I have been off carbimazole since June. I am feeling pretty rubbish, aches, pains and tiredness.My latest results are below, should I be concerned by the lowering TSH? My TSI antibodies were checked when I came off meds ( 0.37 and range was < 0.56). Much appreciated.
FT4 13.8 ( 10.5-21)
FT3 5.4 ( 3.5-6.5)
TSH 0.17 (0.35-5.5)
When I completed my block and replace treatment in 2013 my TSH was 0.56 (0.35-5.5) and my FT4 - 17.4 (10 -19.8). No idea what my T3 was it was never tested in the year I was being treated.
Ten years later my TSH is now 2.82 (0.27-4.2) T4 is 14.1 (12-22) I’ve got a T3 result but as I don’t know what it used to be I’ll not list it.
Over the years since I’ve been in remission my TSH has gradually increased. I think I felt better when it was lower but there no room for fine tuning in the NHS.
My antibodies were very high when I was first diagnosed but never checked when I finished carbimazole.
They were still high though and it wasn’t until I developed inflammatory arthritis about a year after my Graves’ disease that I decided to go totally gluten free and they came right down.
I think it can take quite a while until your body gets back to the ‘new normal’. Hope that’s some sort of help for you.
Thank you, yes I’m hoping that it’s my body getting back to normal, the “unwellness” has been so random since I came off meds.
It’s been a long time since I had Graves so I’m not sure how long it took to feel ‘normal’. Are your vitamin D, B12 ferritin and folates all well up in their ranges? That should help. I kept be8ng told that should I relapse I would get radioactive treatment which I knew I didn’t want and it was worrying me a bit so I spoke to my GP about it and was assured I would not be forced to have it and neither would I be refused treatment so once that worry was gone I felt more relaxed, just ate a healthy diet - goodbye McDonalds and Diet Coke.
If you are still worried about it and are not feeling any better speak to your GP or endo though.
Hey there again :
Graves antibodies can wax and wane throughout one's life - but currently your antibodies appear to be under the range and whilst your T3 and T4 are in range but you feel ' pretty rubbish ' so maybe we need to looking at this a bit further.
Graves has 2 main antibodies TR ab - a thyroid receptor blocking and TSI - a thyroid stimulating antibody and at any point in time, 1 of these 2 extremes of symptoms, either blocking - hypo or stimulating - hyper - can be in charge playing havoc with your thyroid and causing a myriad of symptoms.
There are also periods when these antibodies can cancel each other out leaving you feeling " " relatively well " for you :
When metabolism isn't running to your unique ratio of T3 and T4 you will have trouble extracting key nutrients from your food and that in itself can you pull you down, do you have any current results of your core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D as these need to be maintained at optimal levels for good health and well being ?
Graves is an auto immune disease for which there is no cure and all the AT drug does is block your own thyroid hormone production as when Graves decides to drive up and up your T3 and T4 this stage of Graves is seen as life threatening if not medicated.
Graves is said to be a stress and anxiety driven AI disease and you may like to read about how you can try and calm down your own immune sense response - elaine-moore.com and look into the holistic and complimentary sections of Elaine' website as well as generally reading up all around this poorly understood and badly treated auto immune disease.
Your Graves may burn itself out given time - but currently the NHS only allocate around 15-18 months with AT drug treatment and then, if the Graves peaks again, the suggestion is you have RAI thyroid ablation or if your eyes have become involved you have a thyroidectomy.
However the most current research is suggesting that the longer the patient stays on the AT drug the better the outcome for the patient - pubmed.ncbi.nlm.nih.gov/338...
Thanks for reply. Yes I did have vitamins privately tested and they were all well within range except vitamin d which was low but in range, so medichecks told me to take max dose and recheck in 10 weeks. I was on carbimazole for 2.5 years, I think the endo didn’t keep track because I never spoke to the same one, I was lucky in that respect. I’ll take a look at Elaine Moor’s website.
I never saw the same endo either but at my very first appointment told I was to have RAI the following year so presume no one even tried to find out if I'd be well again after the Carbimazole medication.
We need optimum vitamin and minerals and if t's of any help i know i need my ferritin at around 100 : folate at around 20 : active B12 75 ++ ( serum B12 500++ ) and vitamin D at around 100 :
There is a section on here entitled Vitamins and Minerals - should you wish to dip in :
Thanks Pennyannie, will take a look. My vitamin levels are a work in progress so to speak! My ferritin was 8 this time last year and I’ve been taking supplements since and it’s now a healthier 44, it’s slowly but steadily rising.
Ok - my ferritin a few years ago was at 22 - it does take time to build but started feeling the benefits once I tipped over around 50 :
Everywhere I researched suggested a ferritin over 70 for any thyroid hormone replacement to work, and although this nugget of information doesn't apply to you, I think a good level of ferritin is needed to support one's overall health and well being.
Onwards and upwards !!
The FT4 & FT3 are in range, but the FT4 is on low side whereas FT3 is disproportionately higher in range.
The TSH isn’t reliable once thyroid is abnormal and antithyroid have previously been taken. Even a healthy TSH is slow to respond and after being hyper a TSH can be down regulated.
This is supported by your results in last post where although your TSH was in range your FT4 was below range & you expect the see a TSH well above range.
Your doctors might think this is a sign you becoming hyper again but I think I be monitoring the FT4 & FT3 if they rise to top / over range, then it’s time to resume carbimazole.
How long were you taking carbimazole? Normally maintaining a low dose for over 2 years. Such as a dose of 5mg every other day is better than stopping & restarting but your very low FT4 is likely why it was stopped.
Don’t be too surprised if doctors go on to say carbimazole won’t work long term & use terms such as relapse, then suggest definitive treatment such as thyroidectomy of RAI.
Do your research and decide when you are ready.
I wouldn’t contemplate rai or thyroidectomy at the moment. The endo did discuss it and when he wrote to my GP he said patient would rather stay on low dose carbimazole if necessary so I was quite impressed!
Suggest you get vitamin D, folate, ferritin and B12 levels tested
Plus thyroid antibodies for Hashimoto’s
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
Yes I did get vitamins tested and all good except vitamin d which was in range but low ( I’m on high dose and will retest in a couple of months). I may get the cortisol tested though with blue horizon. I do have Hashimoto antibodies too so wouldnt be surprised if I developed underactive. Thanks.
Ferritin too low at 44 …..keep going ….at least over 70
Normally ferritin is high with Graves’ disease
Have you ruled out Hashimoto’s, by testing TPO and TG antibodies
What were B12 and folate results and ranges
Low vitamin D
Are you also taking magnesium and vitamin k2 mk7?
I did the medichecks test and the TPO antibodies were ( thyroid peroxidase) were positive 136 (< 34) but I wasn’t too worried because they were positive at 333 when I was diagnosed with Graves in December 2019, endo said I may develop Hashis at some point. Thyroglobulin( TG) antibodies were 111( < 115) so just about ok. I do take magnesium but I’m not sure if it’s the right one as I know some supplements are inferior, I’ll have to check. I don’t take vit k2 mk7, should I? Folate was 6.07 ( >3.89) and B12 active was 80.6 ( 37.5-150).
Improving vitamin D to around 80nmol or 100nmol by self supplementing
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via NHS private testing service when supplementing
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
Another member recommended this one recently
Vitamin D with k2
amazon.co.uk/Strength-Subli...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Vitamin K2 mk7
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) . This can help keep all B vitamins in balance and will help maintain B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement
Always worth trying strictly gluten free diet
But get coeliac blood test done FIRST
Just bought the vit d spray
Results on T3 - Advice please
Advice please on results
Advice on my results please
Advice on results please 
Advice on results please
