Is anyone going through the same?

I was diagnosed in 2008 with Graves Disease, was on Carbimazole for approx 2 years and all has been fine since.

It has recently returned with a vengeance and i've been started back on Carbimazole 40mg daily. I am awaiting a endocrine and ophthalmology (didnt have eye probs 1st time) consult.

I am 39 but also going through perimenopause and finding it hard to differentiate between the symptons?

My symptoms include shaking, brain fog, irritated eyes, constipation/diarrhoea, hot flushes/night sweats++++, anxious, irritable, palpitations (although have my beta-blockers now, so getting better) mood swings and emotional wreck.

Is anyone experiencing the same? I have seen people discussing a diet change? does this help? Any supplements that can help? I do smoke (max 10 a day), but am making a conscious effort to quit, as I know this doesn't help.

thanks

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24 Replies

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  • Jen-Smith,

    You really need to quit smoking because that will considerably worsen thyroid eye disease (TED).

    Symptoms will improve when the Carbimazole blocks your thyroid production and FT4 and FT3 levels drop.

    You must have Graves disease to have TED. Graves reduces the likelihood of a permanent hyperthyroid remission by more than 50%. You can take Carbimazole for years so don't be pushed into having a thyroidectomy or radioactive iodine (RAI) ablatement unless you are unable to tolerate Carbimazole.

  • Thanks, really don't want rai or surgery.

    Just had my endo appointment and I have to wait until July.

    I think the NHS do a fantastic job, but that is some wait.

    Will do what ever I can to feel better in the meantime.

  • stopping smoking is paramount or TED will rage just the same if you accept RAI ...run a mile from that

    My husband went thru same as you but underwent surgury and if you opt for that be prepared to organise NDT because generally levo and or t3 simply does not work for post graves patients

  • RFU,

    Levothyroxine may not have worked for your family but it works just fine for most Graves patients post thyroidectomy or RAI.

  • do you have statistics to back that up Clutter because there seems to be many postings expressing a rather different view

    i accept that my husband ,daughter and grandaughters all are far better on NDT that they ever were on levo or t3

    but its only my husband who had Graves then surgury then spent miserable years on levo and t3 so maybe there a serious genetic basis why some people are better on NDT whether anyone will bother to test such people and prove it is another matter

    Years back there was loads of talk about genetics being so brilliant now they could tailor treatment to individual patients

    Seems it was all promises promises as usual

  • RFU,

    I have the same statistics as you are using - familial anecdote. My sister has Graves and had RAI 5 years ago and is fine on Levothyroxine.

    From that I don't extrapolate to say that ALL Graves patients will do well on Levothyroxine and likewise you shouldn't extrapolate your family's poor response to Levothyroxine to say that ALL Graves patients need NDT.

  • thats not what i am saying ...i said you need to be prepared abour NDT

    i have actually seen rather a lot of post Graves patients post they are not well on levo and also i know that often because their bodies are highly sensitised they need far higher doses of thyroid meds than the doctors are happy with

    problem is everyone is different and currently theres no way of knowing who will or wont respond to levo

    The removal /blocking of T3 is very soon likely to create real problems for many people and have to wonder when the lid will blow on that can of worms

  • I don't need high doses of meds, I'm on 125/150 my sister who also had Graves has been on 150 for years.

  • RFU,

    I don't agree that all Graves patients are highly sensitised and need higher doses either. My sister preferred to be slightly under medicated because she was terrified of becoming hyper again.

  • Rfu there may be "people on here expressing rather different views" but what about all the people who are absolutely fine on Levo who aren't on the forum ?! They have no need to be telling their stories. As I have said many times there are quite a few hypos in my family and we are all very well on Levo, my younger sister for about 35 years, we both had Graves and RAI.

  • Those who are well on levo have little use for forums like this i am very well aware that its claimed approx 80% of people are fine on levo whether thats the full picture i have no idea of the 6 hypos in my family only 1 is fine on levo ...hence i guess the other 5 have a different genetic make up

    what none of us know is how many people are not actually well on levo but have simply accepted thats what hypothyroid is

  • The numbers don't matter, what does matter is that people are being told that Levo won't work and they will need NDT which as we see on here does not work for a lot of people.

  • what matters is some research is done to see why some are only well on t3 and why some are only well on NDT but thats not happe ing instead doctors insist levo is the perfect med

    It is perfect for many but definitely not for all and whatever % it is who are not well on levo the struggle to get answers is gruelling

  • Even though you aren't seeing an Endo until July, make sure your GP tests your thyroid levels in between time so you dont go hypo. You could probably fit two blood tests in before you see the Endo - I found them best every 8 weeks.

  • I have my bloods booked with GP,thankfully I have a lovely Dr, and because I've had it before, not as scary! Would just like to discuss all my hormonal changes, driving me insane. Was wondering if that had triggered a relapse?

    It's really good to hear others experiences, as I'm the only one in my family with thyroid issues.

  • I had a diagnosis of Graves and (very suddenly) started the menopause. I can sympathise with not knowing which symptoms go with which!

  • I've been hyperthyroid since 2008 and have been on meds ever since, if you can please quit smoking and it'll help with the eye problems. Consider going gluten free, I've found it's helps with my gut symptoms. Another tip is to reduce caffeine intake (that's one I struggle with). I wouldn't add supplements unless you've had blood tests first. I always carry a bottle of water and a fan when I'm out and about .

    If you've just started carbimazole again you should get another blood tests 4-6 weeks time. Hope you're feeling better soon.

  • Thank you.

  • its as if you read my mind. I experienced exactly all the symptoms you mentioned about a years ago. I was diagnosed with graves in 2014. I also smoke, but a bit more than you though. I'm 42 and have had no children. Menopause comes earlier in women with no kids. I did get a hormone test done to see if I was menopausal and it came back no ! So I think it's just the graves. As my thyroid is now under control which you'll know can take a bit of time I now don't have these symptoms. I'm on 5 mg carbo a day and have been since Oct last year. Only now feeling like normal. I was on 20 mg a day last April when I too had a relapse. Then I stepped down over the following months. My eyes have settled down too now. I've never seen an eye specialist. Are you in the uk? Alex

  • Yes I am in the UK. I had the menopause test and I was just over the cut off (as my Dr put it). I too don't have children. Nice to know there's light at the end of the tunnel. Since starting back on meds my eyes are a little better, not as sore.

    Thanks for sharing. X

  • I'm on carbimazole for hyperthyroidism and have been for a couple of years. I asked for blood tests because of brain fog, muscle ache, extreme tiredness. Results came back that thyroid was good but my systemic lupus has flared up and also another auto immune disease - sjogrens syndrome. It makes your eyes very dry - which may explain your irritated eyes and also lack of saliva (which I'm suffering from) which makes it a bit of a pain when swallowing food. Apparently I can get artificial saliva, and I've already got the eye drops.

    With having an auto immune disease you are very likely to have others, following my diagnosis 2 years ago of hyperthyroidism I've since become coeliac despite never having any systems prior to having an endoscopy ! Ask your doctor to check for sjogrens syndrome, it's pronounced shawgrens !

    Being coeliac I have to watch my diet very carefully, but my healthy eating no real benefit to alleviate my extreme tiredness, aches and pains etc. I fact in the last 12 months my cholesterol has shot up to 7.9 !!

  • That's very interesting, will speak to my Dr.

  • Hi. I recently developed Graves, and thought it was a return of menopause symptoms ( I'm 54 and thought I was done with those a few years ago). The differences for me were the shakes, general internal jitteriness and feeling of being speeded up, extremely dry mouth, constant eating and inevitable trips to toilet, and grinding fatigue. I didn't have those with the menopause but every woman has a very individual experience of that, so it is impossible to be specific (which is why thyroid problems can be so hard to diagnose, I guess!). Keeping a positive attitude and getting through one day at a time is sometimes the best we can do, but at least having a diagnosis is a step forward.

  • I feel the same. But only just diagnosed. I can't go on Beta blockers as I am now on a steriod inhaler. I gave up smoking after having pneumonia in February. Is diet a key factor go help??

    Hope you get sorted. It's horrible and hard for people to understand

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