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TSH nightmare

(10 Posts)
Inconsideratebutton Sat 27-May-17 16:36:21

Been in thyroxine for subclinical hypothyroidism (also have hashimotos) for over 2 years. Prescribed by fertility clinic.
GP didn't want to know at all as level
Not over 5.0
Dose was 50/75 alternate days and last TSH was 2.25

Just found out I'm pregnant so have upped it myself to 75/100 as nobody will help me. GP says it's down to EPAU they said gp or when I have first antenatal appt but surely I need to check before then and need someone to take over the prescription issuing ??!
Any advice very welcome !

jinglebellmel Sat 27-May-17 16:51:55

Congratulations! I was already pregnant by the time I got my diagnosis, so a little different but I did quite a bit of research. Yes, generally you're advised to up your dose by 25mg per day as soon as you find out you're pregnant. You need to have a blood test ASAP and dose will then be adjusted properly based on that. You need to have regular blood tests throughout the first and second trimester. You could try ringing the epu, but I think it would probably be the GP who'd need to deal with this. Your pharmacist may also be worth a try, mine was very clued up and actually phoned an endocrinologist for me at one point for advise.

My GP was less than helpful initially and I'd just had two miscarriages and didn't want to prescribe levothyroxine at all as tsh was only just over 5, I'd just had two miscarriages so wasn't taking any risks- I printed off the NICE guidelines and took them in to her, she did some research of her own and was much more on board after that. Your last tsh was fine so don't panic, but you do need to get a blood test a dose adjustment as soon as you can.

jinglebellmel Sat 27-May-17 16:57:02

www.thyroiduk.org.uk/tuk/guidelines/Lothian%20Guidance%20for%20Diagnosis%20and%20Management%20of%20thyroid%20function%20in%20pregnancy.pdf

cks.nice.org.uk/hypothyroidism#!scenario:3

These links might be helpful if you need something to show your GP.

Inconsideratebutton Sat 27-May-17 17:03:22

Thanks. The gp just doesn't seem to want to help. I asked the epau at my appt and they said it was down to gp or when I'm under proper antenatal care (have to have a repeat scan in couple of weeks then go from there pregnancy wise)
I'm just worried as nobody seems to want to deal with it! I'll go back to the gp armed with some more information

RedPanda25 Sat 27-May-17 17:13:17

Hi @Inconsideratebutton, could you go and see a different gp? I've just found out I'm pregnant and I've just been for a blood test and she said depending on what my level is. I think as long as it's under 2.5 in the first trimester then under 3 in the second and third then that's ok. It's all such a worry isn't it?

Inconsideratebutton Sat 27-May-17 17:24:03

It's the gp surgerys stance in general I think as have seen a few over the last couple of years. Even went privately to an endocrinologist but the gp keeps saying 'it's subclinical so don't worry'.....
TSH was 0.50 in march and was 2.25 a coupe of weeks ago so worried it'll rise more I'll have to go and beg I think for the gp to check me

jinglebellmel Sat 27-May-17 18:03:26

There is a section on the links I've sent you advising how they should treat subclinical - and the advice is that during pregnancy they should, so I would go armed with that and stand your ground. It's difficult but you do need to push it, see a different GP if you can. It needs to be below 2.5 in first trimester, but they prefer lower if possible. It was a fine a couple of weeks ago and not everyone sees it rise in pregnancy so try not to worry but do be assertive.

I was careful not to offend my GP (as wanted her on side) I just said I appreciated her opinion and that she was far more knowledgeable than me, but I was concerned that NICE guidelines stated I needed X,Y,Z and wasn't getting them. I was sorry to be a pain but wasn't prepared to risk my baby and offered to show her the info I'd printed out.

verybookish Sat 27-May-17 19:23:11

You did the right thing to up your dose. I think the recommendation is to up 25-50% asap. Push for proper care. I had to and it caused me lots of unnecessary stress and worry. I agree with pp on being polite with gp but play the maternal stress card perhaps also? Depending on where you are based there are specialist phone clinics. UCLH in London has one. Good luck and congratulations!

honeysucklejasmine Sat 27-May-17 19:28:07

I was on 75 pre pregnancy, and went up to 100 during it. I stayed on 100 afterwards and now I'm on my second pregnancy I have gone up to 125.

Have you been referred to the endocrinologist? I attend a clinic every month to monitor my levels throughout pregnancy. The midwife makes a referral during the booking appointment at approx 8 weeks.

GirlcalledJames Sat 27-May-17 22:55:42

The acceptable levels of TSH in pregnancy were lowered fairly recently to the values you mentioned and it sounds like your GP isn't up to date.

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