I have congenital hypothyroidism (no thyroid at... - Thyroid UK

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I have congenital hypothyroidism (no thyroid at all) and have been on levothyroxin all my life (now 40yrs old).

Amyflo74 profile image
8 Replies

Since a teenager I've been on 150mcg daily. In March 2013 I had a miscarriage, my GP suggested I stick to 175mcg. I then fell pregnant in Oct 2013, and got put up to 225mcg at about wk 9. Sadly I lost the pregnancy in Jan this year (both pregnancies had stopped at 5.5wks):

Blood collected 07/01/14 (not yet miscarried, on 225mcg):

TSH 0.03 mlU/l [range 0.27 - 4.20]

Then returned to pre pregnancy dosage 175mcg

Blood collected 12/02/14

TSH 0.03 mlU/l [range 0.27 - 4.20]

Free T3 6.47 pmol/L [range 3.1 - 6.80]

Endocrinologist said my TSH was too high, and dropped my dosage back down to current 150mcg

Blood collected 12/03/2014

TSH 0.27 [range 0.27 - 4.20]

Free T4 13.6 pmol/L [range 12.0 - 22.0]

I have another blood test next month, and have been referred to Gynae for miscarriages which I have on the 1/04/14. Then seeing Endo again in May.

To say that I am confused, consistently disappointed by GP's/Endocrinologists would be an understatement. I have asked about T3 and was told categorically that they will not prescribe it.

Any feedback on my blood-work would be appreciated, thank you.

Amy

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Amyflo74
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8 Replies
Hennerton profile image
Hennerton

Your latest results look too low with regard to T4, although your endo is probably delighted with your TSH. I am not familiar with the difficulties of pregnancy with no thyroid but I wonder whether it would be possible for you to obtain NDT (natural dessicated thyroid) as this may help your body better to manage another pregnancy? I think you would need to find a private consultant to help you with this. Maybe if you post a question, someone could recommend. Sorry I cannot be more helpful but I am sure someone will come along with good advice. xx

Amyflo74 profile image
Amyflo74

Thank you. I do have a number for one, I may now make an appt with. I feel I've nothing to loose atm!

Just found additional stats on my blood test taken 07/01/14 (whilst I was still pregnant - sort of)

Free T3 7.68 pmol/L [range 3.10 - 6.80]

Free T4 30.3 pmol/L [range 12.0 - 22.0]

shaws profile image
shawsAdministrator

I am sorry you have had trouble with your pregnancies. It is distressing.

This is a link re pregnancy - the first question and second questions may give some info.

The link within wont work as this is archived.

web.archive.org/web/2010103...

Clutter profile image
Clutter

I'm sorry to hear of your miscarriages. Raising thyroxine by 50mcg as soon as pregnancy is confirmed is the recommended procedure.

Free T3 7.68 pmol/L [range 3.10 - 6.80]

Free T4 30.3 pmol/L [range 12.0 - 22.0]

These results look abnormal but I'm not experienced enough to know whether pregnancy hormones will have caused the results to be so over range.

Your current FT4 is too low and your liver will struggle to convert sufficient T3 from it. I think the dose reduction may have been too much. 162.5mcg daily by alternating 150mcg/175mcg might be a solution?

Are your ferritin, vitD, B12 and folate high in range? They are important to good health and deficiencies and low in range results may compromise your health.

These links may be of interest re conception and pregnancy

cks.nice.org.uk/hypothyroid...

hypothyroidmom.com/miscarri... Scroll to the end of the blog for more links to conception and pregnancy in hypothyroid women.

healthunlocked.com/thyroidu...

Amyflo74 profile image
Amyflo74

Thank you all for your feedback and messages.

Muffy profile image
Muffy

So sorry to hear about your miscarriage.

Do you have your blood taken at the same time of day each time? Early morning is the best time, but at least if it is always the same time, you will get a better picture.

Your T3 is quite high and also T4 on the 7th of January, so it looks like you are converting t4 to T3.

As you had already gone up from 150mcg to 175mcg, I wonder if the extra 50mcg to 225 was too much for you.

You should be looked after by a specialist during pregnancy, but you say that you do have an appointment due.

I really hope all goes well for you.

humanbean profile image
humanbean

I'm really sorry to hear about your miscarriages. I wanted to add to the comments above that you should consider getting some tests of adrenal function done. I'm sure I've read that inappropriate levels of cortisol and DHEA are bad news for pregnant women or women hoping to conceive. The NHS won't test adrenal function unless they suspect Cushing's (extremely high cortisol) or Addison's (extremely low cortisol), but adrenal tests using saliva samples can be paid for privately. Many people can have cortisol levels that are above or below the reference ranges without being at the extremes, and it does have a major impact on health.

I did this one and found the results useful :

gdx.net/uk/product/27

There is more info about Genova testing here :

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

Using the phone option to order from Genova is easiest. They ask who your practitioner (i.e. your doctor) is, and you should say "Thyroid UK". Payment details are not requested or required until you send your samples back to Genova.

Good luck!

behappy1 profile image
behappy1

I don't know the answers but wanted to say I hope sorry for your losses. I hope that you get well and that it all works out next time for you. X

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