I am on a very low dose of carbimazole compared to most. 10mg daily (they want me on higher! Detailed in previous posts) however even on 10mg I have now hit a wall as expected *sigh* and it’s really messed up my energy levels and digestive symptom which it always does. (NB as mentioned in previous posts they want me on a higher dose - between 20-40mg to “hammer” the thyroid into doing “something” I am very resistant to this. They are very keen to get me off their books I feel!)
Anyway on Friday evening I took 5mg instead of 10mg. Basically out of laziness! I had one tablet left in pot next to bed and the rest were downstairs, in the morning I forgot. But I took my normal dose Saturday and Sunday etc. But didn’t make up the missed dose.
Since last night (Sunday) I have had the worst nausea! I haven’t vomited but it is horrendous. I’ve checked the usual. Hydrated, I’ve eaten etc but I feel dreadful.
Could missing one 5mg cause this kind of reaction?! Or is it just coincidence. As my drs always try to scare me into taking a higher dose by saying I will get vomiting and dizziness etc (knowing these are my fears!) if I don’t and are pushing me to have it out when I personally don’t feel my results warrant removal? But in all honesty I don’t 100% know what I’m looking at or for when I see my results.
I’ve googled to death and can’t find anything on nausea after one missed or one lowered dose. So any help gratefully received!!
Thanks for advice in advance
Results as of April 2019 (yes am due a blood test now but wanted to wait until end of the week so my missed dose wasn’t a factor potentially) I have been on 10mg since these results. And was on this dose prior to the blood test but reluctantly.
I have been on 10mg before and after a while it makes me feel bad so they then reduce to 5mg a day mon - fri and 10mg a day over the weekend. But the new specialist wants me pushed up to 20mg increasing to 40mg 😬 to “hammer” the thyroid. But my theory is when 10mg has proved to be too much taken too long how on earth will I feel on 20mg to 40mg! So I agreed to go back up to 10mg to begin with.
Exhausted, foggy headed (is only way I can explain it) lack of interest in anything. It’s almost like a feeling of misery when there is nothing to be miserable about! I call it being a subdued version of myself it’s like I have a black cloud mood all the time? And constantly tired and unable to concentrate. So when that happens my bloods usually show I’m closer to under active, they then lower the dose. Then I get a new specialist and it starts all over again!
Have you gotten your TRAb or TSI antibodies tested to confirm Graves?
If you don't have Graves, then u don't need the carbimazole and do not need to struggle so much over it.
If it's the nodule causing problems, then that has to be explored further. Carbimazole could be an interim measure to keep FT4 levels down while waiting and watching to see if the nodule grows or causes more problems.
And lastly, if it's not Graves, there's still Hashimoto's to rule out. TPO and TG antibodies for Hashimoto's.
A test years ago came back I didn’t have Graves but my specialist continues to write “symptoms consistent with graves” maybe I need to just flat out ask for these tests again. (Graves and Hashimotos)
If you have Hashimoto's, and the nodule is active and causing problems as well, this complicates things, and I think you want to go to a different clinic , see a different specialist, hopefully someone who knows what they are doing, because your current doctors are already remiss in how they are treating you, if in fact that test years ago was negative for Graves.
Thank you! They have only ever done blood tests but never tell me for what, but I do have the letter that says a test came back negative for Graves (I think this was in the beginning) but that my symptoms are typical of Graves! So I’ve been on carbimazole for 3 years now and have felt like crap one way or another ever since
I can’t imagine it would make that much difference. Looking back through your posts it all sounds a bit weird. I’m not sure how they can say you have Graves’ disease without ever having tested for antibodies.
If I were you I would pay for a Medichecks blood test that will test the lot including antibodies, minerals and vitamins. It might be expensive but at least you will see exactly how things are and you can ask for a doctor’s report - plus you will get results delivered to your inbox in two days time.
I use their home finger prick tests and they are good. At least that way you will know what is going on. Just don’t take B vitamins before you do it but it tells you that in the Medicheck instructions.
I took 20mcg carb for a month then 40mcg for two months five years ago for Graves (in remission now) but it was as part of block and replace treatment. I never had any problems with carb. I never had any scans or anything either - never ever had T3 tested which is why I now use Medichecks. Definitely didn’t have any sickness or dizziness.
Thank you for this! I tried to go through Bupa for a second opinion but they said no as I don’t have any “symptoms” as such currently but I will look into this medicheck thank you!!
It’s the main issue I have! My specialist is convinced it’s graves so therefore it is. And nothing else required to back this up! And their insistence I need to have it removed is getting really pressurised and everytime I decline they give me a new specialist to try and push me into it (usually alternates between good cop bad cop approaches) the most recent one told me I’m risking a damaged liver and bones by refusing removal and staying on carbimazole. But no one can tell me why if I have one over active nodule they have to remove the whole thing?!
We see quite a few Hashimoto's patients misdiagnosed as Graves
You really need FULL Thyroid and vitamin testing
Your FT4 is rock bottom...doesn't suggest Hyperthyroid
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If TPO or TG antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
You can have slightly raised TPO and/or TG antibodies with Graves too
But to confirm Graves you need high TSI or TRab antibodies
Private testing for suspected Graves - TSI or TRab antibodies
Low vitamins are especially common with Hashimoto's or Graves
Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested and TSI or TRab antibodies tested at least once .
Interestingly my GP (not thyroid specialist) has referred me for a celiac blood test but I have to do the “gluten challenge” for 3 weeks which is basically eat bread with every meal! (sounds more fun than it is I’m sure!!) before going to have that done.
Is a rock bottom FT4 bad?
My B12 comes back high so was told not take any multivitamin supplements (I used to to combat the low energy feeling!)
Thank you these sites are great. It will be worth paying the money if someone gives me a straight answer.
Well that sounds more sensible than overloading on “gluten” before a blood test! I did say isn’t a good way of knowing eliminating it and seeing how I feel!
My dog is gluten free! 🤣 so it could be a theme in our house!
When my Graves was diagnosed my TSH was <0.03 (0.35-5.5) below reference limit and my T4 was 28.8 (10.0-19.8) so yes, your T4 seems pretty low. I don’t know enough to advise, I just know that it’s nothing like mine was. Plus of course I had masses of antibodies.
I’d be tempted to go for a complete thyroid plus antibodies blood test with a doctor’s report from their doctor who has no previous experience of you and is only looking at your test results.
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so they then reduce to 5mg a day mon - fri and 10mg a day over the weekend. But the new specialist wants me pushed up to 20mg increasing to 40mg 😬 to “hammer” the thyroid. But my theory is when 10mg has proved to be too much taken too long how on earth will I feel on 20mg to 40mg! So I agreed to go back up to 10mg to begin with. 
Been told by docs to lower dose but scared as feeling ok ish!
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Can you ever lower dose on T3 or is TSH suppressed?
