Hi there,
This is my first post, but I’ve been reading comments on the community for a couple of months and have found it an immensely useful resource - so thank you!
I’m hoping to get a bit of advice from people on my options regarding Levothyroxine / alternatives.
I was diagnosed with sub-clinical hypothyroidism (with raised antibodies) in March this year. My GP was unwilling to treat me until my T4 dropped below the ‘normal range', despite my having symptoms (severe constipation, hair loss and thinning, mild weight gain, tiredness, and tingling fingers and toes). These were my results:
March:
TSH 5.34 (0.30-5.00) (retested in July: 8.3 and October: 8.5)
T4 9.7 (9.00-19.00) (retested in July: 10.7 and October: 12)
T3 3.6 (3.25-6.21) (retested in October: 2.38)
Thyroid Peroxidase Antibodies 119.4 (00.00-6.00)
B12 535 (200.00-1000.00)
Folate 7 (4.00-18.00)
Ferritin 53 (9.00-120.00)
Apparently my Vit D is "excellent" but I don't have the test results to hand
I have also suffered from IBS for around 10 years.
In August I got a private referral to an endocrinologist who said I would feel much better on Levothyroxine and prescribed 50mcg daily. I started on Teva and almost immediately felt more energetic and my constipation disappeared. However, after a few days I started to suffer from what I thought was worsening IBS (abdominal bloating, pain, fatigue) as well as getting a nasty bitter taste in my mouth and my tongue developing a yellow/blue coating. The oral symptoms subsided, but the ‘IBS’ persisted and the endo told me to stop taking the Teva (and said the brand was notorious for side effects).
I had a lovely couple of medication-free weeks with next to no IBS symptoms while still feeling energetic (the endo thinks this was the lasting effects of the levothyroxine without the unpleasant side-effects of the binders in the tablets). The bouncy feeling eventually wore off though and so I started again with 50mcg Actavis / Accord. I was hopeful about Actavis since it doesn’t contain mannitol, which is one of the known triggers of IBS and one of the binders in Teva. I felt great initially, but on day 4 I developed a sweet taste in my mouth, the yellow tongue coating returned (although not as dramatically as on Teva) and the abdominal discomfort set in. I have now been taking Actavis for 15 days and am experiencing fairly continual bloating, wind, discomfort and mucus in my stool. During this time I have been following the low-FODMAP diet (designed to eliminate IBS triggers, no lactose, no gluten etc. ) so I’m convinced that my symptoms are a reaction to the levothyroxine rather than simply IBS. I’m confused though about what could be causing them. I know lactose is one of the fillers used in Actavis, but from what I can gather, it’s present in such tiny quantities that you’d need to have a very severe lactose-intolerance to be bothered (and until recently I was regularly consuming milk so don’t think this can be the case for me).
My endo is looking into solid levothyroxine options that are free from mannitol, lactose and gluten, but as I haven’t been able to pinpoint what might be causing the reaction, I’m feeling less optimistic that I’ll find a medication I can get on with. The endo says the next step would be liquid thyroxine, but I’m interested in others’ views on whether a liquid form is likely to fix the gastro issues, or whether I should be asking for something else (NDT, T3…?), or whether I should stick with the Actavis and see if the symptoms improve.
Sorry this is such a long post! I’m struggling to unpick the different issues and wanted to give as much detail as possible.
Thanks very much in advance for any suggestions!
R