Newbie 27, adrenal insuff, amenorrhea, high FSH, sarcoid?

[Curlyheath08]

Hello I am a newbie, my name is Heather and I am in an almost 3 year co-habitation relationship with a very understanding man. We want to wait to have children until we are married however, if it happens naturally we are ok with that. We realize that there may be a short time frame where we may get lucky and if that is the case we will start trying. I more or less what to have normal hormone levels so that I can start to have normal cycles again so that I can feel like a woman again. However, let me tell you guys my story….

I have always had trouble with my period, when it began at age 12 it came on too much then it pretty much stopped. After is stopped I started to gain weight and my Mom started taking me to different doctors and I was dx with PCOS. I was put on BC pills, metformin 500mg 2x per day for 3 months, and given an estrogen to use vaginally. Well the metformin (highest dose I was on was 500mg 3x daily for 3 months) never worked I gained more weight but I did find a low dose BC pill that did not give me bad side effects. I always knew that I would have some extra work to do when I wanted to have kids.

While I was in college I loss a lot of weight (while on birth control) and at that time I was taking a low dose bc pill then Nuva ring and I stopped taking it to see if my periods came and they didn’t and if course I started gaining weight again so I started back on Nuva ring and started to loose weight again (notice a pattern?). In January 2009, I went to the ER and was dx with a blood clot in my lungs due to Nuva ring and that was my last period January 2009. The blood clot has forced doctors to actually look at the reasons why I was no cycling on my own. My doctor took some fasting labs (cortisol, dhea-s) and they were very low actually in the < less than range. I was referred to an endo and given a cort stim test that came back low so I was dx with adrenal insufficiency. At this time I had an ultrasound and more blood work and all of my female hormones were low.

However, my androgen levels are normal so how can I have PCOS when the only symptoms I have is obesity and amenorrhea? They tested my FSH and it was 56 and my GYN said I may have premature ovarian failure. I was devastated, but then I started thinking how can they say that when they have not given me any medicine to see if that would MAKE me ovulate. No promera no clomid nada….I had 3 months of having trans vag us every month, some months I had follicles and others I didn’t but the thickest my lining ever got was 3.1cm which is not enough to have a period.

Every month I get all the PMS symptoms breast tenderness, abdominal cramping, leg/thigh cramps, water retention, cravings etc. Just no period, last month I spotted a few specks of blood, but no more than that.

Am I crazy to think that if I had normal hormone levels that maybe I would ovulate? The issue is that the doctors are too scared to give me any medicine because of the blood clot. I am taking 1 mg of estradiol to protect my heart, bones etc. I believe my adrenal glands issue (low cortisol and DHEA-S) which are precursor to producing estrogen/progesterone may be an issue. My GnRh/thyroid is normal so I don’t have hypogondism entirely. The other issue is that I could possibly have sarcoidosis (inflammatory disorder that is known to cause POF) which is an autoimmune disorder and could be a reason why my ovaries are sleeping but I am going back and forth with the doctor on that issue as well. I am not sure what I need to do at this point, but I don’t believe that at 27, yes I am 27 years old my eggs are crap and that I will not be able to use them to get pregnant.

I want to try taking pharmacist controlled natural hormone replacement therapy or anything before I go to see a reproductive endocrinologist which insurance does not cover. I am no dead set against seeing a reproductive endo but here is my logic. If we fix the root (adrenal glands) problem, and supplement certain hormones (DHEA, estrogen/progesterone) then everything else SHOULD fall in place. Going to see an endo will be a last resort, it will be because I have tried on my own and it is not working. Is this the proper way to diagnose POF without seeing how a patient will respond to any treatment? Please help any suggestions; any recommendations will be greatly appreciated.

I had blood work done on 02/28 and my FSH went from 56 to 21 and my E2 went from 8 to 80.6. I am happy with that for now.

[Curlyheath08]

From 03/29/2011

First 03/28 I went for a follow-up at the "new" GYN office. She basically said that my ovaries are not working and there is not too many things I can do about it. What makes my situation seemingly harder is that I had a blood clot in my lung in Jan 2009 while I was on the NuvaRing so hormone replacement is not recommended for me unless my hemotologist says I can take hormones but I will have to be on blood thinners at the same time. Coumodin is the most common blood thinner but it is toxic to a baby if I was to get pregnant and lovenox is not but it is expensive as it comes in individual needles. So that is the first issue, she said she is going to call my hematologist and explain to him that I am not just hormonely un balanced and that I have POF, and would benefit from HRT.

I have been on estradiol 1mg once a day since November so the new GYN did another u/s and my uterine lining is thin but I have small follicles on my ovaries. So I was happy with that at least something is there and working even if it is only a little bit.

I also told her about the FSH strips and how I got 3 negative tests over a three day period and she said, "well, it could be a bad batch of test strips." I'm thinking great take the little joy away from that I have left. She did re test my FSH/E2.

Second 03/29 RE

He was so mean, he basically said that me getting pregnant is "not gonna happen". He said that my ovaries are not working and that I am in menupause and that he is sorry but the only thing he would do is put me on estrogen and provera every few months so that I can have a period, but then again he was concerned about the blood clot. He said since he has been a RE he has only had a "few" cases were a woman got pregnant with an FSH as high as mine. He said that I could loose all the weight I wanted but that it will not make my ovaries work. He said that he would contact the hematologist and talk with him so that he can understand that again I am in "menopause". He also said that my POF is the least of my worries with my adrenal/auto-immune issues going on, he suggested I deal with that because my ovary situation will not improve. He also said that he would do an ultrasound but that my ovaries are probably so small that they won't be able to see them. I the pointed out that my ovaries and uterus are within normal limits, and he said, "Oh, Well, I will get those reports from your GYN."

Ladies,

When I found this forum in the beginning of this month I had so much encouragement and hope for my situation being that I am young and I have auto-immune/adrenal issues going on in addition to the high FSH/POF. However, after this week I feel hopeless again, like it will never happen for me. I feel like I will never be a mother, and I will never find a RE that will even agree to work with me with all the immune/adrenal issues that I have going on. This is not fair I am only 27 and I feel like I am 57. I need encouragement or any uplifting words. Thanks

[BC-tnahope]

I dont have time to respond right now, I have to take my dog to the vet, but Ill be back later.

[futuremother]

You need to find a high fsh "friendly" RE pronto. Most regular REs will not deal with our condition because it messes up their stats. Actually, a high FSH doctor that has treated POF cases as well would be the best bet.

No ovulation = no pregnancy period. You must see if they can get you to ovulate. There is a huge difference between high FSH and ovulating and high FSH and not cycling. Trust me, I do know that. If the follicles are developing but not maturing it may be possible to use fertility drugs like injectables to get them to mature. Unfortunately, a lot of people with high FSH don't respond very well to the drugs. It is somewhat of a catch-22 but there are success stories. Some women sporadically ovulate and have natural pregnancies. Some women have ovulated on hormone replacement therapy. Some women respond to "tweaking" of the standard protocols with the addition of adjuvants like steroids, etc. It takes a well trained and educated doctor who has studied to help you...You must be your own advocate, however, educate yourself and find a good doctor who will think outside the box. Read through the success stories on this board for inspiration and hope...

[Curlyheath08]

Future

Thank you so much for replying. I know my story is long and I have seen a lot of visitors but no comments. Thank you for taking the time to read my story and provide feedback. I will check out the other forums and continue self educationg until I have saved up enough money to pursue more agressive treatments such as IVF. My doctors think that I need to deal with the autoimmune stuff before I worry about TTC and hormone replacement so I will give it a rest until my Mayo Clinic appointment in June. Please KIT

[BC-tnahope]

Im sorry, I forgot to come back.

I agree with your Dr that you need to deal with the immune issues first. Some Immune issues can cause m/c so you want to make sure you have that controlled before you get PG. Is there another RE that will work with you? Im not sure what amenorrhea is and how that will affect tx??

[Curlyheath08]

Thanks TNA for coming back and I am going to deal with the immune issues first and that is why I am going to MayoClinic in June. Amenorrhea is the clinical term for people that periods have stopped.

[BC-tnahope]

Let us know what they say in June.