TSH levels and affect on treatment - Fertility Network UK

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TSH levels and affect on treatment

Bear78 profile image
14 Replies

I just finished a failed round of IVF a month ago. I have since read the book - It starts with the egg - and also, been having consults with clinics abroad who seem a lot more thorough. I went to a clinic here in the UK that is also NHS but we had to pay because of my age - £6000. I went to the doctor two weeks ago to have my levels checked - including thyroid. My levels were ridiculously high - 93 - when they should be below 4.2. I asked my previous consultant about this as they didn't check my TSH again before treatment - the last test was August 2018 and it was 3.8. He has said that the thyroid has zero affect on the treatment as everything is manipulated by the drugs and it would not have had a negative impact. This goes against everything else I have read though and other clinics are saying that it should be as low as 2 for treatment. I'm so confused. I feel really ripped off - the treatment was substandard on a few levels - from patient care to information about protocols, aftercare etc. And now with this news that my levels may have been way to high for treatment - I don't know if I have any recourse to get some compensation? He has stated that the national guidelines say that thyroid has no relevance to the treatment ... Any thoughts/expertise on this would be greatly appreciated.

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14 Replies

Hi I'm sorry you've had a rough time with your clinic. I'm not a medical expert but I have Hashimotos thyroid condition which is an auto immune condition leading to underactive thyroid so high TSH levels. It was actually my fertilty clinic (private) that first suggested I might have it and tested for it. They say that ideally TSH levels should be around the 2 mark. I even paid to see a private Endocrinologist about it and he agreed that ideally between 1 and 2 for TSH levels in a fertilty context. I actually took about 12 months away from IVF to get my TSH levels balanced before we went for another cycle as they were fluctuating wildly every 6 weeks test. Managed to get a run of 5 months consistent levels and we've just competed a round of ICSI. I would definitely get a 2nd opinion on role of thyroid/TSH on your treatment. X

Bear78 profile image
Bear78 in reply to Meditationconvert

Thank you - I can't afford private and the IVF ... And also, I'm 41 and don't feel like I have 12 months. It's so upsetting

Meditationconvert profile image
Meditationconvert in reply to Bear78

I understand, I'm 44! Never too late 😊

Just push your clinic and say you've done your research. Good luck.

Kiedy84 profile image
Kiedy84 in reply to Meditationconvert

Hi to my fellow Hashimoto's friend🤗

Meditationconvert profile image
Meditationconvert in reply to Kiedy84

Hey there! Hashimotos!! What a bitch eh?!? 😊

Meditationconvert profile image
Meditationconvert in reply to Kiedy84

That's been my biggest challenge through my IVF journey is getting my bloody TSH levels at decent level 🙄 how about yourself?

Kiedy84 profile image
Kiedy84 in reply to Meditationconvert

Getting diagnosed and my personal journey was more upsetting than going through IVF, in the end I had to go to a private lab in Poland and get tested for a full Thyroid panel including antibodies because noone here wanted to offer this, not my GP and not my IVF NHS clinic. I suffered with symptoms for years. Thanks to infertility I discovered I had Hashimoto's and now I feel so much better.

I am lucky because I did those tests and ultrasound in Poland came back with diagnosis, presented to the GP, was out on Levothyroxine straight away. I then paid for a private consultation with Endo here and since then he is making sure my GP tests me every 4 weeks and he reviews the results via email. At the beginning of my pregnancy TSH shoot up to almost 8 this is now corrected and I am now on 100 levo. Going almost gluten free helps massively.

I have also read all books by Izabela Wentz. And I am a member of British Thyroid Foundation. And I want to cry with sadness every time someone posts about their unnecessary struggles with Thyroid on top of bloody infertility!

Meditationconvert profile image
Meditationconvert in reply to Kiedy84

I absolutely hear you! My GP surgery are hopeless when it comes to thyroid issues. My fertility clinic asked for me to be referred to an Endocrinologist and in fairness my GP did it but got a letter back from Endocrinology saying 'no we don't need to see her you as her GP can just manage the thyroid as you are doing'!!! I'm same as you it makes me really angry as even now my GP surgery are hopeless even though I've told them and they got a letter from the private Endocrinologist I paid to see.

Anyway I'm glad you're sorted and feeling better and good luck with the rest of your journey 😊

Cinderella5 profile image
Cinderella5

I think this is shocking and your consultant sounds like a sly idiot! My clinic wanted my TSH under 2 before I could commence treatment and mine was only subclinical at 4.96 - bascially GP wouldnt normally have treated but for ladies trying to get pregnant the recommended level is under 2.5 and even my GP knew this so armed with a letter from my clinic (which I didnt need) I went to the GP....Im very lucky as my GP is excellent I got put on levothyroxine. I got lots of advice from ladies on here though, here is the thread to my post....ignore the prolactin bit as it was high due to my thyroid levels, its all connected.xx

healthunlocked.com/fertilit...

Bear78 profile image
Bear78 in reply to Cinderella5

Thank you. Will take a look x

Kiedy84 profile image
Kiedy84

Hi, I am sorry to read your story, this is shocking. Thyroid function absolutely has effect on IVF or not. Please please please read about this on Thyroid UK or British Thyroid Foundation websites.

You need to have your TSH below 2.5 even with TSH around 3 chances of conception and sustainina a pregnancy are much lower.

You should also have your Thyroid antibodies tested too to check for autoimmune diseases. You can read my story about diagnosing my Hashimoto's in previous posts.

This is not easy in the UK and it's upsetting and you should be very angry at your clinic consultant indeed.

If you need any further support regarding your thyroid you can also post on Thyroid UK forum similar to this one. I wish you all the best hun, doni give up xx

Bear78 profile image
Bear78 in reply to Kiedy84

Thanks, I am trying to build a case to put the the GP and the consultant. It's been one thing after another and a huge waste of my time - time which I don't have. It's so upsetting.

Kiedy84 profile image
Kiedy84 in reply to Bear78

I totally understand, you are doing the right thing hun. If you can try to arrange an urgent private referral, it's worth it x

Zebedee1971 profile image
Zebedee1971

My gp was a fertility specialist and said my 2 miscarriages could be due to underactive thyroid. After being tested I was put on levothyroxine. I've since been to 2 private clinics and they both insisted my level was under 2. 5 or preferably under 2. It seems to be one of the conditions they insist on prior to starting treatment. I hope all these replies help your case. And I'm sorry you had such a bad experience.

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