Best endocrinologist in South East ***Please Pr... - Thyroid UK

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Best endocrinologist in South East ***Please Private message Doctor names & do not post on forum***

Uniarook profile image
14 Replies

Hi everybody,So hoping you can help me with some advice. I am a 38 year old woman who has always struggled with severe tiredness, however more recently this has escalated to frequent sore throat, dry skin, thinning hair. It has escalated quite rapidly in the last 10 months where I got a full body red rash, starting developing vitiligo, full body aches, increased hair thinking and tiredness. I have also struggled to lose weight despite low carb healthy eating and put on weight now very easily.

My thyroid antibodies came back as highly irregular in a test which lead to hashimotos duagnosis. I think I may be suffering from some other issues that may be autoimmune related.

It is do distressing and feel like I don't have any help. My thyroid blood tests came back normal. I also am hoping to start trying for a child soon but can't do this when am unwell and also concerned this is all having an issue with fertility.

Could someone please help with advice, and whether they have had similar issues and importantly if they know a good endocrinologist in or around Kent area.

Thank you x

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Uniarook
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14 Replies
PurpleNails profile image
PurpleNailsAdministrator

Welcome to group.

Do you have any results. Eg via online access or obtain a printed copy with ranges. Your TPO are positive but you need to know where your are with TSH, FT4 & FT3.

I’ve edited your title to remind members not to post dr names. We often close replies for post asking for doctor recommendations but I’m sure others can add helpful advice.

Uniarook profile image
Uniarook in reply toPurpleNails

Thank you SO Much purple nails. 💜

SlowDragon profile image
SlowDragonAdministrator

First steps are

1) get copies of all recent test results and ranges

Please add any results you have already on here

2) get FULL thyroid and vitamin testing done BEFORE considering booking any consultation

High thyroid antibodies confirms autoimmune thyroid disease

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)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

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

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

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...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Uniarook profile image
Uniarook in reply toSlowDragon

Thank you SO much SlowDragon. Hugely helpful. Found it so hard to get help so appreciate it

SlowDragon profile image
SlowDragonAdministrator

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly 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

Post discussing gluten

healthunlocked.com/thyroidu...

GP should do coeliac blood test

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

Beckyrowe81 profile image
Beckyrowe81

I’m exactly the same. TPO anti indies high but normal thyroid levels. Feel exhausted, stiff and aching, thinning hair, gaining weight despite co trolling calories, depressed,.. I feel so much older than I am! No help for me either!!

Uniarook profile image
Uniarook in reply toBeckyrowe81

Hi Becky, It's so worrying isn't it. I will let you know how I get on to helpbwith any advice. I definitely think my low foliate levels have impacted hair thinning - will take folate tablets and biotin (after tests as this effects thyroid tests) wondering if I should take minoxidil too.....

Going to follow all this advice that @PurpleNails and @SlowDragon have given.

I would say however Becky that you must do Gluten free. I was in a bad way in May - severe body aches, and full body rash - Gluten free sorted this out after 2 weeks. Xx

Bearo profile image
Bearo

Have you told your GP you are trying for a baby? Sometimes these are the magic words to get some action taken.

Uniarook profile image
Uniarook

Thank you SO much for your comments. I would like to reply individually but PurpleNails and SlowDragon in the meantime. These are my last test results. These were taken last year so actually before my symptoms started getting bad from Jan if this year. I am booking in for a test with thriva for an update

Test September 22
Mollyfan profile image
Mollyfan in reply toUniarook

I am sorry you are feeling so bad.

It looks like you are deficient in folate ( not low, actually medically deficient) which I think could be causing some of your symptoms in addition to the Hashimotos. It is extremely important to resolve this if you are planning a pregnancy.

I would discuss it with your GP and get an up to date blood test done for B12 and folate.

Some info…

my.clevelandclinic.org/heal...

Good luck!

SlowDragon profile image
SlowDragonAdministrator in reply toUniarook

Have you retested since

EXACTLY what vitamin supplements are you taking

Folate was deficient

GP should have prescribed folic acid….did they

Then when finished folic acid prescribed…..changed to daily vitamin B complex

serum B12 inadequate

Vitamin D insufficient

Optimal vitamin D at least over 80nmol

No ferritin result

Retest full thyroid and vitamin levels

As per links in my previous reply

SlowDragon profile image
SlowDragonAdministrator in reply toUniarook

Would suspect you may also have low ferritin

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If ferritin on main test under 40 ….get full iron panel test

Medichecks iron panel test

medichecks.com/products/iro...

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

SlowDragon profile image
SlowDragonAdministrator

your active B12 is ok , but serum B12 low

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex 

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...

Low folate

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....

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

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

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Pregnancy guidelines

thyroiduk.org/having-a-baby-2/

NICE guidelines that if hypothyroid or subclinical you should see endocrinologist BEFORE TTC

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/files/docs/...

See pages 7&8

btf-thyroid.org/Handlers/Do...

Also here - dose increase in levothyroxine as soon as pregnancy test confirms conception

cuh.nhs.uk/patient-informat...

thyroidpharmacist.com/artic...

Low ferritin, low thyroid levels and miscarriage

preventmiscarriage.com/iron...

Low iron and hypothyroid

endocrineweb.com/news/thyro...

Folate and B12 and Neural tube defects and autism

healthunlocked.com/thyroidu...

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