First time to an endocrinologist: Questions an... - Thyroid UK

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First time to an endocrinologist: Questions and considerations?

Jampuppy profile image
20 Replies

Hi,

I have my first appointment with an endocrinologist in two weeks. Any suggestions as to what to ask, tests to request if she/he doesn't do it automatically, notes to have on hand, ...?

TIA!

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Jampuppy profile image
Jampuppy
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20 Replies
Marz profile image
Marz

I think you need a clear picture in your mind about what you hope to achieve and what you want the Endo to do for you.

I think tests have been covered in your earlier posts. Maybe have tests done BEFORE the appointment so results can be discussed on the day.

Have you seen this Endo before ? Have you checked him/her out on-line ?

Jampuppy profile image
Jampuppy in reply to Marz

Well I don't know if tests have been covered. I should probably post this in a more broad group. I am not convinced this is exclusively a thyroid issue. I was hoping for general endo conversations.

As I mentioned in my post, it's my first visit so I have no idea what kinds of questions they ask, what they are supposed to look for in a first time patient. My primary made such a terrible call I don't trust docs. In an effort to make sure I'm covered and they don't miss anything, I am looking for a glimpse into what others have experienced.

Marz profile image
Marz in reply to Jampuppy

Adrenals ? You could ask about testing - the 24 hr saliva test tells you more. The thyroid is the accelorator - the adrenals the gear box. 😊 Pancreas - sugar levels ? These are all Endo issues and linked to the thyroid.

thyroiduk.org

The above link will give you as much information as you can absorb to prepare you.

Nanaedake profile image
Nanaedake

Why are you seeing the Endocrinologist? It's hard to make suggestions when we don't know.

Jampuppy profile image
Jampuppy in reply to Nanaedake

Well since this is a thyroid forum I figured it'd be obvious. Since it's not maybe you could explain to me why it isn't and what other specifics come into play that made you ask that question.

Fruitandnutcase profile image
Fruitandnutcase

If you have had tests done already you could post your results and let people see what they think based on that.

If you haven't had any tests done I'm not sure how you have managed to get to seee an endocrinologist- unless you are not n the UK and they do things differently where you are.

I always had a notebook with me where I kept a note of all my blood test results along with their lab ranges, the meds I was taking - doses etc. any questions I wanted to ask, any symptoms I wanted to query, I used to list those as bullet points rather than get too involved with them and lose my endo's attention.

I suppose as well as the usual thyroid tests ( I only ever had T4 and TSH done in the NHS so I ended up paying and having my own tests done privately - that way I had more done) you could ask for vitamins B12 and D plus ferritin and folates. You want them to be high in their ranges.

I always my had blood tests done by my GP a week before I was due to see my endo - my surgery file shares with my hospital - but I think some people might have them done when they get to the hospital. I'm not sure on that.

Jampuppy profile image
Jampuppy in reply to Fruitandnutcase

Thank you. Those are the kinds of suggestions I was hoping for! 🙂

Nanaedake profile image
Nanaedake

There are different kinds of thyroid conditions which demand different approaches and possibly different investigations. What reason have you been referred for? Is it because you have lots of symptoms or because your thyroid condition is complex or some other reason? What information have you already gained through blood tests including any private blood tests. Have you got copies of all blood tests your GP has done to date, not just thyroid blood tests? It's not really a matter of trusting your doc or not, you need to be scientific and look at results with your doctors and listen to their suggestions. Listen to what the current treatments are. They should be able to tell you what your options are for improving your health then it's up to you whether you take their advice. Ask their opinion, listen, discuss and then decide. They might not have all the answers.

Jampuppy profile image
Jampuppy in reply to Nanaedake

Great! Thank you. Very helpful.

SimonA87 profile image
SimonA87

In your original post, are those values "Free" or "Total" T3/T4?

If you have high TSH, high Free T3/T4 and negative thyroid antibodies then that is unusual. I have exactly those results and I am waiting for an endocrinologist appointment myself.

I suppose you want to ask where the endocrinologist thinks the problem lies. The Thyroid is only one part of the axis:

en.wikipedia.org/wiki/Hypot...

Jampuppy profile image
Jampuppy in reply to SimonA87

Ah, that's a good question. Obvious maybe, but it's all too easy to overlook the obvious in the best of health not to mention when the endocrine system has your brain in a fog! Thank you!

SimonA87 profile image
SimonA87 in reply to Jampuppy

When I go for my Endocrinologist appointment, I will be looking for them to exclude things like Thyroid hormone resistance or a Pituitary Adenoma.

Both of those conditions would explain why I can have elevated TSH and still maintain normal Thyroid hormone levels.

Try also making a list of other health problems you have experienced. I have some bone growth issues and certain facial features that might further suggest a Pituitary Adenoma (Acromegaly).

Jampuppy profile image
Jampuppy in reply to SimonA87

Oh I never heard of those conditions! I'll note those down. It helps that you have similar ratios.

They are Free T4 & T3. A more recent test revealed that my TSH was normal (4.7) but my FT4 is 0.9 and FT4 is also very low after taking a naturopathic supplement. It put me in the ER. Something is definitely off.

SimonA87 profile image
SimonA87 in reply to Jampuppy

I think it would benefit you to create another post with all of your results and a detailed explanation of what you've been taking.

Taking any non-prescribed medications/supplements will make the job of the endocrinologist more difficult. They will be using the blood results as a starting point.

Also be aware that sometimes when you get sick with a virus, the TSH can be elevated for a while so it's important to test every couple months and get an idea of TSH over a long period of time.

Jampuppy profile image
Jampuppy in reply to SimonA87

I have.

Quasarlis profile image
Quasarlis

Ask them 'Do you mind me knocking your teeth down your throat once you have spoken all your lieing coward rubbish, tell me I'm making it all up, do absolutely nothing to help me then suggest I go on anti-depressants?' ....

Quasarlis profile image
Quasarlis

I have Hashimoto's with high levels of both anti-bodies ... Only found that out from doing the BH Thyroid + 12 test, I went to see an endo who said 'I can't find nothing wrong with you' after doing a laughable physical examination (I worked in the Middle East and have had many physical examinations, his was an absolute joke!!) I then emailed the BH results that showed me to have elevated out of range TSH as well as elevated out of range FT4, low FT3, high RT3, also a VitD deficiency and EXTREMLEY high levels of Hashi anti-bodies and a NHS 'Specialist' pulling an obscene salary from the NHS said he couldnt find nothing wrong! This is basically a medical scientist dismissing symptoms etc without having all or ignoring key aspects of the evidence ... in any other scientific field he would be considered incompetent and a fraud! .... I sent him my results from BH after our consultation along with some in depth questions and the reply I got was 'Some assays are different' and that's it!! .... Should have knocked him out when I had the chance!!

Jampuppy profile image
Jampuppy in reply to Quasarlis

OMG How deplorable! ...not to mention dangerous! I am in the US using the Veterans Administration for most of my health care - well, my testing anyway. Your experience sounds like the abysmal level of care as mine!

Have you since found someone who is qualified to treat you?

Quasarlis profile image
Quasarlis in reply to Jampuppy

That is but a fairy tail here in the UK, they are qualified but choose not to.

Jampuppy profile image
Jampuppy in reply to Quasarlis

Sometimes I wish we still lived back in the days of house calls, teas and poultices!

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