Dose decrease symptoms? Help!

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Hi I've recently had my dose decreased from 150 to 100mg levothyroxine due to unmanageable thyrotoxic symptoms.

My symptoms are episodes of shaking, agitation and palpitations and feeling generally very unwell. I drink a lot of water and symptoms seem to be partly relieved a few minutes after urinating (GP did blood sugar check and came out normal range, though on the higher end of normal).

I'm also suffering nausea and retching which is worst in morning.

These symptoms can on after being on an increased dose of levothyroxine for 3 weeks (150mg) but I've been on the reduced dose a week and still having horrible symptoms. Surely it should be better by now?? How long have others taken to adapt to dose decreases??

I'd be so grateful for advice, I'm going to get a written warning for attendance from work unless I make it in tomorrow but I'm a wreck :-(

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  • Posted

    Hi Rosie

    I have found it can take a few weeks for symptoms to subside once thyroxine is lowered so don't panic yet. Unfortunately thyrotoxicosis causes many & varied symptoms. The thyroid is a complex organ. I always say, thyroid the gift that keeps on giving! (Whether you want it or not!). Time will only tell & you may find yourself settling down fairly soon.

    Was it an HbA1c blood test you had, this shows blood glucose levels for the previous few months?

    Is it Hashimotos you have? An autoimmune disease, if so as Clive alive has offered before, have they checked your vitamin B12 levels? Pernicious anaemia or B12 deficiency can leave you exhausted, shaky & generally feeling really, really bad! I was diagnosed in 1999 after months of degenarating health & I had most of those symptoms plus bad headaches & exhaustion.

    I hope that you get this sorted soon.

    All the best

    Marilyn

    XX

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    • Posted

      Thankyou Marilyn for your message. I've been tested for b12 and gathwr that was fine. Doctor has suggested the other blood test you mentioned but don't know when I'm having it. I just can't believe how absolutely horrendous I feel! The doctor has given me some beta blockers for symptoms but I still seem to be getting shaking spells and I can't work when I'm such a state! I've always prided myself on doing well at work so it's really upsetting I might get a warning when I feel so horrible and just want to feel better.

      I hope, as you say, that it settles down soon

      Thanks

      Rosie

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    • Posted

      Oh and forgot to answer your other question - I had a total thyroidectomy for suspected Graves' disease, after they took it out they found a papillary cancer so advised I have my TSH suppressed. I was ok for first couple years post-op but the last year has been hellish with problems with my symptoms I've had almost no life for 9 months due to either being overtreated or undertreated :-( I think it's worn down my ability to tolerate more problems.

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    • Posted

      Oh dear Rosie, I had my thyroid removed in 2014 due to follicular cancer & have found that it can be so difficult to get the balance right afterwards. I have had up & down months since but am good now on 125mcg.

      Just a thought, have they tested you for Addison's disease, it is adrenal insufficiency could cause those symptoms.

      Yes tsh MUST be completely suppressed due to the possible regrowth of thyroid tissue.

      Good luck in finding answers.

      Marilyn

      XX

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    • Posted

      Thanks Marilyn. It's good to know that you've managed to get a comfortable dose sorted. I've always been better around 125 but doctors keep pushing me between 150 and 100 because of either my symptoms or my blood test results. One thing I'm clinging to is that hopefully at least it's clear what is causing my symptoms at last and it'll be sorted in a few weeks.

      I did have morning cortisol test last summer which was ok; I was supposed to have a more detailed one but never happened. I guess hyperthyroidism is probably demanding on the adrenals , though I know adrenal fatigue isn't a recognised diagnosis. Hopefully it'll settle!

      Thanks again

      Rosie

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    • Posted

      Hi Rosie

      I hope it's sorted soon for you.

      Like you I have been on between 150 to 100 mcg. Last year when they put the dose back up from 100 I thought I wouldn't be able to cope but, thankfully, it's been fine. It's been about 10 months now on 125 &, touch wood, I feel ok. So there is hope!

      Keep well

      Marilyn

      XX

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