Titrating down off carbimazole - going hypo - Thyroid UK

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Titrating down off carbimazole - going hypo

Cat4health
Cat4health

Hi, so I'm somewhat reposting but also rephrasing. I respond to others on here but rarely post. I have had graves for 12 years and been in a flare up relapse for the last 3.5 years. For 2 of those years I have been keeping it in control with very low dose carbimazole. Then this year something changed.

In about Feb/March I started getting more cold and struggling to lose weight. I didn't have time to do anything about it so waited til April. When I got a blood test my ft4 was okay at 15 but my ft3 had dropped to 3.4 and for the first time in over 3 years my tsh was increasing and within normal range at 0.5.

Considering the mildly hypo style symptoms i decided to titrate carbimazole and agreed with my doc and Elaine Moore to drop to 1.25mg every day. 2 months later the hypo symptoms continued. As it got warmer outside I noticed that I couldn't feel the heat. I wasn't cold per say but others would comment on how hot it was and I had no idea, other times I'd be layering up as others were stripping down. I continued to struggle to lose of keep my weight down. Then about 3 weeks ago I started getting these really bad days. It wouldn't be everyday but when it hit I would be totally, totally exhausted and slightly dizzy/feeling unbalanced. There would be a horrendous brain fog and I would often feel very angry/low. It was so bad that I had to leave work more than once and would have to sleep for the day.

I got my bloods done and this time ft4 was borderline and tsh had jumped up but they didn't do the ft3.

Now I'm getting even more annoyng symptoms - my hair has started falling out again, it did this when I went hyper but not in a long time and my nails are peeling on the edges. The days of complete exhaustion are continuing and unpredictable.

Has anyone titrating off carbimazole had this? I am off it all together now but am wondering how long it will take to come up enough for the symptoms to stop. It is driving me mad.

8 Replies
SlowDragon
SlowDragonAdministrator

Sounds more like Hashimoto's than Graves' disease

Did you endo actually test for Graves antibodies- listed as TRab or TSI antibodies

Early stage Hashimoto's can have short hyperthyroid type symptoms, but is basically hypothyroid

TPO and TG antibodies tend to be higher with Hashimoto's than Graves

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's.

Food intolerances are very common with both Graves and Hashimoto's too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

Thank you SlowDragon but I'm certain its graves. I've been tested for the antibodies numerous times and have had hyperthyroidism for 3 years on and off

Hi

I had exactly this after a failed RAI for Graves. I eventually needed less and less carbimazole , then stopped it altogether and slowly became hypo and started on Levo. My docs said my thyroid had basically burned itself out after years of rampant overactivity. Don’t know if that was true or not but it made sense to me, either that or it was a very very delayed reaction to the RAI. I was diagnosed June 2008, had RAI December 2008 started Levo April 2014.

When I first realised I was going hypo, I had hair loss, dizzy / unbalanced feeling, was sleeping every afternoon, had blurred vision and absolutely zero ‘get up and go’ . My GP started me on Levo according to my symptoms even although my blood results were border line.

I do hope removing Carbimazole completely brings your levels back up and you revert to remission of your Graves - I wish it had worked for me. But, I am doing very nicely on Levothyroxine even although it has taken me 4 years to need the pathetic amount of 125mcg per day.

Wishing you good luck.

Cat4health
Cat4health in reply to MrsGraves

Thank you so much MrsGraves, it's so interesting to hear you had similar symptoms!! I really hope i go back up. I do think this may have happened to me the first time I had a hyper flare but i was so much less educated or aware then so i just ignored it. I'm very hopeful that it will come back up and am glad you are doing well on levo =)

Hi. From my experience it can take 2 months after stopping the carbo to get your system up and running right again. I had the hair loss with a tsh over 2.5 but not lower than that. I’ve also experienced all the other symptoms you mention at different times. I’ve had graves 4 years now. One question: How do you break the tiny 5mg tablets down to get 1.25mg a day? Quarters right? Very fiddly. I currently take 2.5mg a day for a week and then 5mg a day for a week and then back to 2.5 for a week etc. I’m stable on this with a tsh of about 1.5. Alex

Hi Alex, i bought a pill cutter from the pharmacy cos i started on 1.25mgs n built up to 2.5mgs at my highest n now down again to nothing. It's nice to know I'm not alone with these symptoms but am sorry you went through this too, it sucks!! Did u flare up again since?

I unfortunately tried remission and I flared up straight away. So have been on the 2.5/5 switching weekly ever since. My tsh is stable so I still need the carbo despite my graves antibodies being none existent. I got the Endo to repeat my original diagnosis antibody test to see if they had gone before we tried for remission but despite them not being present I still went hyper again. I’ve been to 15.5 stone but have lost 3 stone since Xmas :) it’s been hard work but feeling better with weight off. My blood pressure is now also back to normal. So you have been in the carbo for 12 years? How do you know when to titrate off completely? What major lifestyle changes have you made on your journey? Do you plan to keep your Thyroid? How old are you? I’m 43 and no kids. Alex

Oh I've only bn on carb for 2 years. I had my first flare up 12 years ago but stabilised without meds. It took my tsh about 4 years to come into range but since i was otherwise euthyroid we did nothing. This time I was up n down like a yoyo for 18 months before I gave up n went on meds. I'm sorry you flared up again, that's so unusual without d antibodies, did they give u any explanation?? I'll definitely keep my thyroid for as long as possible, hopefully forever. I'm waiting on that apitope cure. Did u go off it from 2.5mgs or which level?

I reduced my stress, that had bn my trigger. I still eat gluten but I reduced my oats as i realised im allergic to Oat protein. I so avoided all extra iodine so i cut out sea products, jojoba oil, etc n reduced d egg yolks n other sources like goats cheese. I also recently got serious about plant sterols n i think it made a big difference. How bout you?

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