Reproductive Endocrinologist

[Kitcat12]

Searching for a reputable endocrinologist to manage my thyroid condition throughout IVF and pregnancy. Have had one miscarriage due to poor management and high TSH levels. About to go through a frozen blastocyst transfer and struggling to get GP or IVF clinic to acknowledge that my Levothyroxine dose will need to be increased during pregnancy. Am willing to pay for a decent endocrinologist, I live in North Wales and can travel to anywhere in the north west. Any recommendations??

[SlowDragon Administrator]

TSH should be under 2.5 when TTC

How much Levothyroxine are you currently taking?

What were most recent TSH, FT3 and FT4 levels?

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

low vitamin levels are common if under medicated. Essential to regularly retest vitamin D, folate, ferritin and B12. These need to be at good levels for good thyroid function

Have these been tested?

TTC

verywellhealth.com/infertil...

Pregnancy guidelines

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

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

See pages 7&8

btf-thyroid.org/images/docu...

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

please email Dionne at

[e-mail]

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

[Kitcat12 in reply to SlowDragon]

Hi there, I take 175mg Levo and most recent levels were TSH 2.47 and T4 13, that's all they test. I'm already having b12 injections as I am deficient in that as well. Nobody at my IVF clinic is even concerned about my thyroid and my GP has no clue how to manage it. I will certainly send the email to Dionne for a recommendation. Thank you.

[SlowDragon Administrator in reply to Kitcat12]

What's the range on FT4?

This looks quite low, should be in top third of range, especially as you say in other posts you have no thyroid of your own

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if on too low a dose of Levothyroxine

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

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

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

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

Medichecks currently have an offer on until end of May - 20% off

thyroiduk.org.uk/index.html

Are you on B12 injections because of Pernicious Anaemia? Or just because B12 is low?

Strongly recommended getting full private testing of thyroid and vitamins

[Kitcat12 in reply to SlowDragon]

Upper end of T4 range is 17. Not been diagnosed with pernicious anaemia, just told I had low b12 and started injections. I've also never done my bloods before taking a dose, I usually do bloods in the morning but always take my Levo before bloods. If I see a private endocrinologist will they be able to do all these tests for me?

[SlowDragon Administrator in reply to Kitcat12]

We would ALWAYS recommend getting full Thyroid and vitamin testing BEFORE seeing any endocrinologist

A) you can ensure to do blood tests early as possible in morning and fasting and last Levothyroxine 24 hours prior to test

B) if you have appointment with endocrinologist you have results with you to discuss. Otherwise first appointment can be pointless

Low B12 suggests gut is affected, common if under treated, or poor converter of FT4 to FT3

Did you have thyroidectomy? Or RAI for Graves' disease?

[Kitcat12 in reply to SlowDragon]

Neither, I was born without a thyroid so it's something I've had for my whole life but I'm only just encountering these issues now that I'm going through IVF treatment.

[SlowDragon Administrator in reply to Kitcat12]

So you are totally reliant on Levothyroxine

Your fertility issues may be because FT3 is too low

On Levothyroxine we frequently need high FT4 and suppressed TSH in order to have high enough FT3 levels

FT3 is the MOST important result

Strongly suggest you get full private testing including vitamin levels

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

Guidelines by BTA on being entitled to referral to endocrinologist for trial of T3

british-thyroid-association...

New NHS England Liothyronine (T3) guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

SeasideSusie may have name of endocrinologist to recommend in N Wales. There was recent discussion on here. I think she took note of the name

[SeasideSusie Remembering in reply to SlowDragon]

Kitcat12

There are a couple of doctors on the list Dionne will send you, they are based at Ysbyty Glan Clywd and are said to be either Armour friendly or T3 friendly. I have no personal experience I'm afraid, and I don't know if they have a special interest in fertility.

[Kitcat12 in reply to SeasideSusie]

Thank you, I'll see what I can find out!

[SeasideSusie Remembering in reply to Kitcat12]

When you have the list and see who the doctors are, you could phone their secretaries and ask about whether they have an interest in fertility, best to try and find the right endo from the get-go.

[SilverAvocado in reply to Kitcat12]

Kitcat12, these thyroid results look very far from optimal. Although the pregnancy advice say a TSH can be as high as 2, that's a very very conservative (stingy) figure. Most people will need a TSH close to the bottom of the range and probably below to feel well, 2.47 is extremely high.

For a pregnancy I should think you'll want it as close to optimal as you can, as soon as the pregnancy is established your need for hormone will increase, and the baby will be relying on your thyroid hormone for quite a few weeks before their own thyroid is able to take over.

Usual practice is to increase by 25mcg immediately once you're pregnant, I believe. But this is quite a broad brush approach that applies to everyone - I'm not sure if that would be further adjusted during the pregnancy.

[Kitcat12 in reply to SilverAvocado]

It has dropped from 8.8 to 2.47 after 2 weeks on 175mg Levo (previous dose had been 125mg for most of my adult life) I actually think I feel worse on the higher dose, exhausted beyond belief all the time, although if I'm honest my whole life I've been exhausted. Never really felt 100%.

[SilverAvocado in reply to Kitcat12]

I'm sad to hear you've been exhausted your whole life. A good friend has congenital hypothyroid and has also been struggling a lot the past few years

If you've been on the new dose for two weeks I wouldn't worry too much. In my experience almost anything can happen in the first few weeks on a new dose. You've had an increase of 50mcg, which is double the usual best practice, so it may take your body quite a well to get back to being fully stable. I'm currently 3 weeks into an increase that's 50% larger than normal because I'm juggling tablets of different sizes. I've felt a bit like I was riding a wild horse up until now, and my pulse was going crazy. But I've now had a few good night's sleep and hoping I'm over the worst.

My feeling from reading the forum is that if you've been on a lower dose for years it can be an even more difficult ride to get over that first hump, so I would hang in there for 6 to 8 weeks and then see how you feel. You may need another increase of 25mcg after this one.

Have just seen the new blastocysts are going in tomorrow (I've always loved that word! I think it comes from the Latin or something for blackberry because they are just a little blackberry of cells). Good luck! I hope you find a supportive doctor on the list! xx

[Kitcat12 in reply to SilverAvocado]

Thank you, I'm actually waiting at my clinic to have them transferred now, my 2 little blackberries, I like that 😀

[SilverAvocado in reply to Kitcat12]

Good luck to you and the little blackberries! x

[silverfox7]

I'm surprised the IVF clinic aren't being more supportive. May be they are not happy to say you will need more and would prefer to phrase it differently. I think I would be inclined to see them if that's possible and ask them what your doctor should be doing to ensure a successful pregnancy and remind them what happened last time. I would have thought they would want everything in place before they proceed further so they need to start a dialogue with you and/or your GP.

[Kitcat12 in reply to silverfox7]

You would think so wouldn't you. Unfortunately, every time I try to discuss it with them they shut me down, simply saying it isn't their remit and my GP should manage it. It's incredibly frustrating!

[silverfox7 in reply to Kitcat12]

That's shocking! I would say they are more expect at this than a GENERAL Practioner! In the time they passed their comment they could have given the info! I really feel for you.

[Ljg72]

You are in my thoughts Kitcat12 and I’m interested in what you find out. I'm In a similar situation myself. No thyroid (because of cancer) and after many attempts at ivf I finally got a positive result . Alas I then had a miscarriage at 10 weeks.

I felt terribly hypothyroid during the all too short pregnancy despite an upping of my Levothyroxine. I suspect I need t3 as well as t4, but as far as I can tell the medical professionals seem to view that as a complete no no during pregnancy here in the UK.

Two blastocysts left and then it’s all over for me, so I’ve got to optimise my health...and my chances. So reading all the answers with interest.

[Kitcat12 in reply to Ljg72]

Oh I'm so sorry to hear that, it's so desperately sad. I will of course keep you posted on anything I find out. Im going for 2 frozen blastocysts transferred tomorrow (!) and I'm really not feeling too confident about keeping hold of them with my levels as all over the place as they are 😞 wish me luck x

[Ljg72 in reply to Kitcat12]

I really do hope it goes well for you, I’m sending you all my positive vibes for the next ten days, and beyond.

I found this document useful in setting out my case with my GP,

Link here :

thyroiduk.org.uk/tuk/guidel...

Or google Lothian pregnancy thyroid,

Of course I think ultimately 25 mcg extra a day just wasn’t enough for me, and also I left it till the seven week ultrasound to see the gp by which point I was really hypo whereas in hindsight I should just have gone as soon as I got the positive pregnancy result.

I’m going to see a functional specialist in Manchester next week, to see if they can help find ways to optimise my levels, they've already recommended cutting out soy, diary and gluten to try and help stabilise Thyroid levels and optimise conversion. I’ll let you know how I get on.

Try not to stress, though I know that’s easier said than done, xx

[SlowDragon Administrator in reply to Ljg72]

Ljg72

If you put a post up with recent results members can advise

Getting full Thyroid and vitamin testing privately is frequently the only way many make progress

Make sure all Thyroid tests are as early as possible in morning and fasting, last Levothyroxine dose 24 hours before blood test

Low folate and low B12 are extremely common, obviously essential for any baby's development

[Ljg72 in reply to SlowDragon]

Thank you, yes I’m going to get bloods done next week, hopefully get some insight into how my body is (or is not) functioning, I’m definitely going to post them - people here are so kind in sharing their knowledge and experience.

[SlowDragon Administrator in reply to Ljg72]

Ljg72

There are possibly a few endocrinologist who might consider T3

Have you got the list from Dionne at Thyroid Uk?

[Kitcat12 in reply to SlowDragon]

Yes thank you, I received the list this morning actually. Appreciate the help. Thank you.

[Kitcat12]

I've just left clinic following transfer and I'm quite upset. The consultant shot me down when I tried to suggest my TSH is too high. He said my levels are optimal. Feel like giving up with the clinic.

[mistydog]

I've got some old levo tablets, happy to send if you pm me