specialist : Hi Can anyone recommend a thyroid... - Thyroid UK

Thyroid UK

137,905 members161,724 posts

specialist

FLAMB profile image
26 Replies

Hi

Can anyone recommend a thyroid specialist?

I’m sick of feeling tired, exhausted, losing my hair and constantly telling the doctor ‘I just don’t feel right’ for them not to understand.

I’m also suffering horrible back pain (only at night) and now swollen joints in my hands. I’m sure it’s arthritis, but again waiting endlessly for the doctor to see me.

Any recommendations for a specialist would be most grateful.

Thanks

Leanne

Written by
FLAMB profile image
FLAMB
To view profiles and participate in discussions please or .
26 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Your TSH was quite high when you last posted. What were your most recent results?

What were your latest results for ferritin, folate, B12 & D3? Have you been supplementing from when your levels were low?

There are a fair few details that even Endocrinologists don't know that patient groups like this one do to help make you feel well.

As you have Hashi's have you tried a gluten free diet, sometimes dairy needs to be eliminated too.

FLAMB profile image
FLAMB in reply to Jaydee1507

found my TSH result it is now 1.3

SlowDragon profile image
SlowDragonAdministrator in reply to FLAMB

so you need to test TSH, Ft4 and Ft3

Test early morning last dose levothyroxine 24 hours before test

Just TSH tells you nothing

SlowDragon profile image
SlowDragonAdministrator

previous post

healthunlocked.com/thyroidu...

Before considering books any private consultation with endocrinologist you will need new testing including vitamin D, folate, ferritin and B12

otherwise consultation is waste of time and money

ALWAYS test early morning and last dose levothyroxine 24 hours before test

What vitamin supplements are you currently taking

Come back with new post once you get results, members can advise on next steps.

Have you tried gluten free and or dairy free

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...

If you can get GP to test vitamins 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/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

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

Only do private testing early Monday or Tuesday morning. 

FLAMB profile image
FLAMB in reply to SlowDragon

thanks for your messages, but you send the same message every time.

My doctor says I am within range. I take vitamin D, B complex and iron. All results for this have come back fine.

I have had a full blood count that says all okay.

I challenge back. Doctor says I’m within range, perhaps to exercise more. Doctor signs me off.

I would like to see a specialist who really understand the realms of my results. This is the reason so my post.

With the additional symptoms I am experiencing I just want to see someone who will give me some answers.

SlowDragon profile image
SlowDragonAdministrator in reply to FLAMB

Results from 11 months ago are too old to take to a consultation

They clearly showed you had very low Ft3

You will need recent vitamin results too

What vitamins are you currently taking

Frequently necessary to be gluten free and dairy free

Have you given these a good trial

FLAMB profile image
FLAMB in reply to SlowDragon

what does it mean if my ft3 is too low?

Vitamins I take - b complex, iron, vit c, vit D daily.

I haven’t tried gluten free … what is the link of gluten affecting your thyroid?

SlowDragon profile image
SlowDragonAdministrator in reply to FLAMB

please add most recent vitamin results and ranges

On levothyroxine we need Good levels. Test annually

Gluten and thyroid was explained in detail by radd in previous post 11 months ago - see here

healthunlocked.com/thyroidu...

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

SlowDragon profile image
SlowDragonAdministrator in reply to FLAMB

what does it mean if my ft3 is too low?

Levothyroxine is Ft4 (storage hormone)

Ft4 has to be converted to Ft3 (active hormone) before cells can use it

For good conversion we need good vitamin levels, good gut function and good liver function

When adequately treated most people will have Ft3 at least 50-60% through range

Before considering adding T3

Fine tuning levothyroxine, getting vitamins at optimal levels first step to improve conversion rate

Frequently with Hashimoto’s gluten free/dairy free helps

Conversion is often poor with Hashimoto’s even after all these steps

TSH 4.0 (range 0.27-4.2)

T3 3.53 (range 3.1-6.8)

Free thyroxine 20 (range 12-22)

Previous results 11 months ago and you confirmed test was early morning and last dose levothyroxine 24 hours before test

FT4: 20 pmol/l (Range 12 - 22)

Ft4 80.00% through range

FT3: 3.53 pmol/l (Range 3.1 - 6.8)

Ft3 only 11.62% through range

shows poor conversion rate

Looking for both Ft4 and Ft3 roughly equal at 60-70% through range

So before paying for a consultation you need to get thyroid and vitamins tested

Remember to stop taking any supplements that contain biotin 5-7 days before test as biotin can falsely affect test results- eg vitamin B complex

SlowDragon profile image
SlowDragonAdministrator in reply to FLAMB

All results for this have come back fine.

What are these vitamin results

How long ago were they tested

NHS only tests for and treats vitamin deficiencies

Jaydee1507 profile image
Jaydee1507Administrator in reply to FLAMB

I hear what you're saying about GP saying you are within range but you need to challenge them on that. Be very clear about remaining symptoms, get info from here to present to your GP about keeping your TSH lower and keep trying. If one doctor refuses then go to the next one. In any one practice there is usually one GP who is more flexible than others. Keep going back to them and make a bit of a nuisance of yourself (nicely) until they give in. Do not take no for an answer.

healthunlocked.com/thyroidu....

FLAMB profile image
FLAMB in reply to Jaydee1507

I agree with keep going back, but it’s very hard when I’m not 100% on the areas I should challenge and when I took my results last time I had lots of green ticks to say I was within range. I challenged my antibody results that did come back high (thyroid peroxidase antibodies 180 IU/ml) and told this is usual to see with a thyroid issue.

It would be nice just to sit down and speak to someone who knows a range can be personal to each individual.

Jaydee1507 profile image
Jaydee1507Administrator in reply to FLAMB

We know though that within range isn't good enough to feel well. If necessary take someone with you who you've prepped beforehand to support you. Read and print out some of the link I posted above to use as evidence for an increase.

FLAMB profile image
FLAMB in reply to Jaydee1507

thanks so much. ☺️

Zannadoo profile image
Zannadoo in reply to FLAMB

What area are u in as I'm north Yorkshire and saw a good endo willing to tell gp to precibe t3

RhianR profile image
RhianR in reply to Zannadoo

Hi Zannadoo 👋 Please can you DM me the North Yorks Endos details you mentioned to FLAMB as I need a new one too, and one who will write to NHS GPs about prescrbing T3 on the NHS. I'm in Cheshire (East) and getting nowhere! My current Endo (Private) has repeatedly reduced my daily T3 Liothyronine in the past 12 months from 30mg to 10mg. I've been taking this alongside T4 Levothyroxine (which in 12 years of taking it has done absolutely nothing to alleviate my Hypo symptoms .....but as with most of here, the NHS has continually gaslit me for 12 years, and now the Private Endo I've seen is doing the same). My TSH is always surpressed and my FT3 is extremely low in the range. Less on less T3 but the daft Endo only looks at my TSH. I also have the faulty DIO2 Gene. Many thanks in advance for sending me the Endo info. 😊

Zannadoo profile image
Zannadoo in reply to RhianR

I need to find the letter as I don't know his name. I was also ref last Jun and only saw him last week he's NHS so I don't know if you're out of the catchment

RhianR profile image
RhianR in reply to Zannadoo

Thanks for getting back to me so quickly. Do they do Private work too or NHS only?

Zannadoo profile image
Zannadoo in reply to RhianR

I don't know some do x

RhianR profile image
RhianR in reply to Zannadoo

Ah OK, well if you could dm the name and I can check out - thanks again xx

n1mble2 profile image
n1mble2 in reply to Zannadoo

Hello. Would you mind Doing me your North Yorks Endo details, I'm in North Yorks too and struggling. Many thanks!

SlowDragon profile image
SlowDragonAdministrator

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3 if clinically appropriate 

Majority on list are private, a few are NHS or NHS and private

tukadmin@thyroiduk.org

Roughly where in U.K. are you

Zannadoo profile image
Zannadoo

I don't think we are allowed to name any doctors unless they are on some list .I've seen something about it I don't want to break any rules

marigold22 profile image
marigold22 in reply to Zannadoo

If you click on the person's name, then Start Chat, you can send a private message

RhianR profile image
RhianR in reply to Zannadoo

Hi. We can't give names on here unless via Direct Message to an individual, so I have sent you a DM asking for the name of the Yorks Endo you told me about so that I can try to get help too. That location is not far for me to travel to. Not all Endo names are on the list which Thyroid UK send out. I've had the list myself, but have no idea whether any of them are worth contacting. It's direct recommendation that people on here really need. If I had a name that could help just 1 person then I'd gladly share it by DM, whether it was on the Thyroid UK list or not.

Thanks.

FLAMB profile image
FLAMB

I’ve just retested and these are my results.

I’m out of range again on my TSH but what I’m really interested about is my T3 and thyroid peroxide antibodies as they are out of range.

Does this show I’m likely to have Hashmito’s? And is there any advice for increasing my T3?

TSH - 8.9 (0.27-4.2)

Free T3 - 2.77 (3.1-6.8)

Free thyroxine - 16.7 (12-22)

Thyroglobulin antibodies - 37 (<115)

Thyroid Peroxide Antibodies - 120 (<34)

You may also like...

Autoimmune specialists?

bout of glandular fever too but I just don't feel right. I feel like someone is slowly pulling the...

Question for the specialist

Now i start to feel coldness and tiredness and neorology pain( like burning feeling in my legs) I...

Thyroid specialist in London

Hi all, please could anyone recommend a thyroid specialist they have worked with in the London area...

Endo/Specialist Recommendation

for long winded post but can anyone recommend an Endo/Specialist (by P.M. please) who could look at...

Paediatric Thyroid Specialist

Hi, Can anyone recommend a Thyroid Specialist for my daughter? She is 16 and was diagnosed with...