Hypopituitarism


#21

Hi everyone!

I hope everyone is doing well, hanging in there and hopefully getting their BFP’s! Sorry I went MIA but I ended up taking a month off before starting stims again, to give my body a break! i did do 1 IUI and against my docs belief, I got a BFP but had an early m/c. So, now I just finished an IVF cycle and my ovaries/follicles responded much, much better to the new treatment he used! So, to my fellow hypopit peeps, I wanted to let you know what my RE did. I was on follistim 200, menopour 3iu’s (3 vials) for I think the first 4 days. He then added in levaris 75units to mix with the menopour. Basically, he wanted to hit my ovaries with different types of stims to ensure he gets every angle. After about 7 days, he added in ganirelex and HGH for 3 days. I was also put on 2 estrogen patches from the start to ensure my lining thickens well enough. well, by day 4, my lining was already 8mm! Shocker! So, whereas, with the IUI I only got 1 big egg ahead of the others, this time I had 6 grow to maturity (i am in my early 40’s so the small number is expected). But, even one of the nurses told me she had looked at both treatments and was amazed at how much better I responded to the latter one. I don’t know if it was the multiple stims or the hgh addition? I know there isn’t that much research on it for humans but Id imagine being that we are low in HGH, this would inevitably effect the ‘growth’ of our eggs. So, we transferred a healthy embryo back on Friday and Im just waiting…again…waiting. Eesh! :). Anyway, if you are all still in the game, I hope this email helps a bit!

I wish everyone the best for a BFP!!! Hang in there! It will happen!

Steph


#22

Low Betas, High Progesterone, Hypopituitarism…HELP!

Sorry I posted and then disappeared. I needed a break…I’m back now with an update and some questions…

Actually I’m kind of freaking out.

Had 2 blast transfer on 11-4-11.
2 weeks later I developed OHSS and gained 18 lbs of water weight. OUCH! My RE decided to run the 1st BETA and tell me the results the next day because she suspected that the OHSS was exacerbated by a pregnancy.
Sure enough, 125 was my number and my RE elluded to the possiblity of multiples.
2 days later my BETA was only 232! She stated that it was processed at a different lab, so we should draw a new one in a week and have it done and the same lab as the 2nd BETA.
So a week later, the 3rd BETA is 474. She called me yesterday to say that she expected it to be higher, but that she still believes I’m pregnant. She mentioned that sometimes a multiple can stop growing so that the numbers don’t go up as drastically as before. I’m to have a BETA drawn on Monday and Wednesday of this week.
THIS SENT ME OVER THE EDGE. I want BOTH of my babies…if they are even there. My DH says that I am worrying myself too much, and that they have to get 2 BETAS at the same lab within a 2 day period to really make sense of what is going on. He’s trying to convince me there is such a thing as slow starters.

My questions are:
Has anyone else had this slow of a start and still had twins?

How do I gauge what is a normal Beta number? I’m all confused with my timeline…

OH, and I take 0.2mg Humatrope everyday. My endo told me to stay on this during pregnancy too.


#23

Hi there!

I haven’t reached the beta stage but read this article regarding normal HCG levels/betas:

Human Chorionic Gonadotropin (hCG)—The Pregnancy Hormone : American Pregnancy Association

From what I understand, EVERY pregnancy is different! I know when OHSS get severe, it can most definitely be due to pregnancy - this is because it is caused by the over-stimulation reaction to the HCG trigger shot, so it makes sense that once your embryo/placenta starts producing MORE HCG, this further stims the ovaries and usually causes increased OHSS issues. Im so sorry - that sucks! Your betas sound great and sound like they are increasing normally. Perhaps only 1 blast took? Wouldn’t you be happy with one, beautiful, healthy baby? Remember, we cannot control what happens to us with these IVF’s. I know it sucks sometimes but we just have to take what nature gives us. Congrats on your BFP!! I think you should be celebrating, take a deep breath and remind yourself that you have worked so hard for this and if you get one healthy baby then it is a miracle to be celebrated! :slight_smile:

Interesting you are on humatrope…my doc did not suggest that - Im going to ask him, since I have half the amount of HGH, of course! I wonder if that can harm the pregnancy and what role HGH has on a pregnancy. Do you know? I’ll have to look that up!

As for me, I got a faint BFP on Wednesday (5dp4dt and 9dpo) and it just keeps getting darker and darker - hoping that is a good sign! But, sooooo scared as I had a chemical pregnancy with my first IUI. Everyday I pray the line is still there and does not get lighter, like last time. My first beta isn’t until this wednesday. This will be 16dpo and 12dp4dt - I thought they did your beta test sooner in an IVF rather than later. Does anyone think this is an extra long wait?

Anyway, please keep us updated on your betas, but they do sound good to me!

Best of luck!

Steph


#24

Thanks!

Thanks so much for your reply. :slight_smile: I wish you the best of luck too…
I’m just worried because the numbers aren’t drastically going up…

The pediatric endocrinologist who diagnosed me with hypopit as a child is Dr. Felix Conte from UCSF. He’s actually quite famous in the hypopit world. I just spoke with him last week. He says the Humatrope drug is virtually the same as what we would normally make. I personally trust this man with my life, so if he tells me to take it, I’m on it. He also checked with his colleague who treats adults attempting to get pregnant, who agreed if you are growth hormone deficient, you really should be on growth hormone with adult maintenance doses.

Hope that helps…
a:bsv: :babydust:


#25

Hi sorry to but it however, I have done years of infertility and succeeded in becoming pg with twins. I wasn’t on HGH and had a HGH level of 0 and subsequently I lost the twins. My fertility Dr. didn’t keep up to my Endo and didn’t realize I wasn’t on it. Well after years of fertility tx I have been advised my several endocronologists that is is highly unlikely we can carry a pregnancy with out HGH. It is needed for the cellular division of the embryo and us too. I strongly suggest that you reed the good it does even if your not trying to get pg.
I started a dose of .20 in Sept and already my body is feeling more like my own. I have a waist, I don’t mind being in a crowd any more and my ovaries are trying to work and I have a microscopic portion of my pituitary left. I have had 16 brain surgeries because of complications after my initial tumor removal. Good luck and if you need any info or just want to talk … email me… Ayleiah:grouphug:


#26

HypoPituitarism

Hello there!
I’m a newcomer to this website and a little late at responding sorry!!! But, I wanted to say hello …I was diagnosed as a child with pan hypopit although over the years it seems as though its just hypopit alone. I took Growth Hormone shots as a child to grow, had to take birth control pills for a period (until I foudn out I had Factor V and now I’m just on monthly doses of Provera). Now my hubby and I are trying to have a baby and its been about 9 months full of tests and procedures. Everything is good on his end its just me that is a big old mess!!! We found out a few months back that I have hypothyroid so I’ve been on Synthroid, and then latest annoyance is my ACTH is high but cortisol was normal. I have an ACTH stimulation test right before the holidays so hopefully that will be the end and they can at least prescribe something for me!! Id love to hear from anyone on this board going through anything like this…or anyone that went through it and is now pregnant.

Thanks!!

-Kate:cross:


#27

Hello all,
I’ve been gone for awhile too, but I’m back now because I’ve been disappointed AGAIN! I’ve had 2 cycles so far, and both have been cancelled. It has been a lot harder to deal with the cancelled cycles than I thought it would. The first time, I was on 75 on Menopur, then my RE added my “regular” dose of Humatrope (0.8mg) and increased me to 150 of Menopur. I responded too well with 10 follicles. At 29 years old, that was way too many, so she stopped my Humatrope and put me back to 75 of Menopur. All the follicles shrank, so that was cancelled. This latest time, she started me on 225 of Menopur for 3 days, then down to 150 of Menopur. I was taking 0.8 of Humatrope the entire time. On CD12, I had about 10 follicles, but she kept me on the same dose. Yesterday, I literally had 30 follicles, so of course, that was cancelled. Next time, she’s going to have me on a low and steady dose of both Menopur and Humatrope. It’s pretty clear that the Humatrope is having a huge effect on the growth of the follicles for me, so I guess that’s progress. My husband is furious that she hasn’t come up with the right combination. He doesn’t seem to understand that there aren’t many people in our situation, so there’s not exactly a protocol to follow. I’m just struck by how unfair this all is. I mean, I know so many people who are pregnant or have kids, and they have no right to be because they are terrible parents. I, on the other hand, have always wanted to be a mother. My. Entire. Life.
Sigh…


#28

Hi everyone and welcome newcomers! :slight_smile:

Ayleiah: WOW! 16 brain surgeries! You must have amazing strength! I’m so sorry to hear about the loss of your twins over such a minor, but important, detail that could have been avoided. I know it is hard, but we have to think that what is meant to happen will happen. I hope you will go for it again and Im sure you will soon have a healthy baby!

Kate: I never even knew I was hypotpit until I turned 31! However, my mother tells me that as an infant I was with a growth specialist because I wasn’t growing well. They opted not to give me HGH because both my parents are very tall…and that was the end of it! I was never followed for hypopit which they must have seen my hormones were low? However, I did grow normally and never had symptoms until I happened to choose an endocrinologist as my primary MD. When I told him that I don’t get periods unless on the BCP, he started investigating and an MRI showed that I have stalk damage between my pituitary and hypothal and a part of my pituitary sits ectopic to where it should be. So, I consider myself partial hypopit. I do produce all the hormones except not as much as everyone else. The only med I take is thyroid hormone. My doc tried to put me on a corticosteroid but I ended up with massive muscle cramps and after continually decreasing the dose, and having a normal cortisol stim test, I argued with him to take me off of it, which I now do not take it and everything is back to normal! :slight_smile: So, I did an IVF and got pregnant! I already had my doc draw thyroid levels and they are normal so far at 6 weeks. He said I must draw them every 4-6 weeks throughout the pregnancy. It is good they are getting your levels where they should be before getting pregnant! It sounds like you have many goods docs around you and that you are in good hands! Good Luck!

Mayfairwind: UGH! I can totally understand your frustration, especially because this is not a cheap process not to mention the emotional investment! Im so sorry! Have you considered consulting with another RE, maybe one who has worked with hypotpit patients? I just did an IVF and got pregnant, however I go for my first ultrasound this Friday, so fingers crossed…it is still very early on. If you read above, I mentioned I am monitoring my thyroid hormone levels very closely, as this can make or break a pregnancy, as you probably know! Im adding in the protocol my RE did with me. He did add HGH in but only for 3 days and my follicles responded quickly as well! Maybe you can present this protocol to your RE and see what she thinks? Granted we are all different and adjustments with the other meds might be needed but maybe it will help with the dose of HGH or whatever…I wish you the best of luck!!!

11/03: started on 3rd day of period:
2 vials (75 each) menopour
150 follistim (once a day)

11/05: increase menopour to 3 vials
increase follistim to 200 (once a day)
added in 1 vial of levaris (to mix with menopour)
started 2 estrogen patches (to help thicken lining), to be changed every other day (I am still on these patches)

11/10: (have been getting ultrasounds every 2 days)
continue with all of above
add in ganirelex (because a few eggs getting big) - for 3 days
add in 6 international units of HGH (for 3 days)

11/12: (after 3 days of ganirelex and HGH) - trigger HCG
11/14: ER (started progesterone - 2 vaginal suppositories and also continuing 2 estrogen patches on hips)
11/18: ET

I don’t know if this will help but I will keep you in my prayers!! Same some prayers for my ultrasound on Friday! :slight_smile: :bsv:

Yalen: Thanks for the info!! :slight_smile:

Best of luck to everyone…we will all get there with a little extra TLC! :grouphug:

Steph


#29

Hello ladies,

I to have hypopituitarism due to the birth of my daughter in which my pituitary infarcted. I am replaced on Estrogen, Progesterone, levothyroxine and GH. My husband and I have been ttc for 4 years but part of my problem was that I had not been diagnosed and replaced with meds. For the past 9 months I am finally replaced with meds and we have tried 2 ivfs but no luck. I believe it will happen it is just taking some time. Anyway, I have never posted here but I came across a Webinar on “Fertility in the Panhypopituitary Patient” and thought it might be of interest. I have been searching for something like this and I hope it to be very informative.

Free PNA Webinar - Library - Article | Pituitary Network Association

Also, I know nothing about this doctor. I just know what its like to be hypopit and ttc and trying to find info on our situation.

Wishing you all the best of luck in the world and tons of baby dust. :flower:

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#30

Also, maybe this would be a good thing to direct our doctors to see…

All the best…


#31

Frustrated too

Mayfairwind: Wow, what a struggle. I’m sorry. Can you tell me why your RA said 10 follicles were too many? That’s what I had last cycle and we proceeded. I only had 4 eggs, but they were good. We implanted 2 which took, but then I got OHSS. I am on 2 clicks of the 6mg Humatrope pen daily.


#32

[QUOTE=Yalen]Mayfairwind: Wow, what a struggle. I’m sorry. Can you tell me why your RA said 10 follicles were too many? That’s what I had last cycle and we proceeded. I only had 4 eggs, but they were good. We implanted 2 which took, but then I got OHSS. I am on 2 clicks of the 6mg Humatrope pen daily.[/QUOTE]

Hello!!

I just thought I’d mention that I have been diagnosed with high prolactin levels (I’m not sure if this is related to hypopituitarism, but I know it’s related to the pituitary gland). I had an MRI, and fortunately my elevated prolactin levels are not from a tumor. I am seeing an endocrinologist at the end of this month to hopefully lower my prolactin levels (normal range is 4-30, but my levels are in the 50’s).

Although I have a period every month, and although I appear to be ovulating, my luteal phase is extremely short (it is an average of only 8 days long. It has been as short as 7 days and a maximum of 9-10 days long). I have read that elevated prolactin can cause a short luteal phase, so I’m hoping that when we decrease the prolactin levels, then my luteal phase will lengthen. I will hopefully have some answers when I see the endocrinologist at the end of this month.

Just thought I’d share my experience since this thread seems to be related to the pituitary gland, and my secondary infertility seems to be a result of my pituitary gland producing too much prolactin.

Best of luck to everyone!!


#33

Hello,

I cant beleive I have finally found a site discussing hypop and fertility :o) I have congenital hypop and have finally started ivf today. I am on 450 menapur which i have been told it quite a high dose.

Nice to meet you all Hazel x


#34

Hi Hazel,

I think this thread is a little bid old. However, I just thought I’d let you know that I have hypopituitarism as a result of elevated prolactin levels. I do not have a tumor, and my prolactin was not elevated as far as I know until after I had my daughter. I was put on a medication called Bromocriptine to lower my prolactin, and I conceived the first month on the medication, but that pregnancy unfortunately ended in a chemical pregnancy. I am now in my 5th week of pregnancy after only my second month on Bromocriptine to lower my prolactin levels. We’re praying that everything goes well with this pregnancy :pray:

All of my other hormones except for progesterone were tested, and they all came back normal. Hypopituitarism seemed to be the result of elevated prolactin levels in my case.

Anyway, just thought I’d share my story with you. Best of luck to you!! :slight_smile:


#35

Hi everybody!

I’m overwhelmed to have found this thread (altough it’s a bit old…) I have pan-hypopituitarism after having removed a tumor last November. We are now waiting for the start signal for having transferred one of our (three) frozen embrioes. There is not much information on people with our diagnosis dealing with feritlity issues. I’m so glad to be here:-) Looking forward to following those of you still active on this thread in here! I’ll write more soon!
Frysa 38


#36

Hey all! As the others have said I too am thrilled to have found this thread!

I was born with hypopituitarism due to a bunched optic nerve, i am blind in my left eye this has caused all my problems. I am on hydrocortisone meds, thyroid replacement meds, oestrogen and progesterone meds and also growth hormone injections. At this point in time i am not yet under going fertility treatment to concive as my fiance and i are getting married in 6months so will try straight after the wedding. I will be 29.

I am very interested to hear how everyone else is getting on with fert treatment and would love to get to know you all. I have been told i shouldnt need ivf just ovulation induction meds? anyone else been told this or having any luck with this?

Look forward to chatting to you all!!!

Megan


#37

What is a chemical pregnancy?

[QUOTE=bittybaby]Hi Hazel,

I think this thread is a little bid old. However, I just thought I’d let you know that I have hypopituitarism as a result of elevated prolactin levels. I do not have a tumor, and my prolactin was not elevated as far as I know until after I had my daughter. I was put on a medication called Bromocriptine to lower my prolactin, and I conceived the first month on the medication, but that pregnancy unfortunately ended in a chemical pregnancy. I am now in my 5th week of pregnancy after only my second month on Bromocriptine to lower my prolactin levels. We’re praying that everything goes well with this pregnancy :pray:

All of my other hormones except for progesterone were tested, and they all came back normal. Hypopituitarism seemed to be the result of elevated prolactin levels in my case.

Anyway, just thought I’d share my story with you. Best of luck to you!! :)[/QUOTE]


#38

Random question, my dr has just last thurday put me on oestrogen patches im hating it and it hasnt even been a week, did you have any difficulty with yours? im feeling emotional, getting bad skin (i normally have beautifully clear skin) and the patch is lifting and when showering fills with water!! im now also finiding it itchy as the water has got into it!!! unimpressed!!!

Megan

[QUOTE=Hope4love]Hi Mayfair,

Thanks for letting me know about the details of your treatment. It’s nice to be able to compare notes sometimes and be able to learn from one another. It’s even better if we can help each other so that we can come up with ideas to discuss with our own RE’s since having Hypopituitarism is so specific to us.

I am dreading tomorrow’s appointment. Never know what the RE will suggest or say. I can only hope that he doesn’t suggest surrogacy. As far as i am concerned if my endometrial biopsy was normal then there shouldn’t be no reason for me not to be able to have an embryo transfer once the linning is thick. Again maybe they haven’t had me on Estragon long enough. So let’s see what happens. I shall keep you posted on here.

Regarding the estragon patches, whilst i was on the estragon patches i was not on the pill. And when i was off the treatment cyce was when i went back on the contreceptive pill. The pill i take has low estragon and progesterone i believe. Did your control pill have progesterone as well i wonder?

I really hope that the research i have done and your help on this forum will give the RE something to consider.

You start your next cycle in ten days. Wishing you the very best of luck. Sounds like your RE knows what she is doing and i am sure you will be BFP before you know it.

Thanks again for all your help. ;)[/QUOTE]


#39

[QUOTE=meggynz]What is a chemical pregnancy?[/QUOTE]

It’s basically a very early miscarriage. In my case, I got several positive pregnancy tests before my period was due, but then my period started, so I was only pregnant for a few days. If I hadn’t taken those pregnancy tests, I would have never even know that I was pregnant. I probably would have thought that my period was just a few days late. So it’s basically a very early miscarriage that often takes place before a woman’s period is due.


#40

Megan-
I didn’t have any problems with my estrogen patches, aside from having difficulty removing the residue when it came time to change patches. Perhaps your RE could switch the brand?
I was in pretty much your exact situation a couple of years ago. I started fertility treatment immediately after I got married 2 years ago. I went through 5 rounds of ovulation induction, and they all had to be cancelled due to too many follicles. I ranged from 10-20 viable follicles, which is way too many when you’re not doing IVF. I’ve been absent from this thread for awhile, as I’ve been taking a break from treatments. I just began my first round of IVF, and the doctor is hopeful that I should achieve a pregnancy the first time, since I am fairly young. (I’m 29 too.) Best of luck to you!