Immune/NK Issues - aka Pred Thread no 24!

[KittyKatSmile]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@Chickjen @FrannyAnny82 @ginandtonicformeplease @HoldingOn2Hope @LockThatFridge @Luckyducky2 @MairMum18 @MrsMargot @weddinghelp1 @williteverhappen @Wishing5tar @zoe16
@Eeviee
@Ultra26

@weddinghelp1 I agree with @KittyKatSmile - today you are pregnant and I can definitely see it too. Keeping everything crossed xx

@weddinghelp1 take the pred and test again in a couple of days. Keeping fingers crossed for you: x

Ladies help needed. I don’t know if I should start progesterone.

This month I decided not to use OKPs as it stresses me out. So I’m using the Ava bracelet and tracking my temps on fertility friend. So last week I had EWCM on Wed, Fri & Sat and figured was close to ovulation, managed some BD. I’ve been waiting for temp rise to start the progesterone. But I haven’t had a significant shift in temp, it’s been creeping up very slowly. I’m terrified to start incase I haven’t actually ovulated as I think I did that in nov and ended up with a 43 day cycle, totally messed it up. If I have ovulated then slow rise temp probably means prog is low. Anyone been in similar situation?

@Eeviee that’s a tricky one...I think you should probably email the nurses (assuming you’re with mr s?) or your dr for advice. On the one hand it’s not a good idea to take pred pre-o - I had a freak late ovulation one cycle and it got all messed up; but on the other hand you need to take it from o ideally and should take the cyclogest too if progesterone is low.

Hi All,

A general question, after how long did you all decide to see Dr S (or others)?

It is an awful lot of money to spend when in the grand scheme of things we haven't been trying that long, but my gut is telling me my Hashimoto's and perhaps something else is stopping me from having a successful pregnancy.

xx

@ceebee21 how many mcs have you had and how old are you? I had 3 in 6 months and also have hashimotos. The NHS said it was just bad luck and refused to do any tests (despite their own guidance) because I was youngish (30) and kept conceiving quickly. I knew there was something wrong and so glad I went to Mr S. I had my son on my second cycle on his plan and now back for number 2 (having had a mc in between not on the treatment - I obviously need it!).

Hi @HarrietM87 thank you for your reply!

I have had one MMC and a CP since having my implant removed in July 2019 - I am 26!

It's just a really hard decision to make... do I wait and potentially have another MC if there is a really issue stopping me from maintaining a pregnancy, or do we go and see him.

We have sort of said if nothing has happened by the end of this year, or if we do have another MC then we will go and see him.

What did you discover with Dr S, did you have NK cells?

x

Hi @ceebee21. I think it probably comes down to how easily you can afford it at this stage. The tests are £2k+ (had mine done in 2017 and think prices have increased). If you can afford to pay that for peace of mind then you have nothing to lose. If not then you’ve got the luxury of time. Statistically, the vast majority (I think it’s 95-98%) of women with 2mcs go on to have a 3rd successful pregnancy, which is why the NHS don’t test until you’ve had 3. So the likelihood is that you don’t have any problems at all. I assume your hashimotos is well controlled? I was diagnosed at 16 so it was stable and TSH was 1.5 (recommended that it’s under 2 for ttc btw) but I still had a concern that it was affecting things. My tests with mr S showed very high antithyroid antibodies (as you’d expect with hashimotos though I think they were higher than average) and very aggressive NK cells. (Incidentally my mum had hashimotos and 3 kids without any issues.)

Like I said, the plan worked for me and I had my beautiful boy. Trying now again for a sibling for him and hope it works for me again!

Thank you @HarrietM87

Yes it is a difficult one, I mean yes we can afford it, but I am just reluctant as like you say, hopefully I will go onto have a successful pregnancy.

I think at this stage I will wait and if I have a 3rd go and see him, or if have not fallen pregnant again by the end of the year go then as well.

Tbh, mine has not been well controlled; when I was pregnant last year, I had a blood test at 6 weeks and my TSH was over 10!!

I am still trying to get the thyroxine dosage right and had a blood test yesterday to see how it is going - my TSH inJanuary was 4.5 and I argued that this was not right for TTC.

My Antibodies are raised, although not sure quite how bad they are - they were both in the 300's.

I have recently gone gluten free as well to see if that affects anything.

x

@ceebee21 it sounds like it could just be a thyroid issue. It’s so important to have your TSH level right, especially in early pregnancy. If it was over 10 that could well have been the cause of your mmc. You need to get it to under 2 before trying to conceive, and then as soon as you get a positive pregnancy test up your dose by 25% and get your bloods done ASAP. If I were you I’d definitely sort that out and try again before seeing Mr S. best of luck!

Btw just for info, I’ve been on 150mcg for like 16 years. I had tests every 4 weeks in pregnancy and needed to be on 200 for the first trimester and then went down to 175 for the rest of the pregnancy. Went down again to 150 a couple of months after giving birth.

Oh and one more thing! Hashimotos can cause your ovaries to appear multicystic. This does not mean you have PCOS and doesn’t affect fertility (assuming you have no other symptoms obviously). Just in case you have a scan and they try to freak you out about that.

@HarrietM87 Yes I think that is my best bet... fingers crossed my results tomorrow come back ok. My current dosage is now 125mcg one day and 100mcg another.

After the TSH of over 10, they upped to 125mcg every day, but that proved to be too much after a couple of months.

Does your GP test your antibodies as well? Mine doesnt seem to

x

Yes it was probably raised due to the pregnancy, which is why you didn’t need the higher dose long term after the Mc. My GP doesn’t test antibodies - once you’ve been diagnosed with hashimotos there’s no real reason to - but shehata did it as part of his standard tests.

@HarrietM87 so GP called me this evening to say my TSH has come back at 6.68!! Just don't know what is going on....my last result on a lower dose was 4.56.

Im now back up to 125 every day, but last time I was on that my T4 went up to 25.

Not sure what to do, should I ask for a referral to someone?!

@ceebee21 could be worth trying to see an endocrinologist yes. It sounds to me though like you just need a while to stabilise on the right dose. Pregnancy puts everything out so it might just not have settled yet. I’d take the higher dose until your TSH is under 2. Not sure re the implications for T4 but 25 is still within normal I think (albeit at the top of the range). I’m not a doctor obviously but I don’t think you should ttc until this is sorted. Hopefully once it is you’ll have no problems.

Morning ladies

Has anyone found they haven't responded well to letrezole?
It's not worked for me tried 3 cycles. Clomid did last year however Dr S isn't a fan of it.
Next recommendation is Gonal-f injections.

Xx

@HoldingOn2Hope have you not had any follicles? I only had one follicle on 2.5 and 5mg (my son came from my only follicle first time round), and now seem to respond better on 7.5mg but I think it’s thinning my lining so not sure if I’ll continue next cycle. Is Mr S recommending Gonal F? Why are you doing SO - do you ovulate by yourself? I’d probably just do what he says tbh.

@HarrietM87 thanks for your help.

Just out of interest, how many others on this thread have Hashimoto's and also have High NK Cells that they are being treated for?

Or is there anyone else on the thread with just Hashimoto's... if so, what plan are you on?

Thanks

x

Can I ask those if you who have done IVF and are pregnant - when did you do your first intralipid and when did you start the pred? I want to just check if it matches up with my clinic.

@Ultra26 I actually did mine sometime before I knew I was pregnant. I guess probably during the tww. I found this a bit strange but I was successful so... I then had another 2 lots post BFP.

@HarrietM87 do you know what the lower recommended level for TSH is? I keep reading it needs to be under 2. Mine is 0.01 (Graves Disease) so I seem to have the opposite problem to most people but with the same consequence of not being able to conceive.
@ceebee21 I went to see a private endocrinologist who was ‘only’ £280. Certainly cheaper than 2k plus for Dr S anyway! He wrote to my GP requesting antibody testing so that was done on the NHS. Is that a route that you could consider initially? What I don’t know is whether I have NK cells or if you can request that they are tested. I don’t think we can afford the price of any further treatment so I’m just hoping that once my thyroid levels are stable it will happen naturally.

Thanks @KittyKatSmile - we are thinking to do one before transfer. What about the pred - when did you start?

@LockThatFridge I think it’s 0.4 - just google thyroid reference ranges. I don’t know much about graves but I had a family member develop it post-pregnancy and then go back to normal later. She went on to have more children afterwards.

I could be wrong but once you’ve been diagnosed with Hashimoto’s I’m not sure there’s any point in antibody testing (ie the testing is to check whether you have hashimotos or something else), but I would have thought an endocrinologist could help @ceebee21 calibrate the thyroxine dose better than a GP would.

@Ultra26 the pred was def at embryo transfer. I remember there were a blissful 2 days between egg collection and embryo transfer where I was drug free before starting on the second huge lot!
This would be the same as Dr S's very firm stance of pred from ovulation.