Endocrinologist Recommendation?!?!: HI all, Can... - Thyroid UK

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Endocrinologist Recommendation?!?!

Ceebee26 profile image
8 Replies

HI all,

Can anyone recommend an endocrinologist in the surrey area?

GP won’t refer me, even though I have suffered two miscarriages and have Hashimotos, so am looking to go privately in the first instance.

Any help would be greatly appreciated

Thanks

Catherine

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Ceebee26 profile image
Ceebee26
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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

The first step is to being FULL Thyroid and vitamin testing....frequently we need to do full testing privately.......always get this done BEFORE considering seeing any endocrinologist

What dose of Levothyroxine are you currently taking?

Do you have recent blood test results and ranges you can add

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

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

What vitamin supplements do you currently take?

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, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamin levels, Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Are you on strictly gluten free diet?

Or have you ever tried this?

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone

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.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 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...

restartmed.com/hashimotos-g...

if you add recent results, members can advise on next steps

SlowDragon profile image
SlowDragonAdministrator

Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists once the office reopens in New Year

thyroiduk.org.uk/tuk/About_...

shaws profile image
shawsAdministrator

I'm really sorry you've had two miscarriages and hope the next time you're pregnant will be successful. Is your doctor unaware that those who are hypothyroid can have miscarriages.

thyroiduk.org.uk/tuk/about_...

If you email Dionne atTUK she has a list of helpful doctors.

tukadmin@thyroiduk.org

"I have suffered two miscarriages "

So sorry to hear that. I'm single and well past childbearing age so can't imagine what it must be like to lose a baby. Sadly, it seems that hypothyroidism can cause miscarriages. You need optimal thyroid levels, especially of T3. Post recent test results and we can advise.

Wishing you all the very best. This is a brilliant forum for both advice and support.

Ceebee26 profile image
Ceebee26 in reply to

Hello,

Thank you for your response.

I have only had one medichecks test done, back in October and the results were as follows -

TSH 1.54

Free T3 - 6

Free Thyroxine 25.2

Thyroglobulin Antibodies - 339

Throid Peroxidase Antibodies - 321

shortly after these tests my GP reduced thyroxine back to 100mcg

Most recent blood test at GP gave following results -

TSH 2.41

Free T4 22.2

What else do you recommend having tested?

Thanks

Catherine

Ceebee26 profile image
Ceebee26

Hello,

Thank you for your response.

I have only had one medichecks test done, back in October and the results were as follows -

TSH 1.54

Free T3 - 6

Free Thyroxine 25.2

Thyroglobulin Antibodies - 339

Throid Peroxidase Antibodies - 321

shortly after these tests my GP reduced thyroxine back to 100mcg

Most recent blood test at GP gave following results -

TSH 2.41

Free T4 22.2

What else do you recommend having tested?

Thanks

Catherine

As SlowDragon said, you also need vitamin D, folate, ferritin and B12 tests. Also, the GP tests don't include T3. It 's essential to be able to compare T3 and T4. From the one result you have, conversion isn't too bad. T4/T3 = 3.7. The ideal is (If I remember right - not good remembering numbers!) between 4 and 4.5

If you post the reference ranges with your results - usually in brackets, or with a small "R", after the result - we can advise a bit better. Free T3 and 4 are probably both quite high in range or even slightly above on the first result, but that's no worry unless they really shoot up too far and you begin to have hyper symptoms.

With Hashimoto's an over range T3 or 4 is often due to what they call a "Hyper swing". The immune system destroys thyroid cells which now and again dump their stored hormone into the bloodstream. This can give HYPERthyroid symptoms, and the impression you are over medicated. But often your hormone levels afterwards go down lower than before, so you end up being even more hypo. But most doctors are not taught this.

Antibodies look high, confirming Hashimoto's (usually called Autoimmune thyroiditis in the UK), so no need to test for them again. they vary a lot anyway. They show that your immune system is alerted to your own thyroid tissue and is mistakenly attacking it.

TSH looks too high for someone hypothyroid. Most of us need it near or even below the bottom of the range. But really it depends on how you feel. It's your individual optimal levels that really matter with thyroid.

"shortly after these tests my GP reduced thyroxine back to 100mcg

GRRR!!!! As I said, most doctors, including endos, don't seem to understand the thyroid. One of the effects of thyroid therapy is often to depress TSH and disconnect it from T3 and T4 levels so it becomes unreliable as a guide to treatment. But officialdom has decided that TSH is king and force poor patients to comply with getting it back in range and usually more and more ill as a result.

That happened to me too. My TSH was only 0.01 (T3 and T4 still within range) and I still felt hypo. Four months later I began to get quite severe breathlessness, instead of very occasional bouts, and swollen ankles, and thankfully found a really good doctor who was willing to listen and grant a trial increase back up.

Ceebee26 profile image
Ceebee26 in reply to

Hi Jnetti....

Thought I would come back and speak to you.. after being reduced to 100mcg again, my TSH went back up to 4.56 miu/L (0.35 - 4.7) - althought meant to be under 2.5 for trying to conceive.

After this, I argued to have my meds changed... I was put on 125mcg one day, and 100mcg another..

Just had my results from my test on Wednesday -

TSH 6.68 miu/L

(0.35 - 4.78)

Free T4 16.6 pmol/L

(10 - 20)

Just not sure what is happening tbh!

x

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