Help with Graves symptoms

[Sweetmango85]

This is my second bout dealing with Graves’ symptoms . Initially I was trying to handle this with as much grace as possible but everything is coming at me fast. Initially I was getting some sleep but now it’s insomnia. I thought I had the ability to calm my anxiety with the tools I’ve learned in therapy but my nerves are shot. I still can’t eat and when I try I end up on toilet or nauseous trying to vomit.

Is any of this controllable or manageable? Do I just go through this for the next however many weeks/ months?

I can’t take care of myself nor my 3 little kids who need me. I have no energy and tremors running through my body.

If you’ have Graves what do you do to manage the symptoms?

[Buddy195 Administrator]

I feel for you Sweetnango85, as a Graves relapse is hard, but must be awful with three young children to care for.

In your post a couple of days ago, SlowDragon advised to test vitamin D, folate, ferritin and B12 levels to see if these could be optimised; have you looked into this?

pennyannie alsi suggested looking at/ posting on Elaine Moore’s website, which has a wealth of information on Graves. Did you follow this up?

I would consider seeing your GP about a prescription of sleeping pills, as insomnia will no doubt be making you feel even more stressed. I know this is only a short term solution, but it will at least allow your mind and body to rest overnight.

[Sweetmango85 in reply to Buddy195]

I haven’t tested for them but I haven’t been supplementing these so I’ve started iron, vitamin d and omega 3. I’m going to get the other supplements when I can. Thanks for your reply.

[Jazzw in reply to Sweetmango85]

How much iron, Sweetmango85? Your iron levels are so low you probably need an iron infusion (see mine and Humanbean’s posts below). Did the hospital really say your recent blood results were normal??

[Buddy195 Administrator in reply to Sweetmango85]

It is important to test levels of key vitamins first, before supplementing.

[pennyannie]

Hey there again :

Did we ever get proof of which antibodies were found in your blood to give a diagnosis of Graves Disease ?

Are you still taking the AT drug - Methimazole - maybe the dose needs to be increased to try and offset these symptoms you are suffering ?

[Sweetmango85 in reply to pennyannie]

I’m going to request an antibodies test from the endocrinologist.

[Buddy195 Administrator]

Antibody tests are very important.Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:

TRab TSH receptor antibodies 

TSI Thyroid-Stimulating Immunoglobulin

I was initially diagnosed with Graves, largely due to symptoms (anxiety, tremor, palpitations, sweating, weight loss, plus TED) but following advice here I later tested the above and found I was in fact negative. Instead, I tested positive for Hashimotos (underactive). 

TPO & TG antibodies may be Graves or Hashimotos:

TPOab Thyroid Peroxidase antibodies

TGab Thyroglobulin antibodies

[Jazzw]

I’ve just spotted that you posted your most recent results on another forum.

The thing that screamed out at me were your iron levels. You would appear to be very anaemic. Did your doctor not mention anything about that??

Blood test results

[humanbean in reply to Jazzw]

Those iron and saturation results are so bad I think there might be a risk of developing heart failure.

acc.org/latest-in-cardiolog...

I think an iron transfusion or blood transfusion might be called for.

Also, I wonder if OP has an internal bleed of some kind.

It would be worth checking for visible blood in poo, and getting a faecal occult blood test.

Be aware that false positives and false negatives are a problem with tests checking for blood in poo.

healthunlocked.com/thyroidu....

The blood would normally present as being any colour from maroon to black - the darker it is the thicker it would appear to be. It could look like coffee grounds.

I'm not sure what HS Tropi is but a quick google makes me think it is a high-sensitivity troponin test which measures muscle damage and/or heart damage when someone has rhabdomyolysis or is having a heart attack. I think a low result is a good result.

See a doctor ASAP (about the iron).

[Jazzw in reply to humanbean]

I couldn’t quite believe my eyes, Humanbean.

   Sweetmango85 , low iron (and whatever is causing that) will be causing quite a few (if not the vast majority) of your symptoms. I can’t quite believe your doctor hasn’t taken action (assuming they’ve seen them?).

For what it’s worth, I don’t think what’s going on here has very much to do with your thyroid hormone levels.

[TLVR]

Are you on carbimazole? I was on 40mg a day, so maybe you need a higher dose. It took 4 weeks before I started feeling better. In the meantime I was prescribed beta blockers. Propranolol. I took 20mg a day, or as needed, and it made a world of difference. Helped me cope until the carbimazole kicked in. Ask your doctor to prescribe. Hope that helps.

[NIKEGIRL]

Hi. From reading your thread I’m not sure if you have an iron problem or if you have graves. Antibody testing will confirm graves. I myself suffered from extreme Graves’ disease and I lasted 30 months. I endured a lot psychologically and physically. I ended up having a full thyroidectomy. I am 6 weeks post surgery. You have a few things to sort out really. Iron and antibodies then you will have a clearer direction. Do not underestimate the wrath of graves. And from the sounds of it you are struggling. I wish I could help you more.