Hashimoto's and 7 weeks pregnant. Concerned about GP advice

[Amymone]

Hi everyone,
I am newly pregnant with my first and I'm on Levothyroxine (50 mg).

I happened to have a blood test before I knew I was pregnant - around the time I conceived. My TSH then was 2.04 (having risen from 1.1 over 2 months) and so getting much closer to the 2.5 boundary.

My GP said when I found out about pg not to up my dose, and simply test again in 6 weeks time, which would take me beyond the first trimester. Have had an early scan and I'm 7 weeks now.
I'm concerned that in this time my TSH could be rising above 2.5 and I'm not offsetting this with more meds.
Concerned about the risk of pregnancy loss anyway with Hashimoto's and just wondering if any of you have followed similar advice with a successful outcome? Should I be pushing for earlier testing / higher dose right away? Not overly keen to go to hospital for test due to Covid if it's not needed.

I have hypothyroidism & when pregnant I happened to read in a magazine about needing to increase thyroxine during pregnancy (pre internet. I’m older) I phoned the GP and told him I had read this. He had no clue!
He phoned an endocrinologist at the hospital then called me back to tell me to increase my dose immediately then have a blood test a few weeks later. For your own peace of mind I would phone and try to speak to a different GP

I have Hashimotos too and was told by my endo to up my dose by 25mg as soon as I had a positive pregnancy test (I went from 125mg to 150mg last week) then blood tests every 6 weeks from then on. My TSH was 1 and my T4 was 21 the week I convinced.

It is really important to up your dose as the baby can't make its own thyroid hormone for the first 12 weeks and will use yours. If you don't have enough for yourself, it's harder for the baby to get enough. The British Thyroid Association has a useful info page for pregnancy, it might be useful to show your GP: www.btf-thyroid.org/pregnancy-and-thyroid-disorders-guidance-for-patients.

Your GP should be able to take your bloods and then you can discuss the results with your endo over the phone to avoid going to the hospital.

As a GP, I would always refer a newly pregnant woman with thyroid issues to an endocrinologist urgently. I think it's in NICE guidance. I'd suggest you speak to your GP again. They should be able to do an "advice and guidance" request to a specialist so you can get some basic advice without having to physically go to a clinic until the coronavirus situation has improved.

My tsh is 6 at the moment and my GP said it’s nothing to worry about as my t4 is only 14 ish. I worry about what would happen if I got pregnant . I see an endocrinologist yearly but they just ask if I’m planning to conceive and I say no.

My dp doesn’t understand it and thinks that it’s just not an issue, it’s like a vitamin deficiency. So I never really voice my concerns IRL

I'm not pregnant but hi fellow hashitmotos people!

As other posters have said you should be referred to an endocrinologist who will monitor your bloods AND it is standard to up the dose by 25 micrograms as a start. My endo ordered extra bloods via the midwife and monitored them remotely.

You need a second opinion ASAP

@sideorderofchips Hi!

@Chillicheese123 Your TSH should be under 3 ideally and T4 close to 22. Do you have Hashimotos? I had levels like yours for years and felt rotten until I find a thyroid specialist and he tested my antibodies, realised I had Hashimotos and put me on levothyroxine. If you do want to concierge I was advised to get my TSH as close to 1 as possible and TSH choose to 22. Plus there other absorption issues with Vit B, iron and Vit D that I had to deal with before getting pregnant.

• conceive not concierge!

@mariadingbat hello and thanks for your reply to my post, weirdly I too an anemic

I’ve been on 150mg a day for over 15 years, it’s never gone up and down through 3 pregnancies - always expected to up my dose because of what I’d read on internet - but consultants at hospital always did bloods and said my dose was fine and didn’t need upping. Just to point out that it’s definitely not ALL people who need to up in pregnancy

Hi @sideorderofchips I'm not pregnant either

Partner has hashimotos and says def get another opinion given numbers and levels - good luck OP

I'm finally stable ish on 100mg. My antibody level was 435 when diagnosed 😳

I have Graves disease (hyperthyroidism) and it came on in pregnancy with DD. Definitely you should be seeing an endocrinologist asap even if just to reassure you @Amymone I definitely reckon try getting a phone appt with your GP to see if he can refer you!

@Chillicheese123 Hashimotos comes with absorption issues, iron is one of them but it's the ability to store iron that's affected. Have you had your ferratin levels checked recently? Might not be able to right now but it's useful to have.

@sideorderofchips oh dear! That's quite high. Mine only cane down when I cut out dairy and gluten. It sucks but I feel much better. But I miss pizza and I've cream so much!

Oh gosh, thanks everyone! This is my first post on mumsnet and I never expected such a response!
I forgot to say that the blood test I had around the time I conceived was with an endocrinologist. When I spoke to the GP, she referred back to the endocrinologist unit (not the same doc) and this was the advice they gave, based on my pre-pregnancy TSH. Do nothing, basically.
The thing that unnerves me is that before I knew I was pregnant, I discussed the under-2.5 TSH guideline with the endocrinologist and he basically said "yeah, that's just what gynaecologists think, we think anywhere under 10 is fine". If this difference of opinion exists, I just wonder whose advice to take. I would assume gynaes witness/know a little more about miscarriages!
My GP was quite adamant about it and I'm not sure how to get a second opinion in the current climate really. My GP surgery is not even taking blood at the moment, so I could take an early test but I'll have to brave the blood unit in the hospital. In South London, so not too keen to go there for obvious reasons!
Would a private endocrinologist be the way to go? Can anyone recommend one?

Also been wondering whether I should just make a call and up my dose anyway...is that dangerous?!

I have Hashimotos and have always had blood tests every 2-3 weeks throughout the first trimester (admittedly I am not in the UK) and each time needed to adjust my dosage. Over the 9 months, I went from 125mg to 275mg. My endocrinologist has always made it very clear to me that I should contact her the minute I get a BFP.

Please speak to your doctor again. I really don’t want to scare you but it is important this is right.

I'm 29weeks pregnant. I've not yet got my tsh down below 2.5, we're still trying, but it was 11.9 until I was 19weeks pregnant as no one (consultant) noticed the raised blood test back in October! Everything I've been told is below 2.5, but I got this far before realising, so don't panic just yet.

I would ring the community midwifes for your area and say about it, that's how I ended up under the endocrinologist

I was told by an endo that he wouldn’t even medicate if someone he saw was tsh 8/9. I have an American friend and she says 4 is medicated ! But there you can ‘shop around’ for a doctor so they are more likely to overmedicate to ‘please’ you.

See if you can get a remote appointment with Dr Vanderpump. He is an endo and complete guru on thyroid levels. I ended up having to up by 50mg

This does depend on your antibody level too. The under 2.0 advice for Hashimotos is only really relevant if your antibodies are high. My TSH was 7 and antibodies circa 200. So if left unmedicated my body would have destroyed my baby’s thyroid. My results was monitored every 4 weeks but I was told that without the antibodies they wouldn’t have done it so regularly. Anyway I now have been diagnosed with Graves Disease (GP isn’t sure if it’s Hashimotos or Hashimotos turning to Graves) and so this isn’t really an issue anymore.

Don't wait for the second opinion. If you have any spare tablets or can get an early repeat, up your dose by 25mcg now.

My first endocrinology appointment in pregnancy was at 16 weeks both times. First time my dose hadn't been increased by my GP and the endocrinologists told me I'd I had a subsequent pregnancy to increase by 25 asap, even if the GP refuses. He did stress that as my.levels are well maintained generally it likely won't have caused issue (and it didn't).