Graves

[Hollyhope]

Hi all,

I’m new here and wanted to post how I’m feeling. Yes was diagnosed with Graves’ disease in September 2016 - I felt awful at the time, but put my health down to recovering from an elective tummy tuck surgery in July 2016. Since then, I haven’t felt ok 😢

I strayed on 40mg of Carbimazole, Daryl quickly my horrible Grave’s sumtond cleared up - fast heart rate, swollen legs, anxiety, overheating, shaking. I’ve been on Carvimazole for 2 years now. My levels have been up and down, but seem quite steady, now I’m on 5mg per day.

I write this because I just don’t feel right, I feel unwell. My hands are swollen, my tummy is off ( constipation to diarrhoea), my joints are now very sore too. I feel as though I have s new symptom every week!

I’ve been back and forward to the doctors so many times, feel like I’m going mad. I have also put on 2 stone in weight, I was already overweight. Can anyone help?

Thank you for reading my ramblings xx

[SlowDragon Administrator]

Do you have any recent blood test results and ranges to add for members to advise

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common and getting tested and supplements if need be can help

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

[Hollyhope in reply to SlowDragon]

Thank you SlowDragon. - I’ll look into that.

[SlowDragon Administrator in reply to Hollyhope]

We see many Hashimoto's patients who often have hyperthyroid type test results, misdiagnosed as having Graves

To have Graves the TSI or TRab antibodies will be high. Often endocrinologist doesn't even test to confirm

Find out exactly what was tested

[kvmj]

Depending on how long you sustained the fast heart rate, you may have developed Congestive Heart Failure. The swollen legs might be an indicator.

[Hollyhope in reply to kvmj]

kvmj - that’s a massive overreaction I think!

[kvmj in reply to Hollyhope]

Not necessarily. Sustaining a fast heart rate will lead to CHF eventually. The swollen legs might well be the result of CHF. Definitely needs to be checked.

[Hollyhope in reply to kvmj]

The fast heart rate was probably a noticeable symptom for a month or two -maximum. I think you should be cautious with your opinion sharing as I have come on this forum for advice and reassurance not scaremongering.

[kvmj in reply to Hollyhope]

I am certainly not trying to scare anyone. Swelling of the legs can also be caused by pregnancy, DVT (one leg only) but also by CHF. I am not a doctor; I do think that she should see one.