What happens at an endocrinologist appointment ... - Thyroid UK

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What happens at an endocrinologist appointment for hyperthyroidism(first visit)?

sophiaashley5 profile image
20 Replies

Hi so my doctor referred me to an endocrinologist because he got my blood&urine tested, and an ultrasound to see if i have hyperthyroidism OR just thyroiditis but i didnt get results yet as im going to see my regular doctor after the endocrinologist appointment so I was wondering what happens at my first visit at the endo. Thanks

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sophiaashley5 profile image
sophiaashley5
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20 Replies
samspam profile image
samspam

Hi, I asked exactly the same question a couple of weeks ago. I'm still fairly new so hopefully someone else will have more information but I can tell you what happened at mine. He took all my history and symptoms which luckily I had written down as remembering anything is tricky for me at the mo. He also did a physical examination including my neck which revealed I had a goitre (I wasn't aware) Then told me I had graves, gave me carbimazole, I had a blood test and have to go back in 2 months. If you can then take someone with you, I didn't and there are bits I can't remember, even with my notebook.

Good luck, hope someone can offer more help x

sophiaashley5 profile image
sophiaashley5 in reply to samspam

Did the endo know right away that you had hyperthyroidism or did they give you a fine needle biopsy? Also were you referred from your family doctor after being tested for hyper?

Busdy123 profile image
Busdy123

Hi there.

At mine they just talked alot to explain what it is and give you options for treating it. I guess like make a plan together of how to get your levels better. Some I've heard depending where you are from may try and push a certain treatment onto you instead of explaining the options. I highly recommend writing a list with all your questions for them and if they haven't all been answered by the end then ask them. Also you should know how to contact them again if needed. Mine is via email. I have only seen mine once and don't see her again for 6 months. So it's important to have contact details if you need any questions etc answered.

Good luck it's nothing scary I promise.

sophiaashley5 profile image
sophiaashley5 in reply to Busdy123

Did the endo know right away that you had hyperthyroidism or did they give you a fine needle biopsy? Also were you referred from your family doctor after being tested for hyper?

Bucki profile image
Bucki

Nothing really, just more information, options

sophiaashley5 profile image
sophiaashley5 in reply to Bucki

Did the endo know right away that you had hyperthyroidism or did they give you a fine needle biopsy? Also were you referred from your family doctor after being tested for hyper?

Jackie profile image
Jackie

Hi First take a list as a prompt for yourself.

A good Endo should tests for all the standard issues, vit D, Diabetes, cholesterol, B12 + foliates and iron/ferritin.if possible calcium too. The rest depends on your bloods and how you are. Eg very low tSH, Pituitary gland, PTH ( parathyroid), follow on tests, if needed,They may arrange an ultra sound of the neck, if the Endo thinks you need it, from symptoms etc.

Above all, make sure you only mention the well recognised symptoms ie , if hypo we know it effects the sleep, in a different way to hyper. Endos seem not to. I would look at a useless NHS site for thyroid symptoms for this.!

Best wishes,

Jackie

sophiaashley5 profile image
sophiaashley5 in reply to Jackie

Did the endo know right away that you had hyperthyroidism or did they give you a fine needle biopsy? Also were you referred from your family doctor after being tested for hyper? Did it involve any needles at the endo appointment?

Jackie profile image
Jackie in reply to sophiaashley5

Hi I am a bit complicated! It took me 20 years to get any treatment.I am hypo , probably Hashi. I was diagnosed , eventually. Then I saw a private doc , who made me very ill, no tests, made me very hyper. Then cardio referred me to an Endo, at last!A lot wrong and then the Endo did various tests etc. found lots of things ,missed. Then my voice and throat , swallowing bad etc.At that stage I had an ultra sound. I had another one last year in connection with my PTH ( parathyroid)That was when everything was noticed. I also saw an ENT throat man , had a scope. voice and swallowing terrible. It was all my thyroid. Visibly swollen too.

The biopsy is only after the ultra sound. a later day, if needed. ie if nodules, Just a precaution.

My Endo referred me for everything but gP can, just a lot do notyunderstand thyroid as so complicated

Jackie.

Fruitandnutcase profile image
Fruitandnutcase

I second what Jackie says.

I made a list if all the symptoms I had (using books that gave lists) My bloods had been done on my first GP consultation who had started me on 20 mcg Carbimazole straight away, I had also had a blood test after four weeks which had been seen by my endo who wrote to me raising the dose to 40mcg.

I was told to take a urine sample which I did but it was never checked.

I was weighed, height measured then had blood pressure taken sitting and standing.

Then I saw a senior houseman rather than my actual endo, he was ok but uninspiring, he went through all about thyroid issues and talked about the different treatment options but I already knew all that from reading online and in books. Eventually he mentioned antibodies and I said 'Do you mean like in Graves?' He looked amazed and said 'Yes, that's what you've got Graves!' I don't think he would have mentioned it if I hadn't. He also had a feel at my neck and said I didn't have a goitre.

He started me on levothyroxine and said to stop the carb for 'a few days' - that was because I had been on carb fir so long I had become underactive, so I gave it four days of levothyroxine only then started on the carb again.

He did tell me my blood test results with lab ranges ( very important) in fact he wrote them down for me.

To be honest, I don't know what I was expecting but I came home feeling very disappointed, that was when I found TUK, sent for their pack, joined HU and have never looked back.

If I were you I would make a list of anything you are worried about or want to know, leave a good gap between questions so that you can write down the answer below each question. I just say I have written everything down because I will forget what I want to say and work through my list.

I also made headings for the various blood tests I had had done so that it didn't take me long to write the latest results down although I have also had print outs of my results from my GP, you are entitled to have them, I wasn't able to get a print out if the most recent ones but my GP managed to go onto the computer find them for me, we couldn't figure out why that lot didn't seem to be easily accessible.

All in all I found my first visit a bit of a let down really, as I said I don't know what I was expecting so I don't know why. Maybe I thought I was going to find the answer - whatever that was.

My second appointment was fantastic because I saw the endo herself and she was great, I also went expecting to be disappointed like the first time, visit three was quite good because the guy I saw was very good with patients and my final visit ( before the B&R was stopped ) was with another different doctor who was ok I suppose but I didn't really gel with her.

So in all I saw four different endocrinologists or their assistants, one appointment was fantastic, one was good and two were ok.

Good luck with yours :-)

sophiaashley5 profile image
sophiaashley5 in reply to Fruitandnutcase

Did the endo know right away that you had hyperthyroidism or did they give you a fine needle biopsy? Also were you referred from your family doctor after being tested for hyper? Did it involve any needles at the endo appointment?

Fruitandnutcase profile image
Fruitandnutcase in reply to sophiaashley5

They can tell from your test results, my TSH was off the scale low and my T4 was very high plus I had antibodies which was how my GP knew to start me on Carbimazole right away. I saw my GP on a Wednesday, had bloods taken on Thursday and I was taking Carbimazole by Friday, so I saw my doctor first.

I was so obviously hyper, I had the shakes, had lost a stone and a half and my heart was pounding all the time, was completely exhausted all the time, I felt very ill.

I didn't have a fine needle biopsy and no other needles were involved at the hospital.

Are you worried about needles? I'm fine if they want to take blood etc out but I'm afraid I'm a complete wimp about any kind of injections

greenginger profile image
greenginger

Hi I was on carbimazole for over 2 years. Ihave seen several endos and they were all rubbish . I was treated at a mixed endo and diabetes clinic. Hence they wanted to test urine blood pressure and weight at every visit because the majority of patients were diabetic. Those tests are of little use to someone with Graves. Getting your T4 andT3 which are relevant however were nigh on impossible.

All endos assume you are thick and so cannot be bothered to speak to you or explain the condition properly. I had to find out stuff online.

Make a list of questions to take and a partner or friend to witness.

Dont expect any miracles as there are none. Graves is mostly a conditionfor life. It will not ever fully go away. I am in remission but not sure for how long.

sophiaashley5 profile image
sophiaashley5 in reply to greenginger

Did the endo know right away that you had hyperthyroidism or did they give you a fine needle biopsy? Also were you referred from your family doctor after being tested for hyper? Did it involve any needles at the endo appointment?

greenginger profile image
greenginger in reply to sophiaashley5

Hi I had been unwell for a few years on and off and after getting pushy at my GPs my bloods came back hyper.I was given an appointment at endos for weeks later and then got a letter to start on carbimazole with no explanation. I later saw endo and although pushed for neck scan and antibodies test was ignored. I was told I had Graves and over 2 years was largely ignored and wss seen onaverage every 6 to 8 months instead of the 3 months it should have been. I have never been physically examined never mind a needle biopsy. The only needles are of the blood test variety.

bantam12 profile image
bantam12 in reply to greenginger

You would only have a needle biopsy if you had nodules.

Fruitandnutcase profile image
Fruitandnutcase in reply to greenginger

Hi greenginger, ( sorry to hijack your question Sophia) how long have you been in remission and how often do you have blood tests?

greenginger profile image
greenginger in reply to Fruitandnutcase

Since July last year. Iam supposed to have follow up bloods every 3 months but I actually saw an endo for first timesince last July, just last week. Even though my TSH has dropped from 2 to 1 theywere uninterested. Typical rubbish service.

Busdy123 profile image
Busdy123

Hi there. No I have never had a fine needle biopsy. All I had was a blood test from my general doc and he checked thyroid and all my vitamins ect it came back that I am hyper he did an additional test for Graves' disease (don't be scared by the name) doesn't mean what it sounds like and I was positive for that. By the time I saw my endo all she did was talk about treatment options and explained Graves' disease to me.

Diane1962 profile image
Diane1962

My first appointment is tomorrow morning I'm a little anxious to say the least ! Just made my list of questions to ask also taking my friend with me to be another pair of ears as I easy forget things ! Good luck at yours will let unique know how I get on x

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