Anyone still there??
Just wanted to report some great news:
Anyone still there??
Just wanted to report some great news:
I’m so glad I found this forum! I am panhypopit from a tumor and have slightly elevated prolactin. My husband and I have our first fertility appointment one week from tomorrow:cross:. We’ll see what the course of action is! I’m just worried I won’t be able to handle any heart breaks…
Hi All, I also have pan-hypo pit. We are in the midst of taking injections. To give a background I was diagnosed at age 2 drs couldn’t find a reason. I took Gh shots till 15.I am now on prednisone ,Synthroid. My Re has me on 75 iu of Menapur daily. This is the 3rd day of injections we go back to Dr. on Friday to do ultrasound. The plan is to do an IUI if it looks good. This is our first cycle but would love to speak to women who have been through this.
WELCOME! I haven’t been there, done that, but wanted to send you good baby vibes!
I, too, am so glad to have found this thread. I am grateful for the information you’ve all shared. Some of it I will be bringing with me to my next RE appointment.
Hopefully I can add some value here as DH and I walk through this fertility journey. We currently have two frozen embryos that are at the blastocyst stage. I will share our progress in a minute.
First, a little about me:
I am 32 years old and was diagnosed with congenital pan-hypo pit from an atrophied anterior pituitary lobe when I was less than a year old. My mom noticed I wasn’t growing out of my baby clothes like my brother and sister had. I have taken GH and Synthroid my entire life from that point on, save for one 3-month stretch when I was 27 where I had to go off GH and do a stim test to prove to my insurance that I needed the medicine. I could write a whole other post on that, but basically I make zero GH on my own, as opposed to some hypo-pit folks who might make a little. I began birth control pills at 15 to induce puberty and have been on them for estrogen and progesterone HRT ever since. I have periods, but they are just withdrawal breakthrough bleeding and “fake”. So, to my knowledge, my body has never actually ovulated or built a lining before now.
Now, onto the fertility part:
DH and I began our journey with the RE back in fall of 2017 and decided to pursue IUI. We did all of the basic testing stuff, they did a hysterosalpingogram (HSG) on me to make sure everything looked good, and then we decided to start the IUI cycle in February 2018 (held off only to get through the holidays and a job change).
Here’s the therapy we used for IUI ovulation induction:
I should point out here that I was also continuing to take my Synthroid and GH as I normally would. For me, those doses are: 75mcg of Levothyroxine, and 1.7mg (you read that right) of Nutropin. Again, I make zero GH on my own.
My ovaries were slow to respond on the150 IU dose of Menopur, and I only had 3 or so very small follicles that weren’t really viable. We increased the dose to 225 IU to get things rolling. At my next check I had something like 8 really big follicles (which I was thrilled about!) But because of this, it was unsafe to continuity IUI. After talking with the doc we decided to convert to IVF. So we stepped up the Meopur one last time to go for as many large follicles as possible. In the end, we ended up with 6 eggs retrieved, 2 of which made it to the blastocyst stage for freezing.
That whole process was very stressful for me. I had a few other things on my plate at the time that needed to calm down before I felt I could tackle an FET cycle. So, we pushed pause until October and I went back on my birth control HRT in the meantime.
Here we are now, near the end of November, and we’ve gone through one canceled cycle that began in October. The reason for the cancellation was because my uterine lining wasn’t able to get thick enough. There also was some fluid in there, which my RE thinks may be due to the extra estrogen.
Here’s the therapy I was on during this 1st canceled FET cycle:
As you can see, there was a giant increase in estrogen therapy for those last 9 days. My uterine lining was around 3.5mm and and we were trying to hurry it up to 8mm. In the end, it still looked too thin, and they couldn’t get an accurate measurement because fluid was now present. I asked if we could aspirate the fluid and keep going on the estrogen, but they said it would become unsafe to go that long solely on estrogen. They canceled the cycle and I am currently taking 10 days of 10mg Medroxyprogesterone pills to have a period.
So, that’s we’re we sit. I am a bag of mixed emotions right now. Disappointment over a canceled cycle… questioning if I’m just too hard of a case for my RE… excited to think they are formulating a new plan to try on the next cycle… trying to have faith… trying to not stress out but even that is making me stressed… and then add on to that a layer of hormones my body is not used to… whew! It’s a lot.
Hope this post helps someone, someday. It has been therapeutic for me to just write it down somewhere! I will return with updates as we go.
Hi, honey, I’m sorry you’re struggling. Firstly, it does really help to have things written down somewhere. Every fertility journey is so stressing and a real rollercoaster. And it’s so important to have a place where you can be understood by the others like you in your particular case and seek for some wise piece of advice. Also thanks for the time taken to share your story, I hope someone will find it extremelly helpful. I’m not in your shoes, but I’m not new to the toughness of this nightmare. Here’s some of my story. I was 40 yrs young when we came into terms with the issues. Dh - 42. Got married in 2013, ttc since 2014. The issue was in me. Dx - pcos, blocked fallopian tubes. IVF 1&2 2015 -failed. Took a long break from treatments to recover emotionally. Dr felt it would be helpful to pass PGD testing as I faced mc, Plus the dr suspected me to be the carrier of Wilson disease - a very rare treatable disorder. Thankfully it was not proved. So then it went like If plan A fails - there are 25 other letters in the alphabet. So we went on with IVF, this time using donor egg. We passed treatments overseas at bio texcom, ukraine. Got success from shot#2 resulting in a beautiful baby girl. I know this path’s different for everyone. The point is that if you move on - you’ll definitely succeed sooner or later, but it will happen. It would be nice to chat some day? Waiting forward the updates. Take care
Hi there. I was searching for hypopituitary ladies who are struggling with ivf, and found this thread. The previous posters are from years ago, but noticed you just wrote in, so hopefully we can chat a little about our situations.
I’m sorry to hear about your struggles and surprised when I read our situations are pretty similar right now. While I don’t have congenital hypopit (mine is from a tumor from when I was 16), I’ve been having lining issues and fluid build up in my uterus. I did two egg retrievals and was lucky to get 6 PGS normal embryos that are frozen now. My first attempt at a transfer ended in a cancelled cycle when my lining did not grow much, if at all, and I had fluid in my uterus. My second transfer cycle was just cancelled today for the same reasons.
This is what I took for my second transfer cycle:
2mg estradiol pill orally 2x day
2mg estradiol vaginally 1x day
.1mg patch every other day — switched to
.1mL estrogen injection every other day for the past 5 days
plus - acupuncture, l’arginine, 1000u of vitamin E.
My lining got to just under 4mm and I had fluid in my uterus which also made it difficult to measure. Re: the fluid, I was told it typically dries up when I start progesterone, but we haven’t gotten to test that theory since I haven’t gotten to that point in either cycle.
My RE decided to cancel it today, give me Provera for a withdrawal bleed, and start fresh at the end of Dec. He wants me to start with the estrogen injection, and add a baby aspirin, plus the supplements I was taking. I’m feeling pessimistic about that plan.
I’m concerned that my uterus just isn’t responding to the estrogen. My levels are super high, like 2,000 give or take, and my lining just is no where close to where it should be.
Have you had any luck with your lining?
Thanks for listening. Hope your next transfer cycle is going better and looking forward to chatting!
I wasn’t sure I would hear anything after posting my story, since the thread was so old. So, thank you for writing and sharing your story. Just curious, where do you live? I am in Dallas, Texas.
It’s really nice to have someone else out there who is currently going through such a similar experience. I’m sorry for your struggles as well. Hopefully we can continue to share notes as we go along.
Currently, I’m waiting for my withdrawal bleed after just finishing the 10 days of Provera yesterday. I am not sure what my RE’s exact plan is for the next round, but I am going to share a few things with him, including your latest protocol.
I have filled these past 10 days with incessant research, and have come across a few medical studies that are interesting regarding thin endometrium. Below are the article names, links (which I am having to break in order to trick the system, because this post is limiting me to only displaying two links), and snippets of text that I have found to be the most insightful.
Current Strategies to Manage a Thin Endometrium
www. researchgate. net/publication/301222232_Current_strategies_to_manage_a_thin_endometrium
Extended estrogen administration was described as to overcome the problem of thin endometrium. Recently, Liu et al conducted a study trying to adjust estrogen administration according to estradiol serum levels, starting with 18 mg/day of estrogen Valerate and keeping the estradiol levels between 600-5,000 pg/ml, 8mm endometrial thickness was reached in 92.1%; the results of this group were comparable with the control group. The authors concluded that it is the duration of estrogen administration and not the serum concentration of estradiol that is critical to the success of the treatment.
Demir, et al. administered 4 mg estradiol hemihydratem for patients with thin endometrium, starting on triggering day in intracytoplasmic sperm injection cycles (ICSI), however no benefit was demonstrated.
Shen, et al. published a case report describing treatment of a thin endometrium on a fresh IVF cycle by administering a high dose (16 mg/day) of estrogen Valerate starting on day 3 and resulting in pregnancy.
A comparison between oral and vaginal administration of estrogen in FET cycles of blastocyst stage embryos for patients with an inadequate endometrial thickness, showed a longer duration of administration of estrogen and a higher dose with the vaginal route but a higher pregnancy rate.
Benefit of extended estrogen administration for women with thin endometrium in frozen-thawed in-vitro fertilization programs.
www. ncbi.nlm.nih. gov/pubmed/16983519
PURPOSE:To evaluate the effect of extended estrogen administration for women with thin endometrium in frozen-thawed in-vitro fertilization (IVF) programs.
METHODS:Thirty-six women undergoing IVF program had thin endometrium (<8 mm). Among them, 23 received fresh embryo transfer (control group), but 13 canceled embryo transfer and underwent frozen-thawed embryo transfer in the subsequent cycle after extended administration of exogenous estrogen (study group).
RESULTS: In the study group, the mean endometrial thickness increased significantly from 6.7 mm in controlled ovarian hyperstimulation cycles to 8.6 mm after an extended estrogen therapy for 14 to 82 days (P=0.031). Their pregnancy rate was significantly higher than that in the control group (38.5% vs. 4.3%, P=0.016). Among 5 women achieving pregnancies in the study group, one was complicated with placenta accreta, and the other 4 had uneventful pregnancies.
CONCLUSIONS: Extended estrogen administration followed by frozen-thawed IVF programs is beneficial for women with thin endometrium. However, the risk of abnormal placentation and peripartal complication should be kept in mind.
New horizon on successful management for a woman with repeated implantation failure due to unresponsive thin endometrium: use of extended estrogen supplementation.
www. ncbi.nlm.nih. gov/pubmed/23379608
An adequate thickness and pattern of the pre‐ovulatory endometrium is considered one of the essential requirements for a successful pregnancy. Although various methods for increasing endometrial thickness have been proposed, the real value of these interventions remains controversial. Here, we present a case of successful administration of extended estrogen supplementation before conventional controlled ovarian hyperstimulation in a woman who had experienced repeated implantation failure because of an unresponsive thin endometrium. After the estrogen supplement was administrated for an extended period, the in vitro fertilization/embryo transfer in this patient led to an uneventful twin pregnancy and delivery at term.
The endometrium in assisted reproductive technology: How thin is thin?
Extended estrogen support:
Endometrial thickness can be improved by extending the estrogen administration for 14–82 days, in HRT-FET cycles.
Human chorionic gonadotropin priming in the follicular phase:
150iu HCG given daily for 7 days starting from day 8 to 9 of estrogen therapy has been suggested by Papanikolaou et al. to improve Eth. Their rationale was that HCG administration might have a positive effect on the endometrial HCG/LH receptors. Their study suggests that apart from improvement in Eth of approximately 20% there may be an improvement in ER.
Drugs that increase endometrial blood flow have been administered individually or in combination to improve Eth. Pentoxyfilline 800 mg/day and tocopherol 1000 mg/day given over several months, sildenafil 100 mg/day given as vaginal passary, l-arginine 6 g/day, and low dose aspirin 75 mg/day. None of these therapies have met with much success.
The burning question regarding treatment of thin refractory endometrium remains unanswered. A number of treatments have been tried but none validated so far. IU insertion G-CSF is currently the most popular treatment, but results are not consistent between various studies. Sildenafil, tocopherol, aspirin, and L-arginine have been used to improve endometrial vascularity. Extended estrogen therapy has also been attempted to improve Eth. Use of GnRH analog before HRT is not recommended as it decreases endometrial vascularity resulting in poor endometrial growth. Among these treatments, the one that we have personally found effective is the use of repeated HRT cycles before FET to stimulate regeneration of the endometrium . Endometrial regeneration is seen to occur more frequently in women who have had a prior pregnancy. Thin endometrium resulting from an inflammatory process may improve a little but generally remain unresponsive. The use of ERA to define the window of ER before ET is helpful. Women with thin endometrium may be at risk of abnormal placentation after achieving pregnancy. The possibility of early miscarriage, placenta accreta, and postpartum hemorrhage should be discussed.
Usefulness of the Endometrial Receptivity Array (ERA) Test
Finally, two of these blastocysts were transferred after estrogen therapy and 5 days of progesterone administration when a 3.5mm thick endometrium and 879pg/ml of serum estradiol concentration were achieved. In all these procedures, the endometrial pattern remained dense and echo-genie, and never showed a triple layer pattern. In this third attempt, a single intrauterine pregnancy was detected resulting in the live birth of a healthy girl by the vaginal route at 38 weeks gestation. No pregnancy complications happened.
The accuracy of the ERA test has been described superior to endometrial histology and the results seem to be reproducible 29-40 months after the first test. The ERA may be useful for determining the best timing for embryo transfer, predicting when implantation is feasible in a particular patient including those with chronic unresponsive atrophic endometrium. Hence, maybe only a negative ERA test result in an atrophic endometrium would constitute a reason for uterine surrogation, adoption, or abandoning.
The diagnosis of the presence of a functional WOI in this echogenic, atrophic endometrium using the ERA test played a key role in the decision to go ahead with the treatment. ERA test is a promising molecular diagnostic tool that, as shown in this case report, may serve as an important decision making factor even in the most difficult cases. However, prospective randomized controlled trials are needed to determine its clinical usefulness. To the best of our knowledge, here we report the thinnest endometrium to date in which a healthy, full term live birth has been achieved in assisted conception.
All that to say, it seems like a longer protocol with higher doses of estrogen might be the ticket. Even doing a few cycles of it to “wake up” the uterus might help. I’m going to ask my RE about it. The only question mark with this I have though is my RE’s earlier mention of the danger of uncontested estrogen for a long period of time. (A quick google search gave me this: …high, uncontested estrogen, which in itself is a cell proliferator. Of concern is the fact that mostly all female cancers are estrogen receptor rich. The last hormone one would want to be elevated is estrogen.)
Lots to digest. I will let you know what I find out!
Thanks so much for your encouragement - it helps to have community here! I just entered a long post, so you can see my most recent thoughts there. But I wanted to reach out to you specifically to thank you for your ear and your thoughts. And congrats on the baby girl!
I hope you are still there. Please let me know how were you able to get pregnant? After having the transfer of your frozen egg, did you take estrogens? Please I need some information because every little detail makes a huge difference on us…you know!!!
Thank you so much
I take prednisone 7.5. Synthroid 100. 1puff off desmopressin and 0.3 of hgh. Apart from vitamins. I just started a yesterday to stimulate my ovaries with menopur 450. Please let me know how you procceded. Thank you so much!!!
Hi so just wanted to share my success
Diagnosed with unknow caused Hypopituitarism, hypogonadism secondary adrenal insufficiency after multiple tests they think childhood shingles was the cause so at 16 i had a show of af but never had a period so put on the pill to regulate my ps.
Fast forward 8 years and i began collapsing so after years of tests was put on pill amd hydrocortisone.
Told i would need fertility treatment to conceive.
Got referred after marriage and was offered ovulation induction which we began after 6 weeks of no development they keep me on injections but added progesterone tablets for a futher 4 weeks. They then had me trigger with timed intercourse but no success and i also didnt bleed.
They then said it was primming so after giving me medication to have a bleed and it began again tablets alonside injections after 14 days i triggered and had timed intercourse with 1 follicle which was a success. I was pregnant.
Pregnancy was fantastic no issues and i had to take progesterone and pessaries for 14 weeks including the 2 week wait to test meaning i had taken the progesterone for 16 weeks by the time i stopped. Had a normal viginal delivery although hospital was trying to force an induction i excepted to have a sweep the week b4 my due date and had my baby 2 days b4 due date. Had to have hydrocortisone by iv durning labour but no issues thankfully. Im very tall and baby was very small 5.9 but healthy and happy. I have been successfully, exclusively breastfeeding her for nealry 6 months now and am back on my normal dose of hydrocortisone. I am hoping to be referred back to try again but wanted to say thanks for this thread as its very rare to meet people with smiliar health issue. During my time at ivf clinic i was only perdon having ovulation induction and didnt think it would be successful as even nurses mistaked me for cancer patients due to my length of time attending.
Hi Flash thank you so much for your information. I wanted to ask you a question. Did you take estrogens before the trigger?
How’s everything going for you? Are you on a new cycle?
I’m in the middle of my 2nd FET cycle right now. I’ve had a some success building up my lining so far, so I wanted to share the protocol I’ve been on:
We did a sono on day-10 and my lining was 5.7mm. My RE said “This is looking good.”
I can physically tell a difference with this new, higher dose of estrogen. Might be TMI, but after just a few days on the meds, when I went to insert an estrace pill, my vagina felt different to the touch - it was, and still is, what I would describe as puffy… as if it is full of blood or has grown or something. Which makes me feel like it is doing the same thing to my uterus. I write this just incase someone reads this in the future and it’s helpful. I feel like the estrogen is really doing its job now!
Other than that, I have made a few lifestyle changes that may or may not be contributing, so for what it’s worth, here they are:
And I decided to not do acupuncture this time around. I tried it the first time, but the location and drive to get there was more stress than I think it was worth. So, I’m trying without this time.
My next check is this Thursday, which will be day-17 of the cycle. I will post what we find out!
Hey HereComesTheSun! Sorry for the delay. I was taking a big break from IVF to just relax and and enjoy the holidays. I actually just saw my dr today for a baseline, and am about to start my third attempt at a transfer…last one in Nov was cancelled due to thin lining. He said it looks good to start.
I’m so happy to hear your lining has improved this time around! It really sounds like the estrogen is doing its job this time. Thanks for the articles you sent a few months ago. I really think part of it is getting the uterus used to growing and shedding a lining, which is what one of those articles was saying. I tried to convince my dr of that, but he wasn’t buying it so much. I too am concerned about the negative effects of long term estrogen use. I’m hoping that it’s not too much of an issue for our cases, since our use is not so consistent.
Thanks for also sharing your regimen. I did acupuncture for the previous two rounds, but am also thinking of not doing it this time around. I didn’t feel like it was changing anything. I wanted to share what my dr. is putting me on this time. I don’t have the exact dosages yet, but basically it’s the estradiol injection…and Viagra. I was surprised he was adding no estradiol pill or patch. In addition, he put me on some supplements - Vitamin E 1,000u, L’Arginine 6g, and baby aspirin. I should be starting in a day or two and will share my progress.
I’d love to hear how the rest of this round is shaping up for you. Do you have fluid in your uterus this time? I’m thinking of you and hoping for the best. By they way, I live a couple hours north of NYC. Good luck and be in touch!
Hi there! Just wanted to see how you’re doing. Did you have any success with your lining? I took a break from ivf this winter, but will be starting another round in a week or so. I’m not feeling very optimistic about this one. Hope you’re doing well. Would love to have an update! Take care.