Could you please advise who I can contact for details of an endocrinologist in area ?
Thank you
Seeking an endocrinologist : Could you please... - Thyroid UK
Seeking an endocrinologist
27 Replies
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shawsAdministrator
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.
in reply to shaws
Thank your very much
SeasideSusieRemembering
Email Dionne at ThyroidUK for the list of thyroid friendly endos (private and NHS):
tukadmin@thyroiduk.org
SlowDragonAdministrator
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 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...
NHS easy postal kit vitamin D test £29 via
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 .
Are you on just levothyroxine or levothyroxine plus T3 ..or NDT
More endocrinologist prepared to prescribe T3 than NDT
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
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
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
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 :
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?
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
Come back with new post once you get results
in reply to SlowDragon
Thank you, I will
in reply to
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
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?
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.
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
Vitamin D is good
How much vitamin D are you currently supplementing
Aiming to maintain at least around 80nmol and around 100nmol maybe better
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
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
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
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
in reply to SlowDragon
Can you see post below that I accidentally posted to myself ?
Speak to your previous Endo’s secretary, he may well have handed over this practice to another doctor - happened when mine retired
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
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