Pregnant with autoimmune disease?

Anyone with an autoimmune disease - could I hear about your care during pregnancy? Were you considered high risk? I have a thyroid disorder which was triggered by my first pregnancy. I was under the endocrinology team before I fell pregnant and was told by the consultant that the midwife would arrange for me to see a different consultant that deals with pregnancies. However, my midwife just isn’t bothered? She said she doesn’t think I need to be under consultant and didn’t even bother to check. I had to push to have a blood test at my 16th week appointment which has shown that my TSH levels are too high. Just feeling really let down with the care I’m receiving.
My next appointment with her isn’t until 28 weeks and I just don’t know who should be checking my bloods etc regularly?

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You're not overreacting at all, and because of the high TSH result this is something worth acting on soon rather than sitting on. Here are some steps you can take:
First, call your GP tomorrow morning if you can. Explain that you're 20 weeks pregnant, have a known thyroid disorder, had a high TSH result at 16 weeks, and have had no follow-up. Ask for an urgent referral to an obstetric physician or maternal medicine clinic. Using the word "urgent" helps. Your GP can also review your medication in the meantime.
You can also try ringing your hospital directly and asking whether they have a maternal medicine clinic and whether you can self-refer — different trusts have different rules so it's worth asking.
It's also worth getting back in touch with your original endocrinology team and explaining the situation — they may be willing to re-engage or advocate for you.
If you're still getting nowhere, you can contact PALS.
You deserve proper care and you're absolutely right to push for it.

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I have an auto immune disease and have been told I am high risk because of this. I am having extra appointments and checking in with my rheumatologist in month 6 as im on biologics and need to see how my pain is. Definitely push to be seen if your bloods are not within range! At every midwife and scan i am being sent for blood tests to monitor me x

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Hi, I have Crohn’s disease and the care with that hasn’t been great either.
You know your body best. Keep being persistent with things.
Everything will be worth it in the end x

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I have Hashimotos thyroiditis as a result of my first pregnancy. I was consultant lead for my second (but that was due to complications with my first), however, I was also referred to a second consultant who reviewed me for my Hashimotos. You should be having your bloods taken every 6 weeks at an absolute minimum, and your TSH needs to be under 2.5. Is 16 weeks the first time they have taken your blood?

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I was very similar. I was told it was post partum thyroiditis, and it would be temporary. I then saw a different GP from the same practice who said it wasn't temporary at all, and I would be on levothyroxine for life. I had read around it a bit and asked if it was Hashimotos, and the GP said no but couldn't really explain to me what I had. I felt like no one really knew what they were talking about, so I booked in to see a private consultant who told me I had Hashimotos. I was massively underdosed as well.

I'm really not one for complaining, but I think they have really messed up. Who took the bloods at 7 weeks? If your TSH has been high since 7 weeks and they have not acted, that is not ok. I would skip the midwife, call your GP, and get them to monitor your TSH throughout your pregnancy. As for your midwife, I would TELL her how important TSH is for development, and personally, I would lose all confidence in her because she should be aware of that!

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2 kids and both time i was consultant led. I have hashimotos disease which is also thyroid. My 1st baby was a breeze but my 2nd had my levels change. Since having her im on double the dose of levothyroxine. Yes, you should be consultant led. I had 2 extra appointments via consultant.

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I was in the middle of a Crohns diagnosis when I got pregnant, my midwife referred me to a specialist IBD clinic at 16 weeks. I started seeing a pregnancy consultant at 19 weeks and I update on what my gastro consultant is doing in terms of managing symptoms etc. My midwife and both consultants are brilliant though as not one person is jumping to label me 'high risk' and are really reassuring that should my symptoms be managed I can do whatever I choose. They said I just need additional monitoring and told me what red flags they are looking out for. I attend the IBD clinic 4 weekly and have additional growth scans from 32 weeks booked in. My gastro consultant makes me do regular inflammation marker tests and I tell my consultant any symptoms (I have low iron too) and they'll do bloods. This sounds like you should push for the midwife to make the referral or request a new midwife in the team if you feel you are not being listened to. You can also visit the GP for bloods and then bring it to their attention.

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