Many thanks for taking the time to post a reply. I think I need to start by getting a good multi vitamin to optimise the thyroxine!

    Best wishes j15

  • You have the right attitude and of course ten years ago I was still muddling myself. Times have changed thank goodness. I know you will find your way.

  • Thanks Heloise, everyone here is so very kind and knowledgeable.

    Much appreciated.

  • Jen15, you may need a dose increase to raise FT4 into the upper quadrant and FT3 higher in range. Read Treatment Options in thyroiduk.org.uk/tuk/about_...

    Many Hashi patients find 100% gluten-free diet helpful in reducing Hashi symptoms and antibodies.

    chriskresser.com/the-gluten...

    thyroiduk.org.uk/tuk/about_...

  • Many thanks Clutter.

    I have been gluten free for a few years now and that has to have helped absorption problems I think?

    Thanks for the advice on increasing my thyroxine dose,I will follow that up with the endo ASAP. It's very appreciated.

    Best wishes

    jen15

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