Levothyroxine 😩

Hi, desperate for some advice. I started taking levothyroxine 2 years ago and since I have had raised liver issues and yellowing of the eyes. The doctors are saying Gilbert's syndrome but it's only started with the medication. They won't offer an alternative and won't let me come off. I regret ever starting it. On 75mg at the min but recent blood test is saying too high and showing raised levels. Help I'm at my wits end, so worried about my liver 😖

4 Replies

  • Who is saying it's related to Levo ? I have had raised ALP, ALT and GGT for at least 10 years, all the tests plus biopsy negative, nether my Gastro or Hep Consultants have ever suggested it's Levo causing it, possibly an anti inflammatory I take for ulcerative colitis but very difficult to prove. Are you taking anything else ?

  • It's me that's wondering if there is a link as I've never had issues before being diagnosed. I don't take anything. I won't even take paracetamol and don't drink so this is the only thing I can think of. I've done hep tests and all came back neg so not sure what it could be

  • Which enzymes are high and what are the numbers ? it's possible to narrow down a cause depending on the enzymes affected. Sometimes it remains a mystery as with me and if all tests are negative then not much else to be done and unless your results are up in the 1000s they really don't worry.

  • Do you have Hashimoto's? Have you had your thyroid antibodies tested? There are two sorts - TPO and TG antibodies. They both need checking. If either or both are high this means that thyroid issue is autoimmune - called Hashimoto's .

    People with Hashimoto's and people with Gilberts syndrome have slightly higher chance of having coeliac disease. Have you been tested? You can have "silent coeliacs" that has no obvious symptoms. (You can get false negative from blood test)

    Even if not coeliac, many Hashimoto's patients appear to be gluten intolerant. (No blood test available for gluten intolerance) There seems to be some anecdotal evidence on the web that adopting gluten free diet, can as a "bonus" reduce high bilirubin levels in some people with Gilberts syndrome.

    Also have you had full thyroid tests - have they checked your FT3 - conversion from FT4 can be a bit more sluggish as liver is involved.

    Apparenty Gilberts syndrome can cause slightly lower B12 and Vitamin D - both are needed at good levels for efficient uptake of thyroid hormones. Folate and ferritin also need to be at good levels. Have all these been checked.


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