Extremely hypothyroid in early pregnancy

[chronicovershare]

I am 5 weeks pregnant with a history of two miscarriages and an underactive thyroid. I have just found out I have a TSH of 29 (well outside of the reference 0.55-2.5) and T4 of 11.6.

I'm obviously panicking and sure that I'm going to miscarry again. I've upped my dose from 125 to 150mg today but just looking for any reassurance, experiences or advice.

Do you see an endocrinologist? Have they or your GP advised? Have a chat with them today.

I was diagnosed with Graves in my early 20's and had radioactive iodine treatment which made me slightly Hypo so needed to take synthetic thyroxine. During my first pregnancy, my thyroid actually normalised so I came of all thyroid meds..

Then randomly during my second pregnancy, I received a call from my lovely endo telling me I was 'back on his radar' (after a maternity blood test had been sent to him by my GP) and had to restart on the Levothyroxine. I am 54 now and have been on that dose since early pregnancy with my 2nd baby (who is 19 now).

The GP suggested upping the dose by the extra 25 which I have done today, but otherwise did not really have any comfort to offer!

They said I'm best to wait until my 6 week scan (next week) to see if I am still pregnant (exact words!)

I'm concerned that there is no fixing this "in time" and I've messed it up again.

When I was pregnant 3 years ago, I was told to double my dosage for levothyroxine. In my pregnancy this year, I didn’t have to double it. Just wondering if you need more than 25mg extra. I think you should ask to be referred to an endocrinologist.

Referral has allegedly been put in, but I don't think I'm likely to get anything from then until after Christmas which I feel will probably be too late.

When I was found to have an underactive thyroid a few years ago my TSH was 13, I brought it down to around 4 with 75mg of levothyroxine. This was a before having a baby was on the cards even.

when I started TTC I upped my dose myself as I know that’s all the doc would do anyway to 100mg. I had a miscarriage last December and in March of this year.

with this pregnancy I went to the gp at 5 weeks and he upped my levothyroxine to 150mg, but if I hadn’t of asked for a blood test I wouldn’t have been offered one that early.

when I was 20 weeks I saw an endocrinologist and on walking to his office he said, no word of a lie, “shouldn’t we have seen you before now, if your thyroid isn’t functioning correctly she’ll already have autism by now” to say I was fuming is an understatement.

last blood test my TSH was 2.1 and my T4 and T3 were normal, incidentally they say the T cells are more crucial than the TSH in pregnancy.

im now 32 weeks and still take 150mg of levothyroxine which I’ll stay on until after she’s here and reassess my thyroid function postpartum.

i wish you all the best OP, what I have learnt, very quickly is that you have to advocate for yourself hard and fast, because if I hadn’t I probably wouldn’t have made it to 8 months with this baby.

I had to do the same with progesterone pessaries. That’s a side note, but same principle.

good luck xx

First of all, this is insane! “shouldn’t we have seen you before now, if your thyroid isn’t functioning correctly she’ll already have autism by now” - I am so sorry you had that experience!

Thank you so much - the constant self-advocating is exhausting really. I'm reluctant to up my meds more than the 25 increments too as my previous miscarriages I was hugely overmedicated and told this was a likely cause - can't win over here (!)

Wishing you all the best

Ps. My endocrinologist (for what he was worth) did say that the thyroid is slow to react to changes in dose, can take 8-10 weeks for the increase to kick in. Your fear of it not being done in time may be a rational one.

not to be all doom and gloom, just want to pass on what he said. The more clinically factual stuff anyway.

I really do hope that everything works out for you and this baby. The stress, the anxiety the worry, it’s all very palpable after loss in early pregnancy xx

Yes this is the problem - SO slow to change. I'm holding onto the fact that the T4 is still within normal range so hopefully I can fix things before. I'm not sure I can face trying again after this one!

Ps, also on the progesterone, so that is something - although a different story again.

I’m hypothyroid, admittedly not as far off the scale as you are. I was 7, I upped the medication by 25mg it came down to 2.4 6 weeks later and I have upped another 25mg recently to get it under 2. I’m now 13 weeks and so far so good. Hope it helps reassure you a little. I do think when I am stressed/anxious it pushes my levels up, so as hard as it is focus on keeping yourself calm and relaxed.