Have had my next set of blood results. Blood test was 17th July at 8.00 am.
After leaving several messages on Endo secretary phone finally given basic figures. She wrongly assumed I had already been contacted with them.
Just as a reminder I am Hyperthyroid with ( so I have been told) no autoimmune issues and had a scan 14th June which still haven’t had results of. Started Carbimazole in Feb this year.
TSH 5.6
T4 9.3 Range 7.00-20.00 pmol/
T3 4.9 Range 3.80-6.70 pmol/
I have had my Carbimazole reduced from 10mg to 5 mg per day.
Next Hospital appointment is 25th September 2019.
Just wondered what you think of these results please.
Thank you
Best wishes
Written by
Hugoo
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Ling I hope you don’t mind me contacting you again.
I have rung the Endocrine dept and found out that the scan showed Multiple Active Nodules. The report said nothing to worry about but will need radioactive or surgery treatment. Will get a letter in post next week. Have to wait until September to discuss.
You mean the blood test results? Is there something about the blood test results that puzzles you?
Multiple active nodules, with the emphasis on "active", mean these nodules are producing thyroid hormone which is causing your hyperthyroidism.
If you are interested in finding out more, this Mayo Clinic piece is pretty informative. It covers also treatment, of which your doctor, I believe, suspected active nodules could be causing your hyperthyroidism, and hence, put you on the carbimazole.
Feel different. Anxious and emotional again. Joints in one of my hands really hurt. See what the reduction in Carbimazole does although I expect it will take a while to adjust.
I agree with fibrolinda. My experiences with endocrinology did nothing to persuade me that they know what they’re doing, and I would have thought thr Carbimazole should stop at once.
I have Graves', but I've not really had a problem with nodules, other than a swollen thyroid when I was first diagnosed.
Although your FT3 and FT4 are still within range, they are pretty low, which is why your TSH is so high. When our thyroid levels are low, the pituitary gland manufactures TSH, which in turn signals the thyroid to make more thyroid hormone (FT4, which is then converted into FT3). As your thyroid levels get closer to where your body wants them to be (we're all different, but typically this will be around the middle of the range), TSH will reduce, typically to 1.0, or a bit less.
Your thyroid levels are obviously being kept in check by the carbimazole (which is what it's supposed to do). . Assuming they halved your carbimazole from 10mg to 5mg/day as a result of the tests you had done in July, it looks like they are hoping this will be sufficient to keep your nodules under control without your thyroid levels dipping below range. The reduction in dose may take a few weeks to take effect to the extent that you will notice your symptoms have improved. You should have another test prior to your next endo appointment, but if your symptoms get worse, paticularly if they are different - eg you feel cold when everyone else is warm - then you can ask your GP if the test can be brought forward.
This link gives you some info on treatment of nodules:
There are also people here who are/have been treated for nodules. It might be woth posting again with 'nodules' in the title. They will be able to help you with questions to ask your endo at the next appointment.
I have Graves and was on Tapazole for two years prior to TT. What has happened to you is that you are now somewhat hypothyroid because the carbimazole has reduced the hyperthyroid symptoms. You probably need to go off the carbimazole for a little while and should speak to your doctor. Some doctors will give you levothyroxine in the meantime for the hypo and others will let the thyroid function come back on its own with no hormone intervention, and then put you back on the carbimazole when you go hyper again. Very much an imperfect science to say the least.
Thank you. I have been told to go to 5 mg Carbimazole per day. I have asked for another blood test to be authorised in time for my September appointment but again haven’t heard back from Endo Dept.
I am worried about going further into hypothyroid.
I can understand why. I’m kind of surprised you haven’t been taken off it for a little while since you do not have Graves - but see how you do on the lower dose. I would certainly bring it up at your next visit.
I would say try reducing the Carbimazole just a little bit more, you seem to be going in the right direction, just a little bit too much suppressed, you are slipping into the hypo area. I believe Carbimazole has a pretty short half life (less than 12 hours - look it up), take your pill, first thing in the morning then map how you feel throughout the day, As the Carb wears off there should be a point where you feel OK, then match it against the time since you took the Carb. this will give you a very rough idea of how much you are overmedicated.
Oh, and in these early stages, do your own blood tests (in addition to whatever the doc orders - since they will probably be inadequate). Do not get trapped into the insane-making frustration of depending upon medics who have no interest and don't call you back. You need the pills, they can prescribe them, get them but the rest is up to you (sadly).
OK, half life of Carbimazole is about 5 and a half hours. So you should be hypo in the morning and frenzied again by the evening, on your current dose. Check it out accurately.
It really doesn't work like that. Even when I was on 40mg carbimazole/day, it made no difference to how I felt if I took the whole 40mg in one go, or split it into two doses.
Careful and accurate observations always "work like that". You were taking 40 mg in one go and in a split dose. That is the opposite end of the spectrum to that which Hugoo is finessing with her 5mg. You are still struggling with a sledge hammer, Hugoo has made it to a scalpel. If you do not carefully observe, record, and study your results it will take you decades to get well.
Your endo will almost certainly want to see new results at your September appointment, and a thyroid clinic is bound to have a process for this (eg I get given a new test form - sometimes more than one - at every appointment, then make an appointment to get the blood drawn at my GP surgery).
They did reduce your carbimazole by half. Your endo will almost certainly be more worried about you ending up hyper again (remember that thumping heart rate ?!) than dipping under, which should easily be resolved by reducing the carbimazole. 5 mg is a low dose, but it does give you some protection if your nodules start over-producing again.
Thank you for your reply, very useful to me and has made me feel a lot easier about everything. Yes the secretary is sending me out another blood form to have done before Sept 25th.
"Your endo will almost certainly want to see new results at your September appointment, and a thyroid clinic is bound to have a process for this":
I wouldn't bet on it! Your Endo. knows practically nothing about this condition (prefers diabetes, it's easier) and the "thyroid clinic" whatever that is, probably doesn't exist.
The Consultant phoned me at home to tell me about the nodules and explain the options available to me. He said we will talk further in clinic in September.
Hi Hugo, the lower dose of Carbimazole will probably help and, if so, don't be rushed into RAI treatment or TT until you have all the facts. At least you've joined this forum in time for some advice unlike myself who only found it after RAI and problems with Levo and a GP and Endo who thought that levothyroxine was a magic pill ☹️
Thank you Gingernut44. Absolutely terrified of having RAI. Doesn’t seem right doing this to yourself. Will have to see how bad the situation is in September. Thank you.
I agree ginger nut. I waltzed into RAI having been told by the endo I could not stay on carbimazole forever. I was on 5mg which was all I needed for years. Endo made it sound so easy zap and levo. All would be fixed. 4 years on and I am going through a really bad spell and have never been right.
Hi Lalatoot, Agree. I was told I couldn't stay on carbimazole for more than a year and although I was doing quite well on it was more or less pushed into RAI or TT. I went for RAI without fully understanding the implications, that was March 2018 and I haven't been well ever since. I have been undermedicated for seven months because my Doctor panics when my TSH goes below 2 !! I'm now experimenting with NDT without any great success at the moment but I am determined to get my life back one way or another.
I will have this decision to make in next few months. It appears from what has been said to me that it is not good to remain on Carbimazole too long and also bad for body if keep going Hyperthyroid. I really want to know what caused this to happen to me.
Will have to research now for next couple of months.
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