Coming off Levothyroxine

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Hi - my name is Allan, I am now 53, back in 2008 my thyroid went overactive, then went underactive - they was going to "nuke" (Radioactive Iodine) it but did levels and they were normalish so didn't do anything but said because it (thyroid gland) was damaged it would eventually go underactive.. Took a few years before levels dropped on paper before they started me on on Levothyroxine, 25 for a while, then 50, recently 75.. In this time I have gone from a 28 waist to 32, from a size small shirt to some of my shirts are a Large and I look pregnant, have all the symptons and more, I dont drink or smoke, watch my diet, am active, gave up choc & cake/crisps etc for 2 months Jan  - Feb and put on a 1lb, before 2008 I was just under 10 stone and had been for the previous 10 years, no history of it with any family members, (am 5ft 3) I am now a couple pounds under 12 stone and cannot shift it, GP just says everything looks ok on paper - so have started looking into side effects of Thyroxine and coming off it (it is the only medication I am taking so cant blame it on anything else) there are other reasons on the net why the Thyroid went off the rails in the first place - one possible casue is a "Stress Event" (have had many) - there are a few other reasons out there which you would need testing to verify, so you need to take stock and realise this medication is making me/you worse, I thought when my thyroxine was increased I would have more energy, the weight would drop off - the opposite, I feel worse, depressed, brain fog, weight going up etc so I have decided to wean myself of these awful mediaction.  Suggested this to my GP (Dr) 1 said - you have no thyroid gland left (I have had no scan so how do they know?) and the other said - we should increase your dose, not happy with either of those options... I have/am dropped to 50 from 75 for a week, then going to 25 for 2 weeks then 25 every other day then intend coming off it completly, I have increased my intake of Vit C (500mg tabs) to 2/3 a day to boost my immune system and I believe my body will heal itself.  I took myself of citalapram - as one of the side effects was coughing and I coughed every waking moment and also took myself of statins as they are a dangerous tablet - look on youtube - things they dont tell you about statins.. 

Has anybody else out there taken themselves off Levothyroxine?.. Any tips of things they could reccomend?... Thanks

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6 Replies

  • Posted

    Instead of a GP, would a endocrinologist be more helpful?
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    • Posted

      Hi been seeing a endocrinologist for a few months now - he looked at my blood results and increased my thyroxine to 75 then rechecked them and said basically they were as good as they were going to get- I explained about weight gain and a list of other thyroid probs and basically wasnt bothered sort of suggested the other syptons are not thyroid related.. Few days ago found some randompost on Pinterest (of all places) about the shocking side effects of Levothyroxine and it is amazing how many peopl are on it with symptons and other problesm only getting worse... since Monday just gone have dropped back to 50 thyroxine - will do that for a week then try 25 a day for 2 weeks.. I am worse now than beofre I took them...   Have you come off them or know anyone who has?
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    • Posted

      No, sorry, I don't. I am like you figured the more you took of this stuff, it would help lose weight . I honestly can't tell if it is giving me other symptoms

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    • Posted

      Side effects of Levothyroxine

      Abdominal or stomach cramps

      change in appetite

      crying

      diarrhea

      false or unusual sense of well-being

      fear

      feeling not well or unhappy

      feeling of discomfort

      feeling of warmth

      feeling things are not real

      feelings of suspicion and distrust

      hair loss

      headache

      increased appetite

      mental depression

      muscle weakness

      nervousness

      quick to react or overreact emotionally

      rapidly changing moods

      redness of the face, neck, arms, and occasionally, upper chest

      restlessness

      trouble getting pregnant

      trouble sitting still

      unusual tiredness or weakness

      vomiting

      weight gain

      I dont have all these side effects but have most of them esp the weight gain, 2 stone since being on these tablets, weight gain can lead to heart probs and diabeates if over weight etc so have to try coming off them or will have other problems on top...

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  • Posted

    Hi Allan, I went off levo gradually, only because I tried various things, that didn't work. The levo made me blow up like a balloon, so I kept trying other things... I went from the levo to NDT for 6 months, then to an OTC bovine glandular for another six months, before I was completely fed up. Every time there's a change in the formulation, I have a problem and get sicker. 

    When end I finally went off everything, I used huge doses of essential amino acids for a couple months, with extra phenylalanine. Then for the migraines and inflammation, I took turmeric, and I also had a massive detox reaction, so used some liquid chlorophyll. I also. Took some kelp supplements and a thyroid support supplement, as well as ha shad ongoing support with a acupuncturist. If you like I can PM you whichever of the items I've used so you can save yourself the research on brand quality.

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    • Posted

      Hi - wow you have been through it, hope my coming off it will be less eventful.. I can relate to the ballooning... If somethng has worked for you I will be glad to have any info "amino acids for a couple months, with extra phenylalanine" - wouldnt know where to start or where to get those if I needed them.. - how did you know you needed them?...

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