First endocrinology appointment tomorrow.

[JoanneE1]

Hi everyone. I finally have an appointment at the hospital tomorrow morning. My first set of bloods after 3 weeks of carbimazole have come back as: T4 23.9 (was 40) T3 8.2 (was 22.6) TSH less than 0.004 (no change) Is there anything I should be asking tomorrow? What should I expect? I don't want to waste the opportunity. Many thanks.

[pennyannie]

Hello again -

Your levels have come down nicely and now almost in range - how are you feeling now ?

Have you been keeping a list of symptoms, ticking off those that have disappeared, and writing down those you are now experiencing ?

Your metabolism has been running very fast and now slowing down and coming into range so I would imagine the endocrinologist will reduce your dose of Carbimazole.

I would ask for your core strength vitamins and minerals, namely ferritin, folate, B12 and vitamin D to be tested, as we need to keep ourselves as well as possible during this first phase of Graves Disease.

Have your eyes been affected at all ?

If so mention this as you should be referred to TED clinic - a Thyroid Eye Disease Clinic

where an eye consultant specialist will monitor these side effects, offer relief of symptoms and be consulted on your treatment plan.

Do you have a letter there confirming the diagnosis as Graves Disease and detailing which antibodies were found over range and positive which is the medical evidence of diagnosis of Graves and why you were prescribed an Anti Thyroid Drug like Carbimazole.

I can't see any antibodies listed in either post - am I missing something ?

[JoanneE1 in reply to pennyannie]

Thank you. I'm still exhausted, can't walk my stairs as there's no strength in my thighs/knees, breathlessness and can't sleep etc. Hopefully these will improve still. The HR is better. My mood is actually a bit better too.What are the normal ranges please for the t4, t3 and TSH? I'll definitely ask for the vitamins to be tested, thank you.

[pennyannie in reply to JoanneE1]

These symptoms are all likely Graves related but please mention them in detail to the endocrinologist - ad get confirmation of which antibodies were over range and positive at diagnosis - as just mentioned above - maybe I've missed something but I 'm not aware we have seen any proof of diagnosis yet.

Your whole body has been in a heightened state and you're run several marathons, back to back, while laying on the sofa exhausted , but can't sleep as your brain is wired but tired and will not turn off.

Unfortunately, there are no normal ranges as it all depends on the hospital laboratory equipment used :

I guess estimated and the most popular ranges we see :

A T3 range of 3,10 - 6.80 and a T4 range of 12.00 - 22.00 but irrespective of the specific range used your T3 and T4 levels have dramatically dropped down and hopefully your symptoms will start to improve - but please don't stress yourself and try and be accepting of the situation and rest up.

I gave you some research papers on your first post, you might like to read them again and be better prepared tomorrow but generally the NHS allow around a 15-18 month window with treatment with an AYT drug so it's early days and there shouldn't be any pressure on you to be making any long term decisions.

We are looking at an auto immune disease for which there is no cure, and it's all about given the patient enough time to allow their immune system response to calm back down again.

[JoanneE1 in reply to pennyannie]

Thankyou so much for your reply. You're correct that I haven't had the definitive diagnosis yet but suspected graves. I'm really hoping that things will get better, especially my walking as I have stairs to go up everyday and feel pretty useless still at the moment.

[pennyannie in reply to JoanneE1]

Non optimal levels of core strength vitamins and minerals can simply compound everything and when metabolism isn't sitting right for the individual ferritin, folate, B12 and vitamin D can just nose dive through the ranges making everything ten times worse.

[SlowDragon Administrator in reply to JoanneE1]

Just to point out early stage Hashimoto’s frequently starts with transient hyperthyroid results and symptoms…..

This not true hyperthyroidism…..but temporary due to thyroid cells breaking down and releasing excess thyroid hormones

We see a small, but steady stream, of members who present as hyperthyroid…..and medics assume it’s Graves’ disease…..but when TSI or Trab antibodies are tested they are negative and therefore it’s not Graves’ disease.

Ideally they should also test TPO and TG antibodies too

High TPO and TG antibodies is usually Hashimoto’s, but can also be mildly raised with Graves’ disease

It’s also possible, but rare, to have both Hashimoto’s and Graves’ disease at same time

Antibodies should always be tested…..but you may need to politely insist ……if endocrinologist doesn’t look like they are going to do so

[SlowDragon Administrator]

suggest you reread your first post here

healthunlocked.com/thyroidu...

Essential to get TSI or Trab antibodies tested to see if you have Graves’ disease

Vitamin D, folate, B12 and ferritin levels too

Coeliac blood test ideally as well

[JoanneE1 in reply to SlowDragon]

Thankyou, I have TRab and TSI test on my list.