Anyone have an underactive thyroid with high TSH?

[Merryclaire]

Hi - I’ve been talking levothyroxine most of my adult life. I’m currently 20 weeks and just found out that my TSH levels are 7.8 - yet according to the British Thyroid Foundation they should be below 3 in 2nd trimester.
Though the obstetrician thinks it’s high, my GP said he wasn’t worried and hasn’t increased my dosage at all. However I’m really starting to worry about an increased risk of miscarriage and still birth.
Anyone have high TSH levels in pregnancy and getting a similar relaxed response?

Mine shot up in my first trimester to around 6.5, having been at 0.2 before. Now back down to 3.1 which my doctor is happier about, will find out if it's dropped again in two weeks for my 16 week midwife appointment. 7.8 is higher than I would be happy with, but equally I've been told that it's really only the first trimester where they have to monitor it super carefully.

Thanks for your reply. I definitely think it’s been overlooked. Spoke to GP this morning, who says I should have been referred to an endocrinologist at the outset by the midwives. He has upped my thyroxine and written to them.
Thankfully he thinks I shouldn’t worry too much about it having caused any harm at this stage.
However, when you look at all the possible issues high TSH can cause, I do feel really let down and anxious.
Midwife and obstetrician previously told me to get the GP to check my levels (didn’t even put a request through for the blood test, which caused a lot of pushback from drs office), but GP very clear that this is their responsibility as the experts and that GPs just follow their recommendations. So no one wants to take responsibility for my care!
If anyone else with thyroid issues reads this, push them for a referral as soon as possible as even though GP has tried to reassure me, I feel so anxious that it could have caused harm to the baby.

Updating this in case any other hypothyroid ladies find themselves in the same situation.
Had an appointment with the thyroid specialist this morning - they are basically saying there has been a cock up because my referral in early pregnancy never went through, and my TSH level at that time was much too high. She says they are going to investigate what happened, and that ‘hopefully’ we are past the stage of it having caused a major issue.
At least I am being treated now, but it’s very worrying to think my levels have been too high throughout my whole pregnancy so far (now 22 weeks).
I just want to warn others, if you have a thyroid issue then you need to make sure you get a referral early on in pregnancy. The possible consequences are miscarriage and growth issues so it should never be overlooked.
TSH should be below 2.5 in first trimester and 3 in second.

I'm so pleased to hear you're under good supervision now and your pregnancy is going well. It's very kind of you to give advice for anyone coming across this problem, it's a real issue with GP's not being up to date with date with thyroid issues and pregnancy.

I have Hashimotos and am currently 9 weeks with my 2nd and meet my endo today for my second thryroid blood tests so far. She'll see me every 6 weeks for bloods throughout the pregnancy. I had to tell my GP at 4 weeks to up my meds as he wanted to wait, thankfully I'd gone through it before and could tell him it was what the endo recommended.

Standard advice is to up your meds by 25ug as soon as you get a positive test. The baby can't produce it's own thyroid hormones for the 1st 12 weeks so it's takes yours, that's probably why your TSH was so high, your body was compensating for the extra strain by flooding your system as much as it could. Good luck with the rest of your pregnancy!

Oh and having a thyroid issue makes you more likely to get gestational diabetes unfortunately and if you do, the levothyroxine means you're more likely to need insulin to control it rather than diet alone. Hopefully it won't happen at all but just to warn you if a potential complication.

@MariaDingbat Thanks for adding to this. Sounds like you were more clued up than me. Glad you are getting proper care from the early stages.
Frustrating thing is I was let down 3 times - firstly the initial referral by midwife to endocrinologist (which I didn’t know about anyway) never got processed. Secondly, my GP told me my level of 7.8 was absolutely fine (which I now know it isn’t for pregnancy). And thirdly the obstetrician, who said my TSH was too high, didn’t request my blood test or log any details on my records, so when I contacted GP about blood test they initially refused to give me one as the ‘paperwork’ hadn’t been done.
The endocrinologist says she is going to investigate ‘what went wrong’ so it doesn’t happen to others.
I just hope to god everything will be ok with the baby.
While the medical professional doesn’t like us asking Dr Google, I think you have to. If I hadn’t looked into it, I would still be oblivious.

That’s really poor care - sorry you have been let down OP. Hopefully all will be fine for you but it’s not good enough that you didn’t get the right treatment at the time.

I’m not on medication for hypothyroidism but my levels regularly go out of range. I raised it as a concern when they were 4. something and we were in the middle of IVF. Then my early pregnancy screening was raised as a concern as being too high by the midwife, but the GP said they wouldn’t treat that level as I wasn’t already on medication.

Thyroid seems to be woefully misunderstood, especially in pregnancy.