Infertility investigations/IVF in Scotland - thread 2

[Kitekat81]

A thread for those who are undergoing infertility investigations / IVF in Scotland 🙂

@Comiston34 ooh a campervan sounds handy, I hadn't even thought of that! 😄

@Kamiros Edinburgh was the selling point or we're almost as good going with Dundee The Edinburgh place is about a 5 min drive from us vs 1hr 10min to Glasgow. Or 1hr 15min to Dundee.

Nothing on this journey is straightforward. I was due to do another cycle last month but my thyroid levels jumped so really hoping they've come down again.

@comiston34 That'll make a big difference then, the staff in Edinburgh are lovely too.

I get the pain of that, I think I've finally got my thyroid settled now but it took about 18 months and a battle with my GP who thought 5 was perfectly acceptable when TTC.

@Kamiros good luck for your appointment. Will you be speaking to the consultant about next steps today?

@Comiston34 had you had issues with your thyroid and prolactin before, or was that an unexpected hiccup when you started treatment?

Thanks @kitekat81. Bloods all done, will get a phone call later but I know the result to be honest. I'll have I'll have review meeting next week for next steps but they said this morning it'll be about 2 months. This af doesn't count. I'll probably start norethisterone on around day 16 next cycle.

@Kamiros I really hope it's a BFP but at least you know you have another shot at it.

@Kitekat81 My TSH has hovered around 4/5 for last 5/6yrs and was referred to EFREC in July 19 when my prolactin spiked but consultant there didn't offer any treatment. When I saw GCRM and Create they were horrified and got GP to prescribe levo. Then prolactin spiked again in Jan so saw private Endo for advise but she felt it was the inactive part of the prolactin so didn't treat. No idea why TSH has spiked again but upped the dose and it's slowly coming back down. It's such a saga and GP isn't really on board with medicating and testing 😕

@Kamiros it's a tough day for you today, but at least you'll know for sure and can start making plans for what comes next.

@Comiston34 it actually amazes me how little interest the gp's have shown in this. I had my initial blood tests done back in September and was told they were 'normal', I didn't think to question that, it was only in my appointment at EFREC in January that I actually saw the results and could see that both my FSH and oestradiol were outside the normal range. I mean how hard is it to get that right, the ranges are printed on the results slip and my FSH and Oestradiol results were even in bold with an 'H' next to them, and yet I was still told that they were 'normal'! 🤦‍♀️

My GP openly admitted he was clueless on Tsh levels and prolactin levels and what it meant so he referred to EFREC endocrinologist who then said nowt to worry about just carry on TTC. Super frustrating.

Hi Ladies, welcome @Comiston34 and @BeHereNowx32. Been reading the last few posts with interest, I'm sorry it can be so bloody complicated with logistics etc. but a lot of good ideas on how to do it!

Still find it quite wild that GPs don't have the knowledge of thyroid levels, I've never had this but know a lot of ladies that have and it just comes up time and time again!

I've just had my nurses appointment so waiting now for a period and then start nothisterone on day21, likely baseline scan around 23rd June and EC first week in July. Appointment was so fast, literally less than 15 minutes... is that normal? She was very clear on taking one step at a time and not being too hung up on any details as could all change, think she read my personality quite well then!

@florafoxtrot Once consents are signed it should go pretty swift... with some waiting in between, at least for us! We had consents on the 5th, they never confirmed our price until last week when I sent a stern email about it, and paid the day after. Today I sent another email about the bloods I need and they called me a few hours later with an appointment for bloods and after that she said is getting started, so sounds right!

Thanks @GemmTryTTC. All consents done as we were able to do them online. I think I'm just a bit worried that there wasn't really much instruction other than to phone on CD1 and to keep taking folic acid and vitamin D! It is probably the one step at a time thing tbf!

How are you getting on with it all?

I'm ok, sick of waiting and feeling a bit left by GCRM, I think they are very busy, and I am trying to be patient, but I feel like I have to chase them for things to continue....did the consents on the 5th of April and just last week we had a price to be able to pay, and because I sent an email! same with the appointment for the bloods pre-start, I had to send a message today, otherwise I'm sure we' would still be waiting!

I hope things start moving now, because the more I wait the more my nerves creep up!

Hi all, mind if I jump on the thread? Got bad news in the post today about my AMH results - they’re reading low so I don’t meet the criteria for NHS funded IVF in Ninewells. Have had a horrific week post HSG so this result really hasn’t helped. My AMH is only 0.5. I’ve made an appointment in Ninewells at the end of the month so discus ‘my options’ - obviously self funding is my only option. Has anyone been in this situation? Any gone the self funding route with Ninewells? I’ve had all my bloods/ultrasound/HSG done already, is this considered in the overall cost?? Any advice would be really helpful xx

@eiremogra Welcome. Sorry to hear about your news. I'm afraid I don't know about the self funding. I had already decided to go private when I found out about my amh - I am also 0.5.

Unfortunately my first cycle failed but we managed to get a decent grade blastocyst from my limited follicles which is similar to some with much better amh levels. I was devastated when I got the news but there's still a lot of hope so try not to let it get you down too much.

Hopefully someone else can offer advice on the funding side.

@Kamiros I don’t meet the criteria for funded IVF so my plan is to go private. I have so much to learn..feeling overwhelmed tbh. I know there’s a high risk of it failing but I’d rather try than nothing at all! X

@Eiremogra welcome to the thread and sorry you've had bad news this week. I don't want to worry you as it might be different with Ninewells, but at Edinburgh Royal Infirmary they stopped doing self-funded treatments during Covid, and although they are now restarting these, I was told the waiting list would be a year. It might be different with Ninewells (some others on here might know more?) but it might be worth looking at some other clinics as well to have as a back up. Some ladies on here are having treatment at GCRM in Glasgow, I think their waiting list is about 4-5 months. I'm about to start with Create in Manchester, they specialise in patients with low AMH which is good, and there is no waiting list. Manchester is obviously not an ideal location but you could look at doing your monitoring scans in Dundee and just go down to Manchester for egg collection and transfer. Most clinics do free webinars that you can sign up for which will give you an idea of the process and prices, so you can get a feel for which clinics you are interested in before you commit to paying for a consultation with them x

Hi @Eiremogra, I'm really sorry you've had bad news and had such a tough week.
Things might have changed but back in 2017 we had all the initial investigations and then opted to do self-funded IUI, the only costs we had were for the medication, scans, procedures etc. associated with that IUI. Surely you shouldn't really have to pay for things you've already had? I'm sorry if I've misunderstood your question.

We are now self funding IVF in Aberdeen and waiting list has been about 3-4 months.

Hi Eiremogra, really sorry that you have been given the triple whammy of HSG pains, low amh and funding being refused. Mine is only 1.3 so not much higher, NHS has discussed using donor eggs with me but that is something else to consider at another time. I'm not quite there yet.

As the ladies have already advised the private IVF sector in Scotland isn't a happy picture. GCRM used to be a start within a month kinda of place however due to COVID and waitlists for NHS folk have being opting for private so this has placed a higher burden on GCRM.

Glasgow Royal offer private treatment and I think Ninewells are open to self-funding. As is Aberdeen.

Like Kitekat81 suggests Create Fertility in Manchester don't have a wait list and specialise in low amh/older women. I myself started treatment with them but due to logistics I opted to stick with GCRM. However if you are in Dundee there is a monitoring clinic there which I planned to use so only travelling for collection and transfer. You'd need to go down 1st get a follicle scan and have a initial consultation. They have regular webinars which you can sign up for.

Ladies that’s so helpful! Thank you!! I’m excited to finish work and go home and check out Create! Xx

Feeling a bit anxious this morning - updated TSH bloods at GP later on which will decide if I can go ahead with next cycle - likely in June if GCRM are able to get me going quickly after Nurse Planning appt end of May.

@Eiremogra how did you get on with your research? If you've got any questions give me a shout - I had one cycle with them so have good knowledge of logistics etc.

Hope the bloods go ok @Comiston34. Are you likely to get the results quite quickly?

I’ve to drop off my letter with my GP for Nothisterone today. A bit anxious as to whether they are even open

@comiston34 Good luck. I get my TSH results tomorrow but its just standard and I expect they'll be OK.

I'm still bleeding after my failed transfer. 12 days now. Really want to get back to normal so I can get my next cycle booked in.

@Florafoxtrot good luck with GP - I should get TSH back in a few days but antibodies can take a bit longer - that one looks to within the norm range so not too concerned. Hoping TSH is lower - it was 7.1 in April and 5.8 a couple weeks ago so heading in right direction but a bit away from 2.5!

@Kamiros - Sorry you are still bleeding after your transfer, enjoy some well deserved time off the IVF bus. Treat yourself well and be kind to yourself.

@comiston Are GCRM asking for it to be 2.5? They asked for mine to be 4 which I thought was too high. In the end it was 2.2 so it was ok.

@Kamiros They advised below 4 but prefer under 2.5. Create were fixed on below 2.5 and made me re-do bloods before treatment and delayed me by a month to see endo when it looked like prolactin was slightly out. Very strict!