TSH STILL 00.1 AFTER HALVING T3 DOSE TO CONCIEVE AND REPRODUCTIVE ENDOCRINOLOGIST RECOMMENDATIONS IN LONDON OR MANCHESTER PLEASE

[AuntieMandy]

Hi all HMY!

I have been on T3 for about 8 years very successfully and VERY happy on 20mg daily T3 and 150mcg thyroxine. I felt great.

Whichever endo I see private or nhs has told me despite feeling well that I am over medicated as my TSH is 0.01 and I need to reduce my T3.

I have always refused, but I’m desperate to have a baby and I know that the reference range for TSH to conceive is 0.5 - 2.5 , so in September I decided I would reduce my T3 dose to 10mg a day as everyone has been nagging me to do.

I had my bloods done before Christmas after 3 months of the new dose and my TSH is STILL 0.01 with no improvement!!!

I’m so confused, but aside from that I’ve put on a ton of weight but more importantly I am FREEZING again and really fatigued.

I really want to go back to my old dose, especially if the drop in T3 hasn’t done what it was supposed to, but my questions are this:

- Any advice on bloods in picture attached which I have put in the reference range calculator please?

VITAMIN D was 67 nmol/

HB 142 g/L

FERRITIN 94 ug/L

ACTIVE B12

205 pmol/L

FOLATE>20.0 ug/L

By the way I used the new nhs private testing Moniter my health. Above is how they sent the results with NO reference ranges!!!!!

- Any advice on dosing to conceive?

- Can anyone recommend a reproductive endocrinologist in London or Manchester?

Thanks a million

History:

2009 Graves' disease and thyroid eye disease.

Total thyroidectomy in 2009

DIO2 test - 2x faulty genes.. don’t covert correctly

[pennyannie]

Hello AuntyMandy :

I too have Graves Disease though had RAI thyroid ablation in 2005 -

and my TSH is stuck down at 0.01 - if I am to be well - irrespective of what thyroid hormone replacement I take.

I now self medicate NDT and run with a T3 at around 90/110% through the range with a T4 at around 25/30% through its range.

You have already been acknowledged as having genetic ' faulty genes ' and the fact you do not have thyroid and have lost your own natural T3 thyroid production should be enough to justify your medicating T3 - which in itself - does tend to lower a TSH reading.

Your TSH must not be seen as a monitor of anything and you must be dosed and monitored on your Free T3 and Free t4 readings and ranges.

Your TSH may well never recover -

please do not make yourself more unwell trying to move a TSH reading that in itself is not a measure of anything when you have Graves and post thyroidectomy/RAI thyroid ablation.

For all things Graves Disease - elaine-moore.com

[AuntieMandy in reply to pennyannie]

Thank you. I really appreciate your message so much. Usually I couldn’t care less about my low TSH and I tell them to get lost when they want me to reduce my meds, but I’m worried that my tsh is too low to conceive.

You’re certainly right about not making myself ill. It’s killing me x

[pennyannie in reply to AuntieMandy]

Your Hypothalamus - Pituitary - Thyroid feedback loop ( the HPT AXIS ) on which the TSH relies on as working - now does not work well as you have had a medical intervention and your thyroid surgically removed -

so this circuit loop is now broken and open ended -

making the TSH a very unreliable measure of anything.

Please reinstate your medication - I didn't even look at your readings earlier - sorry - so to be well and therefore able to conceive and have a healthy, bouncing baby and become MummyMandy.

[AuntieMandy in reply to pennyannie]

Thank you pennyannie that’s an amazing explanation of it. Really makes sense now.

Thank you for you kind words. So lovely xx 🥹🙏🏼

[HealthStarDust]

When I met a preconception endocrinologist via the NHS, it was stated that the TSH has to be within ‘detectable’ to up to 2.5 range.

If yours is considered detectable, then according to the professional I saw you’d be fine to conceive.

I hope someone can come along to remind me and inform you what is meant by detectable.

[AuntieMandy]

thank you HealthStarDust that’s really helpful. I think maybe 0.01 is still considered on the chart 🙏🏼

[SlowDragon Administrator]

Well your Ft4 and Ft3 are now far too low

On almost any dose of T3 TSH is likely to remain suppressed

Even if you stopped T3 completely it would likely remain low or suppressed a long time

Why TSH is sluggish - mechanism called 'Hysteresis'.

As detailed by tattybogle

healthunlocked.com/thyroidu....

starts at the end of the first reply from Tattybogle : " To understand why TSH stays suppressed for a long time after an episode of hyperthyroidism/ overmedication, (or ANY T3 use) has finished... "

and is continued in detail much further down in another reply from me : " CONTINUED HYSTERESIS ~ Why TSH remains lower for quite along while following episodes of hyperthyroidism / overmedication .... (or any T3 use) , it is due (at least partly) to a mechanism called 'Hysteresis'.

reference range for TSH to conceive is 0.5 - 2.5

But that’s for people without thyroid disease

After a total thyroidectomy and homozygous Dio2 the most important results for you are Ft3 and Ft4

vitamin D needs a bit of a push upwards

[AuntieMandy in reply to SlowDragon]

Thank you SlowDragon i really appreciate all of the time and trouble of your amazing replies.

Thanks for the papers. So interesting (even though sad as written by 2 of our forums greats that we lost last year 😪

I know that your T3 is always lowered with Liothyronine, but I did think it would help with 3 months of reduced dose, so I’ve def learnt something with Hysteresis.

I didn’t realise my Ft3 and Ft4 are low. I thought they were within range. What do I need to do to rectify? If these were your results what would you do?

I’m def gonna up my vitamin D

Thanks for being amazing to us all 🙏🏼

[SlowDragon Administrator in reply to AuntieMandy]

I didn’t realise my Ft3 and Ft4 are low. I thought they were within range.

well they are within range..but scraping along the bottom

Many many members on Levo plus small doses of T3 find they need both Ft4 and Ft3 as a minimum at 50-60% through range …..often higher

Some people are fine with lower Ft4 but higher Ft3

But before TTC you would be probably be needing higher Ft4

I would suggest you initially increase levothyroxine by 25mcg

Retest in 6-8 weeks

[greygoose]

The TSH has nothing to do with conception. It has two jobs and two jobs only:

- stimulate the thyroid - if you have one - to make more hormone

- stimulate the deiodinas for conversion of T4 to T3.

It has nothing to do with hearts and bones or anything else, as doctors believe.

So, forget the TSH and concentrate only your low thyroid hormones T4 and T3. They are what will stop you conceiving, not the TSH.

[AuntieMandy in reply to greygoose]

Thank you greygoose I always appreciate all of the help you give us all and your wise words.

I didn’t realise my T4 and T3 were low. I always thought I was in my ranges like I said to SlowDragon where in the ranges should I be please?

All you say makes perfect sense.

Thank you so much 🙏🏼

[greygoose in reply to AuntieMandy]

No-one can tell you in advance what they should be. You can only find that by trial and error. But pretty certain that a T4 of 7% and a T3 of 16.22% are too low. When on T4 plus T3, it's pretty certain that you're going to need the FT3 at least over mid-range, probably more like around 75%.

How much T4 you need is a far more individual thing. But if you're trying to conceive you certainly need it higher than that, at least over mid-range.

[AuntieMandy in reply to greygoose]

Thank you for this greygoose . I will up my T3 again and retest. Many thanks

[greygoose in reply to AuntieMandy]

You're welcome.

[humanbean]

Above is how they sent the results with NO reference ranges!!!!!

According to the FAQs on their website :

What’s the format of the results report and what information will it include?

The reports we produce can be found on your own personal account dashboard. Easy to understand graphs are viewable on a desktop for each test. You will be given your actual result (test value, excluding Covid-19 Antibodies), the reference ranges that indicate if you are at risk and any recommended actions such as whether you should seek further advice from your GP or make lifestyle adjustments. However, these reference ranges are based on a person who is currently not being treated for any of the fore mentioned conditions.

Source : monitormyhealth.org.uk/faqs

If you haven't been given the reference ranges you should send an email to their "Contact Us" email address :

If you require assistance, please email us at [e-mail] and our team will provide a response within 24 to 48 business hours.

I've never used MMH, so I don't know what they are like from personal experience.

...

What I have noticed quite often in recent months is people posting long lists of NHS test results on the forum, for all sorts of things, and nearly all of them have the reference ranges supplied - except for the thyroid-related results. The NHS clearly doesn't like being held to account.

[AuntieMandy in reply to humanbean]

thanks so much humanbean I will contact them. I tend to agree with you, every single other service provides thyroid reference ranges except the nhs one!!!

Appreciate the help as always 🙏🏼

[Bearo]

The reference ranges are there, now, on your results chart, so you found them!

[AuntieMandy in reply to Bearo]

Ha ha .. no.. those ref ranges are from an independent thyroid calculator that someone clever on this forum recommended 🙏🏼