Hello! 
I’m a long term under active thyroid sufferer (post glandular fever when I was 17) and I am seeing an endocrinologist through Benenden. I have a list of three to choose from and a limited budget. I was wondering if it was possible to check if any were on the recommended list? Who do I need to contact please?
They are endocrinologists in the mindlands/derby/notts area.
thank you.
Megs00
There is no "recommended" endo list. It's a list of names put forward to ThyroidUK by members but they are not recommended by ThyroidUK.
You can email for the list:
tukadmin@thyroiduk.org
You can always ask on the forum if anyone has seen any of the ones you can use. You can name them in a post to ask members to reply with any information by private message, we can't discuss individual doctors on the forum.
perfect, thank you. X
BEFORE booking any consultation we would always recommend getting FULL thyroid and vitamin testing done ….otherwise first appointment is waste of time and money
ALWAYS test thyroid levels early morning, ideally around 9am latest for highest TSH (if on levothyroxine last dose levothyroxine 24 hours before test)
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Tips on how to do DIY finger prick test
healthunlocked.com/thyroidu...
or can pay extra for private blood draw
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
glandular fever = Epstein Barr Virus - EBV
EBV and Hashimoto’s
thyroidpharmacist.com/artic...
drhedberg.com/epstein-barr-...
hypothyroidmom.com/hashimot...
drchristianson.com/epstein-...
List of thyroid specialists and endocrinologists
healthunlocked.com/thyroidu...
If you have any test results now please add them
If not got tested…..test and come back with new post once you get results
Hello,
Thank you so much for the response, I really appreciate it. I’ve got lots of test results from over the years. There are a few I don’t have and one I’m not sure of.
T4 - 17.2 (feb) T3 - (do not have) TSH - 5.7 (feb)
TPO and TG? I’m not sure of, I’ve got Thyroid Peroxidase Antibody, is that TPO? That was tested in April 21 and was 271 (+)
Vitamin D - 24 (feb) Folate - 4.7 (feb) B12- 277 (feb)
My GP has asked me to have another blood test. (Not sure why) so if I ask to have T3, TPO and TG added, will that be enough?
Huge thank you
What’s the range on Ft4
TSH over range presumably
High TPO confirms autoimmune thyroid disease (hashimoto’s)
With two tests with TSH over 5 and high thyroid antibodies and symptoms you should be started on trial of levothyroxine
Starting levothyroxine - flow chart
gps.northcentrallondonccg.n...
standard STARTER dose is 50mcg levothyroxine
sorry, he’s literally given me a print out of all bloods ever taken so I wasn’t sure which you’d want to see. Lol
Serum Ferritin is interesting. It was 72 (feb this year) 29 (May last year) 41 (July 2021) 14 (April 2019) I’m not sure what the ‘normal’ range is.
So ferritin is improving …..likely because dose levothyroxine was increased
Ferritin below 30 is deficient
Aiming for 70 minimum
Low vitamin levels are common when hypothyroid due to low stomach acid levels and poor nutrient absorption
No ferritin result?
What’s happening about your vitamin D
Presumably this was 24nmol - U.K. units
Vitamin D below 25nmol is deficient
GP should have prescribed loading dose vitamin D. That’s a total of 300,000iu over 6-8 weeks and retest at end of the course
5000iu daily for 8 weeks
Or
7000iu daily for 6 weeks
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, you will need on going maintenance dose to keep it there.
Test twice yearly via NHS private testing service when supplementing
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
Only add one supplement at a time
Then wait 10-14 days to assess before starting another
starting with vitamin D, followed by magnesium
Folate and B12 too low
Do you have Low B12 symptoms
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
B12 drops
natureprovides.com/products...
Or
B12 sublingual lozenges
uk.iherb.com/pr/jarrow-form...
cytoplan.co.uk/shop-by-prod...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
Other options
healthunlocked.com/thyroidu....
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...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500
My GP has asked me to have another blood test. (Not sure why) so if I ask to have T3, TPO and TG added, will that be enough?
That’s because you need two tests with TSH over 5 before starting on levothyroxine
NHS rarely tests Ft3
TPO has been tested and is positive. No point retesting
You need ferritin level tested. Ideally iron panel too
Book early morning test at 9am
thank you so much for this, it’s really helpful. Some of it - mind blowing.
I probably should have given some background so apologies for that! I was diagnosed when I was 17 following glandular fever and it was never referred to as Hashimoto’s… ever! The GP has always ignored the autoimmune element and treated it ‘just as an under active thyroid.’
I’m now 37, I’ve been on levothyroxine for about 20 years and been complaining of still struggling with the same symptoms consistently for about 5 years. Extreme tiredness, massive weight gain (about 6 stone) that I have to work really hard to just maintain. IBS symptoms (awaiting diagnosis) , irregular periods, fibroids, TERRIBLE hair and nails, swollen face, sensitivity to cold/heat, restless legs at night… I could go on.
I’m on 125 and 150mcg of levothyroxine on alternate days and have been for about three years. I was on 100mcg for (at least) a decade before then.
So, now the TSH is finally at a level where they now have to accept it’s not right, hes asking for another blood test 🙄
And no, they just told me to buy a supplement for my Vit D.
So how much vitamin D have you been taking
Any vitamin D tablets or gels should be taken at least 4 hours away from levothyroxine
on Levo TSH should always be below 2
So you need dose increase in levothyroxine to 150mcg daily retest in 6-8 weeks
Meanwhile
IBS symptoms (awaiting diagnosis) , irregular periods, fibroids, TERRIBLE hair and nails, swollen face, sensitivity to cold/heat, restless legs at night… I could go on. I’m on 125 and 150mcg of levothyroxine on alternate days and have been for about three years. I was on 100mcg for (at least) a decade before then.
Have you had coeliac blood test done
If not that’s next step
Your antibodies are high this is Hashimoto's, (also by medics here in UK more commonly just as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten.
Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
restartmed.com/hashimotos-g...
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Hashimoto’s and leaky gut often occur together
I definitely found the whole experience of a private endo a let down; perhaps even worse really. It was more hopeful than the NHS but still vastly short of real help. She was perfectly willing to prescribe T3, which I know I need but she bowed out at the first sign of trouble, leaving me properly ‘gaslit’.
I have since had to go back to basics and lost another 6 months or so of my life. Best advice is here on the forum.
If I want to check out a doctor I would do a few things beforehand.
1) I'd find him/her on the GMC medical register and see if he/she was on the specialist register or the GP register :
gmc-uk.org/registration-and...
I would do this because I like to know a rough age of the person I'm seeing. If I'm expecting someone of 30, and they turn out to be 60 it can leave me very unprepared. It isn't guaranteed to be accurate though, because people don't always end up on the register(s) at the same age.
2) You could find out if the person has published any research, making sure that you are not confusing people with the same name. If someone is an endocrinologist who has published several papers on diabetes then you can at least be prepared for them not to be a thyroid specialist (and I wouldn't see a diabetes specialist for anything thyroid-related anyway).
Sites to search for published research :
scholar.google.co.uk/schhp?...
3) Look up the website of the hospital/clinic/surgery they work at and see if you can find out any information about them and the department they work for, for example, their position in the place they work, and their qualifications.
4) Just do a standard google search for their names and see if you can find any reviews.
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