I hope everyone is able to enjoy some spring sunshine. I haven’t posted in a while as I have been trying to heal myself physically and mentally 😊
Since my last post when I was on 10mg carbimazole one day and 5 mg the next I had my bloods done which were tsh 3.95 (0.2-4.2) ft4 15 (12-22) ft3 4.4 (3-1-6.8). On this lowered dose I could feel 5% of my normal self creeping back , it has been so long I couldn’t remember what I felt like previously!! (I am still off sick from work) I kept a diary and I could see my worse days were the day after the higher dose. I spoke to my endo anout these results and he said great stay on this dose (to my horror) I asked him why this is necessary as I’m still feeling ill and unable to work so he agreed to drop to 5 mg a day my next blood test will be in 2nd week of April.
My gp and endo thinks my unwellness is the side effects of the carbimazole and I’m also experiencing anxiety, panic and low mood (Which I have never experienced before) or is this just Graves’ disease even though results r in normal range and it’s been controlled for the last 10months.
on previous dose drops I have felt unwell with extreme fatigue and palpitations (not racing just loud beating) which is what I am going through now! Has anyone else experienced this and any tips on how to deal or combat the fatigue it comes on all of a sudden (mainly around lunch time and last all day) and Is frustrating as I want to get back to work.
Many thanks
Lisa
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Lisa254
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Yes, it can. Your thyroid hormones are pretty low, in fact the T3 is not much above the bottom of the range. This is bound to make you feel quite tired, since it is like being hypothyroid.
The anxiety could be caused by surges of adrenaline, as the adrenals try to make up for the lost thyroxine. It will affect you more, because your body is used to high levels of thyroid, so it takes quite a long while to adjust. I was overactive for so many years that my body seems to demand more, it is as if it has re-set itself to higher levels than normal.
If you are having adverse effects from the Carbimazole, it should be evident from a blood test, because it will have reduced the number of blood cells, and you would be a bit anaemic and also be prone to infections like sore throats and tummy upsets. This link tells you a lot more.
If you are suffering from any of the side effects. You should tell whoever is managing your treatment, because there is another alternative, PTU, which some people, myself included, can tolerate better.
The reduction mentioned might be a help. It should certainly improve the number of blood cells, both red and white, and improve your fatigue. But it does take a week or two to feel better. I am sure it is hard, I know myself having been through it all, to be off work when you are used to being busy, but don’t try to rush it, your whole body is facing huge challenges at present, and by rushing it, the whole process could take longer.
I have been on carbimazole for 11 months now and have gone through a lot of blood tests over the last 6 months as I have been so ill and all the tests have come back in normal range. I have had all different symptoms mainly fatigue and nausea panick anxiety and low mood, dry eyes (no ted) My digestion has actually improved as I have gone soya dairy and gluten free.
my endo did mention ptu at one point but said it was not good for my liver and he wouldn't recommend it! I am starting to research it now as I really need to get back to work. Did you find you could go back to normal and work once you switched onto Ptu?
I was also reading into block and replace which my endo has not mentioned. He is more concerned at keeping my ft4 low due to my palpitations (I'm no longer on propranolol) I have an apt at cardio (in may!,) and he doesn't want them coming back to say my palps are due to my ft4. I am normally really fit (a runner) so I'm sure the palps are all related to this thyroid problem!
It was a long time ago, I was 13 when first diagnosed, never tolerated Carb so was put on PTU because ?I was vomiting and sick, had almost a year off school.
Went back and studied for my O Levels, but relapsed at age 17 so had a subtotal thyroidectomy at 18, just after my A Levels and leaving school.
OK for some years but relapsed in early 30s so had the rest removed at 37. I am now 73 and now have mild TED due to the fact that my Graves’ antibodies have never gone away. I have worked almost continually since I had the first thyroid op.
We are all different, some people find that carb sorts them out; some find that after a TT their antibodies go away; some, like me, have antibodies for the rest of their lives. The good news is that those on my end of the spectrum are not common.
The other good news is I have managed to work all my life, too.
That's good to hear you managed to lead a reasonable normal life... Wow that's a young age to go through such a horrible time 🙁
And using your journey and knowledge to also help us it's so kind. X
Lisa, you have possible symptoms of a reaction to neomercazole although the dosage for this to occur at is low. I am a male and recently developed a strong reaction when I went from 30 mg per day to 40 mg (for Graves' Disease). I have developed constant headaches, a massive sore throat and debilitating fatigue. I sleep every afternoon. My blood tests are all normal and this is often, though not always, the case, although liver function can be a bit off with normal bloods. In my opinion, neomercazole is a balancing act in terms of dosage. I felt good on 20 mg, fair on 30 and half-dead on 40 mg. My GD is not responding well to neomercazole treatment but it looks like yours is. Your specialist may take you off the neomercazole after 12 months (i.e. in a month) and then see how you go for a while. Perhaps half the people treated for GD stay in remission after stopping neomercazole, so good luck. As for me, I am about to take the radioactive iodine pill! Not sure if it is the red or the blue pill....
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