I was eventually diagnosed with Graves disease post covid after been repeatedly told by GP that I had long covid.I had to go private through spire healthcare, thinking I had a heart problem, but was referred to endocrinology after blood test results.
After 1 year on carbamozole my thyroid results are all within range and have been off medication for approximately 10months.
I do still have blood tests every 8 weeks or so (all;comeback within range).
The thing is though, no matter what I do bi simply cannot lose any weight and i simply do not feel as i used to.
Does anyone else have these issues after Graves remission?
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Last bloods 2 months ago were:Tsh:0.44( range 0.38-5.33
Ft4:11.5(range 0.8-18)
Ft3: 4.7 ( range 3.8-6)
Last tsi back in January 1.93,
Had to stop carbamozole, even half 5mg tablet every other day was plummeting my heart rate and felt very very bad, no energy depressed etc. proberly hypo.
Results are in range, so dr will accept. Many not optimal in unless FT3 over 50%. So might be something to continue to monitor. Definitely do not need t0 remain on carbimazole.
Worth testing nutrients.
Gluten common issue with Graves, have that been tested?
Graves is a poorly understood and badly treated Auto Immune Disease which tens to only get diagnosed when the immune system attacks the thyroid and / or eyes.
Can you please share with forum members your blood test results at diagnosis - these will likely be a TSH + Free T3 + Free T4 results and ranges + the antibody blood result reading which is the medical evidence of diagnosis and this probably reads as a TPO - TgAB - TRab - or a TSI and a range - or a TSH Receptor antibody reading and cut off number.
Graves can present as either blocking or stimulating antibodies - and can cause a myriad of symptoms and sometimes like feeling you are on Big Dipper with none of the fun.
Graves is considered life threatening if not medicated as the thyroid hormones - T3 and T4 - can keep rising higher and higher and put undue pressure on your heart and a beta blocker might also be prescribed if this is of concern.
Otherwise Graves is treated with an Anti Thyroid drug which semi-blocks the T3 and T4 rising higher and higher and slowly as these thyroid hormones fall back down into range the AT drug is titrated down - otherwise you risk your T3 and T4 falling too far through the ranges and you experiencing the equally disabling symptoms of hypothyroidism.
Can you please share with forum members your blood test results when it was decided to stop the AT drug - and also your current TSH + T3 + T4 results and ranges - so we have a better idea where your levels now ' sit ' in the ranges.
When metabolism runs too fast as in hyperthyroid or too slow as in hypothyroidism the body struggles to extract key nutrients through food - no matter how well and clean you eat -
so suggest you arrange to get your core strength vitamins and minerals run as if low these can compromise your health further - so we need to see a ferritin, folate, B12 and vitamin D result and range so we can advise where' optimal sits ' -
just being somewhere in a range is not optimal with some ranges too wide to even be sensible.
We do now have some research that may be of interest to you :-
Yes - there is no need to duplicate information - we can all read everything that is written on this open page forum :
Do you have a range for the TSI -
What was your TSI and TSH + T3 and T4 levels at diagnosis ?
Your TSH level seems to have recovered as generally speaking this is likely down at 0.01 when first diagnosed - so I take this to mean your immune system has calmed down and your TSH now back under the control of your Hypothalamus - Pituitary - Thyroid feedback loop.
During this first phase of Graves your body is in a heightened state and will have tolerated higher than normal/usual T3 and T4 levels - hence the symptoms that first sent you to the doctor -
I'm not sure how long it takes after stopping the AT drug for the thyroid to fully recover ' normal function ' - if it ever does :
10 months on no AT drug seems an an acceptable length of time for your thyroid to have reset itself - the trouble is we never knew where, prior to illness, your T3 and T4 sat in the ranges to give you your wellness :
Your core strength vitamins and minerals need to be at optimal levels - for optimal health -
If your T3 / T4 are too low in the range for you and my guess is this is likely the issue -
this then sees you putting on weight - as now you have a ' slower ' than your normal metabolism which in turn makes you also feel that ' things are slightly off ' and not ' quite right ' :
Dieting is not recommended - nor is hard physical exercise - as these punishing regimes tend to further slow down metabolism and it all becomes a bit of a viscous circle -
Thyroid hormones do take time to stabilise - rest, be kind to yourself and try not to stress though fully appreciate it's much easier said than done.
I don't know what you mean by this, I was told initially that my antibodies were quite high.The thing is though, I was started on 20mg carbamozole and it worked very, very quickly.
Had to start reducing dose repeatedly after couple weeks.
Having antibodies ' quite high ' suggests there has to be a range / number - and I'm just trying to establish how high your TSI were in relation to the ' normal range / number '.
Yes it's quite normal to start on a higher dose of the AT drug - and then start titrating it down as blood test dictate with the T3 and T4 falling back down into the ranges.
Whilst with Graves there is generally a genetic predisposition it can occur ' simply out of the blue ' and yes, I'm afraid you are not the only one in this situation.
Graves is poorly understood as no two people present in the same way - though stress and anxiety common triggers - I was diagnosed way back in 2004 and had RAI thyroid ablation the following year which I deeply regret -
Having had to do a fair bit of work on myself to get where I am today - I realised 3/4 months before being diagnosed with Graves I was physically threatened and verbally abused by a man I employed as my assistant manager - so now think I have my trigger !!
was told the same, that the Pfizer probably triggered mine, she said I would’ve been genetically predisposed but believes this was what triggered it, I do wonder how many other people this has happened to. I have not been right since Feb/March 22, lots of weird things had been happening to me but I was told it was anxiety & stress causing things to happen me, I wasn’t diagnosed until beginning of Jan 24, this only really happened because I got really poorly around Oct 23 & could barely function, I was in a right mess. I lost a lot of weight initially, I have been on carbimazole for almost 6 months now, I’ve had lots of dose increases, I’m currently on 30mg which finally seems to be doing something, I managed to put 5lb on in the last 4 weeks, up until this point I have just lost weight then plateaued, I often think will I ever feel like I did before all of this happened to me. I still need to put weight on as my bmi is still underweight but I do wonder will I just keep putting in on & not stop. I don’t personally know anyone else with graves but I do have a friend that has hashi’s & one that had full thyroidectomy due to cancer, both have awful issues with their weight, it’s a constant battle that they just don’t seem to be able to win. It’s good news that you have stayed in remission, I really hope you get back to feeling like you did before xx
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