Thyroid Autoimmune Antibodies and Late Miscarriage

(12 Posts)
marmiteontoast76 Tue 12-Apr-16 09:12:14

Yesterday we had our six week follow up appointment with a specialist miscarriage consultant. I had a late miscarriage in Feb - baby died around 18 weeks. Also had late mc in Sept.

Both babies were chromosomally normal and there were no clots or infections. However, the consultant said he was 70% sure these mcs were caused by my thyroid autoimmune antibodies....my level is 95 and normal is 35 or below. I don't really know what this means. He is referring me to an endocronologist in a few weeks time.

I would like to hear if anyone has been through similar and was successfully treated and what to expect for possible future pregnancies (although far too scared to risk it again).

AButterflyLightsBesideUs Thu 14-Apr-16 10:03:37

Hi.

I lost my DD1 at 20 weeks in 2010. The tests run revealed a toxoplasmosis infection (likely cause of death) and that I had an underactive thyroid (which probably didn't help, but not so bad they though it was the cause IYSWIM).

I had bloods then done by the GP to check TSH, FT4, FT3 and the antibodies. At the time it appeared my thyroid was perking back up now the pregnancy was over, but my antibodies were borderline so they agreed that in a next pg I would need regular TSH checks.

I fell pg again very quickly and sure enough, the tests showed my TSH climbing steadily through the pregnancy which meant my thyroid was becoming more and more underactive and my FT4 (thyroxine) was dropping - this hormone is crucial and it dropping is not good for you or baby. I was put on thyroxine at 18 weeks and my TSH was stabilised.

After DD2 was born they wanted to take me off thyroxine. I wasn't sure as underactive thyroid can impact on breastfeeding, and who wants to be even more knackered with a newborn? We agreed to lower the dose and keep up regular blood tests.

Eventually when she was a year old my TSH went over 10 (the number you have to reach in our area to get out of the grey area and into the "there is a definite problem and we will stop ignoring it" territory). My antibodies had increased significantly and tada I was diagnosed with Hashimotos disease (autoimmune thyroid disease).

Result is that basically my natural thyroid function has declined steadily over time and my thyroxine dose has been increased accordingly.

I recently had another pregnancy which sadly ended in tfmr at 13 weeks for acrania and Edwards syndrome, but during this pregnancy my GP was booking me bloods for TSH and FT4 every 4 weeks and careful to adjust my thyroxine dose to keep TSH under 2 and FT4 in the upper half of the reference range (as per the NICE guidelines that I printed and wafted in her face). I was automatically consultant led due to the Hashimotos, but never got to actually see a consultant before I lost the baby.

Basically, an underactive thyroid (which is the end result of the autoimmune disease) is only a risk to pregnancy if it is untreated. If you are monitored (blood tests) frequently and on a thyroxine dosage that keeps your levels where they need to be, you are at no increased risk of problems. The issue is that you need to be really on it and be your own doctor. GPs are often woefully uninformed, and the wheels of the NHS turn slowly when it comes to taking any action. The most critical time is the beginning of pregnancy. After 14 weeks the baby's thyroid gland starts to work, but before that it is dependent on the mum's thyroid functioning well.

The care you need is outlined here, but in my experience you need to be really proactive to actually get it. If I get pregnant again I plan to increase my dose as soon as I get a positive test and then get to the GP to get in the system as it were. I am on 100mcg thyroxine daily at the moment, but know I need 125-150 in the first trimester, so I have kept a box of 25mcg and 50mcg tablets in my drawer that I can supplement my 100mcg dose with.

I'm so sorry you are in this nightmare x

marmiteontoast76 Fri 15-Apr-16 09:40:35

Hi Butterfly,

Thank you so much for taking the time to write such a long, thorough and helpful reply.

I'm so sorry to hear about your two losses. I do know how devasting it is to have to go through it a second time.

Did you have any obvious symptoms of the underactive thyroid in the pregnancies? I already have 2 dcs ages 6 and 4 and those pregnancies felt very different. In these 2 unsuccessfull pregnancies something felt very different with my metabolism and I also had night sweats and then felt very cold in the daytime. My skin was crazily itchy too.

marmiteontoast76 Fri 15-Apr-16 09:44:45

And how high did your antibodies go? I've read that some people's go up in to the thousands, so 95 doesn't seem that high in comparison, although the mc specialist looked concerned. My TSH at the time of the loss was 5.5 which the doc said wasn't a concern.

marmiteontoast76 Fri 15-Apr-16 09:47:02

BTW I was 38 at first loss and 39 at second. No idea if age affects the thyroid or not.

AButterflyLightsBesideUs Fri 15-Apr-16 13:27:19

It's hard to say if there were any signs in pregnancy because I've never had a pregnancy when my thyroid was working properly by itself. I do find pregnancy gruellingly exhausting, and when my TSH is climbing and I need more thyroxine I get very cold all the time in addition to the bone sapping tiredness. Also I get sluggish and it takes me a long time to "come to" in the morning, I get brain fog and the feeling of "can't think straight", and eyes feel dry and a bit itchy. The trouble is, pregnancy is known for making you tired, so you don't know how much of the tiredness is pregnancy and how much is thyroid. And yes I get the awful night sweats too! More post pregnancy than during, but it is vile - totally sodden.

I'm not sure about the antibodies - I was told the first test was borderline and then the second one was in the 100-200s not the 1000s (can't remember actual numbers).

The thing with antibodies though is they will only stay stable or increase, so it's all downhill from here for the thyroid, as your immune system slowly attacks it's function. I don't really have any natural thyroid function anymore, I am basically completely synthetically replaced with thyroxine.

TSH of 5.5 is top of range in our area and wouldn't provoke automatic treatment, but it should do, it's a sign that there is a problem, and for ttc/in pregnancy it should be under 2. It being high will make conceiving more difficult usually.

No idea about age, I was 25 with DD1 and 2, and 30 with this last pg. I think once an autoimmune issue kicks in then that is more relevant than age.

marmiteontoast76 Sun 17-Apr-16 11:38:49

Thank you Butterfly. Really helpful info.

ChewyGiraffe Mon 25-Apr-16 17:08:22

Marmite and Butterfly - really, really sorry for each of your losses flowers

I've delivered a healthy, full-term DD despite being hypothyroid, but ONLY because my endocrinologist, then later my NHS obstetric consultant, monitored my blood levels (wanted TSH below 2, T4 was maintained around 14 - 16) and adjusted my dose of Thyroxine as necessary. I guess I was lucky.

Butterfly - great info. Could you perhaps link the NICE guidelines for Thyroid & pregnancy? I'm afraid I can't find them myself, but I expect they'd be very useful for Marmite to show her doctor, just as you did?

Marmite - you say your TSH at the time of your loss was 5.5, and the doc said this "wasn't a concern". Really? shock. Was it your GP who said this? I'd disagree - I remember reading a research paper on the (worrying) extent to which TSH of this level can be implicated in miscarriage.

Found a couple of things which I hope might also help a bit:

These are the published guidelines of the American Thyroid Association, which support what Butterfly says about TSH reference ranges during pregnancy:
"Recommendation 2: If trimester-specific reference ranges for TSH are not available in the laboratory, the following reference ranges are recommended: first trimester, 0.1–2.5 mIU/L; second trimester, 0.2–3.0 mIU/L; third trimester, 0.3–3.0 mIU/L"
- link to guidelines of American Thyroid Association

This recent UK "GP update" includes advice like:
- Anyone TTC or pregnant should always be put on Thyroxine replacement if their TSH is over 5, regardless of T4 levels.
- Need to medicate so as to aim for TSH 0.4–2.5 mu/l.
- If diagnosis is not made until pregnancy, GP should refer patient immediately for specialist assessment.
- If already on levothyroxine, GP should increase dose by 30% once pregnancy is confirmed and refer patient for shared obstetric care.
www.gp-update.co.uk/files/docs/Hypothyroidism.pdf

AButterflyLightsBesideUs Tue 26-Apr-16 14:20:41

Here you are Giraffe: NICE guidelines, hypothyroidism, preconception or pregnant

Thanks for linking the GP update too. Might come in handy if I ever attempt this circus again!

Lou2016 Mon 02-May-16 12:41:46

Hi marmiteontoast76, I am truly sorry to hear about what you are going through and your losses, and all you other ladies too, my heart goes out to you all.. flowers flowers
I truly understand what you are all going through having just now going through my 3rd miscarry and prior to that, I had to let my first baby go at 13.5 weeks due to it being diagnosed with Down's Syndrome and it being terribly ill.
Following my Down's pregnancy, I was diagnosed with an overactive thyroid (hyperthyroidism) caused by Graves Disease and have been on PTU meds for nearly a year now. PTU is safe to take whilst ttc (and whilst pg).
I am on a very slow route with NHS following who are investigating my pregnancy losses, but I am also now under the private care of Dr Shehata who studies NK (Natural Killer) cells / antibodies that attack pregnancies. I found him on Mumsnet and heard amazing things about him plus I know going privately is a faster route and at aged 41 I do not have time to waste (NHS are so slow).
So, my blood test results from Shehate are due in a couple of weeks but Dr Shehata already thinks my problem is thyroid antibodies that are attacking my pregnancies.
Fingers crossed he is right.... If this the problem then Shehata advised it is treatable by steroids. Shehata has many success stories - take a look at his website: www.miscarriageclinic.co.uk/
I am happy to keep you posted of my results.
Take care ladies and wishing you warm comfort and lots of luck going forward on this devastating journey we are all on.
Lou x

Marmiteontoast76 Tue 03-May-16 21:45:23

Thanks for this info Lou and so sorry about your heartbreaking losses.
I have an appointment with Dr S too in June, after reading good things about him on MN. However, I'm slightly concerned about the steroid treatments and their side effects due to witnessing my dad having psychotic episodes on highish doses of steroids whilst taking them for his asthma (he had quite severe mh issues anyway plus heavy drinking). From what I've read Dr S's doses are quite low though and are taking for brief periods I think. I haven't read anything terrible on here about side effects but I am extra causcious obviously. Will be interested to see what he says.

Lou2016 Sat 07-May-16 21:46:13

Hi marmiteontoast
Sorry for late reply - I've been dealing with this "missed miscarriage" and after last night of agony and vomitting (as I chose medical managment for first time - never ever again!), I think it is all passed so feel much better today.
Good to hear you're seeing Shehata in June, it's certainly another avenue open and worth pursuing. Your poor Dad having gone through that with steroids.....
You're right about the low and short-term dose that Shehata prescribes... I guess there's always risks in everything but he monitors closely and therefore his patients are under good care. I am due my blood test results appointment with him this Wednesday and will learn more then.
Not long for you to wait now.... I think you'll have a lot of faith in him.
Wishing you all the luck. [luck] flowers
Lou

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