Hypothyroidism and pregnancy

[milie785]

Hi all, first time poster, but I really need some advice / perspectives.
After my first pregnancy I have been diagnosed with hypothyroidism (TSH were 138, I was feeling really really low !). Been under treatment since then, all came back within normal range.
Three months ago, I went to my GP, to tell him I was thinking of TTC again, and to see if we should check my TSH level again (last check was last September). He completely dismissed it, saying that it was useless to check it every month, especially as we couldn t possibly know how long this was going to take.
1 month ago, found out I was pregnant, went straight back to my practise, saw an other GP, who booked me for some blood test, came back normal. Did some more test this week, they are now out of range (higher limit is 4.2, I am 4.7) I rang my GP, he says it is fine, nothing to do as this is not more than 2 standard deviation above the limit. I tried to insist, but he does not want to check before next month.
I realise I am very anxious about this situation, as I have read (maybe too much) about the consequence of hypothyroidism during pregnancy, and maybe my hormones are not helping either, but does anyone who has experienced the same situation have any advice on what to do next ? I am currently 8 weeks pregnant, so have not had my booking appointment yet. At the moment it seems my best option would be to go private to have a second opinion. Am I worrying too much ?

See the midwife asap. Your previous Hypothyroidism results and the current one warrants a consultant appointment. They can then make a decision to refer you to a endriconologist or not.

You should be aiming at TSH under 2
Ask for an endocrinologist referral

It's 5 years since I was pregnant but I seem to remember something about the need to put your medication up a bit as soon as you're pregnant? the first gp I saw when pregnant refused to listen to me about this and I had to see another one. So it was several weeks in before they increased my medication. I was also referred to an endocrinologist which was just a one off appointment.

Look at the NICE guidelines as gp should be following that, and the British thyroid foundation website.

Hi I had hyperthyroidism brought on by pregnancy which sorted itself after a year. Now 29 weeks pregnant and I’ve been wondering if it will return this time. Asked midwife who was totally unsure!

Get a referral. Every time I speak to my endocrinology team they ask if im pregnant or TTC and say I must immediately increase my medicine dosage if I find out I'm pregnant, then get a blood test asap and regularly after that. GPs are fucking useless at this stuff. I didn't know any of this before I fell pregnant ten years ago and if I had I may not have had a miscarriage.

Thanks for your reply, I feel less like I am panicking for nothing.
@AveEldon : TSH under 2 is also the level I had in mind, but when I mentioned this on the phone, my gp just laughed and said it was ridiculous... I looked online after that, and cannot find this level again. Would you have a link to this guideline ?
And during my second appointment (when I just knew I was pregnant) they did refer me to a consultant, but within he antenatal department, which won t see me before my booking appointment. I am just very frustrated as it seem so difficult to talk to someone at the very beginning of the pregnancy....

You don’t automatically need to increase your dose if your GP / Midwife / Obsetrician takes testing seriously - that’s the option consultants give because a lot of these guys play silly billies with thyroid issues. At my fertility clinic I was tested a minimum of every 3-4 weeks; but when you’re pregnant you often should be tested every 1-2 weeks.

TSH under 2.5 is for fertility. For pregnancy he TSH needs to be under 4.5-5.0 but they will also look at antibodies and free thyroxine too.

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

www.nnuh.nhs.uk/publication/download/thyroid-disease-in-pregnancy-ao38v3/

cks.nice.org.uk/hypothyroidism#!diagnosisAdditional

The above links say U.K. guidelines are that you should be referred to an endo and that trimester specific ranges should be used.

I can only find the doc above specific to one NHS trust that TSH should be under 2 in first trimester.

I have raised a question on the Thyroid UK forum to see if anyone has a link to anything that specified that the guidance should be that TSH is kept under 2 or 2.5.

My understanding is that on pregnancy levo should be increased straight away by 25mcg and TSH should be kept under 2 or 2.5.

I'll come back to you.

Even if you were not pregnant the goal of thyroid treatment should be for your TSH to be under 1 and T4 and T3 towards the top of their ranges so I would find another GP.

No one took my hypothyroidism seriously either. I talked to several people at the GP’s and had a phone appointment where I was instructed that my thyroid medication was safe to take in pregnancy. Thanks, wasn’t really the info I needed.

I basically asked every healthcare professional I came into contact with until someone ran a blood test and referred me to an endocrinologist. I’ve been treated regularly since then with increasing medication, but it was later than it should have been.

I wish I could give you better suggestions but I was basically “lucky” enough to to be in contact with someone at the hospital for a totally unrelated genetic disorder, and she was the first person to see the need to test me.

Which reminds me, I really ought to send her a thank you.

You might get referred after your booking appointment. For what it’s worth, I think the risks of hypothyroidism come from it being more severe and untreated, so your baby is likely to be fine. I understand how frustrating it is though.

Sorry to hear that you are having such a difficult time with your GP - I have had the same. I was diagnosed with hypothyroidism while I was a student (almost 20 years ago) and have been taking levothyroxine daily ever since. When I was pregnant with DC1, the GP automatically increased my dose by 25mcg per day, and told me that it was standard practise to do so for any pregnant woman as your body needs the additional support while pregnant.

I am now pregnant with DC2 but have struggled with the GP - they refused to increase my dose without seeing my blood test results from my booking-in appointment, and then were difficult even after they had received the results which clearly showed that I needed the increased dose. However, I was referred to the endocrinologist who wad finally able to get me on the right dose. She confirmed what I had been told in the previous pregnancy - that the standard recommendation is to increase your dose as soon as you discover that you are pregnant.

Like you, I was very distressed and worried about having been on a too-low dose through the early part of my pregnancy, but the endocrinologist reassured me that the risks are really only present if you are SEVERELY hypothyroidic during pregnancy - so while it is not ideal for you to be outside of the recommended levels, there isn't an additional risk to your baby at this point. The endocrinologist was horrified that the GP had ignored my requests, and actually wrote quite a forceful letter explaining that my dose should have been increased automatically and that the GP had caused me significant distress.

Your best course of action is to chat with the midwife at your booking-in appointment (which is presumably quite soon?) and ask for the referral to endocrinology, which you should get as standard given your history. Just keep asking and checking that the appointment has been set up.

onlinelibrary.wiley.com/doi/pdf/10.1002/tre.54

This link talks about normalising TSH, but then says "ideally to the lower half of the reference range"

I'll keep looking.

Where are you OP? These are the local guidelines for the North East which information on hypothyroidism in pregnancy on page 11

www.northoftyneapc.nhs.uk/wp-content/uploads/sites/6/2018/07/Thyroid-Gudelines-TRAMP2-June-2018.docx

See another GP. NICE guidelines say to increase your dosage by at least 25 micrograms then have your levels checked every 4 weeks.

I’m sorry to hear your GP isn’t taking you seriously. As soon as I found out I was pregnant my GP automatically increased my levothyroxine dosage by 50% and referred me to an endocrinologist in the maternity hospital. My first appointment with the endocrinologist was at around 8 weeks, and he confirmed that my GP was right to increase my dosage. I’ve had my bloods checked and seen him every 4 weeks since, I’m 28+4 now.

I think you should request a referral to an endocrinologist and if your GP won’t do it, find another GP.

For those trying to conceive and pregnant TSH target range is less than 2.5 . Most women will need more Thyroxine in pregnancy so standard practice is to increase your daily dose by 25-30 % in anticipation of this once your pregnancy is confirmed ie now .

Thanks everyone ! I will try to have an appointment tomorrow morning so that they can refer me asap. And insist again that they increase my dose...
@Minimum97 : thanks a lot for all those information, will read it and keep it !!
@MrsD28 : I feel a bit better reading your message. Less in panic mode. But still very angry with my GP !
And I am in London, but I am sure all UK guideline must be roughly the same no ?
Thanks again all for taking the time to reply, it is really helpful !

I am in London as well, so the guidelines I described above should definitely apply to you too!

Completely understand your anger with the GP - I was furious with mine! Actually cried in my appointment with the endocrinologist - partly out of relief that someone was finally taking me seriously.

@milie785 this is guidance produced by the British Thyroid Foundation and endorsed by the British Thyroid Association. It says TSH should be under 2,5 in first trimester.

www.btf-thyroid.org/projects/pregnancy/375-pregnancy-and-thyroid-disorders-guidance

Hope that helps.

@ MiniMum97 Thanks a lot, this one is very clear !
As an update : I have been to a different GP last week, who told me that my usual GP was an idiot (which I already strongly suspected...) and to increase my dose. And I have an appointment on Wednesday with an endocrinologist, so hopefully I will have a proper assessment of the situation.