Change of levo brand

[Odinil]

I ve been on Actavis 50mg together with 25mg for six years after having thyroid cancer and thyroid removed.

I never took to levo having all sorts of problems. I am on 62.5mg per day, 50mg Actavis and 25mg cut in half of Wockharte. It taken years to settle on levo but i finally settled down on the brands that the hospital gave me after my op. When Actavis recently changed to Accord i was told that it was only the packaging that had changed, after taking them for 28 days i was really ill so i stopped taking them and managed to source one box of Actavis, after two days i felt better but when they ran out i didnt know what to do.

I saw that many people on here were happy on Mercury Pharma so asked my gp to change my prescription to read MP, i took them for a week and again started to feel very ill. Now i am taking all Wockhart to make up my 62.5mg a day. I am alot better but still not feeling as good as i was on Actavis and Wockehart combined. Im so tired, no energy, feel bloated especially face and stomach with aches and pains all over my body. Is it that Wockehart is not the same as Actavis/Wockehart combination in terms of strength, if that makes sense. I just dont know what to do anymore, gp's no help, tried speakung to a nurse at Addensbrooke endo department touched on the subject of T3 next think i know i got a letter saying that all gp's and consultants have been advised by the government not to prescribe T3, also that even if a consultant advised your gp that you needed it your gp doesnt have to.

My hospital appointment is december and i have asked if i can have a one to one instead of a telephone conversation at least with the knowledge i now have i feel i can ask the right questions even though i know what the answers are.

Other then this forum i think most of us are pretty much on our own 😞

[bantam12]

Addenbrookes Endos don't prescribe T3, one went as far as to override my late husbands Endo and stopped it post surgery with disastrous results.

[sy28 in reply to bantam12]

Hello, this is curious. I was first prescribed Wockharte-Activis combination in 2017. This progressed to Activis only. Like you, I was told there was no change to the formulation when Activis brand was phased out and replaced by Accord. I am not so convinced. Four months ago, after switching from Activis to Accord, I experienced severe Urticaria (never had this before) which lasted 6 weeks. I was convinced I had Covid, but tested negative. In recent months and weeks since, symptoms have ranged from stomach gripping pains, digestive issues, palpitations, racing heart, fatigue, leg weakness, sleep disturbance. Feeling under-medicated, but following up GP's idea T4 might be over-replaced and have just reduced Levo from 125mcgm to 100mcgm. To be honest, Levothyroxine mono treatment has never restored my energy or made me well. I have Hashimoto's. I am wondering if there's been a change in supply of Accord fillers or binders - or is the Levo formulation itself stronger. My GP has organised full TFT blood tests, including thyroid antibodies and Vit D, B12, Folate, Ferritin, full blood count and Coelic disease check. I've booked a separate Medichecks Thyroid Ultra Vit blood test to compare results. I wonder if anyone else on the forum is going through a similar experience after being changed from Activis to Accord. I hope you feel better soon. Could you ask your GP for blood tests? ... Full thyroid tests, not TSH in isolation, to include TSH, Free T4 and Free T3 for a full picture. Also request Vitamins D, B12; Ferritin and Folate. Be very specific in reporting currant symptoms. My GP has responded rapidly to my list of symptoms as they presented cardiac, digestive and rash symptoms. I wish you luck. Keep us posted.

[sy28 in reply to sy28]

Another thought regarding T3 prescribing, I don't suppose you have ever approached the Patient Care Team at your local CCG. Given your past history (which I was very sorry to read - my earlier suggestion of including TSH blood test was inaccurate and clumsy, I do apologise)

it might be worth researching where you stand from your local CCG's view. The Patient Care Team can be a good first point of contact and should be able to refer your prescribing enquiry to a member of the CCG medical team. Going forward, building contacts can boost confidence. Hope you feel better soon.