Seeking an endocrinologist

Could you please advise who I can contact for details of an endocrinologist in area ?

Thank you

[Simplyred57]

Which area are you in ?

[Hidden in reply to Simplyred57]

Staffordshire / West Midlands

[shaws Administrator]

Thyroiduk.org.uk (the 'mother' of this forum) has a list that may be helpful for you. You'd have to give the area of your preference so that a member who has information will send you a private message.

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

If it is an NHS one, you'd have to give the area you live although your GP would have to agree (I believe). Some wont agree as I experienced personally.

[Hidden in reply to shaws]

Thank your very much

[SeasideSusie Remembering]

Email Dionne at ThyroidUK for the list of thyroid friendly endos (private and NHS):

[e-mail]

[SlowDragon Administrator]

Before considering seeing any thyroid specialist endocrinologist, especially if paying for private consultation

We ALWAYS recommend getting FULL thyroid and vitamins tested BEFORE booking a consultation

A) important to test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

B)essential to maintain optimal vitamin levels. Testing and improving low vitamin levels is first step ......then retest thyroid levels again

How much levothyroxine are you currently taking

Do you always get same brand of levothyroxine at each prescription

What vitamin supplements are you currently taking

Have you had thyroid antibodies tested

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

When on T3, day before test, split dose into three smaller doses roughly equal 8 hour intervals. Taking last dose T3 at roughly 8-12 hours before test

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[Hidden in reply to SlowDragon]

Thank you for your advice. I saw a private endo for many years (having endured inappropriate prescribing for 3 years prior to that ) - until he retired. Since his retirement I have struggled with GP treatment and I think I am going to have to find another consultant .

[SlowDragon Administrator in reply to Hidden]

Are you on just levothyroxine or levothyroxine plus T3 ..or NDT

More endocrinologist prepared to prescribe T3 than NDT

[Hidden in reply to SlowDragon]

I have only ever been on levo : to begin with my GP failed to diagnose me at all (said I worked too much !) then when I did get diagnosed, I had two years of hellish prescribing - until a locum, who did a brain scan for me, told me to get a referral - which I did, and it took probably another year to get prescribing to the point where I felt as well as possible . I then saw this endo until he retired and he helped in overseeing a number of things for me . Since he retired I’ve had fairly standard GP responses - I did see an NHS endo who advised to carry on as I had before - although my GP surgery have lost that letter (I have a copy ).

I’ve since had complications with other treatments and surgeries (breast cancer / arthritis) and am disturbed by an increasing lack of interest in my well being from my GP.

For months now I have struggled with fatigue/light headedness/blurred vision and I rang them this week - spoke to a GP who went through a tick list .......and at the end said - your last blood test in September showed they you are deficient in iron ......and hyperthyroid .

I have requested copy blood tests for 2 years and been refused .

I was furious that this had not been shared with me - especially as I had spoken to my GP at least twice since the test about fatigue, and on one occasion he said “well your are 66, what do you expect ?” - he’s very against my prescribing .

Anyway I agreed to another blood test but said I would not agree to any change in prescribing without a referral to an endo .

I couldn’t even get out of them what they are testing for but I’ll ask when I see the nurse .

I have always been very active/sporty and I am not prepared to give up on what keeps me sane . I also have an adult disabled daughter who requires a lot of support - and it makes me so angry to feel that my doctor thinks my age obviates the right to be well.

I’m not working so don’t have a great income and would prefer to see someone via the NHS but am resigned to the fact that I am going to have to fund a consultation, at least, to be able to move on.

Your advice is very much appreciated and I shall act on it prior to any appt.

Apologies for long post

[SlowDragon Administrator in reply to Hidden]

You are legally entitled to copies of all your blood test results and ranges

Contact Practice Manager and put in formal request for full access to all your blood test results and ranges since diagnosis

Known as a subject access request (SARs)

Aim of levothyroxine is for Ft3 and FT4 to be minimum of 60% through range

Highly unlikely you have had Ft3 tested

If your test last September showed anaemic were you prescribed iron supplements

If not ....why not

On levo we MUST have optimal vitamin levels

Come back with new post once you get old results

And new ones

[SlowDragon Administrator in reply to Hidden]

First step (and cheapest ) is getting thyroid and vitamin levels tested

Sounds like autoimmune thyroid disease if you also have arthritis

Have you had coeliac blood test done

Gluten free diet often helps or is essential with autoimmune thyroid disease (hashimoto's)

Arthritis often gluten free helps too

[Hidden in reply to SlowDragon]

Thank you so much for your replies .Wrt T3 - it was definitely tested and discussed with me when I had annual reviews privately .

I have tried to download test results via the Patient Access portal and nothing is available . I have rung reception and been fibbed off with ‘I’m waiting to ask the doctor”.

As yet, no one is allowed to enter the practice since lockdown.

I suspect I wasn’t treated for anaemia because the result was one digit above the lowest number in range (even getting that took some probing ) - and my guess is that because it wasn’t in red -no one really looked at it. GP has no excuse really as I had told him all the symptoms - and had freezing cold, numb feet . ‘Ignore it’ was his advice .

I’m getting ready for battle now. Have been defeated by the remoteness of health care during lockdown : I have had huge issues with my daughter ‘s care but have at least been able to see her GP with her face to face all the way through . She is a patient in a different practice.

Very many thanks for your support :

[SlowDragon Administrator in reply to Hidden]

I couldn’t even get out of them what they are testing for but I’ll ask when I see the nurse

Request nurse include testing for folate, B12, vitamin D and full iron panel test for anaemia including ferritin

For thyroid you need TSH, Ft3, FT4 (and thyroid antibodies if not been tested)

What vitamin supplements do you currently take

Important to stop any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results

Low B12 common as we get older even if not hypothyroid

What's your diet like?

Vegetarian or vegan?

[Hidden in reply to SlowDragon]

Thank you: I will have that test list prepared.

I was taking a fizzy multivitamin that had biotin but I ran out at the beginning of the week, so will have gone a full week without .

I have also been taking Spatone daily - and I recently purchased a one a day B12 tablet recommended on here .

Low vit D was identified about 4 years ago and I now use the Better You Vit D spray as tablets brought me out in a rash on my torso.

My diet is predominantly vegetarian : I eat sardines a few times a week : fruit, nuts plain yogurts, pulses and veg . I don’t cook or eat any meat at home any more .

Thank you once again- so very much appreciated

[SlowDragon Administrator in reply to Hidden]

Come back with new post once you get results

[Hidden in reply to SlowDragon]

Thank you, I will

[Hidden in reply to Hidden]

I have been for blood test this morning : Nurse confirmed that everything is being tested as advised . Here is the print out of my test from last September / I will collect latest results next week. I have also spoke to to Endo clinic secretary and she is sending me a copy of the letter when I was discharged back to my GP in 2018.

Appreciate your support

Page 1

[SlowDragon Administrator in reply to Hidden]

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Ft4 is high

Obviously no Ft3

Ever had thyroid antibodies tested to confirm autoimmune thyroid disease?

[Hidden in reply to SlowDragon]

Vit D is just Better You spray once a day - it has improved . I am outside a lot too .I have been taking SpaTone regularly .

I asked nurse about T3 this morning and she said it would be included - will find out next week.

[Hidden in reply to SlowDragon]

WRT high T4 - I think this has always been the case - I remember previous consultant saying I have no hyper symptoms - which I still don’t - and if Levo is reduced I feel awful with hypo symptoms . At Endo clinic in 2018, the doctor I saw said they see many patients worth the same experience but they don’t know why - and that thyroid issues were the ‘Cinderella’ of research funding

[SlowDragon Administrator in reply to Hidden]

Vitamin D is good

How much vitamin D are you currently supplementing

Aiming to maintain at least around 80nmol and around 100nmol maybe better

[SlowDragon Administrator in reply to Hidden]

Obviously ferritin is far too low

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first

Post discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Why low ferritin needs improving

healthunlocked.com/thyroidu...

Iron/ferritin and restless legs

healthunlocked.com/thyroidu...

Helpful post about iron supplements and testing

healthunlocked.com/thyroidu...

Post about iron supplements

healthunlocked.com/thyroidu...

[SlowDragon Administrator in reply to Hidden]

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

[SlowDragon Administrator in reply to Hidden]

So I would suggest improving low folate by starting supplements, ongoing increase in iron rich foods.

If taking any iron supplements you must do full iron panel test at least 3 times year to check iron isn’t too high

Trialing absolutely strictly gluten free diet is ALWAYS worth trying

Do you always get same brand of levothyroxine at each prescription

Resting thyroid levels....TSH, Ft4 and Ft3 via Monitor My Health in say 2 months time

Only test early Monday or Tuesday morning and post back immediately

Only test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Remember to stop taking vitamin B complex week before test

[Hidden in reply to SlowDragon]

Can you see post below that I accidentally posted to myself ?

[Wired123]

Speak to your previous Endo’s secretary, he may well have handed over this practice to another doctor - happened when mine retired

[Hidden in reply to Wired123]

Thank you, yes, I did that - it’s now changed again.I have a name from the secretary and can have a private appt if I want

They are currently doing telephone consultations only in clinics.

Will await latest test results and GP response and then decide what do .

Many thanks