Feeling worse when on Levothyroxine

Hello everyone (again). I've been diagnosed with autoimmune hypothyroidism (I think this is called Hashimotos?) and over the last year and a bit I've been increasing the dose of Levothyroxine.

Now whilst I don't really have any more joint pain or the extreme exhaustion episodes, I've found that day-to-day I seem to be getting continually tired.

At the last test, in January, my TSH (I think) was still over the required range but my T4 had just got into the 'normal' range (I think it said just over 10) so my dose was upped to 125mg of Levothyroxine.

But I find the more the dose goes up the more tired I get. It's like my brain's foggy and can get confused and my eyelids keep trying to close.

I can do only a little physical activity before I have to rest and can sleep for a long time without it really being of any benefit.

I drive for work and I'm worried that it may start impacting on this which would be pretty bad for us.

So, is this normal and will it get worse or is it because I've not yet reached the level I need to be at? But why am I more tired (discounting the exhaustion episodes I used to have) than when I didn't take anything?

I'm trying to get another appointment with the doctor to discuss it but wanted other people's opinions first. Previously the doctor has told me it's normal (although it feels far from normal) and that qe should just carry in with the blood tests on dose increases for now (which are every four-sixth months).

Thanks for any help.

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23 Replies

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  • DanW,

    It sounds as though you may be under medicated. Can you post your recent thyroid results and ranges (the figures in brackets after results) and say what dose you were taking when tested? If you have any results and ranges for ferritin, vitamin D, B12 and folate please also post them.

  • I'm afraid I don't have them unfortunately, I only remember the gist of the results.

    As far as I'm aware, when I was taking 100mg of Levothyroxine the test came back as T4 just starting to get into the 'normal' range but the chemical that requests the release of T4 (TSH?) was still very high so I was instructed to increase the dose of Levothyroxine to 125mg and go back in June for another blood test.

    But each time it goes up 25mg it seems I get slightly more tired, it's very odd.

    I haven't had the results for the other things you mention apart from Vitamin D but that was only done for the first blood test I had and it was okay.

    Sorry I don't have any more info to give to you.

  • DanW,

    Get into the habit of asking for your test results with the lab ref ranges. 'Okay' may mean the result is scraping into range but it isn't the same as optimal which is needed to feel well.

    You will be optimally medicated when TSH is 1.0 or lower with FT4 in the upper quadrant of range. Your fatigue is due to low thyroid hormone FT4 not the Levothyroxine dose increases. Ask for a repeat test 6-8 weeks after dose was raised to 125mcg. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

  • Thanks very much for that. I have been trying to arrange the blood tests for the morning but I did not know about the fasting and holding off the dose until after the blood draw.

    I'll also ask them for a printout. They do show me on the computer the ranges and where I am and I have only just moved into the acceptable range for T4 and my TSH was still very high.

    The doctor seems content with leaving it between 4-6 months between tests, although I brought up it saying it should be 4-6 weeks in the Levothyroxine leaflet she dismissed it. Can I ask for it to be done more frequently do you think?

  • DanW,

    You need FT4 mid to high in range not at the bottom. TSH is high because the pituitary gland isn't detecting sufficient T4 and is issuing TSH to stimulate the thyroid gland to produce more T4. You are going to continue to feel fatigued and unwell until your thyroid levels are good. 6-8 weeks is ample time for a response to a dose increase so insist on testing after 6-8 weeks and refuse to wait 4-6 months.

  • Thankyou very much, I'll make an appointment tomorrow to talk to them about it and see if I can arrange to have a blood test next week.

  • The purpose of thyroid hormones is to relieve all our clinical symptoms. The doctor accepts that "the doctor has told me it's normal (although it feels far from normal) and that qe should just carry in with the blood tests on dose increases for now (which are every four-sixth months).". It may be 'normal' for him to keep treating patients who have hypothyroidism but still complain. That's due to him not making sure each patient has optimum hormones to relief all clinical symptoms.

    Increases every six to eight weeks are usual until we get to an optimum. We have to read and learn in order to recover our health as it seems that the guidelines doctors go by keep us unwell and symptomatic.

  • Hello, just a bit of an update. I made an appointment to see the doctor again to see if I could have the blood tests a little closer together.

    Saw a locum instead and they agreed that it should be done more frequently and that they test every two months (although that's still further apart than the NICE guidelines suggest).

    I explained how tired I'd been so they did a blood count, kidney test etc.

    Went back today for results and the extra tests were okay.

    The TSH levels were at 4.5 (the range went from 0.8-5.5) so she says I'm now fine.

    I asked what the T4 range was but she said that didn't need to be tested and only TSH needs testing for.

    Also because TSH was now in the 'normal' range I don't need to go back for another year (although the NICE guidelines say yearly tests are conducted when TSH is stable which to me suggests after the TSH has been at roughly the same level for a while).

    Apparently all the symptoms of hypothyroidism I'm currently experiencing are not hypothyroidism, but instead lifestyle related.

    So I dunno what to do.

  • Hi danW. How about you repost these results Ina separate post- I'm fairly sure the experienced members would have a few things to say about your TsH and doctors comments!! Just an idea πŸ˜„

  • Don't tell the doctor, but I decided to take another 25mg on my own 😁

    Unfortunately I still don't feel great, get periods of feeling very down, have no energy, pain in legs.

    But I guess this is life now πŸ€”

  • Hi DanW. I'm not an expert but I would post all your most recent results for TSH, fT4, ferritin, vit D, folate, b12 with their ranges in a new post. Don't give up hope of getting better but you may have to work hard to get there. Also if you have antibodies, many find benefit from being strictly gluten free.

  • Unfortunately they didn't do any of those tests (only the very first time I went) only focused on the TSH one really.

    Only nine months before I can go back for another test 😁

  • Many members- including myself, pay for them privately. I use medichecks and bluehorizon. I have a real problems getting bloods out of veins so I use their finger prick service and just post the sample back- results by email the next day or day after.

  • That sounds like it costs a lot of money? 😱

  • Hi Dan

    This has happened to me. From 50 to 75mg I have felt much worse. Daily fatigye, feel sick and weak a lot of the time and if I overdo things just doing housework or if I go out, I end up having what I call a crash and end up bed ridden for a day or 2 feeling exhausted and weak. It's horrible.

  • Yup, I know those feels 😁 it's like you have a little petrol tank and once it's run out you're just a dead weight.

    I got to spend all of Sunday in be, contemplating my own mortality.

    Did you find it got better after 75mg?

  • So you have the crashes too?

    I have serious weak thighs that even burn they are so weak when I crash. I feel heavy bur weak all over. Exhausted and heavy from head to toe. I drag myself around all day and it's hard being a mum to 3. If I crash I get high anxiety because I feel so ill even just lying in bed. This has been getting worse the higher I've gone in Levo.

    I'm at 75mg and despite my gp seeing my TSH has gone from 1.7 to 3.4 and ft4 has dropped to 17 he won't increase me to 100mg. He said he's looking for another cause and he won't treat ms until he's run more tests. So I'm left feeling absolutely terrible.

    Julie

  • Yup, that's right. You kinda know it's on the way because my legs get all weak 😁

    Then I get so tired it's like an old cassette player as it's batteries run out.

    I do get quite depressed as well and start to assume it's something worse like a heart attack or dangerously low blood pressure, although when I'm better it feels a bit silly.

    It's not so much fun when the kids want to do things as well, tried a play fight but they actually won 😁

    I'm nor sure why they'd need to look for another cause with you, it's a bit like "they have something that causes all these symptoms, but it can't be that, let's look for something else that has all these symptoms" 😱

  • Exactly. I just posted about it. My gp has been a complete nightmare and had me have so many blood tests I'm actually terrified of them now. He's reoeated test after test and still scares me it xould be something else he's not tested. I feek so uneell and I'm worried it's something serious.

    Today is a crash day I've woke weak, feeling dizzy and heavy all over. Nausea and just so drained. I then get anxious on top because my gp has worried me. It's horrible.

  • I'm also scared of having blood tests but that's mainly just because I'm a massive wuss 😝

    Unless I also have the same undiagnosed 'mystery-illness-that-weirdly-causes-the-same-sympoms-as-the-thing-i-actually-have-itus' then I think it's safe to say it's possibly just because you're still suffering the effects of the lack of an energy producing body part.

    But I suppose I have to follow that by saying that I'm not a doctor.

    Although it feels like you're in the process of being switched off I've decided that in future I'll just learn to try and embrace it and catch up on some films and sleepy time and sod the ironing.

    I think you just have to look at the probability of things. Whilst there may be something else wrong (and it's worth bearing in mind that there's always a chance somethings wrong with you even if you feel well but we don't take any notice of that chance normally), the probability is considerably higher that the reason you don't have any energy is because the thing that makes energy, isn't 😁

  • Thanks Dan.

    You can really relate to my symptoms? Thsys so reassuring. Thank you.

  • Yup, definitely. And I can't seem to understand what triggers it.

    It's like you're driving a car that doesn't have a petrol gauge and at any random moment you'll just come grinding to a halt.

    It's not even like normal tiredness where you can maybe grit your teeth and have a coffee, it's just like there's absolute no fuel left and there's nowt you can do about it other than sit there and get upset.

    I hope you feel better soon.

  • I can totally relate. Om crash days I cry all day and feel so anxious. It's so isolating and lonely.

    I hope things get better for you soon too.

    Julie

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