Thank you all for all the valuable information so far.
I'm going to my first endocrinologist visit tomorrow.I would appreciate any advice as what questions to ask and what hacks to know beforehand. Im seeing her privately so need to make it a value for money as it's so difficult to get an appointment. Im in Ireland.
My blood tests in Jan:
TSH( 0.30 - 4.20 *)<0.01 mU/L. Still supressed a month later.
Free T4 (10.5 - 22.8) *41.4 pmol/L....
It has gone down to 25.9
Free T3 (3.1 - 6.8 ). 16.1 . GP didnt retest it God knows why.
TRO ab <15 ( 0-34) both in Jan and February. GP wouldn't test any other abs.
Ultrasound scan showed multiple small nodules. One 1.1 cm with significant internal vascularity and internal calcification. (Is this bad i wonder?)
Have been on 40mg Carbimazole for a month. Symptoms getting better but still bothered with puffy swollen eyes and tinnitus.
Taking d3+k2 supplements, magnesium, Bcomplex ( on hold at the mo till all tests are done), omega 3
Thanks in advance for the advice.
Written by
tromashka
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Sorry you didn’t get any earlier replies & in enough time to give you any pointers before the day.
Was the endocrinologist able to give you some answers or confirmation of what is going on. Did you get an explanation of the scan report findings?
Once you have current, blood test of you thyroid function TSH,FT3, FT4. TPO, TGab & as Graves suspected TRab or TSI, and key nutrients you will have a better picture.
Endo presumed its Graves without any TSI tests. I insisted on checking the antibodies to avoid any "highly likelies", so she will ask my GP to test for those.
She didnt explain much re: ultrasound scan. Just said the thyroid's vascularity is high in general which proves its Graves (how???). Re: nodule... No need for biopsy. she*ll refer me to get uptake scan done and a repeat ultrasound ( on my questioning why i need another ultrasound ( as they cost 150 euro) she just noted the guy she is sending me to is very good. ;)))
I expressed my doubts about carbimazole dosage ( 40 mg). She insisted on continuing 40mg for a month, then reduce it 20mg for another month and then 10 mg for the third month .
I asked her how i should support my liver while taking this amount of carbimazole. She assured there's no need, as it's not PTU....
Hyperthyroidism is excess activity & which does increase blood flow due to any cause.
Uptake scan will show if nodules are over functioning.
I can see why you are dubious about a repeat scan by her “good guy”....seems a waste of your money especially if an uptake scan will be performed, which will show the area of activity. Each condition has a distinct pattern.
She shouldn’t be predicting dose requirements, 40mg, for month, 20mg for month, 10mg for month. There no way to set a regimen in advance.
You should be tested (regularly, 6 weekly is standard) & dose tweaked by the FT4 & FT3 result.
PTU is harder on liver but there are rare cases with carbimazole. There’s not really any way to protect it.
Re: repeat US scan. I'm angry at myself ( only a bit!!! ) I didnt ask more questions why I need one. Im still learning how to talk to these doctors. The visit went at such a fast pace I did loose my cool of thoughts eventually. Not used to be bombarded with questions, no eye contact and abrupt answers to my enquiries.
Yes, prescribing dosage without tests that is something else. Im laughing in shock. She didnt even mention antibody test till I repeated my question twice.
I refuse to take 40 mg for another month . I'll stick to 30mg and retest privately in a few weeks. And then will go 20 if all good.
I dont have a chance to get second opinion via health system. The queues for specialists are crazy.
On the way back home I popped into a health shop, it just looked really pretty. The owner/ manager was extremely engaging. I mentioned to her I'm dealing with hyper thyroid and looking for a few supplements. The lady was very nice to recommend me a doctor who deals with thyroid problems using natural ways. She is a nutritional specialist and is closer to where I live. I'll definitely google her.
Also she recommended a book by Dr Aviva Romm. The info might end up to be useless. But it was really nice to get some caring attitude after that endo visit.
Dont be cross with yourself. The same has happened to me more than once. Recently my endo called me unexpectedly. After cancelling an appointment they hadn’t informed me about. I got off the phone and realised I had asked 3 questions and she didn’t answer any of them, how do they manage to do that? Next time I plan on having 1 main question and will keep at it until I get a reply.
Keep up with mediation. Helping to manage stress will be really good for you. Along with good diet, healthy lifestyle & ensuring nutritional levels optimal.
Some have tried complimentary remedies as they can relieve symptoms. But generally anti thyroid managed by a professional is the only successful way to stabilise your thyroid levels long term.
I and others say Acetly L cartinine helpful and enhances carbimazole. I was able to lower my dose of carbimazole. I lost weight around the same time so it may have been due to this.
I have found a couple a site which suggest some natural remedies.
It’s generally advice aimed at levo as it’s a very sensitive hormone and many things can affect its absorption.
I found coffee or B vitamins which I took doesn’t affect my carbimazole. I also used to take it with propranolol. I used to take 2 doses. Then I changed to lunch time 1x per day.
Now I’m a bit more organised, I spread out my medications and supplements more evenly. I take mine upon waking. Take a walk then have breakfast about an hour later.
I suppose taking it when best absorbed will allow you to take the lowest dose.
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) I didnt ask more questions why I need one. Im still learning how to talk to these doctors. The visit went at such a fast pace I did loose my cool of thoughts eventually. Not used to be bombarded with questions, no eye contact and abrupt answers to my enquiries. 
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