Hello. I have had the hyper symptoms for three months post covid. A blood test four weeks ago revealed acute hyperthyroidism.
I expect he will put me on Carbimazole. I will ask him to test for antibodies.
Never had an appt like this before - what should I ask? What do you recommend?
Thanks community!
Well first of all I’d say don’t get your hopes up. I always came away fr9m my endo visits with a ‘Duh! Is that it’ feeling.
I’d say before you go read as much as you can about the thyroid and about Graves - there are lots of books and information out there. Also get yourself a little notebook or I suppose you could use your phone but I found a notebook best.
Write down any questions you have that you want to ask your endo. You want to be a partner in your treatment - not just a body they do things to.
Have another page for all of your blood test results.
Another page for the drugs and amounts you are taking.
Somewhere to write down any articles about Graves that are pertinent to you. I kept a lot of interesting articles to support how I felt about my treatment.
By the time I was first diagnosed I had had bloods done. I had antibodies tested too but no vitamins or minerals.
My GP had started me on carbimazole, I couldn’t take beta blockers because I have asthsma. I started on 20 mcg carb and after four weeks I had bloods taken then got a letter from my endo telling me to get more carb and increase the dose to 40 mcg so by the time I saw the endo three months later I was totally hypo.
So, on my first visit to hospital I was weighed and had my blood pressure tested. I was told to take a sample but that wasn’t needed - think that must have been for people who were diabetic who were seen in the same clinic but by a diabetologist rather than someone who specialises in the thyroid. It is very important that you are seen by a thyroid specialist rather than a diabetes specialist.
After that I saw my endo’s assistant who explained about all the different ways of treating an overactive thyroid. He didn’t even mention Graves until I asked if that was what I had at which point he pointed at me and said ‘Yes, yes, Graves that is what you’ve got’🤔 he went on to say my hospital treated Graves the fast way - with block and replace ‘the fast way’ and treatment would last for a year. That was in 2012 but I think they may keep you on it for longer now, it would be worth looking that up.
So that’s about it. I started on 50 mcg levo along with the 40mcg carb, I had regular consultations where nothing really happened (hence don’t get too excited about your consultations) and the levo was gradually increased until I was taking 100/125 mcg. Then one consultation a year later they looked at my bloods ( I always had bloods done at my GP surgery a week before I saw my consultant) and said that was it - I could stop all medication and see if I went into remission which fortunately I did.
Overall I’d say don’t expect too much from your hospital visits and if your consultant tries to push you into making any decisions you are not happy about just say ‘no’. Mine kept saying if I didn’t go into remission they would give me radio active iodine and I kept saying I didn’t want it.
That’s my experience of it - I’m sure others will come along and tell you more.
Thanks! I have a notebook I’ll take with me, and I have now written down my meds per your advice. I am lucky that I have private insurance through work and my consultant knows this Endo very well so I think they are the right person to see.
No idea whether it’s graves or hashi or bog-standard inflammation. Hoping to find out.
Glad you are feeling better and thanks for sharing
Sorry my mistake - you won’t know unless they test for antibodies - it was the off the scale low TSH and the really high zt4 that said ‘Graves’ to me.
Sounds good - great that you have private health insurance although sorting out a thyroid seems to be a long process. There was I really on my knees only to be told that my appointment wouldn’t be for three months! I couldn’t believe that someone as ill as I was (dramatic I know but that’s how I saw it at the time Graves or being hyper can do that to you) was going to have to wait all that time but it was a long slow process.
Good luck and I hope you feel much better soon.
You need TPO and TG antibodies tested for Hashimoto’s (and Graves)
Test TSI or Trab antibodies for Graves’ disease
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms
But your Ft4 pretty high….so perhaps more likely Graves’ disease
What did GP prescribe while you were waiting to see endocrinologist
Important to test vitamin D, folate, ferritin and B12
Hello ZippyFrog and welcome to the forum :
The possible diagnosis if auto immune - will likely be either Graves or Hashimoto 's -
as both start off with a ' hyper ' phase - but Hashimoto's is not medicated with an Anti Thyroid drug, such as Carbimazole, as the T3 and T4 fall back down into range themselves.
An AT drug is prescribed for Graves as this AI disease is considered life threatening since the T3 and T4 keep rising which can put undue pressure on your body and heart.
What symptoms are you dealing with - a beta blocker is sometimes prescribed while you wait for the medical evidence of which antibodies were found positive and over range in your original blood test.
There are various antibodies and generally these read as TPO : TgAB ; TR ab : TSI :
With antibody wording such as Thyroid Peroxidase: Thyroglobulin : Thyrotropin Receptor -
The TRab has a subset - both stimulating ( TSI ) and blocking antibodies - which vie for control of your thyroid function and sometimes these two extremes of functions can burn each other out - leaving you feeling relatively normal through the first phase of this disease.
I can't see a T3 reading there, are there any other blood test results and ranges to hand ?
The thyroid is the victim in all this and not the cause - as the cause is one of your immune system having been triggered to attack your body rather than defend it.
If with Graves Disease the NHS generally suggest a treatment window of around 15-18 months with an AT drug while we wait for your immune system response to calm down and hopefully your thyroid function reset itself.
All the AT drug does is semi block your own natural daily thyroid hormone production - a bit like an aeroplane being put in a holding position while waiting for a landing slot.
As your T3 and T4 slowly reduce back down into range the AT drug is titrated down as otherwise you risk running on too low a level of T3 and T4 and suffer the equally disabling symptoms oh hypothyroidism.
Some endos / hospitals offer a Block and Replace treatment whereby the AT drug is prescribed at a higher level to totally block your thyroid production and a measured dose of T4 prescribed so you do not suffer too low a level thyroid hormones while you wait for your immune system response to calm down.
a little ' light ' reading ?
All things Graves Disease - elaine-moore,com
All things Hashimoto's - thyroidpharmaist.com
Thank you! Those are the only tests I have. I think a beta blocker will help with my symptoms - I have a classic hyperthyroid presentation. The problems could be caused by post covid inflammation of the thyroid or a disease - I will push for antibody tests.
Well these should have been run from the initial blood test -
Do you have on line access to your medical records - maybe it's on there somewhere :
Your doctor can prescribe a beta blocker while you wait for the endo appointment :
Hi Zippyfrog❤️
My hyper journey was a nightmare mainly because I knew nothing about hyperthyroidism, the norm is to place you on anti thyroid medication which they did with me but they never got to the bottom of what my thyroid disease really was.
I foolishly trusted my gp, he never referred me to any endocrinologist I was diagnosed in sep 2018, was placed on carbimazole and left, he never even did any follow up blood work, I couldn't stomach the 2 anti thyroid drug because of gut /stomach issues (carbimazole /ptu).
By Dec I was really ill calling my surgery constantly telling my gp I couldn't stomach this anti thyroid drug, he told me to persist as the side effects would go... They didn't, and in early January 2019 I was rushed into hospital in thyroid storm.
This is where I learned soooooo much info in to my condition from the ward doctor... First he said.. "do you know what kind of thyroid condition you have".... Me: "yes gp told me an over active thyroid"
Doctor : "there are different types of thyroid disease"
Hyperthyroidism,(graves disease, hypothyroidism (you definitely don't have that) hashimos, thyroiditis... With you I'm leaning towards graves disease"this was the first time anyone mentioned graves disease to me, he then got me to see an endocrinologist, but he gave me a cheat sheet to ask the endocrinologist what tests I wanted, thyroid antibodies and the uptake scan, which he took offence by.. "Why did I need those" because I said I need to know what kind of thyroid disease I have.
He reluctantly did the tests and the very next day after the scan called me to his clinic (totally different demina) "hello karen I've got your uptake scan back, I butted in saying.." is it graves" yes I'm afraid it is but your thyrotoxic your T3, T4, are very high T4 being 100 and your antibodies are also very high😮.. I'm afraid it's going to be a thyroidectomy 🙄
So if I had my time over again I'd read up all I could on over active thyroid disease, I'd make my gp send me to an endocrinologist (your gp as done the right thing in sending you to one, but that in its self will require you to ask all the questions about your diagnosis... I'd ask for thyroid antibodies, uptake scan to, they will no doubt put you on anti thyroid drugs and beta blockers and unlike my surgery you should have regular blood checks to see if the thyroid drug is working.
I hope you get the correct information and diagnosis from your endo you have every right to ask for antibodies and an uptake scan 👍 good luck with your journey 🍀❤️
Thanks everyone for your help and perspective. The appt went well yesterday and I got the diagnosis and the medicine. All good!
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