You really need to know if you have the type of antibody that stimulates the TSH-receptors. Or not. Might see TRAB or TSI in test results.
Your previously posted results also did not include FT3 - which is what really matters.
Suddenly going from below range FT4/over range TSH to very high FT4 is something that needs to be explained. It is unsatisfactory to assume Graves without confirmation.
Where is the evidence base for assuming Graves without antibody testing? Funny how they are dead keen on evidence based medicine until they have to do something to properly confirm a suspicion.
When I was diagnosed with Graves my Free T4 was 28. 6. (10.0 - 19.8) way over the range - and my TSH was < 0.03 (0.35 - 5.5 ) Below low reference limit. I never had T3 checked so I don’t know what that was but as your T4 and T3 are within range I think you need to be checked for thyroid antibodies to be sure you have Graves Disease - my thyroid antibodies were sky high. It’s the presence of antibodies that confirm Graves.
Hiya, thanks for all your time and replies, I had my antibodies tested a couple of weeks ago and they came back confirming I have graves this morning, so for once, Doctors’s assumption was right. (Very rare)
So Got told to stay on 20mg daily of carbimazole, stop beta blockers as my T3 and T4 are in good range, and hope my TSH rises again as it’s (<0.02)
What helps the TSH to rise? Should I stop beta blockers now for sure? What’s FT3?
Now I have graves what shall I do? As I used to be a fairly fit guy, playing football 3 times a week, to now getting out of breathe just jogging up the Stairs to see my children! (I’m 40yrs old btw)
Hi farrantino, if you haven't had any replies to this comment, it's probably because no-one has seen it. I'm afraid you cannot give general replies, like this, on this site. If you want to reply to any one person, you need to click on the 'reply' button, under the comment in question. The person will then get notification that you have replied. But, I will notify the others, here : Nanaedake , helvella , Fruitandnutcase , DoubleM , Alexkjones , Mouldyoledoll .
So, next question is: which antibodies did they test? As I mentioned above, many doctors cannot tell the difference between Hashi's and Grave's, therefore you need to know the name of the antibodies to confirm the disease. Was it TPOab? TRAB? TSI? Or what,
Your doctor, I'm afraid, is already proving that he doesn't understand much about thyroid by insisting that you stay on carbimazole until your TSH rises when your FT4 has already dropped to mid-range! And your FT3 is now well below the top of the range. It does not matter where your TSH is, it's the Free numbers that are important. A suppressed TSH does not, but itself, make you hyper. And, people who have been hyper for a long time often find that their TSH never rises, because their set-point has changed! How long is he going to insist you try to raise it? Until your Frees are below range, and you are becoming very ill?
What you need to do now, is find a doctor who actually knows something about thyroid.
greygoose has said pretty much exactly what I would have said in a response.
We might speculate (fancy name for "guess" ) why TSH doesn't readily and immediately rise after a period of being hyperthyroid, but we really don't seem to know exactly why. The important issue that it is VERY WELL documented that TSH can remain low or suppressed for a long time after thyroid hormone levels have reached acceptable levels. The fact of low or suppressed TSH in these circumstances should never set off a chase after making it rise. That way lies ruin and madness - you just have to let things happen when they happen and focus on FT4 and FT3.
You need to ask for a copy of all your test results with their lab ranges.
When I was being treated I used to keep a diary with a note on how I was feeling each day - just odd words , like ‘really tired’ or ‘ache all over’ type of thing.
I also noted down the doses of carbimazole and later levothyroxine and tied how I felt into the doses I was taking. I was able to use that to realise that every time I started to feel bad again it was because I needed an increase in my levo
I kept the results of all of my blood tests there too and used it to jot down any questions I had for my doctors - actually they were for my endo - once I startedwith my endo my doctor didn’t really want to get involved with that treatment.
I never took beta blockers because I am asthmatic so you can get better without them, they just calm down your madly beating heart.
I went from being really energetic and doing loads of long distance walking to being permanently exhausted, a terrible tiredness that seemed to reach right through to my bones. Fortunately for me I was semi retired (aged 64 at the time) and my kids have left home so I could rest as much as I wanted.
The tiredness will eventually pass and you will feel normal again although it took me a couple of years before I felt that I really wanted to do a long walk so I wouldn’t plan on being back playing footie in the immediate future. Think more along the lines of letting them tell you a story while you recover from the effort of jogging upstairs to see them.
I think recovery just takes time. I was treated with block and replace and was told on my furst endo appointment that treatment would take a year - it did, exactly a year. I don’t know how long it takes for people who are only taking (and titrating) carbimazole.
I don’t remember ever being told they were trying to increase my TSH sounds odd but I never asked about that all I knew was that the carb was stopping my thyroid from over producing and once they’d stopped that happening they gave me the levothyroxine to replace it.
I’d say you will need to be very kind to yourself and accept that this is how you are going to be for a while. You are really quite ill when you have Graves although I lost so much weight I actually looked good - on the outside, inside I felt rubbish!
I can’t remember if I’ve asked but are you seeing a proper endocrinologist who specialises in thyroid problems rather than a diabetologist?
Thanks again guys, for your time and help on this forum and my condition, I don’t feel so alone now
I do see the endocrinologist at Addenbrooks hospital (NHS) and he’s the guy that told me the F3 and 4 are good and the TSH will stay low but hope it will come up and to stay on carbisamol to keep the graves at bay the best they can. Now in range to stop beta blocker and that’s all basically he said. Will call tomorrow and ask for the actual lab test results and post them on here for you guys to evaluate as you guys sound much better than he does already, and more willing to help and understand too - for which I thank you all so much
That’s where I was treated. They were really good. When I read on here about how some people are treated by their doctors I’m quite shocked and really thankful that I went where I went. Everyone I saw was knowledgeable, kind and polite and always introduced themselves - even if I promptly forgot who they were.
My only quibble would be that I never saw the same person twice but that’s probably what you can expect in a big training hospital. As they used to see my blood test results a week before my appointment I figured my case was straightforward enough not to need to see the same person. That and whoever I saw towards the end constantly telling me that RAI was my option should I relapse!
Good luck with your Graves, keep rest8ng and relax8ng whenever you can😉
Btw I’m on 10mg of prednisone oral steroid daily due to my colitus I have and adrenal glands are not working. This helps me keep well and have some energy for basic everyday things and I have an office job so mellow not hard work physically.
I’m getting headaches again for the past 3 days, do you think I may be going back to underactive (what I was before) and maybe to stop taking the carbisamol? (Will ask the doctor too but thought I’d ask you guys as I’ll be week before I get a chance to speak with a doc!)
Could this graves of been like an attack of some kind? I’m so worried 😟
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