New here & need help x

[Lucylou0_5]

Hi all,

I desperately need some help as I feel like I'm going down a path with my eyes shut.

I was taken into hospital in March as an emergency very poorly with sepsis, tonsillitis and having a thyroid storm. After 5 days I was let out and on 30 mg of carbimazole and pro propropanol (beta blockers) 40 mg 3 times a day. I was given a diagnoses of Graves' disease.

I'd started to feel a bit better as the weeks went by, but then the last few weeks I think I've started to go the other way, feeling so tired, gaining weight, getting depressed etc. I saw my consultant last week and she suggested reducing meds to 20mg carbizamole and 20mg propropanol. Since then I've been feeling even worse and ending up back at the hospital because the palpations and got bad again and they've told me to increase my meds to where they were before!!

I'm so confused. I don't know what to do. Is there any vitamins I can take to help me? B16? Any advice I'd be so grateful xx

[EileenMH]

I think it would be good to check your thyroid hormones. If they are high it speeds you systems up and you can get palpitations. If low then it slows it down so you feel tired etc. I have mine at Medichecks. They'll give you results for your doctor and explain what they mean.

[Lucylou0_5 in reply to EileenMH]

Thank you so much for replying. The doctor checks my T3&4 every 6 weeks but I'm wondering about getting it done privately to understand it all more. Thank you.

[greygoose in reply to Lucylou0_5]

Why don't you just ask for copies of your blood test results? It's your legal right to have them under the Data Protection Act, they can't refuse. You might have to pay a small sum if you want to go back a way with the results, but got to be cheaper than doing your own tests privately.

[Lucylou0_5 in reply to greygoose]

That's a great idea. I'll do that for sure. Thank you x

[Fruitandnutcase]

Right back at the beginning when I was treated for Graves I started on 20mcg then after a month without any change I was moved on to 40mcg carbimazole a day. After two months on that I went to see the consultant for the first time - I was started on 20mcg carb by my GP then had it increased to 40mcg after a four week blood test (my consultant whom I hadn't seen at that point wrote to me telling me to get more carb and double the dose)

Anyway, by the time I got to see my consultant I was hypo. I thought I was becoming hyper again as I had palpitations and symptoms I had had when my Graves was first diagnosed. Someone on here suggested that I might have been needing an increase in my levothyroxine ( my hospital treats by 'block and replace' and indeed that was the problem, my Levo wad increased and the hyper symptoms disappeared, they came back next time I was needing more Levo and disappeared once I was taking 100mcg Levo along with my 40mcg carb.

So bottom line - check your bloods to make sure you aren't actually becoming hypothyroid. Check out your vitamin D, B12, ferritin and folates too, you need all four to be in the upper end of their ranges to help your thyroid.

When I started on carb my pharmacist came out and told me to take a large dose of vitamin C - can't remember why though - so I always took (still do) 1000mcg slow release vitamin C with zinc. My vit D was also low as was my B12 so I take B12 and vit D daily and also vit K which goes along with the vit D, I take a B multivitamin plus CoQ10 as well and try to eat a healthy diet, lots of fish, chicken, fresh vegetables too. I went totally gluten free last September when I developed inflammatory arthritis - yet another autoimmune condition - and I definitely think that has helped reduce my antibodies too.

I test regularly using the Blue Horizon home fingerpick test. They are an accredited lab and I use their Thyroid 11 test which tests all sorts of things including vitamin D. If you go through the TUK website then you can use a discount code. The results are sent to your email inbox in a couple of days.

[Lucylou0_5 in reply to Fruitandnutcase]

That's so helpful. Thank you so much. I will definitely check all of that out. Thank you for taking the time. You've given me some hope x

[Josiesmum]

It's worth investigating food sensitivities:

thyroidpharmacist.com/artic...

thepaleomom.com/the-autoimm...

And nutrient deficiencies:

thyroidpharmacist.com/artic...

[Joy333]

Hi, I remember all those symptoms like it was yesterday. Your whole body is in overdrive at the moment like the car accelerator is continually flat to the floor. You will be utterly exhausted and finding it hard to have a solid nights sleep and even when you are sleeping your body continues to be in overdrive. It's sooo important to rest and be kind to yourself at this stage and not to feel guilty about it. It'll take time but you really will feel better. Some people on here have experienced weight gain when hyperthyroid, I was the opposite and became a skeleton but now back to my normal weight.

Like fruit and nutcase says, start by getting your thyroid results after every blood test and post them on here where people will comment and help you through this. It's all so confusing but you really will get there. Any questions please ask away.