* Author Topic: Low AMH/High FSH Cycle Buddies - Part 7  (Read 30403 times)

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Offline odashwood

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Low AMH/High FSH Cycle Buddies - Part 7
« Reply #190 on: 27/05/19, 13:57 »
Hello dear ladies! I missed you)

My update is not pretty good((. My scan showed not a very good result, unfortunately. The great news is that I am really pregnant!!! But the bad one is There is a huge risk of losing my LO((((. I should probably go to the hospital for a week or so just to do some tests and bu under the doctors care. Don't want to leave my hubby at home, he is very worried about that too.

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    Offline klik

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    Low AMH/High FSH Cycle Buddies - Part 7
    « Reply #191 on: 27/05/19, 20:16 »
    Helen: sorry I disappeared for so long... I really rate Mr Saridogan, and so does Shady, so part of me is really glad you went to him. If I caught you in time I would have suggested Mr Trew instead as he could refer you to have a hysterosalpingogram as opposed to an aquascan. The HSG is somewhat better at catching adhesions at the margins, apparently... But now two pairs of eyes have seen your uterus in detail and there was nothing there to indicate any issues that would keep causing these m/cs. Not having an answer is really tough. I'm sorry you're in this state... Maybe the aquascan will tell you something. Otherwise, gosh, just try again? Was that Mr Saridogan's advice? I wish you strength... Big hug...

    odashwood: Gosh, what a state to be in, knowing you are pregnant but not how likely it is you will stay so... Would the hospital consider taking you as an inpatient? That would be unusual for so early a pregnancy... Why do they think it's likely you'll lose the embryo? Is it measuring small for your gestational age? Sometimes they do recover. Best of luck...

    CatLady: I really hope your tandem cycle surprises everyone and yields a good number of your own gorgeous embryos! But it's very clever how you've got that covered by having a donor as well. Best of luck with AF timing!

    Pickle, have you started on your protocol yet??? Fingers crossed this is the one for you!

    Shady, yes, some 5.5 weeks to go! I'm so chuffed you're at 14 weeks now, feeling better, and with really promising test results! I so so so hope this luck holds out!!! I did my hospital's prenatal class (sign up asap to yours as they fill up fast, apparently!) and also the NCT one. NCT was indicated mostly as a way to meet other prospective parents who are giving birth roughly at the same time. That way you can text another mum at 3am when you're breastfeeding and losing it, and get someone who really understands what you're going through! I was really apprehensive that they'd be really negative on medical pain relief or c-section or whatever, and the teacher did indeed have her biases, but it wasn't nearly as bad as I thought. For instance, when someone asked how best to avoid instrumental intervention, she pointed out that you couldn't just keep baby in there indefinitely--baby has to come out, and sometimes there's no other way. She also talked about c-sections pretty matter-of-factly, which was good... But she said one in eight epidurals do not work at all, and an anaesthetist prospective mum later told us that figure is actually one in 1000. Pretty different, huh? And there were other things like that, where the evidence was doubtful at best. Still, there was plenty of useful information, plus the other prospective parents do seem really nice...

    Babyhopeful: I'm feeling ok, thanks, but yeah, I get tired easily. Also I need to pee all the time! I'm so so so sorry about your dad--I really hope he gets through it ok, without too much harsh treatment... and thank goodness your lump turned out to be a cyst! What a relief!!! Be kind to yourself, and when you do get back up on the IVF horse, best of luck!

    AFM: not much to report, really... on the final countdown now. Idly wondering what giving birth will be like, but I won't know til I get there, and I hope he stays in me for another 3 weeks at least!

    Offline CatLadyTTC1

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    Low AMH/High FSH Cycle Buddies - Part 7
    « Reply #192 on: 28/05/19, 17:40 »
    Hi everyone xx

    Im so sorry to read odashwood, do you have an update? How are your HCG numbers?

    Thanks for your words klik

    Nothing new from me, waiting AF, have symptoms and she should be here very soon! Still hoping for Saturday that she appears due to a wedding or we will be on a plane. Oops. Feels like our life is on hold whilst waiting for AF. as we all know, this is one big waiting game 🤣

    Hope everyone is ok xx

    Offline odashwood

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    Low AMH/High FSH Cycle Buddies - Part 7
    « Reply #193 on: 29/05/19, 09:55 »
    They say that it is something with measuring, you are right, klik. They want me to stay at the hospital for a couple of days make a drip and see what the reaction will be. Hcg was 126 for the first time, 189 for the second one.

    Offline chini

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    Low AMH/High FSH Cycle Buddies - Part 7
    « Reply #194 on: 29/05/19, 22:37 »
    Hello everybody! I'm sorry to jump in at the middle of your conversation, but I've missed you! I've been following your news whenever I can, but I've had such a rubbish spring that I haven't really felt like updating any of my news... until now that is, as we're finally starting treatment again, yay! I'm such a geek that I even took notes of the main things I wanted to reply to from the old thread, but I lost the paper I had written them on, so I won't be able to go that far back... probably for the best haha.

    First of all, congratulations for all the pregnancies, I'm so happy for you!!! And I' definitely in for a meet-up if we're having one!

    Odashwood - I'm so sorry you're having to go through this - I really hope you get the care you need and it turns out to be just a scare!

    Briss - great news about the house in Wimbledon, congratulations! Have you moved house already? You've had the most incredibly stressful spring, you're an unbelievable fighter to have gone through all that! I'm sending you a massive hug! I quit my job at the beginning of March and was looking the whole of March and most of April, and I found that recruitment agencies were really helpful in finding a new job - is that something you could look into in your field? Also, you mentioned that your DH managed to improve his parameters by staying off beer for 3 months - may I ask how much? We also have MF and I haven't really managed DP to stay off the booze completely, even though he's cut down considerably.

    Pickle - if you're wondering whether counselling helps, I have to say I think I might have totally lost it this spring without the Lister's free counselling service. Not all councillors are good and you don't always 'click' with everyone - in that case don't be afraid to contact another one - it's a bit like dating, you need to find one that you get along with, and you do feel it immediately if you don't - so then you just have to try someone else (you wouldn't keep dating someone who's a definite no-no either, right?... When do you start cycling again?

    Hopeful81 - welcome back from NZ! Sound like you had a great year, and I hope getting back hasn't been too much of a shock!

    Klik - I'm so massively incredibly happy for you, congratulations!! It's just so heartwarming and awesome to know that you'll be having your baby soon, it gives me loads of much needed hope... I hope these last weeks will go really smoothly for you! Oh, I also wanted to ask how much Norethisterone did you take after ovulation and how long did you take it for before starting the Crinone and Cyclogest?

    ShadyWheat - such excellent news, congratulations!! I'm just over the moon for you! Please keep us updated. Just regarding the nightmares you mentioned - have you tried the counselling at Lister? I've found it to be really good quality - if you pm me I can recommend the councillor I've been seeing, she's very good. I also wanted to ask you about the DHEA, how soon (and how) did you notice the drop in egg quality and what were your test results before you started using it? Regarding Ubiquinol I take 200mg per day - the brand is Doctor's best and the product name Ubiquinol with kaneka, and I order it from Pure Formulas - it's the one recommended by Mel Brown:
    https://www.pureformulas.com/best-ubiquinol-with-kanekas-qh-200-mg-120-softgles-by-doctors-best.html

    queenie - I'm really sorry to hear about your sister! Has she already decided what she's going to do? Also thanks for coming up with the idea of a meet-up, I'm totally in!

    KatKat - I'm so sorry for the bfn! How are you? There was something you mentioned about vitamin E and L-arginine for implantation - could I ask what kind of dosage you recommend? Also, have you done the uterine NK cells tests with Drs Quenby and Brosens? That might be something to look into. I'm sending you a big hug!

    Helen - I'm heartbroken for you! How are you doing? If you're still looking for someone who will be able to do a good aquascan, I'd recommend Bill Smith at Clinical Diagnostics. I did a normal scan with him after he was recommended to me and he was amazing - I actually had the aquascan booked twice but in the end had to cancel it twice and decided not to do it as I feel at the moment I have enough information as it is. Remember it should ideally be done during the luteal phase of a natural period, as that way they'll get the best imaging. Also, have you had the whole thyroid panel i.e. TSH, free T4, free T3, and two antibodies tested? They can do it at the PathLab for quite a decent price and I'd definitely recommend it if you haven't had it done. Furthermore, did they not explain to you what the "strawberry-like pattern/area" was they detected in your scan? I feel really bad about having to say this, but that's usually how the imaging of adenomyosis is described, so you might want to have a can with a pro, like Bill Smith and confirm it.

    Babyhopeful - I'm really sorry for the bfn and your dad's cancer! It's just so unfair... How are you doing? And what kind of cancer is it? I started my fertility journey shortly after I heard about my dad's diagnosis - it's not easy to have both to think about at the same time. However what a relief that your lump was only a cyst! I also noticed we're almost the same age as I'll be turning 40 in September! I totally feel you about how that feels like a massive scary threshold... In addition, you were asking about ubiquinol - please see my reply to ShadyW.

    MSJ - I'm glad the endo surgery went well! Regarding the adenomyosis, I just want to say there's A LOT you can do. Sadly there's a serious lack of information among healthcare professionals, and it's a very poorly understood disease even among gynaecologists, but don't believe them if they try to tell you there's nothing to be done! I've read thousands of pages of research papers about it and spent hundreds of hours on peer support groups since I was diagnosed last October, and I've found there are at least these measures which have been proven to help:
    - the endometriosis diet (the main things are: zero gluten, zero dairy, zero sugar - you can find more detailed info online)
    - NAC (i.e. N-acetylcysteine): this is the strongest supplement and I wish I'd started this straight away when I read about it! The research which found significant reduction in lesion size after using it followed the protocol of 600 mg 3 times per day for 3 days, then 4 days break
    - Pycnogenol (i.e. pine bark extract): the research that found this to be effective used 60mg per day - I take the Viridian one which also has grape seed extract (basically the same compound but from a different source)
    - Melatonin: the amount used in the successful study was 10mg per day for 3 months, just before going to bed, also don't take it for more than 3 months without taking a break as it's not good for your body to get too used to it - start with a lower dose then work your way up after about a week or so, and note that not everyone tolerates a dose that high (e.g. to me it caused a horrible hangover-like effect so I had to stay on 5mg which I think is still better than nothing)
    Some people have also had relief from propolis extract and lycopene supplements (or including a lot of tomato puree in their cooking). In addition, supplements that normalise estrogen/progesterone balance (DIM, berberine, B vitamins, zinc) and enzymes that "eat up" the old (fibrolysed? I can't remember the exact term) tissue such as nattokinase, serrapeptase and wobenzym N, can be very useful. Also remember that adeno and endo are both inflammatory, autoimmune conditions that are linked to an out of whack coagulation process taking place in the uterus, so anything that relieves inflammation and/or thins the blood (think turmeric, ginger, good quality fish oil, propolis, lycopene etc.) and alleviates autoimmune conditions (think medicinal mushrooms like mesima or EGCG extract from green tea) will be helpful. And avoiding stress as much as you can, which is why I think changing jobs sounds like a very good idea.

    CatLady - your experience at your previous clinic sounds really bad, and I'm super happy for you that it's all going much more smoothly now! Good luck with the tandem cycle!

    Hi to anyone else I've missed - I hope you're all well! x


    AFM, after I had bled for 70 days on the BCP and was put on Norethisterone instead as preparation for our cycle in January, we got our first delay as our Dr at the Lister wanted to wait for the results of an MRI they did on the NHS in January. It took an incredible amount of fighting to get the results from that, and when we finally got them, it turned out that the report was really superficial and didn't really add to anything we already knew. I tied to arrange an aquascan with Bill Smith at Clinical Diagnostics to get my uterine anatomy solved once and for all, but he said I'd have to come off the Norethisterone for him to be able to see the anatomy properly so I had to delay it.

    Then I found out I had elevated thyroid antibodies, so I wanted to get that checked before starting treatment... Tried to get referred to Professor Conway at UCLH through my GP but as that failed I went to see him privately. Basically he said it's nothing to be worried about (which I don't fully believe) - but as by that point I realised I had three autoimmune conditions (adenomyosis, Raynaud's syndrome and now the thyroid antibodies) I started to suspect I should look more closely into what's going on with my immune system...

    At that point we found out that DP's mum had cancer and he got the flu so badly that he was in bed shaking with a sky high temperature for days (out of shock, I think now in hindsight), so we were told we had to delay treatment until his sperm would recover, which takes about 70-90 days... At that point I had been on the Norethisterone for over 2 months and started having all sorts of nasty side effects, so came off it and decided to make the most of the delay, so went to see Dr Gorgy.

    I had most of the Chicago tests done and it turns out I have elevated NK cells and TNF-alpha, which doesn't really astonish me at all taking into account that due to the adenomyosis I live with a constant inflammation in my body. So I've now taken the first dose of Humira and am due the second one on Friday next week, then will retest the TH1:TH2 cytokine ratio (i.e. TNF-alpha:IL-10). If the results are ok I'll start treatment with down regulation at the end of June. I've already started my 4 week-course of Norethisterone again as preparation, and had a dummy embryo transfer in case we won't have enough to freeze (I don't think I'll be able to freeze anything if we only get one embryo like last time). Plan A is to do embryo banking due to the state of my uterus, but I want to be prepared to swap to a fresh transfer in case that's necessary.

    It'll soon be 3 years since we started ttc, and two and a half since we started fertility treatments. I'll be 40 in September and I can't believe we've only had just one round of treatment so far!!! During this last year alone we could have done at least 6, maybe even more rounds, and it's been so difficult to accept that we weren't able to cycle at all due to all these delays... At least if we would have been able to cycle but failed, I would know more about how my body responds to certain types of treatment etc. - now I still have only that one cycle which was an absolute shambles as my only reference point. It just feels so unfair, but taken all that into account you can't believe how happy I am that we'll be finally able to cycle again in July!

    Sorry for the long post - I'm just so very happy to be back here again.

    Offline CatLadyTTC1

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    « Reply #195 on: 30/05/19, 09:44 »
    Hiya Chini, welcome back x what an experienced woman you are and how lovely of you to share such valuable information. Thank you.

    Thank you for your kind words, i really want to get going in Cyprus now. Weíre still waiting for AF, weíve passed the threshold for the family wedding so thatís the main thing. Albeit ill be a bloated mess at the wedding but small sacrifices and all that. I must stop obsessing over flights though. Keep checking the app all the time to make sure seats are available haha.

    Hope everyone else is well xx

    Offline Hopeful_81

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    Low AMH/High FSH Cycle Buddies - Part 7
    « Reply #196 on: 31/05/19, 21:23 »
    Hi ladies - sorry I've not been keeping up on here, will attempt to catch up over the weekend!

    In the meantime, I need some help... Had hormones re-tested last week and just got results today.  I think they're probably not great but only had a v quick chat with dr who said I might benefit from taking DHEA if we were going to do any further fresh cycles.  I'm having NK cell biopsy done this month so will arrange a more thorough appointment to discuss next steps in a month or so once we have all results.  We will likely try a transfer of one of our frosties next - we are so unbelievably grateful to have them, especially given the most recent results...

    So, my FSH came back as 18.9 and oestradiol less than 60. From what I can find on the internet, that's not great but just wondered if anyone could shed any light?  I have a family history of fairly early menopause (I'm 38) so I'm worried I'm going the same way... I apparently also have v low testosterone at 0.1 nmol/L and high SHBG at 156 nmol/L.  My dr said the SHBG level is indicative of too much exercise?!  But I'm not doing any cardio or weights, just resistance/body weight stuff so I don't understand that.  I'm not giving that up as I'll be miserable and it's not good for mental health.

    Not knowing what this all means is making me feel rather anxious!  Google is NOT helping so thought I'd ask on here as know you ladies are extremely knowledgeable xx

    Offline CatLadyTTC1

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    « Reply #197 on: 1/06/19, 17:54 »
    Hi hopeful, sorry I donít know about the levels. I tried google as well and it sent me up down and roundabout! Was awful. The ladies here have been amazing though.

    Just an update from me, AF has arrived and therefore the flights, hotel (kinda) and scans have been booked. Our first scan is Friday next week and then Sunday, trigger Tuesday, Fly Wednesday, EC Thursday, transfer (massive fingers crossed) on the Tuesday fly home the Friday with our little embies hopefully snuggling down x

    Happy to keep people updated on here if youíd like or Iíll be updating on cycle buddies and/or the dogus thread. :-)

    Offline Helenbeau

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    « Reply #198 on: 2/06/19, 10:50 »
    Hi Chini, really good to hear from you. Sound like youíve been busy looking after yourself. Iím happy you have some answers and new vigour to start again. Where will you cycle? The Lister?
    I had Chicago tests at serum (donít think they are as good as Dr Gorgy ones but much cheaper ) the Tfnaís were below normal which apparently is fine as opposed to raised and NK cells normal). However I have had endo found through laparoscopy and endometriomas removed in the past. So I think itís save to say I have endo but no idea how bad it is now. But I had a scan last week to check everything had come away after the MC and they found a cyst on ovary which looks like an endometrioma. Iím a bit concerned as it wasnít there before pregnancy but it is now. No idea what will happen with it but Iíll have to monitor it and scan again when I get my period to see if itís still there. Anyway I was reading your advice about controlling endo and I think thereís no harm in trying a few of your tips, you sound like youíve done your research. Can I ask about the NAC...do you keep repeating the protocol 3 days on then 4 days off? How long for? I just ordered some and the pine bark. I have some melatonin as I was taking it for a few months before my last OE cycle but I stopped in January. Iíll try cut out gluten, wheat and dairy (I only eat goats diary anyway, is that ok?) and sugar. I do find it hard not to eat a cake or two though.
    The strawberry looking patches he mentioned are normal, no mention of adeno 🤷🏻‍♀️ I find it overwhelming all the different advice and opinions. Iím having an aquascan with Dr Saridoganís colleague so will probably stick to that plan but had I known about your guy I may have gone. How much is he?
    Sorry for all the questions xxx

    Catlady...good luck for this cycle, fingers crossed. X

    Hopeful, sorry I canít help much. Iíve had high numbers. I know they fluctuate. I wouldnít think about it too much tbh. The numbers are probably normal in terms of other ladies on this board. Where are you having your biopsy?

    Odashwood, hope youíre ok. X

    Hi everyone else xxx


    Offline miamiamo

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    « Reply #199 on: 2/06/19, 13:12 »
    catlady - good luck xx