So I’ve messaged here a few times but backstory again is I have hashimotos diagnosed 2 years ago after my first birth, now 6 months after my second birth I’m now suddenly hyper with all the awful symptoms, feeling this way since January with no meds and it’s getting to point now where I don’t think I can take it much longer. Had iodine scan last week which showed graves. Dr said would start me on carbimazole but need more blood tests done first which could take another 3 weeks. I’ve been on propranolol now for 5 days 40mg supposed to take twice daily but have only been taking once, today I had severe stomach tenderness and pain that’s radiating round to my back and suspecting it has to do with these meds. Anyone else had stomach probs on these meds? Also so bloated suddenly. The main symptom I can’t take anymore is my mental health that feels like it’s getting worse by the day, my memory is getting to the point of being dangerous now, today I opened the window fully onto the balcony so I could put the washing out to dry and walked to another room and forgot all about it being open when my two year old is running around the house. Could have cried when I realised! Also the anger I feel from 0 to 100 so fast is scaring me and something I never had before, my vitamin d is severely low and everything mixed together I just feel like I’m really struggling with daily life now especially while looking after two kids. Hoping someone can tell me I’m not crazy and this is all related to graves and will hopefully disappear once on meds?
Graves...feel like losing my mind! : So I’ve... - Thyroid UK
Graves...feel like losing my mind!
In my opinion the doctors need to investigate why from hypo to hyper. What is the cause. Are the doctors 100 per cent certain it is Grave's. It could be thyroiditis an inflammation of the thyroid. Thyroiditis switches from hypo to hyper. Just look into it. In my opinion again doctors tend to start with 40mg too high without having all the facts in front of them. Perhaps you may want to reduce from 40mg to a lower dosage and see how you get on Just a thought. Listen to your body.
The graves diagnosis came from the uptake scan, my thyroid basically took the whole lot and showed up as pure black which showed the whole thing was hyper, in my understanding from the endo thyroiditis shows a different image and result from uptake scan, that’s why he wanted to do that to rule thyroiditis out. I was also thinking 40mg was a bit much to start off with but to be honest even with that it’s not completely dulling my symptoms I still feel the palpitations after taking it but I just don’t want to be taking it twice daily especially if this is the stomach problems after only a few days.
You need to have blood test to confirm Graves. Initially when I had scan it showed Hashimoto's [hypo] and my blood tests confirmed it was Graves [hyper]. Graves its an autoimmune unfortunately attacking the thyroid. As for your medications the dosage should determined by your blood test results. Feeling the way you feel sorry to hear any stress should be reduced to a minimum, vitamin D3, Magnesium, I-carnitine all helps with Graves taken daily. I-carnitine min 1000mg a day could help reduce the symptoms.
Also please have your eyes tested.
yes I need to do the eye test I’m terrified of having problems there. Will look into those supplements I didn’t know about the l-carnitine thanks
Keep in mind though, that Blood Tests do not tell the whole story if one is thyroid hormone resistant. (Blood tests tell the amount of thyroid in the blood, not the amount that is being taken up by the thyroid receptor sites and channeled into the cells.) Doctors here (US) think that thyroid hormone resistance is rare. It isn't.
Yes this is true, my endo seems very clued up he told me even if he tests the graves antibodies and they are negative it isn’t necessarily the full story as he said my scan shows it clearly enough by how hyper it was. Even when I saw the pic of my thyroid and looked on google it’s identical to the graves thyroid pic.
Go back to your doctor and ask for 80mg slow release propranolol. Makes a big difference. You only have to take it once a day and it really keep the symptoms under control in a level way.
If you are taking to non slow release stuff you really do need to take it regularly and at the time you should be taking it. It only wires properly if you take it properly.
With the non slow release tablets though I found my symptoms were going up and down as the propranolol wore off and I needed more. That’s mainly why the SR ones were better and I also didn’t need to keep remembering to take them.
Before I had graves diagnosed, I thought I was losing my mind! I was a mess and think back to those days with horror! Good news is, once I was on treatment, I felt so much better very quickly. I was on propranolol, can’t remember dose but it was twice per day, until I got treated by an endocrinologist. The propranolol did ease my symptoms quite a bit though, and without side effects. Best wishes.
Yes it really is horrible isn’t it. I think for someone who hasn’t experienced it it’s very hard to describe and understand. Got to hear that the meds helped!
No, you are not going out of your Ming - it is the Graves and you will go back to normal once your thyroid is sorted.
I know it is a slow process but I’m surprised it is taking them so long that do blood tests and to get their results back. When I was finally diagnosed I saw a doctor on a Wednesday, had the bloods d9ne on the following wing day and came home fr9m a day out on the Friday to f8nd a message telling me I had a very overactive thyroid with antibodies, that there was a prescription for carbimazole at reception for me, an appointment had been made with an endo and I was to go back in four weeks for another blood test so it carve done and results back quickly.
I know what you mean about anger. I was the same and I didnt have a new baby and a toddler. I don’t ‘know if you are seeing an endocrinologist, I imagine you must be if you have had a scan but I’d say you need to get started on carbimazole soon to start reducing your thyroid overproduction, you’re u won’t feel well until something is done about that.
Don’t know if you can get any help around the house but if you can I would try and rest as much as you’d u can - I know difficult with two little children - and let someone else do as much as they can for you. You are really quite ill with Graves even if you don’t look it.
You’re not losing your ur mind though and with the correct treatment yu will get back together normal even if you don’t feel as if you will. Make sure they check your vitamins D and B12 as well as ferritin and folates, you u need them well up in their ranges to feel good and always ask for a copy of your results with the lab ranges on them. (((((( big hugs))))))’ I can imagine how you feel.
Yes the whole thing seems to be taking time but it’s my fault too it’s been a hectic time for my family we’re in the process of moving country and I switched endo due to moving so it was kind of like starting at the beginning again. Hoping now with this one things can move quicker but he was hesitant to start carbimazole until my labs came back as he said it’s a heavy drug and he needs to make sure my bloods are ok first before starting?! Not that I have any other options though so I’m not sure why I can’t just start it in the meantime anyway!
I thought I was having dementia symptoms with Graves... everything you described is classic hyper symptoms. You urgently need to see an endo. Ask your Gp to consult via telephone today so you can start meds. (Carbimazole) don’t leave it another day longer. Get as much help as you can from friends for now. Hugs it will get better.
Omg this is what my symptoms are like, did you ever start to have seizures or symptoms similar to epilepsy at all?... I’ve been goin out of my mind with symptoms & my GP just will not treat me, I have hashimotos & my TSH was last at 3.2 (within Range) although my optician has written to ask to be referred as thinks graves eye disease. My TSH keeps fluctuating tho so my symptoms change with that too ... could all my symptoms be related to this?.. can I ask what your TSH was to be diagnosed and get treatment as mine goes from top end 4 to lower end 1 and I’m just a hot mess xxx
Your gp MUST check your Ft3 and Ft4 not doing so is negligent in my opinion when you are so symptomatic. They cannot possibly see what’s going on without these results.
Yes I think I’ll call today and just ask to be put on them without waiting more. I genuinely feel like things are getting worse with each day.
Hi. When I first had Graves I was like you expecting immediate results but you have to be patience as it takes a while for your body to burn off the hormones.
It took a good 6-9 months to get back to a normal level and then weening off carbimezole. I’m on 10mg per day now after 17 months.
These things take time.
Good luck x
Yeah it seems there’s a long road ahead to getting better. I genuinely thought it was just postpartum thyroiditis and my levels would drop with each week but not the case I guess.
I feel your pain. When I was diagnosed with Graves disease, overactive thyroid was quite high and I was quite unwell with chest pains, inability to climb the stairs plus the mood swings. As you said it could go from 0 - 100 on a blink of an eye.
At one point my memory was so bad my husband was really worried about me, at some point it was only a few seconds but I, like you, did things that were dangerous as I forgot I had seething cooking on the stove or in the oven. I took carbazole twice as I had it twice over a few years before having radio active treatment on my thyroid. Hope you feel better soon, as I took propranolol aslo plus other medication second te around as there was a problem with the chest pain and breathlessness. Thought I was going mad at one point but I'm here now still alive after 16 years. So good luck to you and I hope you will soon feel much better xxx
Yes the chest pain and tightness was awful last night I felt like someone was sitting on my chest but it subsided after a while. Glad your feeling better!
Never ignore chest pain ring 111
I ended up on heart medication but since I'm not overactive now my heart is fine but been left with a skipped or extra heartbeat. But at the moment nt I'm not on anything fir it. Yay. Get the chest pains checked out though xxx
I also have same. My memory went to pot and I felt permanently low; and I was having to put timer on to remind me when I had bath running or oven on. Very distressing. This was what prompted me 2014 to see Dr. She ran extensive tests which highlighted UAT (later confirmed as Hashimotos) and seriously low Vitamin D. I was given a gradually increased thyroxine and Vitamin D . I have to take both all the time now because it took a year to get level of bit D upto range but when reduced and stopped it just dropped again. Even now taking 2 a day my last test showed it was only 67.
The vitamin D definitely affects my mood. I know I need to go outside in natural daylight to feel well, but it is such an effort to do it when feeling low. I wish I could hibernate in Winter that is the worst time for me.
Yeah my vitamin d was 9 at the last check! He gave me 15000 to take weekly but I feel ill need more as I just want it to rise quickly so I’ll at least not have those symptoms to deal with too.
Just take it as prescribed and try to go outside in natural daylight every day, and eat healthy, it will be slow but safer that way. Ask for it to be checked again in 3 months to see if improvement in level.
Hi Butterfly
I am sorry to hear about your Graves’ disease .
I have had a overactive thyroid for 4 years and just a week ago had my thyroid removed.. so now I am part of the elite under active club.
I started exactly where you was, I was on propranolol and carbimazole for ages, unfortunately it didn’t work and I ended up having a huge thyroid crisis and ended up in hospital for 3 days.
It fells like your living life at 100 miles a hour it would feel like your going insane, unable to concentrate on one thing
I can assure you, when you get to the endo you will be put on the correct dosage and your symptoms will ease. It is a long process but try and relax.. I found being stressed on hyper is so dangerous.
Yes this is so accurate. I was trying to be somewhere for a certain time yesterday and with the anxious feeling of being rushed it made me end up cracking up and shouting at my husband and breaking down crying. I told him after it that the behaviour of acting like that is what my brain is like on the inside this whole time and on the outside when I’m calm and quiet that’s me having to make the effort to act like that! It’s really hard to explain it to someone who doesn’t have it I get why they can’t imagine how it feels, that’s why it’s so nice to have this forum with people who have it too!
I feel for you I went overactive due to too much medication. I too thought I was going mad. Think you should speak to your Doctor and find out if the meds are giving you stomach pain. I am sure when you get your Thyroid under control thing will return to normal but at the moment you need help to cope. I was very frightened but after levels were adjusted felt normal again. Do not be afraid to ask for support.
Yes I feel like I’ve been keeping it in until now but yesterday was really the point where I realised that yes I am sick and yes I can’t just keep trying to carry on as normal and expect to be on top of everything. Unfortunately there’s not much people around as my family aren’t living here but my husbands a good help and I plan on putting my two year old to pre school soon so that should help.
I’m sure you’ll be OK when they calm your Thyroid down.
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