Hypo Hypo - anybody else?

[SwedishKaz]

Has anyone else been diagnosed with Hypothalamus Hypopituitary?
My fertility clinic diagnosed me with Hypo Hypo about 10 years ago, and I have since had various fertility treatments and blessed with DS through IVF.
I've been on Fertility forums and never come across anybody with my symptoms. I would love to chat with someone else with Hypo Hypo.
One question that's really on my mind, is what happens to us ladies and the Menopause ? Do we still go through it?

Yes! My consultant said he 'thinks' I have it but didn't really explain what it is - so any info you could give would be great. Basically I just don't ovulate - no other symptoms. Although I did used to have periods (before taking the pill). Don't know about the menopause sorry

YAY! I am so happy to find another soul with this diagnosis.
I don't know very much about it myself to be honest. I have never had periods myself and never missed them either :)
The Doctor at the Fertility Clinic told me that if we don't have periods, this can cause our bones to be brittle. I don't understand the logic in that, but I was sent off for a scan, and the result came back saying my bones were slightly thin and I have to take calcium tablets.
My GP doesn't even know what Hypo-Hypo is, so I feel that there is nobody that I can ask about it.

Searches on google don't bring up much either do they! Have you had your hormone levels checked? Mine are normal but on the low side. They can't find any reason why I don't ovulate. Doctor has advised us to go for ivf. Finding it difficult to get my head round really as I never knew there was anything wrong with me until I started ttc (I was on the pill for years so problem did not show up). Are you a low weight? I am within my ideal bmi, doctor says it is nothing to do with being slim but my mum and mil keep going on saying that if I put on weight magically I would get pregnant making out it is my fault! I was thinking about the menopause / I guess we would still go through it as other hormones are involved not just those involved in ovulating?

Yes! I also think I am hypo hypo...I say I "think" I am, because my doctor told me she suspected I was after I thought for 6 months that I Had PCOS. (Apparently, they can have very similar symptoms.) After I went off the pill, I lost about 15 pounds in 3 months (I'm about 5'6", and went from 140 to 125), never got a period, and upon going to the doctor, realized I had polycystic ovaries. I have tried Clomid several times (which made me a CRAZY person), and have had 3 IUI's (none of which were successful). Next year I will be doing my first IVF cycle. I had never heard of hypo hypo, and am having trouble finding info online about it. Clearly, it has something to do with my metabolism, because I'm having trouble keeping any weight on (which, any other time in my life, would be AWESOME). Obviously, now, I'm most concerned about my fertility, but I have to say I am curious what happens later in life. The doctors said they think PCOS/hypo hypo has to do with the way your body processes insulin, so I'm obviously concerned about things like diabetes, hypoglycemia, heart disease, etc...Hopefully, we can all find some answers together! Good luck to you--it's good to know that I'm not alone.