I've just been diagnosed with Hyperthyroidism and started carbimazole a week ago (40mg once a day which I take in the morning). I've had some serious issues with it since starting and at this difficult time I don't want to take up the doctors time when it's probably just normal side effects. When the doctor prescribed me the carb she said that it's a medication I should really read the sheet that comes with it, unfortunately the meds came in a bottle with no sheet so I'm very in the dark about what to expect.
I started them on Friday the 27th and a week later (this Friday) I started getting extreme fatigue (I slept for 20 hours that day) since then my fatigue has been a lot better (touch wood) but I've started being very sick and unable to eat anything because it makes me sick (this only happens in the evening though). I also get some heartburn. The symptoms that worry me most are that I've started getting agitated emotionally and physically. I know that people might think that's down to the lockdown but I'm quite used to being in my house as I'm mostly bed bound due to a separate issue (a pain condition and severe headaches). I've noticed that I'm shaking quite badly and have a faster heart rate than normal. There are a few more symptoms but it's hard to think of them all.
I also wanted to post my blood work as thanks to my degree in searching Google and therefore becoming an expert they seemed a little odd (but I might just be being stupid)
FT3 - 18.9 pmol/L
FT4 - 49.9 pmol/L
TSH - 1.18 mu/L
TPO - 6.9 KU/L
My TSH and TPO are normal but FT3 and FT4 are abnormal so I just wanted to get other people's opinion before I pester the doctor.
I'm sorry if anything I said doesn't make sense or is spelt wrong, I'm struggling to make sense of things and with my eye focusing as well as the jitteerieness of my hands.
Any advice would be appreciated as I'm really struggling with it at the moment and I'm constantly in tears as I don't know what to do.
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Kez1459
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When I started carbimazole for the first few weeks I thought it was not working due to feeling worse, I was prescribed beta blockers aswell due to my tachycardia, I was incredibly tired and struggled to sleep but I could sleep for most of the hours in a day.
I was very agitated and anxious for weeks,I had no appetite which I put down to how tired I was. The cycle was continuous I was too tired to eat but I was getting heart burn which did subside when family forced me to eat, I also had problems with diarrhoea before being diagnosed and when I was early diagnosed which I think was subconsciously putting me off my food.
The propranolol actually helped with the jitteriness and anxiety eventually.
Unfortunately it's not a fast fix it takes a while to let the medication actually work,
I'm so glad to know it's normal, I was worried I was having a reaction of some kind! Such a relief ☺️. I'm glad it gets better in time! When a review comes up I'll ask about beta blockers.
For us to know exactly how abnormal they are, it's necessary to put the ranges. Ranges vary from lab to lab, so we need the ranges that went with your results.
When were those blood tests done? Are they the results that got you diagnosed as hyper? You're right, they do seem strange. The TSH is too high compared to the FT3 and FT4. With those Free levels one would expect your TSH to be suppressed. So, this doesn't really look like Grave's.
Is TPO the only antibodies they tested? Before putting you on carbi they should have tested TRAB or TSI, the antibodies for Grave's.
There are a couple of things that jump out whilst reading through your post.
When the doctor prescribed me the carb she said that it's a medication I should really read the sheet that comes with it, unfortunately the meds came in a bottle with no sheet so I'm very in the dark about what to expect.
1) The pharmacist will know about this medication and it's possible side effects and how important it is that certain side effects are followed up urgently. The pharmacist was negligent not supplying a patient information leaflet with the tablets.
2) Your GP told you to read the sheet that comes with it, as this had been pointed out to you then you could have asked the pharmacist for it.
Nevertheless, we can find patient information leaflets about any medication online and here is the link to the leaflet for Carbimazole:
Have a read through and if there is anything of concern then ring your GP tomorrow.
Was TPO the only antibody test carried out?
Very often we get doctors assuming overactive thyroid but in many cases it turns out to be autoimmune thyroiditis, aka Hashimoto's, which is hypothyroidism caused by the immune system attacking and gradually destroying the thyroid. When Hashi's is present, test results and symptoms fluctuate and can swing from hyper type results/symptoms to hypo. Hashi's often starts with a hyper period so would give high FT4/FT3 results.
To confirm Graves disease (overactive thyroid) TSI and TRAb antibody tests should be done. If they weren't done then your GP should have referred you to an endo for the tests or tried to organise them if a referral isn't possible at this time. It's not a good idea to prescribe Carbimazole without having a definite diagnosis.
To confirm Hashi's then it's TPO and Tg antibodies. We can have negative TPO antibodies but positive Tg antibodies and this would suggest Hashi's, so it's important that both are done, not just TPO.
When posting results, we also need to see the reference ranges that come with them as ranges vary from lab to lab. However, we can see that your TSH will be in range, usually bottom range is about 0.2ish and top of range is about 4.2ish. But we can also see that your FT4 and FT3 are above any ranges we see here, even though ranges vary we don't see FT4 upper limit higher than 24 and FT3 upper limit higher than 7.
I'm sorry I didn't post the ranges, I didn't think that through.
I can confirm that the doctor only tested TPOAb in the way of antibodies (I'm sorry if I got that wrong above and I'm talking about an entirely different test, still new to this! 😬)
The ranges are as follows
TPOAb is 0 - 8 KU/L
TSH is 0.34 - 5.6 mu/l
FT3 is 4.0 - 6.6 pmol/L
And unfortunately the range for FT4 just shows as N/A.
When I have a review I'll ask about the other antibody tests. I know they set my review and blood test for in 3 weeks instead of 4. They didn't really say why, so I assume they're busy or something.
Thank you so much for your help! I'll have a look at that document now.
Although your result is in range, I think it's too high in range to discount Hashi's. I think your GP has been too quick to prescribe Carbimazole without having the other antibody tests done to confirm Graves.
Totally agree. She should not have prescribed Carbimazole without doing a test for Grave's. However, doctors often confuse Hashi's and Grave's, so it's possible she thought she was testing for Grave's! There is so little understanding of the condition that mistakes like that happen all the time.
Is this the only blood test you've had so far? Was that the blood test that got you a diagnosis of hyper?
These results were the second ones I got done as they wanted to make sure it wasn't an infection of the thyroid. They were done six weeks apart and the results only moved by a point or so each. There was a major mix up for my second results as they tested TPOAb and TSH but not FT3 & FT4 so this whole thing has been confusing and a bit of a mess! I think I'll call the doctor tomorrow for an appointment at some point this week to try to clear everything up.
I was wondering this as I noticed the sickness etc was coming as the medication would be wearing off in the evening so was thinking I could take 20mg in the morning and 20mg in the evening but I'll phone the doctor tomorrow and ask.
Thank you, I'll write these down and ask about it when I speak to her ☺️ I've been wondering about my vitamin d for a while so two birds with one stone!
TSH was likely too high for Graves ....normally a TSH would be extremely low with Graves
Early stage Hashimoto’s frequently starts with transient hyperthyroid results
Important to test BOTH TPO and TG ANTIBODIES for Hashimoto’s...but would have to do so privately. Nhs currently refuses to test TG antibodies if TPO are negative
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