Advice needed please.

[amie1]

Hello to all, sorry for the long post!

Having had ivf with a miscarriage and a failed cycle we are going into a frozen cycle. I have a complex history which includes radiotherapy resulting in hypothyroidism from the age of 12.

When starting our ivf journey no one checked or mentioned my thyroid prior treatment, I mentioned it on a couple of occasions but it was always disregarded. It was only when I had my miscarriage a colleague of mine from work ( a fellow nurse) mentioned it to me and the risks in early pregnancy that I looked into my levels. They were high and when going into our 2nd fresh cycle were told it would be OK having TSH levels of 6.1 with a repeat prior to transfer of 6.9 and normal T3 and T4. We went ahead and it didn't take. I appreciate that these things happen however feel I have been mismanaged and now feel frustrated as this is our final chance to have a child.

Secondary to this another grievance, throughout my treatment I had made it very clear I have a reaction to fentanyl so it was clearly stated on my notes preoperatively and spoken about prior to my second egg collection. I also had a red wrist bad on highlighting my reaction to the drug. In theatre they gave me fentanyl and post opp I have an awful reaction. At the time I wasn't aware I had been given the drug until a week later and one of the nurses called to check how I was and explain that I had been given it.

Does anyone have a similar experience? Or any suggestions on how we could approach this?

[Coracle]

Am so sorry to hear about this. I would definitely complain about both matters.

Was this private or nhs?

Re thyroid. If you are already on thyroxine, then my understanding is they should be keeping your tsh at 2 or less, during pregnancy. I am really surprised to hear no-one was on top of this. Even ladies who have no known thyroid problems, and their tsh is in the normal range, fertility experts like them to start thyroxine to get the tsh down to below 2.5 if it isn't already to give best chance of getting pregnant. I can double check these figures for you (I am a GP) I myself, with 'no' thyroid problem had to start a small dose of thyrox, to get my tsh from >3, to below 2.5 before embryo transfer to give myself the best chance. So sorry to hear you are dealing with this news and I think you are absolutely right to complain to try prevent this happening to someone else. However, important to remember in ivf there are so many things we are trying to optimise, and this may not be to blame.

The fentanyl episode is appalling!! Again complain, and ask them to treat this as a 'significant event'. This is where the clinical team AS A TEAM will look at your notes and what went wrong and hammer it home to everyone to make sure this does not happen again for you or someone else!

So sorry you have this to deal with as well as everything else.

xx

[Coracle in reply to Coracle]

There is actually a Royal College of Obs and Gynae guideline on the tsh level, so it is very accepted. I can try find the link for you as I read up about it when they suggested thyroxine for me. If this was one of your free NHS cycles, I think you could petition for another, and if private, I think you should seek financial redress... x

[amie1 in reply to Coracle]

Oh yes that would be great if you can forward that to me, I feel like being prepared with the facts may help our case for another cycle if needs be. X

[Hidden in reply to Coracle]

Sorry to jump in! British Thyroid Foundation (BTF) also have guidelines for preconception and antenatal care they also reiterate thyroid levels for women to be <2.5 xxx

[amie1 in reply to Hidden]

Thank you I will look into both. X

[amie1 in reply to Coracle]

Thank you so much for your reply! It's so frustrating that I have repeatedly asked about my thyroid issues in the past to be basically ignored. This was in a private clinic but with NHS funding. It's upsetting that professional advice that you would hope is correct isn't and everyone including another facility consultant has told me the same that my thyroid levels needed to be <2.

We have voiced our grievances with the nurse today and are due to see our consultant and manager next Tuesday. It's just upsetting to think we could of optimisesd our chances if we had been better informed which the more I think about now frustrates me , having only two frozen cycles left we just have to pray it works for us. Thanks again for your reply xx

[Coracle in reply to amie1]

Well done for being strong and pursuing this. I think you are entirely within your rights to ask them for a free cycle. I don't think they can defend themselves. I would also consider reporting to HFEA, and to those in charge of your NHS funding for your clinic. (I think they will have something to say about it too!!) Re the tsh in pregnancy for ladies on thyroxine, as I say, even me as a lowly family doc not a gynaecologist KNOWS that my pregnant ladies should have tsh <2! It is something I always watch for. (not just since knowing more about it because of my own ivf journey!) Again, this should be a 'significant event' for them.

Hang on in there. Stay strong. xx

[amie1 in reply to Coracle]

Thank you so much. It's really lovely to have advice and support on this, I have literally been pulling my hair out and the more I have discovered the frustrating it gets. Me and my partner will look into HFEA side of things. As a nurse myself I hate to kick up a fuss but really think I need to in this instance xx

[Coracle in reply to amie1]

So sorry. This last cycle I have had my own 'anger issues' because of poor communication from some of the embryologists, and it is more than doubly distressing when this sort of thing happens. And I have decided for the sake of others going thru 'ivf hell' it is worth me being a thorn in their side and complain!

I think for yourself and others, in your instance it really is worth kicking up a fuss.. with absolutely correct justification. Am so sorry on your behalf you are going through this on top of everything else. xxx

[amie1]

Thank you! It very difficult to put your hopes and dreams into someone elses hands. Good luck with your ongoing treatment xx