Since lowered to 5 mg the last few days haven’t been great. Went on 5 mg on 1 July. So … I can tell a little anxiety/nerves rush through body, low mood weak in body and broke down a few mins ago feeling overwhelmed again. I’m thinking maybe 5 mg not enough. I have also stared iron and folic acid - but don’t think they cause this. I’m just so worried - I feel like I’m living in a nightmare. As the day goes on symptoms lessen, I sleep (usually ok) but when I wake I have an uncomfortable feeling in my joints - and that I need to move - has anyone else had this? At the start of taking carb in March this year - this feeling on a morning was unbearable I had to get out of bed at ridiculous hours and my husband used to take me out in the car….. I pray I never feel like that again. Anyone else felt worse on waking? Now on 5 mg - it’s is nowhere near as bad but still there.
I am so worried that 5mg not enough and need to go on a higher dose -re side effects and the hair thinning.
I’m fearful of my endo appointment as I know he just wants to discuss other options - said this as soon as I said about my hair. I feel scared of the people who should be helping and supporting me - I don’t feel like a person to my endo. My gut feeling is to continue with carb even with the hair thinning.
Then of course my meltdown today after reading things ( my poor husband - he did give me hugs) - consisted of - ‘if carb doesn’t work, or no remission if it does go into remission and then comes back, it makes me feel unwell, I’ll have to have other treatments - rai don’t really want re somethings I’ve read, surgery - don’t want and if I did what if the medication I would rely on makes me feel unwell and I don’t have a thyroid to ever feel ok again?’ My goodness - my mind was at high speed of total fear. I know I must stop reading things but I feel as though this is how it will happen - I feel it’s a waiting game at this moment. I wish I could sit down with people to really discuss things / no groups near me though.
Question: if my graves antibodies are gone - would I still have the symptoms ?? When I say how I feel - low etc some of my family have questioned this as to if it’s gone you wouldn’t have those symptoms.
Also,, if your thyroid levels are in range why are you still unwell with the symptoms?
Sorry for the length of this post - and yes like another person said on here to ‘put on my big girl pants’ I do try but just can’t at the moment.
Sam x
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SamB22
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Sam, Our bodies want to survive. When we go hyper or hypo the body adapts and changes so it can continue working in extreme circumstances. Medics speak, for example, about neuroplasticty of the brain and how it can rewire due to circumstances. With the carbimazole your blood hormone levels have changed from the extreme hyper but the rewiring and adapting elsewhere in the body and brain have not yet totally happened so things feel wrong still.
Remember this is not the real you. I used to tell myself "You have to sit this dance out till things get better."
Hi Sam ok lets try and help you 'see the wood for the trees'
first ..... your hair loss. i know how important hair seems , it's everything to us and encompasses everything about how we feel about ourselves.... but hair isn't important , not at the moment.
Having unstable thyroid hormone levels will cause your hair to do all sorts, including falling out .. and your hair will probably only improve once your thyroid hormones levels have been stable for quite a long while .
your levels are not stable yet ,
So you have to find a way to deal with it and just for now, accept it ... you can't do anything about it. You are not in control of it. And you panicking about the hair loss is what is driving the endo to push harder for definitive treatment. but there is no way to know if removing your thyroid would improve the hair situation any faster than getting your thyroid stable by carefully/patiently adjusting the carbimazole dose .
It's not possible for you or anyone to know if it's the carbimazole that is making your hair fall out , or if it's the effect of your unstable thyroid hormone levels.... but it is quite likely to be the unstable hormone levels.
So just for now . forget the hair , tell yourself "it will grow back when i'm stable" and find a scarf/ hat/ whatever so you can face the world in the meantime.
Sorry .. i realise that's a bit blunt ... but it's true . you need to concentrate on balancing the thyroid levels with carbimazole , and then making the best decisions for your future with or without a thyroid ..... your hair is secondary to that .
if you feel well in yourself , you will cope with life with however bad your hair is .
if you feel unwell in yourself , no amount of beautiful hair will make you well enough to go out and enjoy life.
As for the 5mcg maybe being not enough .. well it's possible you may be right , or you may not , we can't know because you only recently lowered carbimazole to 5mcg , and so we don't yet know what your current levels are like , because you only changed to 5mcg carbimazole on the 1st July, and they did bloods on the 5th . and you haven't seen those results yet because the endo is away .
5 days is not really long enough to see the effect of that 5mcg dose, so those tests will probably need repeating when you see him.
Have you had any luck getting a date for your next appointment with him ?
That is what you need to focus on now ... getting your next appointment sorted ... getting clear information about your previous blood tests results on 10mcg , and what your levels are now on 5mcg..... and telling him clearly that you do not want to be rushed into any decision about definitive options.
this advice is not meant to be as harsh as it sounds... i do undertsand how upsetting and terrifying this all is, honestly
Thank you - it’s not harsh at all it’s helpful. I agree about hair situation. Just when I feel those symptoms again which I’m terrified of - I had a meltdown and I’m scared that this reaction again is cos 5 mg not enough. I will def ask for another blood test to see what is going on.Thank you again for replying and helping x
Ps so if my thyroid results were in range except tsh still not budged (last results) does that mean my hormones are not stable? I have no idea about this
No appointment through yet- I’ll phone the secretary tomorrow - what a chore that is - 3 times she’s not sent a letter to me!
Thyroid hormone stability ~ ANY significant change in thyroid hormone levels will take ,at a minimum, weeks.. and more likely ...months , for your body to adjust to.
and that is assuming it is just one change in level that doesn't shift again a few weeks later.
for example , i take levo .. if i adjust my dose by even a fairly small amount , then the next approx 4 / 5 weeks well feel 'all over the place' and all sorts of things will feel wrong and changeable during that time ... and then hopefully i will gradually improve again after that point as my body gets used to being stable at the new level (assuming the dose change was the right thing to do )
and that is what happens with just a very small /controlled/ single adjustment in thyroid hormone levels....
by comparison , your recent changes in thyroid hormone level have been:
a) large ,
b) sudden ,
c) we don't know if they have actually 'finished' changing yet, or if your graves is still playing silly buggers with you and and actively twiddling your hormone levels while your endo tries to keep up with those changes by adjusting carbimazole dose (in between holidays)
So, if a small controlled change in T4 dose with no other complicating factors like graves takes me at least 4/5 weeks to settle in to , and start to feel stable with .. then you can see why i describe what you are dealing with is 'not stable' yet.
Even if this 5mcg dose is actually giving you perfectly good control of your thyroid at the right hormone levels and you are eventually going to feel ok on 5mcg ... you could still expect to feel pretty naff and all over the place for the first few weeks of taking 5mcg .
Its not just the fact that the hormone levels were wrong that causes the effects (like hair loss).. it is the process of change itself that causes the problems, and having a big change takes a long time to settle down from.. even after the level is 'right' again you still feel wrong for ages... and your hair , and your brain and everything else don't start to function properly again until they feel re-assured that their 'hormone' world has stopped spinning and is STAYING stable.
Friends and family will not understand this ... they think "you are back in range now ,so you're 'better' right ? " ..
nope!
for an effective demonstration, ask them to spin round and round and round on the spot for a minute , and stop suddenly ...... then you say , "but you've stopped spinning round now , so you're 'better' right ? "..... as they stagger into the sideboard
perhaps that will help them understand where you are at .
😂😂 I will be asking them to do that - what a brilliant way to show them - instead of having to defend how I feel! Thank you for an excellent explanation of being stable, I understand now. Bless my husband he was saying to give it time changing to 5 mg I was having none of it - but hoping he was right x as always thanks x
I agree. I lowered my dose to 2.5mg a day and then two months later lowered it again to 2.5 every other day and both times I felt hyper for about a week after changing. Both times I almost went back to the previous dose but I'm really glad I didn't because now I'm feeling really good. Like everyone says, it takes a bit for our bodies to adjust!
Hi SamB22. I am so sorry you are going through such a horrible time. It will get better!I was diagnosed with Graves in 2010. It’s been a journey and getting support from groups like this one have really helped me. Plus good medical support from GP or an endocrinologist.
I have also found yoga and meditation unreadably useful. Sending love
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I really need some support - please :-(
Feeling a bit lost again need some guidance please
Need some advise regarding Carbimazole, Graves disease
Hypothyroidism, with some hyper symptoms 
