ERA EMMA ALICE testing thread #6

[Gardenlady543]

@Janefx40 @birdbybird @seven201 @Gardenlady543 @patientpatient @MyEasterEggs @thislittlebird @Yuliaaa @Violette22 @2021ivfagain @OrangeBengal @Enfys23 @Loz2467 @DEIVF @Hopeful199 @ER12 @greendress789 @Douchas12111 @Lori2022 @AdviceForJane @Anonbaby @Molls87 @ChickenT2b @GoldenElephant @IVF22 @StillTrying10000 @warrior101 @whatcangowrong @Yaynayokay

Oh yes it really has happened we are onto thread #6.

All are welcome to join us, we started out as people interested in ERA EMMA ALICE but we seem to have had every test available between us.

So if you want to know about the microbiome, reproductive immunology or you just feel your case is complicated and what like minded people to talk to about it you've come to the right place

That's a good idea @MyEasterEggs to take a different route, I'm sure this is common with Ivf in general, i found it hard being in the clinic for the scan a couple of weeks ago with the bad memories.

@Dochas12111 sounds like you have a good plan :) we were going to do every other day PIO alongside the cyclogest and lubion but as we have changed to modified natural my specialist recommended every third day since I'll be producing progesterone.

I'm due CD1 on Wednesday and my specialist said first scan will be CD8 and aim for a transfer around CD19.

@Gardenlady543 it's exciting that you are starting so soon. With progesterone I think the most important thing is for them to test your levels regularly. On the last cycle mine were tested every 4 days which was just about ok (would prefer every 2). My levels did keep dropping so I kept increasing my meds. I also looked at the half life of the meds when I decided the doses that I would although knowing you, you are probably all over that one!

@Janefx40 yeah I'm worried about the progesterone regime as my levels will be constantly fluctuating. I'm supposed to take cyclogest 400mg twice a day, lubion once a day (which should be twice a day) and PIO is every 3rd day (I assume this is usually daily or every other day?), I do have enough for every other day though. My clinic have agreed to do a test the day before the transfer and I have a blood test I will do for hcg and progesterone with medichecks on 9dp5dt. They won't test any more than once though. My specialist is quite keen for me to stay in lubion and cyclogest and supplement with pio as she think I will find it too painful to continue, I'll be self administering it.

@Gardenlady543 my feeling was that there wasn't much point taking Lubion once a day as it will stop working after 12 hours! So I thought that was odd that so many clinics including mine prescribe it that way. But maybe the clinic knows something I don't. I did take one a day for the first few days post transfer - that is the dose on the packet which made me think maybe it was ok but then I quickly increased to twice a day.

I can't say I get the logic of taking PIO less than once a day unless it is a different brand to what I used to take. Having said that your specialist is right - prontogest is a bastard of an injection and I couldn't have self-administered. I actually refused to take it after my first cycle (not wanting to freak you out but it isn't fun). Also I was eventually on 3 x Lubion a day which was also a lot of injections tho less painful and, whilst it was wonderful that my cycle worked, it was hard taking that many injections until 12 weeks. So I guess if you can get away with less that could be a good thing.

Very few clinics test progesterone levels so again maybe they know something I don't. Maybe levels sort themselves out naturally, I don't know. But ARGC who I trust test every other day. I forced my recent clinic to test after my first euploid transfer as I had a migraine and my levels had dropped which is why they agreed to every 4 days in my most recent cycle. I'm not necessarily convinced that was a factor in it working but equally I can't see any reason not to ensure progesterone levels are topped up. It certainly can't hurt.

It's a balance I guess between trusting the specialists and fighting for what you want x

Just wanted to chip in on the progesterone front to say that the regular testing I had during my FET cycle highlighted that I wasn’t responding to lubion. I was tested quite a few times before transfer as my clinic wanted my levels above 100 (I think this is quite unusual though) and the only thing that worked for me was cyclogest x 2 and prontogest x 1. I agree that it’s a horrible injection - thankfully my partner does it most of the time - but my mind is at rest as progesterone levels kept dropping without it.

Same @MyEasterEggs @Gardenlady543 x2 Lubion and x2 cyclogest did nothing for my progesterone levels. They only went up on x2 cyclogest and x1 Prontogest. It’s painful sure and I have a very low pain threshold and cried after getting it but it got the levels up. I found the emotional pain of failed transfers worse. With the Prontogest I knew I was giving myself the best chance and that helped me fight through the pain. It’s very annoying your clinic won’t test more than once. I was tested every 3 days during the TWW - how quick will you get the medichecks results - is it same day?

Thanks everyone @Dochas12111 if I take it on a weekday I'll get the result the next day I hope, its the same for my clinic when they test. With you guys having this issue with pio should I increase and do every other day, I will be producing my own progesterone as well. I feel like the lubion is useless and expensive with this dosage. If this cycle doesn't work and I can withstand the pio then I may ask for it to be the main or only progesterone I take.

Hi everyone,

I have been following your thread for some time and hoped you might be able to give us some advice. You are all so strong and incredibly knowledgeable ❤️

I have recently suffered my 4th miscarriage 😞 we have been ttc for 5 years (infertility unexplained) and prior to our next FET we would like some further testing to try to figure out if there is a reason as to why we continue to miscarry. Our most recent pregnancy we got to 8 weeks and lost the other 3 all at around 6 weeks.

I've had lupus anticoagulant and thrombophilia screening which were normal and the cytogenetic testing of our 3rd miscarriage was also normal.

We will require to go private for these additional tests and want to ensure we are getting the correct and most important tests done first as it is all very expensive and we may struggle to get all the testing done.

Any advice or guidance would be greatly appreciated.

@Gardenlady543 so all my transfers except my DD (fresh) have been natural cycle transfers so in theory I was producing progesterone naturally too.

For balance I would say I just have 2 cyclogest with my DD and also had a migraine but they didn't test and that worked out fine. So maybe as I said they level out naturally if it works.

BUT in my mind the best protocol, if you can bear it, is cyclogest (varying amounts depending on what you need but at least 2 a day) plus prontogest daily. I couldn't cope with it (plus I had had a successful cycle without which affected my thinking) so took Lubion but it is much more expensive, less effective and you have to do more injections. PIO is usually the most effective way of absorbing progesterone. If you are self-administering I think you would have to go into your thigh.

Medichecks are great and quick as you know especially if you can go directly to TDL x

@Janefx40 I don't have enough pio to do daily, but what I could do is rather than take lubion every day once and pio every other day... what if I did the pio every other day (no lubion) and the day inbetween I did 2 lubion 12 hours apart. And then the cyclogest twice a day every day on top.

I think that there is no detrimental impact of extra progesterone so honestly if it was me I’d just up it to one PIO per day for this cycle and maybe forget about Lubion @Gardenlady543 You’ve got a new immune protocol, you’ve done LIT etc, if this transfer doesn’t work you’ll be thinking well maybe the immunes didn’t work or maybe it was the progesterone and you won’t know. Then it’s back to more trial and error and more transfers and another embryo gone. Yes it’s painful but if it works you won’t care about the pain. If it doesn’t it’s only 2 weeks of injections then you can stop. My consultant also was reluctant to give it to me from a pain perspective but I insisted. Given how effective it is I’d also care less about testing progesterone too so one less worry for the TWW.

@Gardenlady543 I'm not sure about changing daily like that. It might be better to be on a consistent dose and then test and see where you are up to.

I think if you want to do a different protocol but don't have enough meds, you would have to speak to your specialist again and explain your logic and ask about her logic for taking meds on alternating days. See if you can get a prescription for what you want or maybe her logic will make sense and you will feel more comfortable with what you have x

@Janefx40 I initially was on 1 cyclogest and 1 lubion, which seemed like a fair regime as both are supposed to be twice a day. This was in a fully medicated cycle. The day before a transfer the level was about 48 and my specialist wanted it over 50 so said to take an extra cyclogest. So I ended up on 2 x cyclogest and 1 x lubion.

Then I insisted I wanted pio. Gorgy recommended 2x cyclogest daily and pio every other day, but my specialist wanted to keep the lubion in incase I couldn't keep taking the pio so wanted pio on top, seems odd to take it at all really. It's hard to know what's best. :( she won't increase to daily at this point I don't think. So I may just alternate between and see how I go. She seems to think too high progesterone is a bad thing saying they don't know the long term consequences of it. Yeah I think that ship has sailed, I already have hypothyroidism, needed open abdominal surgery and had my breast biopsied twice because of Ivf.

@Gardenlady543 if Gorgy recommended the PIO on alternate days then I'd feel more reassure that it is ok. I don't know Gorgy but he is hardly someone to "underdose". CRP definitely felt I was taking more progesterone than needed when I was on 3 cyclogest and 3 Lubion.

I think 1 cyclogest is very low even if mixed with 1 Lubion. The evidence shows that taking a combination of different forms of progesterone is best but I don't think that means alternating but more one on top.

I think if you can't have a further discussion follow Gorgy's advice (and add Lubion if you want as it won't hurt) and then just test regularly and respond as you need to. X

@Gardenlady543

I’m pleased you’re doing a transfer soon. I think the new protocol for you sounds good.

With regards to progesterone this time, I had a positive experience. In 2019, when I did medicated FET transfer, I took a long time to respond to progesterone. However, this time when I did a mild stimulated FET cycle for mock, I responded really well. I took two 400mg cyclogest twice a day at 10am and 10pm, but took lubion at 8:30am and 8:30pm. On the 5th day my progesterone was tested as per my request and it was 113. This is considered optimal.

I think it really matters what protocol you’re on. I responded better on mild stimulated FET cycle which is a bit like the modified FET cycle in terms of not suppressing the ovulation and getting body to produce its own progesterone.

Everyone responds differently. It’s important to note that I’m 41 so a lot older than most people. The modified FET cycle as like the mild stimulated FET cycle I did I had a trigger of Gonasi 10000iu which worked well.

@IVF22

I just want to say I did swabs with Invivo and had to have a nutritionist interpret the results. Did you have a nutritionist? I have Anna Firth and she is good.

You have a specific protocol. I had high gardnerella levels in May-June, August-September but then it improved. I took metronidazole twice and also canesbalance for bv but did it for 2 weeks instead of 7 days. I also took a range of probiotics as recommended by my nutritionist. I take Inessa Advanced Biotic Complex for ibs, prebiotic Bio Me Prebio by Invivo and recently taking ProBio Women by Nature’s Plus as it contains a lot of lactobacillus crispatus. I also took kefir every day but made sure it was away from other probiotics. Also if having antifungals like cinnamon and turmeric, this needs to be an hour away from probiotics. As my sample recently picked up some signs of candida I am also taking Allicin by Designs for Health garlic tablets 1 a day but away from probiotics. They are very strong. I’m also alternating vaginal probiotics: physioflor lactobacillus crispatus with canesflor lactobacillus plantarum. Also as @Gardenlady543 said, apple cider vinegar with the mother is supposed to be good. I took it with warm water twice a day but had to stop as it exacerbated ibs, but if you’re fine, this would be good too.
I try to have a mixture of antifungals away from probiotics. I like coconut oil, cinnamon and turmeric as these are all good antifungals.

@Gardenlady543 Are you going to keep using the vaginal probiotics when taking progesterone? Do you find the physioflor do not dissolve very well? I’m experiencing this.

@Gardenlady543 based on what you’ve shared I’d be comfortable with:

2 x cyclogest plus 1 x prontogest one day
2 x cyclogest plus 2 x lubion next day

Then alternate.

I had to self administer today and managed it in my backside. Bled a little but actually painless! So not all days are bad. I tried it in my thighs and couldn’t walk for three days. It was like I had DOMS!

Hi @Piippa welcome, sorry your post got lost amongst my progesterone issue! Also sorry to hear about what you're going through. I think Dr Shehata is who most people in a similar position to you have seen. Could you book in with them so they can advise on what tests might be useful.

Thanks to all for the progesterone advice. It's been good to see what regime people have been on especially doing modified natural or similar type cycles as this is the first time I've done one like this.

@2021ivfagain I had a bit of a microbiome freak out over the weekend as my pH has consistently been 4.5 for a year and suddenly right before I'm due the FET cycle starting it was 5, so I'm keeping an eye on it at the moment. I'm going to do daily vaginal probiotics in the cycle. I use cyclogest rectally, think I saw this increases the blood progesterone vs vaginal.

Thanks @MyEasterEggs I think I'll probably go with this, with the amount of meds I've got this seems like the best way to try and get a stable level. I know a lot of USA people self administer, I bought an autoinjector, I read it's best to inject into the glut for absorption vs thigh. People day to use Emla first so I've got that, they say put the vial in your bra to warm it up and they say massage after, people use a massage gun which seems a bit brutal, I have a neck massager with heated rotating balls that I'll try. I hear it's fine at first but the more you do it the worse it gets :( but it's important for me to try this.

Had a bit of a drama on Friday, got the prescription for letrozole and a gonsai 5000 trigger, found 1 Asda with letrozole in stock but they can't order gonsai so have been scrambling. Clinic have sent an order for stork for this who have it in stock, I don't need it just yet anyway.

@Gardenlady543 yes, my arse cheeks are a mess to be frank. It’s sometimes hard to find a injectable spot between the lumps and bruises! The area you can inject is actually quite small but, all going well, I’ve only got another 8 injections to go and we’ve managed thus far!

With the thigh, it was after doing those for two days that my symptoms vanished, so that makes sense.

@MyEasterEggs so you're saying, do what I can to increase my bum size over the next couple of weeks 😂

Oh ladies I’ve only just found the new thread so I’m completely out of date with everyone’s posts so I need to have a read! I work in retail so I’m just in the midst of Black Friday and sale and Xmas prep along with filling my IVF consent forms etc and figuring out our package.

My last post would of been around the end of oct when I went for my AMH and follicle count scan. They’ve stayed the exact same as January so 8.4 AMH and 22 follicle count. Im 36. Not sure why my AMH isn’t higher with that amount of follicles which is making me think something is wrong.

As you all know I’ve had 2 natural pregnancies and a second trimester MC at 19 weeks so IVF has been very hard to get my head around but we’ve been TTC now for a further 20 months and suffering with secondary infertility and unexplained so far. I started with brown spotting for a whole week before my period since last July (month of covid vaccine) however been on cyclogest post ovulation for the last 5 months and it’s stopped the spotting but no pregnancy.

The nurse at my scan said she identified signs on endo and adeno. I have no symptoms of these. My Dr called me 4 days later and said he isn’t concerned about my scan and that he completed my hyterscopy only a few months ago that he was happy with. But I can’t help but panic and worry that I should maybe be on a down reg!!

Im due to start on my January period so maybe around the 10th ish! I’ve no idea what to expect etc. I’m telling my work tomorrow which I’m worrying about. I also wondered when do they scan and measure your lining for your transfer as I remember you all saying the progesterone compacts it and mine was only 6.5mm 5 days post ovulation. Do they measure it before you start the prog?

Also I’ve mentioned before about the spotting and then the strange texture of my periods since my miscarriage. I had 3/4 normal cycles after my Mc then The brown spotting started but right from the get go after my Mc my periods were slippery and basically like EWCM but red and still are! I can’t help but worry and panic something is wrong and we are about to commit to such a big financial and emotional rollercoaster. I try to talk myself out of it daily but after carrying our baby girl for 19 weeks I thought I was giving my son a sibling.

much love to everyone.

@Loz2467 I would just ignore the AMH, if you have a good AFC then this is a better marker of egg reserve and response in IVF. My AMH has varied a lot by the way but my AFC has stayed pretty stable although gradually reduced over the last 2 years from 34 to 20, AMH fluctuations having no pattern with the AFC in my case. Lining is measured before ovulation, once progesterone is there the lining changes from trilaminar and is more difficult to measure and they expect it to change (in many cases compact). You're in the same situation as me mine always seems to be 5-6mm post ovulation at around transfer or biopsy time. What's the plan for January are you going to do an embryo creation cycle only or do a fresh transfer during the cycle?

@Loz2467 Are you low in vitamin D? When I was 37, I had my amh tested via nhs but they never checked my follicle count and I was very low on vitamin d. A year later when I was 38 I went to my private clinic and had been taking more vitamin d and amh had nearly doubled and follicle count matched the amh.

@Gardenlady543 in some ways I’m secretly relieved that I gained a bit of weight this year. Every cloud 😂

@Gardenlady543 Thank you for your help. I was just worrying I have Inflamation form endo or adeno and that’s why my AMH is supressed or I have empty follicles. I literally have no symptoms apart from the spotting before my period which I’ve never had in my life until last summer. I refuse to believe it’s stress and worried there is a stone unturned which might affect my IVF. I’m going straight Into a fresh cycle if eveything goes to plan. I just worry with the change in my periods etc and not getting pregnancy naturally again.

thanks @2021ivfagain i did read about this but I’m no deficient in vitamin D and I’ve been taking it since January and literally no change in my AMH - not by a fraction. So strange.

Maybe if 1/2 transfers fail I wait for a lap but I’ve been on the waiting list a year. I really didn’t think I have endo but I can’t figure out the brown spotting. Obviously it’s good the cyclogest stops it but I’m not getting to the root cause of it.