Fertility Problems, Narcolepsy and Genetics

[steel_lady]

I am 40 and was not able to have children so I am having multiple IVF cycles. A doctor from NY told me to check my leptin which is often associated with fertility problems. Turns out that I have unusually high leptin for my BMI of 20.

I never went to get my driving license because I was afraid due to a strange problem I have. Sometimes when I am awake, I start having REM. It can last 5-10 seconds, I am just frozen while my eyes start to move rapidly. During that time I have no control over my body. It is not very frequent but when I tried to tell it to people nobody believed me. I tried to research on my own about causes and I found that REM while awake can only happen in narcolepsy. I thought I can't have that and I left it.

During my IVF journey I tried to lower my leptin with all the means I found; supplements, medicines, fasting, exposing to cold.... And it worked, I managed to bring it to normal levels.

At that time, I suddenly slept better but after my treatment, when I stopped watching my diet and other things for leptin, I slept worse again. I thought it might be leptin again since I read somewhere about its connection to sleep.

It is not that I am hypochondriac but I am a researcher and I love to read facts about various sciences so I returned to reading. Turns out that there is a mutual regulation between leptin and a neurotransmitter responsable for keeping us awake. The lack of neurotransmitter produced in hypotalamus is responsable for narcolepsy. When it is low, leptin goes up.

The thing is that I had a surgery in the past affecting my pituitary and hypothalamus. But, reading about narcolepsy I saw also it is associated with a getetic mutation which looked familiar to me. After some time I remembered! Some years ago I had a genetic testing due to gluten intolerance and this mutation was found. The same mutation is associated to some blood coagulation alteration which is also confirmed during the testing for infertility...

So I guess I have narcolepsy then? I always fall asleep during movies, talks, conversations, in transport (thought it happens to everybody) but my night sleep is poor. I don't like to take meds so I make myself asleep listening to programs during the night and trying to keep myself active during the day. My husband is pressing me to get a driving license but I believe I should not.

Just wanted to share. It seemed curious how everything is connected and how I discovered it.

 

[making_art]

Welcome, Steel_lady!

So glad you joined and shared with us. We all learn from the experiences of others.

I hope your fertility treatment goes well for you.

Regarding weather you have narcolepsy or not...I'm sure you would agree that we cannot diagnose ourselves and that only a medical doctor can diagnose us. You could very well be right but there may also be other reasons for your symptoms. Why not talk to your doctor about looking into narcolepsy?

 

[steel_lady]

Regarding weather you have narcolepsy or not...I'm sure you would agree that we cannot diagnose ourselves and that only a medical doctor can diagnose us. You could very well be right but there may also be other reasons for your symptoms. Why not talk to your doctor about looking into narcolepsy?

Because if I don't want to take medication, especially because of the fertility treatment, what is the point? For me is just loosing time and money. I mean, I have lived so many years with it and the only really limiting thing was me not driving a car. And I dubt they could help with it.

I have seen so many doctors for fertility already. What I have left of pituitary is disfunctional so they are not sure what to do with me since those surgeries are done so rarely because those tumors are treated with medication nowdays...

I kind of lost faith since I realized medicine is not science, it is just a tool. So when doctors don't know what to do, they just try to give you some medication and see what happens.

 

[GDPR]

Hi steel_lady.

I have a friend that has narcolepsy and I was just trying to imagine what it would be like if he had to take care of an infant.Seems to me that could become dangerous at times.Although I understand the reasons you don't want to talk to your doctor about it,I feel it's still important that you do.

It may not even be narcolepsy,it could be something completely different,and it might be wise to find out,not only for your own health,but also for any future child.

 

[Retired]

I kind of lost faith since I realized medicine is not science, it is just a tool. So when doctors don't know what to do, they just try to give you some medication and see what happens.

Modern medicine is indeed based in science, and like all science evolves with time as new information is learned and new discoveries are made, then proven through duplicated studies, then published and peer reviewed.

Individual response to treatments can vary, and one person's response does not necessarily predict the outcome for someone else. Some treatmenets require trial and error to determine an individual's response to that therapy.

Medical therapy is based on rational decisions, based on scientific fact and knowledge.

The application of these principles can vary from one practitioner to the next, depending on the competence, training, and clinical experience of the practitioner.

If a competent and ethical practitioner finds s/he is dealing with a situation beyond his/her understanding, the patient should be referred to another practitioner with the required knowledge and expertise.

Sorry to hear that your experience has not been favorable, but it would be unfair to indict the entire field of medicine.

Have you sought a second or even third opinion?

 

[steel_lady]

Modern medicine is indeed based in science, and like all science evolves with time as new information is learned and new discoveries are made, then proven through duplicated studies, then published and peer reviewed.

Individual response to treatments can vary, and one person's response does not necessarily predict the outcome for someone else. Some treatmenets require trial and error to determine an individual's response to that therapy.

Medical therapy is based on rational decisions, based on scientific fact and knowledge.

The application of these principles can vary from one practitioner to the next, depending on the competence, training, and clinical experience of the practitioner.

If a competent and ethical practitioner finds s/he is dealing with a situation beyond his/her understanding, the patient should be referred to another practitioner with the required knowledge and expertise.

Sorry to hear that your experience has not been favorable, but it would be unfair to indict the entire field of medicine.

Have you sought a second or even third opinion?

I can imagine how you feel with my attitude. The thing is that for our fertility treatment we have seen too much.

First in things like leptin, the doctors were just ignoring it and saying that nothing of that is proven. They were talking all the time about 'evidence based medicine' in which basically there is no evidence of anything. So, things I did to bring leptin down were things I read in biochemistry papers, not papers from medicine. And it did bring my leptin down from 46 to 4.9. Leptin among other factors has a role oposing to growth factors so when leptin is high, membranes of embryos break while it is trying to devide and it leads to a lot of fragmentation and spoiled embryos as they showed on mices. So after lowering leptin down our embryos started looking regular and without fragmentation.

Why am I saying this... Because fertility is very complicated multifactorial problem. Instead of trying to improve aspects of it, everybody was simply doing 'engineering' of follicles again and again with the hope that by miracle it would suddenly start to work. And we have seen dozens of doctors.

The reason why I am saying that medicine is not science is because medicine is dealing with people and for this reason it can not perform completely objective experiments and I will explain to you why.
For example, I have also proven growth hormone deficiency. Since there was no replacement therapy when I was in my teens, they tried to stimulate what was left of my pituitary many times and I managed to grow 6cm after 18 years of age and then my gland was failing and my GH level was undetectable. Now, in biochemistry they describe the role of GH in embryo development and they suspected that in some cases GH supplementation would help fertility.

So which experiments they did in medicine about it? There were like 5 studies.
1. They did not discriminate patients based on anything but their age
2. They did not make a difference in the study between causes of their infertility
3. They did not assess if those women were GH deficient previous to the study
4. The doses they used did not have anything to do with the rhythm of natural GH which depends on menstrual cycle
5. They did not have enough statistical data which is very common in medicine due to the nature of work

So, from the study designed this way it is impossible to prove statistically that 'GH deficient women need GH in order to have normal embryo growth'. In other words, nothing is proven so they don't use it in general. There is less than 1% of professionals who would try it and they are taged as highly contraversial. This is not isolated example at all, it hapens with most of the studies. The thing is that luckily for me, I managed to bring down my leptin because supplements and regimes for that are available but I can't treat myself with GH. In countries where egg donation is allowed, they are sending everybody who does not get pregnent in a first few trials to egg donation. That way they don't have to deal with the problem. In the cases where egg donation fails several times, only few of them decide to try to see into uterine/autoimmune/blood clotting problems.

I have a close friend who is psychiatrist in hospital. She told me that there are no specific tests for narcolepsy and that she can give me medications to stay awake during the day and sleep at night. I simply do not have strength to pursue other doctors.

The general problem in research in medicine is that doctors have to dedicate their time to their patients first and the research is secondary. I am not blaiming particular doctors, I understand them. They have their protocols they have to obay. If they would not, they would have problems. Protocols are their shield.

Please don't take it personally, I just believe that the whole system should be organized differently!

 

[making_art]

Steel_lady,
Thanks for explaining this so well for us....I can only imagine how all of this fertility ordeal and other medical conditions has been for you and your partner. Many of us become disillusioned with medicine at times.

Would narcolepsy not be assessed by a neurologist?

As we all wonder about as well... what if the symptoms are connected to something else?

It just makes sense to use professionals that specialize in an area to answer our questions. I believe that if you don't get a helpful answer from one person then you keep asking the question of other people until you do.

Sometimes going to the very people who live with the experience is the best way to find the resources and people who can answer your questions.

You are most likely right to just focus on your current issue of fertility then when that is resolved move on to the other.

Also it is important to not underestimate the invaluable help that a psychologist can provide for your emotional well being while you cope with medical conditions. There are therapists who specialize in fertility issues.

 

[making_art]

I don't know where you live but here is an example of a psychologist who specializes in fertility.
Dr. Patricia Gervaize | Ottawa Fertility Centre

 

[steel_lady]

Thanx for your help but I am from Europe! And here they limit themselves much more in therapies than doctors on the other side of Atlantic. Moreover, Europe is much more affected by crisis, especially southern parts so it is a huge limiting factor as well.
My tailor has a tumor on her eyelid that closed her eye completely and she is much slower working with only one eye but they do not approve her to go to the doctor for it because it os only 'cosmetic condition'.

 

[making_art]

Poor lady with eye tumour...blinding is cosmetic? Did you find the articles here on the site on fertility?