Hi, should I come off carbimazole?
Diagnosed over-active May this year. TSH <0.01, free T4 23, free T3 10.6.
Positive for TPO and receptor antibodies.
Now TSH 0.16 and T4 8.
Consultant reduced carbimazole to 10mg from 15mg with a review in four months.
Weight gain over two years approx. 42llbs, 14 of those in the last five months.
Kind of wondering what my T4 will be like in four months time as seems to be suggesting I am hypo now.
Any thoughts and comments appreciated.
Members who've been on carbizamole and are now hypo will respond when they read your post.
p.s. when you state results it is beneficial if you state the ranges. The reason being labs use difference machines and have different ranges. It makes it easier for members to respond. If you do have the ranges, to edit your post click the down arrow next to 'More' press edit and add them in.
If the "usual" UK ranges apply, then 8 for T4 is v low but please add ranges as Shaws has said. I have Graves and suspected hashis, which sounds like it may apply to you. My test around 2 months ago showed low in range T4 and T3 and I had started getting hypo symptoms. My endo reduced dose to 5mg every other day (so much lower than yours), but my next test 6-8 weeks later showed that my T4 and T3 had lowered further and were now below range. My endo than said to come off carbi altogether, as I may be "hypo" again, and the tests showed my Graves "was no longer active". I feel better for coming off carbi although still getting hypo symptoms. I was worried about graves flaring up again but this hasn't happened yet.
What I am gathering though is this is all a bit of trial and error. My worry from what you have said above is that he is reviewing in 4 months - I am having tests every 6-8 weeks and this is what I would expect.
If I were you, I would go back to the endo, and explain the hypo symptoms you are getting and the impact on your life. I understand if you are on a higher dose of carbi you can't just come off it and it has to be titrated down. However, the endo could possibly add in some levo to bring up your thyroid hormones to a better level and reduce your symptoms. I would also ask for blood tests every 6-8 weeks.
Good luck.
Wow thanks for replying.
Think I feel quite isolated with all this and its reassuring to know the support is there.
Ranges for TSH IS 0.27 - 4.20 and T4 12-22.
MiniMum97, yes I agree.
But surely the endo, with the results in front of him would have suggested levo at my last appointment? Something to do with my TSH still on the low side perhaps?
Glad you are feeling better and off the carbi. Long may it continue for you.
My sister says I was probably hypo all along and just got diagnosed with a hyper spike.
All head scratching stuff to me.
If you're on carbimazole, and go into the hypo range through over-medication, they wouldn't normally prescribe levo they would simply reduce the carbimazole.** They are unlikely to stop the carbimazole altogether because if you've got Graves', the best chance of achieving remission is to stay on it for 12-18 months. If you come off it too soon, the antibodies might get the upper hand again. It isn't unusual to overshoot the range - it's quite difficult to get the dose right, as your antibodies will have their own idea on the matter !
TSH often takes a while to bounce back, so there is nothing particularly unusual about this (and it is higher than it was a while back). You don't appear to have had FT3 retested - this often takes longer to come doewn than FT4, so may still be within rnge.
The question is, do you have Graves'? You say TPO and 'receptor antibodies' were both positive. TPO indicates autoimmune disease, and almost all people with Hashi's, and around 65% of those with Graves' test positive, although those with Hashi's tend to have higher levels than those with Graves'. 'Receptor antibodies' sound like TRAb - if positive, this indicates Graves'.
Four months seems quite a long while to wait for the next blood test if they still haven't got the dose of carbimazole quite right.
** there ar two approaches to treatment with carbimazole, a) titration, where they gradually reduce the dose as your results come within range, and b) 'block and replace', where they keep the dose of carbimazole high to completely block your thyroid's action, and then presecribe levo as a replacement. In the case of B&R, levo would be prescribed, but I don't believe this is the case here as the carbimazole dose doesn't look high enough to completely block your thyroid.
We need ranges on those results
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies to test for Hashimoto's and also 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. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)
If TPO or TG antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). If TPO or TG antibodies are slightly raised this can be due to Graves' disease
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's and Graves. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies, p,us TSI or TRab for Graves 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.uk/tuk/about_...
Private testing for suspected Graves - TSI or TRab antibodies
Hi there i hit hypo last december your endo would titrate your doses of carbi down so hopefully this will raise your frees, i am still on titration doses of carbi 15 months later , levo will not be introduced until you come off carbi and your levels show hypo, im on 2.5mgs every other day now but even though my frees are still nestling on lower range endo will not take me off it for another 2 months , my frees will not rise until im off these meds, yoy can be on carbi for upto 18 months with different doses and different regimes to take it. Good luck.😊
Thank you all for your replies.
My understanding on this has now gone from as clear as mud to semi transparent!
Have asked for all my blood test results to be sent to me and have booked a blood test next week for an update, and depending on results, hopefully a more prompt appointment with my endo.
I came to this site, as I'm sure lots of people do, because I feel so rubbish a lot of the time.
My BP was 156 over 105 and resting pulse 125 in May and now is 100 over 55 with pulse at 60.
I will try and wait patiently for that happy medium - thanks again!
unfortunately, if you do have Graves', it may be quite a long haul before you will feel back to normal, and the first few months are typically horrendous. I know this won't help much, but there are quite a few of us here who've come through to the other side, and now feel much better even if we aren't in remission yet !
As for patience - people who are hyper don't usually have much of that 
Hypo now hyper
I think I could be going from Graves/hyper to hypo
Should I stop carbimazole? 
Hyper to hypo
hyper to hypo and back
