Graves Disease and my brain

[enamor]

Hi guys, it's been a while since I've posted here. I was diagnosed type 1.5 6 years ago and have managed my health with an insulin pump.
I started to feel really ill again about April and was diagnosed with Graves disease in July and put on 30mg of Carbimazole.
Does anyone have anything that will give me hope?
I could give a long list of things I'm feeling but in all honesty I'm just too tired, I feel like I'm going insane, my cognitive functions have reduced, I actually feel like I have dementia!
I'm still working my day job, running my business, taking care of my home and my kids but I feel like I'm just hanging on.
Blood sugars raging high, then 6 hypos yesterday.
I can only describe it as going to bed one day, waking up the next where everything is the same but I'm in the wrong body. With insane emotions which is just not like me.
Getting to grips with the diabetes which affected my body was one thing but this is a whole new level of strange and I feel is affecting my personality. I read loads of stuff and it sounds like a vicious disease (and feels like it too at the mo).
Anyone have any experience? Is this it or do things settle back to how they were?
I guess I'm just after a bit of hope that I'll regain my coping skills and be able to take control of my life again.
I've got a double appointment with my endo in 2 weeks but there's nothing like hearing it from someone who's been there.
Many thanks, Kerry

 

[jkjkjkjkjk]

Hello Kerry, I can sympathise as I was in the same position as you. I was diagnosed with Type 1 10 years ago and developed Graves 5 years later. It isn’t fun. I found Carbimazole to be a fairly unpleasant drug with lots of pesky side effects. I found it affected my glucose levels in that I needed to take less insulin. It also gave me pains in my lower legs, particularly my ankle joints and whatever it is that runs up the outside of the legs from the ankle to the knee. I am a keen bootcamp-er but eventually had to give up for the time I was taking Carbimazole because it just hurt too much. When I was eventually taken off the drug (after 20 months) the pains went away within 48 hours (and happily haven’t returned).

The dose you are taking is quite high, if your treatment goes the same way mine did then it is very likely to be reduced over time which will make you feel a bit better. If it gets too unpleasant there are alternatives to Carbimazole (I can’t remember the names) which your Endocrinologist should be able to provide info about. Things will settle down, but will probably be frustrating for a little while longer yet. Hang in there…

(I do stress that the above is just my experience and everyone is different).

 

[Angelofthemarches]

Sending you hugs , it sounds like a really difficult time xxx

 

[DCUKMod]

Hi guys, it's been a while since I've posted here. I was diagnosed type 1.5 6 years ago and have managed my health with an insulin pump.
I started to feel really ill again about April and was diagnosed with Graves disease in July and put on 30mg of Carbimazole.
Does anyone have anything that will give me hope?
I could give a long list of things I'm feeling but in all honesty I'm just too tired, I feel like I'm going insane, my cognitive functions have reduced, I actually feel like I have dementia!
I'm still working my day job, running my business, taking care of my home and my kids but I feel like I'm just hanging on.
Blood sugars raging high, then 6 hypos yesterday.
I can only describe it as going to bed one day, waking up the next where everything is the same but I'm in the wrong body. With insane emotions which is just not like me.
Getting to grips with the diabetes which affected my body was one thing but this is a whole new level of strange and I feel is affecting my personality. I read loads of stuff and it sounds like a vicious disease (and feels like it too at the mo).
Anyone have any experience? Is this it or do things settle back to how they were?
I guess I'm just after a bit of hope that I'll regain my coping skills and be able to take control of my life again.
I've got a double appointment with my endo in 2 weeks but there's nothing like hearing it from someone who's been there.
Many thanks, Kerry

Hello Kerry, I can sympathise as I was in the same position as you. I was diagnosed with Type 1 10 years ago and developed Graves 5 years later. It isn’t fun. I found Carbimazole to be a fairly unpleasant drug with lots of pesky side effects. I found it affected my glucose levels in that I needed to take less insulin. It also gave me pains in my lower legs, particularly my ankle joints and whatever it is that runs up the outside of the legs from the ankle to the knee. I am a keen bootcamp-er but eventually had to give up for the time I was taking Carbimazole because it just hurt too much. When I was eventually taken off the drug (after 20 months) the pains went away within 48 hours (and happily haven’t returned).

The dose you are taking is quite high, if your treatment goes the same way mine did then it is very likely to be reduced over time which will make you feel a bit better. If it gets too unpleasant there are alternatives to Carbimazole (I can’t remember the names) which your Endocrinologist should be able to provide info about. Things will settle down, but will probably be frustrating for a little while longer yet. Hang in there…

(I do stress that the above is just my experience and everyone is different).

Hi Kerry and jkjkjkjkjk - I'm not T1, nor do I have Graves, however, I do appear to have some dysregulation with my thyroid, which has been as frustrating as a frustrating thing from the land of the frustrated! (yes, frustrating.)

Unfortunately, having met with my GP and yawn inducing number of times, and having seen two Endochrinologists who drew blanks, despite a jaw dropping number of tests (on the upside, I know that at that point I didn't have some very, very nasty stuff indeed. ), I decided I'd really got to go digging for myself.

I had been reading before, because my symptom were like hypothyroid, but I was atypical. (I was also an atypical T2, so all very normal for me. )

Anyway, anyway, I eventually stumbled upon the website HealthUnlocked, where there are boards for a great many conditions, including Thyroid (Thyroid UK) and ThyroidWA Graves (an Australian group). The mione of information and support I found on the HealthUnlocked Thyroid boards was excellent, and has really helped me have a much better handle on where I am on my journey to true wellness.

It's a bit like here in that there are volunteer "experts" who themselves have usually been on our journey and have picked up loads of experience along the way.

If you haven't discovered it already, it could be a worthwhile few clicks.

Our hormones really can mess with us big time, and of course they have additional impacts in all sorts of bits of our bodies.

I wish you both well.

 

[Lar oli mu]

Does anyone have anything that will give me hope?

Check these two summits out:
https://www.linkedin.com/feed/update/urn:li:activity:6452505092229734401
https://www.linkedin.com/feed/update/urn:li:activity:6452612012445835264
The first is Dr. Peter Osborne who again brought together the leading experts in the field of autoimmunity. Buy that summit and you will find many treasures in all the interviews. It’s only 60 bucks. Or (Like I do) listen to it online for free.
The second is THE docu on cancer, which might be a little of target for you, but it will also teach you a lot about what’s going in in your body, your immune system and most important within the system that feeds you insulin and medications and does never look at root causes...
All the best to you from Northern Germany
Lars

 

[Indy51]

I'd suggest looking at the book on Autoimmune Diseases written by Dr Amy Myers (she herself is a Graves sufferer).