IVF and raised TSH - should I be concerned?

[orangecatmum]

Hi all,

I'm going to be starting my first round of IVF in the next few days, and we'll hopefully be doing an embryo transfer in a few months as we are doing PGT-A testing first.

However, a recent blood test via my GP showed my TSH had risen to 3.8. A week later, another test at my fertility clinic showed it was 2.9. I started taking 25mcg of levothyroxine last summer when my TSH was just over 4. I had to really fight for that as the GP insisted it was unnecessary. But it worked and dropped to below 2 within a few months.

But now it is back up, I am worried. Neither the fertility clinic nor my GP seem to be worried and my GP said their endocrinologist won't up my dosage.

Am I right to be worried or should I trust them? I know that a TSH of 2.5 and under is recommended, even by the British Thyroid Foundation, but they won't listen to me. The clinic says as long as my TSH is under 3 it's fine, but it looks like it's fluctuating a bit.

Has anyone had something similar? And am I worrying too much? Unsure whether to spend more money on a private endocrinologist or not.

[Skittles11]

This is super frustrating that you don't have the support from your clinic or the GP as I believe it is best for the TSH to be under 2.5 for best chances. But there seems to be so much variability in the recommendations from different healthcare providers which is really not helpful. Have you shown your clinic in writing the recommendation from the British Thyoid Foundation? X x

[RedFox23]

Hi, my clinic wanted me to up my meds too, my GP wasn’t keen but agreed to do it as I had a letter from my ivf consultant to say that he had requested it x

[Nabsal]

yes you definitely need to concerned about TSH it definitely need to below 2.5 . I am on levothyroxine from so long to keep it required level. Ask GP to sort . Even my gynaecologist she insisted the GP to increase dose .

[Yellowlove]

Mine was fluctuating a lot around the time of doing IVF (similar numbers to you)

My original clinic wanted it below 2 and then my second clinic said below 3 was ok. It seems to vary!

They did however up my dose to 75mg a day only because it was fluctuating so much. Only then was it under control

It’s usually under 2 now.

I’ve always found the GP is never really bothered about, and even got annoyed when I asked for antibody tests, so if anything I would talk to your IVF consultant about it again and explain your worries. It was my IVF consultant who always controlled my doses.

[Babychester1]

Hi there,

I've recently been through a similar experience. My levels were only 0.8 over the recommended level and my G.P reluctantly agreed to put me on 50mcg of levothyroxine as she disnt feel i had a problem. My g.p said the medication we tale during the treatment process can mess around with the natural TSH levels and assured me not to worry. I was on this for 4 weeks before I had another blood test which showed my levels had dropped below 3.

The clinic were happy for my treatment to commence and last week I had my first go of ivf frozen embryo transfer.

I understand how you feel and be assured that you're not alone but please be positive and assured your levels are normal.

I hope this helps

Best wishes

L x

[Cd10v07]

Hey,I've been on thyroxine for about 20 years!! Last year my dosage went on a roller coaster. Cut a long story short, for the best chance of conception it needs to be below 2.5. Any higher then the lack of thyroid hormone affects everything in your body which includes hormones for pregnancy. I've had 2 miscarriages and we think it is likely due to a too high tsh. I've been in the same place that I've had to fight with the gp as the recommendation from the who is 2.5 to 4. But the data this is based on is outdated, and actually the general population should have a tsh below 2.5! Cut a long story short, you have a couple of options - as it needs to be below 2.5.... you can complain via PALS and use the NICE Guidelines- the one for assisted conception and one for management of thyroid conditions - in particular hypothyroidism which you have. These clearly state you must be under 2.5 and say your clinic and gp are not putting your health or the guidelines first. You should not be in this position and I'm so sorry you are... the clear message I've had though is that the thyroid isn't in check you shouldn't go ahead with ivf - we had to wait 3 months for my levels to be spot on - and it takes 4 weeks for any medication to reach an equilibrium in the body.

I'm sorry of that was a rambly message. I just wanted you to have all the information I know 😊

If you want any more information or to chat further just let me know 😊.

[Anjalichaudhary]

Hi, During my transfer my tsh was like13, my doctor also was not worried, she only prescribed the medicine, and in my whole pregnancy my thyroid was like 2, 2.5, 4, 10,1. But it didn't affect my pregnancy.

[Glaedy]

I know how you feel about GP - I had to fight for years and in the end, got Levothyroxine by a private DR, and when I proved to GP that I needed it (my TSH was 4,9 when GP denied that I needed meds) they said that now my results are normal! Because I was taking meds! And they don't see the reason why should I get them from them and I should continue going private 🤯 Later pandemic happened and I was unable to get an appointment/prescription privately, so I was off meds, after I went to a fertility clinic for IVF my TSH went up to 2,9 same as yours and they said that it was too high + my history what I shared about GP and they prescribed me 25mcg dose, and after our successful transfer they wrote me a letter for GP stating that I need levothyroxine. And this time GP took it seriously....after 7 years 😅 during pregnancy hospital increased my dose to 50mcg and I am on the same dose since I think my last TSH from January was 1.39.

If you feel that it's too high try to speak with your clinic or GP again about your concerns maybe they will finally listen

[orangecatmum]

Thanks everyone! I knew I was right, it's just so frustrating that neither my GP nor the fertility clinic take this seriously. They still work within those wider parameters. I don't know if I have the energy to keep fighting but also am concerned about having an embryo transfer in a few months while my TSH is wobbling above 3.

But I am also glad to hear tales from others whose TSH wasn't below 2.5 and ended out fine.

I think I will bring it up with the IVF clinic again just so they are aware of my concerns, and hopefully they listen.

Thanks all!

[orangecatmum]

Great update - my GP clinic just called and confirmed that the endocrinologist does suggest my TSH is between 0.3 and 2.5 so has told me to double my levothyroxine dose to 50mcg from tomorrow! And they will test me again in 6 weeks and will raise it more if needed.

A bit shocked (and relieved) they had such a turnaround but maybe this is good news that the NHS is finally starting to take this seriously.

Thought I'd share in case anyone else finds themselves in a similar situation.

[Endofitall in reply to orangecatmum]

Just seen all this and they absolutely should be managing this for you to get TSH down below 2.5 so well done for pushing and thank goodness sense seen!! Best wishes for your next transfer.

When I went to recurrent implantation clinic with Prof Brosens TSH was one thing they checked and he was pleased mine was below 2. There’s so much evidence now can’t believe fertility clinic was willing to ignore it. Alls well that ends well but well done for sharing. Hopefully others will find your post and question things too.