Got a call this morning to tell me i have graves disease. Felt terrible since January - doc thought looking covid although hadn.t had it.
Can barely walk or get up from sitting, had ecg and 24 trace as palpitations so bad. Seem to be one of the odd ones that has put on 14lbs rather than lose weight, sweats so bad for months day and night, dizzy. All the fun stuff. Endo told Dr to put me on carbimazole 40mg starting today, and also been taking 20mg propranalol for 8 days morning and night. Made no difference to sweats yet. Really happy to find a support community.
Got my blood results
Trab 6.2ul - no range on results
TSH <0.01mul - range .35 to 5
FT4 27 - range 9 to 21
FT3 4.4 - range .9 to 2.5
And the belter
TPAb 496 ! - range <6
Any advice or thoughts on those results? Mild, moderate or severe Graves?
Thanks 🦋
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MsPeartree
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In terms of levels your FT4 isn’t extremely high as it’s not unusual to see Graves reach 3x normal level.
Your FT3 is quite high for range given, was this definitely free triiodothyronine (FT3) as range looks low.
Trab is likely quite high by most ranges I’ve seen. So if positive it confirms Graves.
I’ve seem many results on this forum and I would say your levels are moderate but if they risen quickly your symptoms can be very debilitating.
Doctors sometimes judge severity solely by levels but that’s not entirely suitable.
The carbimazole dose seems high & what you would see someone with very high levels be given. So ensure your levels are retested after 6 weeks and adjusted to prevent you going hypo thyroid.
I had elevated hyper levels (nodule) which was missed for many years & I also gained weight. Happens in 10% of hypers. Uncontrollable appetite & zero energy. I think once levels go sky high the metabolism causes weight loss.
TPAb 496 ! - range <6
There’s a number of antibodies. TPO & TRab & also TGab & TSI but TPab isn’t one I’ve heard of, is that’s TGAb? (I’ll list the antibodies at end)
Carbimazole takes time to have a effect & bring down level, the cause of issue. It works by slowing production on new hormone but the existing stores remain until the body uses them up.
Propranolol will help with symptoms (not route cause) so may only be need temporarily. Reduce dose slowly once you wish to stop -never abruptly-
Also post on main thyroid forum & many member on that one.
TPOab (Thyroid Peroxidase antibodies)
TGab (Thyroglobulin antibodies)
TPO & TG appears with BOTH Hashimoto’s & Graves. Hashis causes transient hyper prior to under active. Graves continuous Hyper.
If Graves (continuous hyper) is Suspected must test either:
Hi. Thanks for your reply. You are right the T3 is total t3 not free. Read the results wrong and the 496 is TPO ab. Missed the O out. Not had TG tested. The TRab is 6.2. I had bloods done in February and everything was ok. But i just got worse and it is only because my gp wanted to do a blood test before going on HRT that this was discovered so think it has been caught relatively early which i am grateful for x
Carbimazole reduces new thyroid production but can’t do anything about thyroid hormones already stored in the body. It can take quite a few weeks to work through this, and until then you probably won’t feel much better. Typically, you will then feel quite a lot better very quickly, but treatment for Graves’ is quite a long haul, and you are likely to be in Carbimazole for 12-18 months before they try stopping treatment to see if your Graves’ has gone into remission.
The dose of Carbimazole seems a bit high relative to your FT4 level but so do your symptoms. I’m not used to reading TT3 levels (usually we have FT3 tested) so possibly these are particularly high. As PurpleNails has said, with that level of Carbimazole you should be retested regularly, perhaps every 4-6 weeks.
TrAB confirms you have Graves’.
TPO confirms you have an autoimmune disease, in this case Graves’.
There is some useful info here, but obviously post again if you have more questions.
Graves Disease is a poorly understood and badly treated auto immune disease said to be driven by stress and anxiety though can just happen ' out of the blue ' or can be triggered by a sudden shock to the system like a car accident or the unexpected death of a loved one.
There is likely a genetic predisposition and something may have happened to trigger your immune system to attack your body and generally when Graves attacks the thyroid, or eyes, the symptoms are such, that you end up at the doctors.
There is no cure for Graves and all the Anti Thyroid drug does is buy you time for your immune system to calm down and the AT drug will be titrated once your T3 and T4 levels come back down into range and into balance.
The symptoms can be very scary and if your heart is running 19 to the dozen there are beta blockers prescribed to try and make you more comfortable during this first phase of this auto immune disease.
The NHS currently allocate around a 15-18 month window with the AT drug with the hope that your immune system calms down and your body resets itself.
The most recent research however is suggesting that the longer the patient is on the AT drug the better the outcome for the patient - pubmed.ncbi.nlm.nih.gov/338...
You might like to dip into elaine-moore.com as I found Elaine's website the most complete of all I researched particularly the sections of alternative and complementary treatment options.
I too have Graves Disease and was given RAI thyroid ablation back in 2005 and deeply regret this treatment option and now, to be as well as I can, I self medicate with full spectrum thyroid hormone replacement.
To reply to a particular person you need to press the icon alongside their reply to you as then they are notified to come back to read something.
If this was for me, thank you, and ask away, as we are here to help and support you in any way we can.
You might like to dip into Thyroid UK which is the charity that supports this forum where you will find ' a;ll things thyroid ' including a list of symptoms both hyper and hypo as it does get confusing working out where you are in this seesaw of symptoms.
Rest up, be kind to yourself and try and relax and do things you enjoy and be selfish with your ' you ' !!!
hello there, I have graves disease and was diagnosed in 2018.Like you I had soldiered on for probably a year before going to the GP.I thought it was the menopause.When I was diagnosed my FT4 was 57.I was put on 40mg carbimazole per day .I was also prescribed proprananol 20mg 3x per day to help with tremors, sweating and racing heart.I was able to stop this once the carbimazole started to work.It reduces new FT4 production but the excess already in your body can take a while to get used up.That's why you don't notice an immediate effect.This site has been invaluable to me.So much good advice , knowledge and experience.It helps to talk to others who have gone through the same experience.Just an extra thing I've learnt is that everyone's thyroid experience is different and what works for one may not work for another.Best wishes and I hope you feel better soon.
Hi. I to have Graves’ disease. My case was severe compounded by being t3 dominant meaning I would get 60% of my t4 levels instead of 20-25%. When my t4 would get under the range my t3 would be in the range and the drs were happy. I felt suicidal. So after 30 months I had a total thyroidectomy. I could never get my levels balanced and I was a complete wreck and on a very destructive self harming path. I found graves took me psychologically and physically. Post thyroidectomy I feel very calm. As in an inner peace. No more psychological thoughts of self harm. More me. I am only 5 weeks post thyroidectomy and I am impatient but I feel so much better. And I am hopeful. God I never thought I would write that. I am hopeful for the future. So if nothing else you wil read one positive story for a total thyroidectomy not that I am advocating that for you. It took me 30 months to decide to go to surgery. Everyone’s journey is different and the cut off wheee you say “enough is enough” is different for all of us. No judgement. No right no wrong.
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