Is anyone going through the same?

[jen-smith]

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

[Clutter]

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.

[jen-smith in reply to Clutter]

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.

[Silver_Fairy in reply to jen-smith]

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.

[jen-smith in reply to Silver_Fairy]

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.

[Silver_Fairy in reply to jen-smith]

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

[Clutter]

RFU,

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

[DoubleM]

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.

[jen-smith in reply to DoubleM]

Thank you.

[Clutter]

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.

[bantam12]

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.

[bantam12]

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.

[Clutter]

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.

[bantam12]

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.

[Alexkjones]

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

[jen-smith in reply to Alexkjones]

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

[sally1976]

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 !!

[jen-smith in reply to sally1976]

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

[Shuttlegirl]

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.

[Kazbar-70]

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

[marin5]

For my A-fib I was scribed metoprolol. Is that a beta blocker or channel blocker?!I also take Ventolin inhaler and Advair discus which I believe is a steroid. Are these all right to take with metoprolol?