Endocrinologist appointment

[Spenny1]

Hi all, I hope you're well.

After being diagnosed with auto immune thyroid disease, my doctor hasn't been overly helpful and I am unable to book an appointment for the whole of August (or September as those appointments haven't been released yet?!).

I am in a very fortunate position where I have private medical insurance through work. Today I have been referred to and Endo.

When I have my initial appointment, what testing should I be looking for if possible? Do I need FT3 and FT4? I have never had FT3 tested before and I think my FT4 was too low.

My appointments with the Endo will be limited as they class this as a chronic condition and will not cover for longer than after you are considered stable so I really would like to make the most of this.

Any advice or suggestions always very much appreciated.

[PurpleNails Administrator]

Welcome to forum.

Before attending your consultation complete a full set of tests to take results with you. This way you will get a most out of appointment.

Use a private blood testing company if necessary. Many offer option to take sample with DIY fingerprick kit. Or addition fee for clinic visit / nurse home visit for venous draw.

I remind myself of things to remember for blood tests with this checklist

A - Always check what’s being tested & collect test results with reference range.

B - Biotin - cease 3 days before draw to avoid possible test interference

C - Consistent unchanged dose - minimum 6 weeks previously.

D - Delay replacement dose on day of test (until after blood draw)

E - Early morning appointment. (Book draw as close to 09.00 as possible)

F - Fast overnight. This can have a slight impact. Drink lots of water

For complete test you need TSH, FT4 & FT3. Many doctors including specialists focus in TSH. You need to ensure FT4 & FT3 are included.

Have you had thyroid antibiotics tested to confirm autoimmune? Both TPO & TG antibodies?

Also important to test folate, ferritin, B12 & Vitamin D.

Have you been started on any replacement?

List of companies offering blood testing options included. Options vary from basic function, to packages including thyroid antibodies & key nutrients.

Medichecks thyroid advance good option as contains all the biomarkers & CRP inflammation marker.

thyroiduk.org/help-and-supp...

[Spenny1 in reply to PurpleNails]

Hi PurpleNails, thank you so much for this, really helpful. I have just ordered through Medichecks and they had 20% off!

I have had antibodies checked and I do have then (TPO not TG). Dr confirmed autoimmune thyroid disease and started me on Levo.

Ferritin and B12 within range, Vit D low and I have been on supplements since March for that.

Thanks again for your help

[PurpleNails Administrator in reply to Spenny1]

It’s usual to be started on 50mcg levo then every 6-8 weeks retest levels and increase dose in 25mcg steps.

Initially replacement tops up levels but by 6 weeks it replaces failing thyroid levels.

Have you had retests & increases yet ?

Most feel well when TSH is in lower part of range (under 2, nearer 1) FT4 in top 3rd of range & FT3 at least 50%.

What is your current levo dose? Do you always get same brand of levo?

You need optimal nutrients for levo to work well & for your body convert sufficient amounts to T3. Doctors will only deal with obvious nutrient deficiencies & then often offer insufficient supplements to improve levels and do not retest.

If you add you results & ranges for nutrients and what doses of supplements you take we can advise further.

[Spenny1 in reply to PurpleNails]

I was started on 50mcg but the doctor requested re-test in 3 months but now I cannot get an appointment for at least another 6 weeks which is why I am now going private. 2 scripts of Levo have been the same brand/packaging and so on.

I don't have my results with me at the moment but I did have a good look into them and it was only Vit D that was insufficient which I am working on. Currently using a Vit D spray which is 4000IU.

I still feel pretty rough so hopefully I can get some help at the endo appt.

[SlowDragon Administrator in reply to Spenny1]

I was started on 50mcg but the doctor requested re-test in 3 months

should have been retested after 8 weeks

You should be able to book blood test via receptionist

Book early morning, ideally just before 9am. Only drink water between waking and test and last dose levothyroxine 24 hours before test

[Spenny1 in reply to SlowDragon]

I have the blood test booked, I just cannot get an appt with the GP to increase if needed or get help with anything else which is why I have now booked privately.

The problem I have is that the receptionists seem to think they have some sort of medical training and when I asked for an earlier appt to see the GP she said no, the doctor said 3 months so I don't understand what the rush is... I had to explain that the rush is I feel like rubbish!

[SlowDragon Administrator in reply to Spenny1]

What were your results after 2 months on 50mcg levothyroxine

Assuming they show you need increase

Email/write to GP requesting new prescription for increase in levothyroxine to 75mcg per day and new blood test in 2 months time

Which brand of levothyroxine are you currently taking

[SlowDragon Administrator in reply to Spenny1]

which is why I have now booked privately.

Make sure you get test results from Medichecks BEFORE consultation

Is this endocrinologist a recommended thyroid specialist

List of thyroid specialists and endocrinologists

healthunlocked.com/thyroidu...

Vast majority of endocrinologists are diabetes specialists

I don't have access to those at the moment as I am not at home. But I recall that they were ok.

Please add actual results on here when you get home…..likely to show you need next dose increase

I will be having those retested in 2 weeks.

Is this when getting Medichecks test ….or another test on NHS

[SlowDragon Administrator in reply to Spenny1]

Ferritin and B12 within range,

Please add actual results

Folate result too

GP should organise coeliac blood test too if you are not already on strictly gluten free diet

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

[Spenny1 in reply to SlowDragon]

I don't have access to those at the moment as I am not at home. But I recall that they were ok. I will be having those retested in 2 weeks.

I really just wanted to know if there was anything additional I should be asking the Endo never having seen anyone face to face re thyroiditis.

[SlowDragon Administrator in reply to Spenny1]

Typically dose levothyroxine is increased slowly upwards in 25mcg steps over 6-12 months until on full replacement dose (usually around 1.6mcg Levo per kilo of your weight per day)

Many people find different brands levothyroxine are not interchangeable. Once you find one that suits best get that at each prescription

Essential to test folate, ferritin and B12 and vitamin D at least annually and maintain at OPTIMAL levels

Very high percentage of autoimmune thyroid patients find strictly gluten free diet helps or is essential…..get coeliac test first

Similarly dairy free diet may be worth trying in few months time

Generally only change one thing at a time