But, which test did you have? The problem is that so many doctors/endos don't know the difference between Hashi's and Grave's, and do the wrong tests. The tests you've included in your results are for Hashi's, and they are positive. And carbimazole is not the treatment for Hashi's.
I don’t know what tests (I’m trying to get up to speed on exactly this kind of stuff), I didn’t realise the points you mention in your reply. On my file it says April 2018, graves disease TRab, 15.6 (1.8). Carbimazole stopped 2/19. Relapse thyrotoxicosis. Carbimazole restarted. 20june 2019. The results in this post show more recent tests where I stopped taking carbimazole (as my FT4 dropped below range and my TSH went above range) and what my levels are since being off the carbimazole. I started carbi a few years ago (2016) when my FT4 was 100 (12-22) and my TSH 0.01 (0.27-4.2)
Ah, ok, so TRAB is a Grave's antibody, and it was very high. So, the odds are that you did have Grave's. Also, your FT4 was very high. But, the TSH doesn't tell you that much, at that poing.
24 Feb (stopped the daily 5mg carbimazole)
TSH 6.2 (0.27-4.2)
FT4 9.2 (19-22)
That's February 2020? You were very hypo at that point, with a TSH of well over range, and a very, very low FT4, and one wonders why they didn't stop the carbi long before it got to that point.
TSH 0.83 (0.27-4.2)
FT4 11.6 (12-22)
FT3 4.09 (3.1-6.8)
You're still hypo, not, in April, although your TSH is still low, but that doesn't mean very much. Your FT4 is still under-range, although a little higher than in February, and your FT3 is low in-range. So, if you have hypo symptoms, it wouldn't be surprising.
One thing you have to be careful of now, is that they don't just look at the TSH, because the TSH doesn't always reflect thyroid status correctly. The most important number is the FT3. When are you due your next test?
Thank you for your insights. I was left on carbi too long as the NHS just didn’t give me an earlier approintment... so I wasn’t checked and dose wasn’t adjusted so that sent my TSH high and FT4 low ok feb 2020. I just got my own private results the last two times via Medichecks. As NHS just don’t send me appointments that aren’t months away.
I will probably have another Private test done in 6 weeks?
Yes that was feb 2020. The results of this post are all 2020.
Okay I’ll do the next test in 4 thank you. I’m still trying to get to grips with all of this.
Well generally I feel well and much better than I did. All the palpitations and heat intolerance and other symptoms of hyper have gone. I just sleep a bit more in the mornings and have the odd episode of fatigue but on the whole I feel good. I work a lot at the moment so quite slow on weekends not sure if that’s hypo or just tired from the week.
It's probably hypo, because you haven't got much T3 in your system at the moment, after having excessive amounts. Hopefully, your body will adapt, and your FT3 will rise slightly, by itself.
Do you feel well? Your T4 is very low (under range) and your T3 not that much better. I'd want both higher in range myself - but I'm hypo not hyper so it could well be different for you ...
I can only compare to when I was on hyper and I don’t feel all of those heart racing and going a million miles an hour feelings. Im more sleepy in the mornings and evening but generally ok. Yes probably would be good to have my FT4 and FT3 higher. Thanks for your response.
If you don't know of the Elaine Moore Graves Disease Foundation website you might like to take a look.
This lady has Graves, as do I. It is an autoimmune disease that attacks your body, the cause is not your thyroid, but your own immune system.
Hyper phases when your body is running to fast, and also hypo phases when your body is running too slow can both have negative effects on your vitamins and minerals so keep an eye on your ferritin, folate, B12 and vitamin D as these need to be kept at optimal levels to assist maintaining your core strength.
If you can, get to understand how your body feels when you are hyper and hypo. If you have a smart watch of some description, get to understand the differences in your resting heart rate - it may not be medically accurate, but it should show trends.
Even if you do manage to sustain remission without carbimazole, the Graves' may well come back again at some point in the future. Once you're considered to be in remission or even stable on a maintenance dose of carbimazole, the tests will be much less frequent, and Graves' can take off pretty quickly, so it really helps to be attuned to your own symptoms.
It's difficult to get the dosage of carbimazole right, because your thyroid levels may fluctuate regardless. I had a (thankfully short) period of hypo symptoms while on a high dose of carbimazole, but the results of tests just a few weeks earlier (I was being tested every 4-6 weeks at the time) showed my thyroid levels were still high. After being hyper for any length of time, even being within range can feel uncomfortable, and being below range was horrible. I felt cold, and a fatigue that was different from the exhaustion of being hyper. It's quite difficult to explain, but if you think about it, I'll bet you'll find there were some distinct differences in how you felt.
I'm more used to looking at hyper results, but your TSH looks a bit low considering your FT4 is still below range, and your FT3 low-ish, although it's clearly recovering more quickly than FT4. I supposed the question is, are you actually in remission or was it simply that the dose of carbimazole was too high (5mg/day is quite often the maintenance dose, so it isn't as if you were on a high dose). It's useful to look at the trends as well as the individual results.
Thank you Valarian. Yes when I was still taking carbimazole and my FT4 fell well below range 9.2 (12-22) and my TSH went above range 6.2 (0.27-4-2) I felt like I was wearing a cooler jacket most of the time..and had to go to bed at 9pm very day. Thank you for the tip about the resting heart rate I will check that out.
I’ve learnt my lesson about leaving appointments too spaced out. After my first remission I wasn’t checked for 6 months and my FT4 shot up to 36 (12-22) my TSH back down it 0.01 (0.27-4.2). And the impact on my life in that time wasn’t good but I just didn’t think/realise should check sooner. NHS don’t give quicker appointments.
I’m hoping I level out now, I guess I have to wait and see.
I was getting quite anxious in heightened situations and rolling indecisive thoughts and some temper when hyper esp if I had alcohol. I don’t have those now thankfully and that feeling of being grounded is welcome. I’m not cold anymore but sleeping a little more but still have full active days.
Thank you for your advice, it really is appreciated especially when I’ve been suffering for years unknowingly but this kind of knowledge really can make life better!
Your Apr 2020 TPO level is still high and could be indicative that the Graves is not completely gone, and that with time and no carbimazole, there will be a relapse.
In 2018, your TRAb level was very high. It might be useful to have TRAb tested again. If it is still positive, it would indicate potential relapse without carbimazole. TRAb is an indicator of Graves disease activity.
Thank you for the education on this Ling. Only just learning that TRAB is to test graves. I will see if I can get that tested on Medichecks so I can have some foresight so thanks for the tip. I find that when my levels go the wrong way it can affect my quality of life in a slow way to start off with and then snowball so any opportunity to pre-empt, I will take it!
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Help with blood test results 
Help with blood test results please? 
Thyroid Test Results - Help!
Blood test results - Help Please!
Help with test results please!
