Lost Soul...Am I a lost cause? Need Direction (DD & Secondary Infertility ment.)

Lost Soul...Am I a lost cause? Need Direction (DD & Secondary Infertility ment.)

SierraLately
SierraLately

April 24th, 2012, 5:32 pm #1

I have been lurking on these boards for over a year. I haven't posted mainly because I already have a DD and I did not want to seem insensitive to those who would do anything to have my problem.

My story:
I stopped BCP in Nov 2006 and did not have a period for 3 months. Then cycles resumed and on the 6th cycle we conceived DD who was born in 2008. I resumed BCP but stopped again in Mar 2010 to try for #2. It was shortly before my 34th birthday. Again, no period for 3 months then cycles resumed but they weren't regular. Some were short and I was skipping some months. Went to OB/GYN and had fertility work up. My day 3 numbers were:

E2 - 356
FSH - 6.9
LH - 8

On the day 13 ultrasound I had lots of follies but no dominant. I know now I had already ovulated by day 13 based on day 3 #'s and when my period arrived but at the time I was clueless and believed my doc who said everything was fine I just needed Clomid but I decided to cycle with an RE instead...just in case. Went to RE who gave me some explanation as to why E2 was high and wanted to try Clomid also. I had 2 "successful" cycles where I ovulated but no pregnancy and on the third cycle I had a cyst (now I think an early follie because I got my period on day 18. Started a third Clomid cycle. Went for my day 12 check and had a 24 mm follie. Waited three days with no positive OPK so I called RE who requested labs to see if I had ovulated. I hadn't. They called in Ovidrel and I took it on day 15. 7 days later checked P4 levels and I did not ovulate. RE couldn't give an explanation but wanted me to get day 3 levels checked again and try another Clomid cycle but at 100mg. The day 3 #'s were:

FSH - 29
LH- 21
E2- 83

I got the donor egg speech. I did not have a period for three months again then decided to try injectables with TI. This was a total disaster. They had me on Follistim 225 iu and by day 7 my E2 dropped to 30 and my follies were gone. I decided to just try at home and give up on treatments. I have had irregular cycles since then and haven't had a cycle for 2 months now, but recently I started getting hot flashes and night sweats so I have a feeling my E2 is really low and FSH is high. I have an appt with my OB/GYN to discuss HRT. I can't take the night sweats anymore. I just turned 36.

I want to try to conceive with my own eggs, but I don't know what to do. I don't understand why i have always had plenty of follicles yet have high FSH. Treatment locally seems pointless. If I was cycling regularly I would just keep trying but It feels so pointless with my irregular cycles and now menopausal symptoms. Should I consult with Dr Check (I am in Austin, TX)? Should I take HRT and hope for the best? I am really down about this even though I received my diagnosis over a year ago. I can't seem to move on or decide on a course of action. I just feel like giving up and moving on but I can't. I feel hopeless. What would you do in my situation? Any advice is appreciated.
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Joined: November 18th, 2009, 5:41 pm

April 24th, 2012, 11:20 pm #2

I started getting night sweats the week before my period at 39 (about 18 months ago). I also had migraines before and during my period. Because of my high FSH, I assumed these symptoms were caused by low estrogen and that I was moving into menopause. I had also gained 10 pounds, was tired all the time, had flaky skin, and felt foggy-brained. After a year of suffering, I finally saw a wonderful endocrinologist (not RE, just regular endocrinologist) and he diagnosed me with thyroiditis (enlarged thyroid). I was completely hypothyroid, despite the fact that my initial bloodtests performed by my naturopath showed my thyroid levels in the normal range. Turned out I needed more sensitive tests and antibody tests. Just wanted to put that out there because we high FSHers tend to assumed night sweats and hot flashes are estrogen-related, when in fact they can be thyroid-related. And most drs just assume that if your TSH levels are in the normal range, they don't need to do further tests. Makes me wonder if my thyroid levels were low when I was TTC 5 years ago. I think more of us should push for detailed thyroid tests.

Also wanted to mention that like you, my FSH tested high (14.3) when I had been taking Clomid for several months. I believe that in some people, Clomid can make FSH levels spike. My FSH was never tested before I was put on Clomid so I don't know this for sure - just a hunch. That may be the case for you. FSH was not an accurate predictor for me of my future IVF success - I went on to have two kids (one IVF, one nat. preg.).

Good luck to you,
Sarah

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Antonialisa
Antonialisa

April 25th, 2012, 1:30 am #3

I have been lurking on these boards for over a year. I haven't posted mainly because I already have a DD and I did not want to seem insensitive to those who would do anything to have my problem.

My story:
I stopped BCP in Nov 2006 and did not have a period for 3 months. Then cycles resumed and on the 6th cycle we conceived DD who was born in 2008. I resumed BCP but stopped again in Mar 2010 to try for #2. It was shortly before my 34th birthday. Again, no period for 3 months then cycles resumed but they weren't regular. Some were short and I was skipping some months. Went to OB/GYN and had fertility work up. My day 3 numbers were:

E2 - 356
FSH - 6.9
LH - 8

On the day 13 ultrasound I had lots of follies but no dominant. I know now I had already ovulated by day 13 based on day 3 #'s and when my period arrived but at the time I was clueless and believed my doc who said everything was fine I just needed Clomid but I decided to cycle with an RE instead...just in case. Went to RE who gave me some explanation as to why E2 was high and wanted to try Clomid also. I had 2 "successful" cycles where I ovulated but no pregnancy and on the third cycle I had a cyst (now I think an early follie because I got my period on day 18. Started a third Clomid cycle. Went for my day 12 check and had a 24 mm follie. Waited three days with no positive OPK so I called RE who requested labs to see if I had ovulated. I hadn't. They called in Ovidrel and I took it on day 15. 7 days later checked P4 levels and I did not ovulate. RE couldn't give an explanation but wanted me to get day 3 levels checked again and try another Clomid cycle but at 100mg. The day 3 #'s were:

FSH - 29
LH- 21
E2- 83

I got the donor egg speech. I did not have a period for three months again then decided to try injectables with TI. This was a total disaster. They had me on Follistim 225 iu and by day 7 my E2 dropped to 30 and my follies were gone. I decided to just try at home and give up on treatments. I have had irregular cycles since then and haven't had a cycle for 2 months now, but recently I started getting hot flashes and night sweats so I have a feeling my E2 is really low and FSH is high. I have an appt with my OB/GYN to discuss HRT. I can't take the night sweats anymore. I just turned 36.

I want to try to conceive with my own eggs, but I don't know what to do. I don't understand why i have always had plenty of follicles yet have high FSH. Treatment locally seems pointless. If I was cycling regularly I would just keep trying but It feels so pointless with my irregular cycles and now menopausal symptoms. Should I consult with Dr Check (I am in Austin, TX)? Should I take HRT and hope for the best? I am really down about this even though I received my diagnosis over a year ago. I can't seem to move on or decide on a course of action. I just feel like giving up and moving on but I can't. I feel hopeless. What would you do in my situation? Any advice is appreciated.
Dr. Ch.eck got me ovulating properly and got regular cycles on track and my antral follicle count really increased. He really is the only one I'm aware of who does that. I think a visit to him would be worthwhile.

You are lucky that you are younger so if you have eggs you will probably have some good ones left. Unfortunately, at 41 going on 42 I got to Dr. Che.eck too late but it may not be too late for you.

Good luck.
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SierraLately
SierraLately

April 25th, 2012, 2:04 am #4

I started getting night sweats the week before my period at 39 (about 18 months ago). I also had migraines before and during my period. Because of my high FSH, I assumed these symptoms were caused by low estrogen and that I was moving into menopause. I had also gained 10 pounds, was tired all the time, had flaky skin, and felt foggy-brained. After a year of suffering, I finally saw a wonderful endocrinologist (not RE, just regular endocrinologist) and he diagnosed me with thyroiditis (enlarged thyroid). I was completely hypothyroid, despite the fact that my initial bloodtests performed by my naturopath showed my thyroid levels in the normal range. Turned out I needed more sensitive tests and antibody tests. Just wanted to put that out there because we high FSHers tend to assumed night sweats and hot flashes are estrogen-related, when in fact they can be thyroid-related. And most drs just assume that if your TSH levels are in the normal range, they don't need to do further tests. Makes me wonder if my thyroid levels were low when I was TTC 5 years ago. I think more of us should push for detailed thyroid tests.

Also wanted to mention that like you, my FSH tested high (14.3) when I had been taking Clomid for several months. I believe that in some people, Clomid can make FSH levels spike. My FSH was never tested before I was put on Clomid so I don't know this for sure - just a hunch. That may be the case for you. FSH was not an accurate predictor for me of my future IVF success - I went on to have two kids (one IVF, one nat. preg.).

Good luck to you,
Sarah
Thank you for the input. I would have never thought thyroid issues would cause night sweats. I have had some of the other symptoms you mention above also. I am going to get my thyroid levels checked more thouroughly.

I also blamed the Clomid for my FSH spike but my RE didn't think so. I know my ovaries are not working optimally but I definitely think the Clomid made things worse, at least temporarily. Then again, every treatment I have tried has only made things worse; I guess that is why I am so skeptical of any further treatment.
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SierraLately
SierraLately

April 25th, 2012, 2:12 am #5

Dr. Ch.eck got me ovulating properly and got regular cycles on track and my antral follicle count really increased. He really is the only one I'm aware of who does that. I think a visit to him would be worthwhile.

You are lucky that you are younger so if you have eggs you will probably have some good ones left. Unfortunately, at 41 going on 42 I got to Dr. Che.eck too late but it may not be too late for you.

Good luck.
Were you local to Dr. Check? I keep stressing about out of town monitoring. I have read so many posts about how stressful and frustrating it is. I do think he is probably the only person who can help me. I don't think I will respond to any traditional protocols. I am seriously considering the consult. Thanks so much for the input.
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Ashley
Ashley

April 25th, 2012, 2:55 am #6

I would say it was really frustrating in the beginning being a Out of town patience but once ou get used to the routine it's really not different than going to the clinic. I have been with Cooper only for a month an a half , my first cycle I ovulated now in 2ww. t
At the consult my Fsh was 60 , I haven't had any periods for 8 months other than spotting . I would highly suggest a consult with him.
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Julie
Julie

April 25th, 2012, 3:34 am #7

I have been lurking on these boards for over a year. I haven't posted mainly because I already have a DD and I did not want to seem insensitive to those who would do anything to have my problem.

My story:
I stopped BCP in Nov 2006 and did not have a period for 3 months. Then cycles resumed and on the 6th cycle we conceived DD who was born in 2008. I resumed BCP but stopped again in Mar 2010 to try for #2. It was shortly before my 34th birthday. Again, no period for 3 months then cycles resumed but they weren't regular. Some were short and I was skipping some months. Went to OB/GYN and had fertility work up. My day 3 numbers were:

E2 - 356
FSH - 6.9
LH - 8

On the day 13 ultrasound I had lots of follies but no dominant. I know now I had already ovulated by day 13 based on day 3 #'s and when my period arrived but at the time I was clueless and believed my doc who said everything was fine I just needed Clomid but I decided to cycle with an RE instead...just in case. Went to RE who gave me some explanation as to why E2 was high and wanted to try Clomid also. I had 2 "successful" cycles where I ovulated but no pregnancy and on the third cycle I had a cyst (now I think an early follie because I got my period on day 18. Started a third Clomid cycle. Went for my day 12 check and had a 24 mm follie. Waited three days with no positive OPK so I called RE who requested labs to see if I had ovulated. I hadn't. They called in Ovidrel and I took it on day 15. 7 days later checked P4 levels and I did not ovulate. RE couldn't give an explanation but wanted me to get day 3 levels checked again and try another Clomid cycle but at 100mg. The day 3 #'s were:

FSH - 29
LH- 21
E2- 83

I got the donor egg speech. I did not have a period for three months again then decided to try injectables with TI. This was a total disaster. They had me on Follistim 225 iu and by day 7 my E2 dropped to 30 and my follies were gone. I decided to just try at home and give up on treatments. I have had irregular cycles since then and haven't had a cycle for 2 months now, but recently I started getting hot flashes and night sweats so I have a feeling my E2 is really low and FSH is high. I have an appt with my OB/GYN to discuss HRT. I can't take the night sweats anymore. I just turned 36.

I want to try to conceive with my own eggs, but I don't know what to do. I don't understand why i have always had plenty of follicles yet have high FSH. Treatment locally seems pointless. If I was cycling regularly I would just keep trying but It feels so pointless with my irregular cycles and now menopausal symptoms. Should I consult with Dr Check (I am in Austin, TX)? Should I take HRT and hope for the best? I am really down about this even though I received my diagnosis over a year ago. I can't seem to move on or decide on a course of action. I just feel like giving up and moving on but I can't. I feel hopeless. What would you do in my situation? Any advice is appreciated.
I would suggest you consult with Dr. Check or another local RE. Time is valuable. You would be at better position to take actions and find out your options than trying out by yourself or just giving up.

I am not sure if i understand your situation correctly. Your E2 is high so even if you FSH is normal it still says you are having some problem. Have you ever have AMH test? or antral follical count checked? These two are routine test now. They can tell you more about your situation.

Also for high FSHers, most REs don't recommend clomid treatment. Because it may waste your valuable time. So I don't feel very comfortable about your current RE. It is important to ask for a second opinion. I do believe REs are very different and it is important to find a good match.
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SierraLately
SierraLately

April 26th, 2012, 2:17 am #8

I would say it was really frustrating in the beginning being a Out of town patience but once ou get used to the routine it's really not different than going to the clinic. I have been with Cooper only for a month an a half , my first cycle I ovulated now in 2ww. t
At the consult my Fsh was 60 , I haven't had any periods for 8 months other than spotting . I would highly suggest a consult with him.
I am going to schedule the consult. I know I will get in a routine eventually. Thanks for the input.
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SierraLately
SierraLately

April 26th, 2012, 2:24 am #9

I would suggest you consult with Dr. Check or another local RE. Time is valuable. You would be at better position to take actions and find out your options than trying out by yourself or just giving up.

I am not sure if i understand your situation correctly. Your E2 is high so even if you FSH is normal it still says you are having some problem. Have you ever have AMH test? or antral follical count checked? These two are routine test now. They can tell you more about your situation.

Also for high FSHers, most REs don't recommend clomid treatment. Because it may waste your valuable time. So I don't feel very comfortable about your current RE. It is important to ask for a second opinion. I do believe REs are very different and it is important to find a good match.
Yes, every time I have had my FSH tested my e2 has been high so it is suppressing the FSH. I was diagnosed with DOR but I think I am probably POF now. Even though my e2 was high on day 3 at first my RE did not think it was DOR due to the number of follicles I had, which is why they wanted to try Clomid. I definitely won't be taking Clomid again.
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Julie
Julie

April 26th, 2012, 5:05 pm #10

Have you had your AMH tested? it is rare for you to have so many follicles if you are DOR.

You are young so it is more promising for you if you take aggressive measures. Also your high antrals may help too. But waiting will not help you a bit. I would suggest you take actions - consult Dr. Check or local REs. I strongly recommend a second opinion. I consulted two local REs and found one I felt more comfortable with. Pay attention to their donor egg/frozen transfer success rate because it can tell you sth about their lab.
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