Graves lack of appetite & feeling very low.

[Mah43]

I have my follow up endo appointment on 4th March by telephone to discuss my bloods which I need to have taken again next week.

I was diagnosed on 22nd January with graves, the GP requested the Trab test back in October but it was refused, it was only after I’d seen the endo that the test was the retaken & graves was confirmed. It still annoys me that if the test was not rejected by the lab I would've found this out 3 months sooner. I’m on 10mg a day of carbimazole. My last lot of bloods my t4 was almost in range, for some reason they have never tested my t3, I am going to question this when they do my next lot of bloods.

I have lots of symptoms, the worst for me being the weight loss, I’m down to 7st 4lb now which is awful, I also have a suppressed appetite which I don’t see many other people talk about (I know you’re meant to have an increased appetite) has anyone else had issues with lack of appetite?

This has lead to my having some other tests to rule out anything more sinister (I had a positive fit test which meant I had to be reffered down the 2 week pathway). I had a CT scan with with contrast last week (all clear) & a colonoscopy on Sunday, they did find two polyps which have been removed, however they do not believe these to be the cause of my severe diarrhoea, weight loss & suppressed appetite, they believe it’s the graves that’s causing this. My anxiety & mental health is not good, I have always been a worrier but this is a whole new level, I just don’t seem to be able to control my emotions, which is very usual for me. My sleep is also pretty rubbish. My heart rate is still very fast.

I know it’s very early days & I understand it can take time for things to settle. I’m just totally fed up!

[misky]

Hi Mah43,

I'm so sorry to read you're still struggling. I know how awful it feels to be so sick. I did have diarrhoea as well, and I couldn't eat much, but only before I was put on medication. After that those things improved quite quickly. Ask your endocrinologist about this on the 4th of March! It's not normal to lose so much weight.

Also, are you not on propranolol to keep your heart rate down? I was popping those pills like a madwoman in the first couple of weeks as my heart was racing all the time, which wore me out and increased my anxiety. If you're not taking any beta blockers, call your GP asap. They are a big help.

Have you checked Elaine Moore's website about Graves? Maybe you'll find information there on suppressed appetite and diarrhoea.

It sounds like you could need more support from a health care provider. Can you talk to your GP or a psychologist? Or anyone that might be able to help you?

Things will get better, hang in there. Be patient. Hopefully the diarrhoea will stop soon - I've been suffering from it in the last year, but only because my gallbladder was removed and after that my digestive system changed completely. I'm glad I work from home as it was quite a struggle to have diarrhoea every day. It's all very unpleasant.

Take care, and be patient with yourself. You will become emotionally stable again, but it takes time.

[Mah43 in reply to misky]

Hi Misky,

Thank you for your response. My GP did prescribe me propranolol, I have only taken them twice when my heart rate was stupidly high, I really don’t like the way they make me feel, they did the job of getting my heart rate down quickly so I do have some for emergencies. Luckily my work are very understanding, my diarrhoea is only really bad in the mornings, so I can start later if I need to, I’ve also been allowed to work from home if I’m having a particularly bad toilet day.

I know I have to be patient & give everything time to settle down, I’m just hoping it’s sooner rather than later.

[misky in reply to Mah43]

Hi Mah43,

Interesting that you mention the diarrhoea is only bad in the morning, I've had the same for the past year after my operation. I recently discovered that if I eat oatmeal in the morning, I don't get diarrhoea. I soak the oats overnight and heat them up in the microwave, add banana, raisins, and cinnamon and sometimes honey. I discovered the oats help bind bile acids, that's why I tried it. Maybe it will help you too?

Last night I thought back to the time I was recovering from Graves and I remembered I also felt very low for a couple of months. I went to see my GP but he wanted to prescribe me antidepressants, which I thought was stupid as it was clear that my low mood was caused by the thyroid issue. I just tried to be very gentle with myself, I went for walks, rested if needed, met up with friends, cuddled a lot with my partner and cat

Oh and my sleep was also rubbish for a long time I'm sorry I don't have good news on that front.

Just be patient, and know you're not alone. Do keep in mind things will get better! I was extremely ill, I was on the verge of a thyroid storm, I couldn't eat, sleep, talk, walk, it was a nightmare. But I recovered And now I've been in remission for 11 years, enjoying life and appreciating my health. Take care!

[Zoe12]

Hi Mah

When I had hyperthyroidism last July I went right down to 6 stones in weight. It's taken alot of eating over 7 months and carbimazole for me to get back to 8 stones. I did find a gluten lactose free protein drink that helped. Have you asked your doctor if you're indicating celiac or lactose intolerant. You'll need a T3 test to be sure as well

Even though, this month I'm back 'in range' with free T3 and free T4 and TSH. I was diagnosed with Graves then not Graves and then Graves. I've Bern told that my antibodies test indicates Graves.

I am being referred to endoscopy to check for celiac.

My sleep is also rubbish. I'm not a stressy person but my brain, since thyroid spike, seems to stress alot and I find it hard to relax. It's very tiring. I live alone and started feeling very lonely which had not happened before.

You're not alone. I get tested every 4 to 8 weeks to keep my carbimazole dose right. I am on 5mg a day. I must say on days I forget to take it I feel a bit better so I'm not entirely sure how I feel is some side effects.

Hope this helps some

Zoe

[Mah43 in reply to Zoe12]

Hi Zoe,

Thank you for your response. I have been tested for celiac but that came back negative. It’s such a strange feeling not being hungry, I’ve always been small but I’ve always had a good appetite, I have been around 8st to 8st 4lb for all of my adult life, so losing a stone is a lot for me,, I can’t imagine how you felt dropping to 6st, I know how draining it is. I think if I can get some weight back I will make me feel a lot better.

I totally agree with you about the sleep & the stress, the graves definitely does something to your brain, I know it does because I’ve never felt like this before. My GP gave me some diazepam, I took one last night & had a lovely night sleep, I was asleep with 15 mins of taking it & only woke up once, I don’t want to take them all of the time, I am just going to take one when I really need to sleep.

I said to my husband yesterday I wander if the carbimazole makes me feel worse some days. I’m going to stick with it & hope to see some improvement soon xx