graves journey update

[Hungryallthetimes]

Thought I’d follow up post endocrinology appointment.

New blood tests came back

FT4 11.5 (range 11-22)

TSH > 0.01

So whilst my FT4 is making great strides in reduction and the 20mg carbimazole is working, TSH still needs to wake up.

All hyperthyroid symptoms have gone. Feel the least anxious I have ever felt ever in my life.

Awaiting new prescription of carbimazole, presumably it will be less…

Will go for further blood tests in 1 month after my new prescription has time to work.

Selenium and Vit D seem to be doing the trick. Eyes much less puffy. They have a flare up if I eat any UPF, so I’m on a strictly natural foods diet. I’m hoping this will help to reduce antibodies but time will tell.

Any tips on getting your TSH to wake up and become normal? Appreciate this may be a million dollar question!

[PurpleNails Administrator]

FT4 low in range. FT3 is the active thyroid hormone, I wish dr / labs would test it.

Are you still on 20mg?

What was your original results on diagnosis?

Have you been on medication for around 2 months?

20mg isn’t a high starting dose & that’s a considerable reduction. You might need to reduce carbimazole it to stop level going under range?

TSH can take longer to respond. In my case it remained undetectable after years of normal levels. 5 years on treatment.

[SlowDragon Administrator]

results from previous post

Blood test results 16th Feb

B12 327 (range 197-771)

Ferritin 48 (range 30-150)

Folate 10.9 (range 1.9-25)

TRAb 3 (range 0-3.3)

TPOAb 178 (range 0-34)

FT4 38 (range 11.4 - 22.8)

TSH 0.01

Trab antibodies for Graves’ disease was (just) negative

Have you had TSI antibodies tested to definitely confirm Graves’ disease

No vitamin D result

B12, folate and ferritin low

Are you taking any B12 or vitamin B complex

Atresia you working on improving low ferritin levels

[Hungryallthetimes in reply to SlowDragon]

Hey thanks for doing that!

Yes, I’ve improved my diet by increasing natural sources of B12 and ferritin. I believe all vitamins were a bit low as the hyperthyroidism was causing frequent bowel movements so was a spiral of losing key nutrients as I lost weight, kept losing weight, lost more nutrients. Now I’ve put weight back on but in a sustainable way and eaten only natural foods.

I haven’t had TSI tested.

Endocrinologist said my symptoms sound a lot like Graves and my thyroid is slightly swollen. Need to have a scan at some point but this isn’t booked in yet.

[Buddy195 Administrator]

I would push for TSI antibodies to be tested. I was misdiagnosed as Graves (largely on hyper like symptoms) but actually had Hashimotos with TED. I’m always grateful to forum members to pushing me to check antibodies fully.

[Hungryallthetimes]

super helpful! I want to get my Carbimazole prescription to a lower dose so will be calling GP and will ask for this, too, along with TSI and T3… I want a repeat antibody test as well…

[Gravie]

Hello, I recently stumbled across a thread that discussed taking acetyl l - Cartinine in conjunction with carbimazole or equivalent to “wake up” tsh. Unfortunately I can’t speak from personal experience as currently hesitant to commence medication due to being asymptomatic. They say to monitor use regularly due to working rapidly when taken together. patient.info/forums/discuss...

Hopefully this helps in some way?

[Hungryallthetimes]

Gravie this is an interesting read! 👁️ will also enquire about this! Thank you for sharing, much appreciated.