Written 3/19/07
Today, it’s time I tell you how my hormone research is going. I wanted to share this with you because you have helped me on my way, or because you might have something like what I have, and maybe some vein of my work can be of help to you. I don’t know your bodies, of course, so please don’t be offended that I sent this to you. Each of you is a very sweet and healthy person, and I do not attempt to make any assumptions about your medical needs. I just wanted to share what I learned about me, with you, in case any of it can be of help to you or anyone you know. That’s for your understanding. If you have any further questions I don’t resolve in this brief overview, just ask, I’m happy to explain.
The initial thing the doctor said I had is PCOS, polycystic ovarian syndrome. This is a general list of symptoms that could have many causes. I’ve been going to a natural bio-identical hormone doctor for 9 months now in attempt to correct it. He gave me bio-identical progesterone, thyroid (for energy), DHEA, and Metformin (to keep blood sugar and insulin levels low) and some other things that should’ve worked after 6 months max. But they didn’t. For some women, PCOS and added hormones with Metformin is all they need to begin having normal cycles again. If this is you, then don’t worry about the rest of this email.
The difference with me was that not only did normal hormone replacement not fix it, but that I’ve had bi-annual non-ovulating or non-existent cycles since I first hit puberty, so it’s not late onset, nor caused by stress factors or toxins in the environment like a lot of PCOS is. I started looking for causes that began earlier in my life. Here’s what I found that fit me:
Congenital Adrenal Hyperplasia, also known as CAH. This is the version which is due to 21-hydroxylase deficiency, CAH 21-OH. My doctor immediately agreed with me that this is the only thing that could explain me. What a relief!
The Classical form means a woman has not exactly normal female genitalia. The non-classical form, which I have, means normal genitalia, but having other secondary male signs, such as too much body hair, too low progesterone, too high testosterone and androgens, and messed up or no cycles. For me, my estrogen is way too high in relation to my progesterone, and without a balance there, the FSH and LH can’t do it’s job to get me to ovulate. Without ovulating, I never make more progesterone, and the cycles exacerbates itself. The more estrogen dominance, the more I don’t ovulate, and the more weight the estrogen tells my body to store. To me, it seemed, something more wrong had to be going on.
On my blood tests, for your reference, I wasn’t really off the charts in too many places. My estrogen was normal. My progesterone was incredibly low, being low for a women in menopause and below the chart for a 33 year old such as myself. My testosterone was slightly above normal range. These results were all similar to blood tests I had done when I was a teenager. My cortisol level was low, but still there. While this might seem just fine, most people who have PCOS and are overweight have it because their cortisol levels are through the roof. Also, my fasting insulin and my blood sugar levels were also both low. This was further proven when I took Metformin at the doctor’s request, but it just kept making my blood sugar drop so low I had to eat constantly. Clearly I was in the category of women who exhibit PCOS symptoms without having pre-diabetes. If you have PCOS symptoms and show pre-diabetes, then Metformin and supplemental hormones is all you need to get balanced again. Many babies are reportedly conceived once a woman is on Metformin too. Be sure to keep taking it first trimester to avoid miscarriage.
However, for me, the normal treatment wasn’t really treating me. Most doctors would, and do, look at these blood test results and think it’s all in range, she’s fine. Some have told me I don’t need to ovulate unless I want to get pregnant. But I do want to ovulate to feel normal and healthy. Other, more mainstream doctors have said this to me, and my sister’s doctor has said it to her. But to me, not being able to ovulate without medicine isn’t fine. I want more kids, I want to feel more feminine, and I want to have my weight and size accurately reflect my diet and my exercise levels, not to just gain a lot of weight because I’ve stopped breastfeeding my youngest so it’s time for my cycles to stop and my weight to come on. Only when I was breastfeeding did I ever have normal, ovulatory cycles in my life. That was caused from the cortisol and progesterone created by my son’s placentas, which made me really skinny, energetic, and healthy after they were born. The effect remained as long as I breastfed, but no further.
There is further information about this at the links below.
By the way, Brittany and my sister Krysten, I don’t think you have any of this, since you get pregnant quite easily, I just wanted to include you in the email to keep you up on my research. J
The treatment for CAH, Congenital Adrenal Hyperplasia is Cortisol, also known as hydrocortisol. The brand name of my prescription is Cortef.
Basically, I lack an enzyme, genetically and from before I was born, that is used to create Cortisol. Either both of my parents lack it and were recessively carriers, or just one of them and I am a “carrier” who shows symptoms. Doctors aren’t sure which way it happens yet. I haven’t had a DNA test, so I don’t know on me, but it doesn’t really matter. Or maybe I have one enzyme out of two, or something. I make some cortisol, but not nearly enough. Without enough, my energy levels and my ability to get up in the morning are gone, and I can’t convert this lacking cortisol into progesterone, so I become estrogen dominant and can’t ovulate and store too much fat. And, without enough cortisol, a feedback mechanism is missed that should tell my hypothalamus in my brain to stop produce excess DHEA and androgens (both of which are male hormones), so my body thinks it should make more and more of these, which it does. Cortisol is also used as energy, and to convert into progesterone, another way to balance my excess estrogen.
I’ve been on a very low dose of Cortef now for only 1.5 weeks. I haven’t even had time to see if I’ll have a normal cycle yet. But, it may take a few months, and I need to let you know what I learned, in case it can help you too. In the short time I’ve been on this, my energy level is more constant, I’ve stopped taking the supplemental thyroid the doctor gave me for energy because I don’t need it. All of a sudden, I think more clearly, and am more positive, and my old interests are returning, such as house maintenance, gardening, teaching the kids besides normal requirements for school, I even voluntarily baked something Saturday, which I haven’t done in at least a year. By the third day I had to lower my progesterone dose (I’ll keep taking it throughout, though), because my gums were telling me my dose was suddenly too high. Also, I no longer find many benefits from all the herbs I was taking to help lower my estrogen and balance it with progesterone. It feels like it’s happening with just the cortisol.
To test for this, if you want to: you’ll need to test blood for: 17-OHP (http://en.wikipedia.org/wiki/17-hydroxyprogesterone) which should be too high, or high but in range, because without cortisol you’re not converting this to progesterone. So sad. Also test cortisol levels, usually with a 24 hour urine test. It may not be through the floor, but will be uncharacteristically low if you have PCOS and especially if you are overweight. You could also test the enzyme listed on the wiki site.
Also note that CAH can present as if it were hypothyroidism or adrenal fatigue. Symptoms of hypothyroidism (low T) are actually a symptom of low Cortisol production, so that’s fine. Adrenal fatigue will refer to all of the hormones the adrenals produce (and it assumes you weren’t fatigued sometime in your life, so you had normal hormones when you were younger), whereas this only refers to one of them. We don’t want extra of the other adrenal hormones. For this purpose, don’t take anything from the Whole Foods or Wild Oats or Central Market listed as helping Adrenals. It will help too much in the wrong direction, CAH people only need Cortisol, they have plenty of the others. Also, don’t get anything that’s supposed to “help” with corisol levels, because in every case, it will be trying to LOWER your cortisol. If you have CAH, this is the opposite of what you want.
Males can also have this condition. The low levels of cortisol can effect energy levels, ability to think clearly, emotional balances, and the ability to get up early in the morning. In males there will be no physical changes and no negative effects on fertility.
This is genetic. Either one of both of my parents have this, and genetics says 1 to 2 of their kids should have it, while a 3rd child may be a non-symptomatic carrier. If I ever get pregnant with a girl, I will probably need to get amniocentesis to see if she has it too. If she does, I can take a medicine while in my 3rd month of pregnancy that will prevent her from either presenting with ambiguous genitalia or at the least just being like me, with adrenal glands and a hypothalamus which my body exposed to too much testosterone during my 3rd month of gestation, and therefore will never know how to generate a normal ovulatory cycle.
This is caused by the baby’s genetics, not the mother. This was proven by testing the amniotic fluid of the babies being tested, which is generated by the baby. The genetic difference is found there.
There are many presentations of CAH. Some women do have cycles, just not the most reliable. And may have other signs of low cortisol levels.
Oh, and by the way, and Kim you’re going to love this, since I’ve been on this medicine, my blood sugar almost never drops, whereas it used to drop all the time, and food was the only way to bring it up. Now, it only drops when I’m outside doing work, and therefore sweating a lot. I’ve found that some straight salt (though yucky) and some Gatorade, will make my feelings of low blood sugar completely go away. I don’t have to eat, just have some salt and water or Gatorade and I can work for another 2 hours. It’s amazing.
To find a doctor for the cortisol prescription, you can find a natural bio-identical hormone doctor, like I did. Or, you could find an endocrinologist who is aware of what CAH is. The trick is really finding someone who knows this condition exists. Even my sister’s natural bio-identical hormone doctor thought PCOS could only involve really high levels of cortisol, so my sister is still looking for treatment. If you are in Austin, and if you’re okay being treated over the phone, you can go to my doctor, who already knows all about this and was easy to prescribe cortisol to me after all of our research and failed treatments – Dr. Mike Clark, http://www.naturalbiohealth.com/. He can treat people in other states. All he does is talk to me, no exams. I go out of office to a lab for blood tests which are faxed back to him. And the prescriptions are either called into my pharmacy of choice (if they’re covered by insurance, like for Cortef and Metformin), or ordered for me and mailed straight to me (if they are compounding pharmacy hormones like progesterone). So, you don’t have to be in Texas to go this route. If you want to know more about him, and the one-time fee, just let me know.
Links for further research:
Wiki CAH http://en.wikipedia.org/wiki/CAH
Wiki CAH 21 http://en.wikipedia.org/wiki/Congenital_adrenal_hyperplasia_due_to_21-hydroxylase_deficiency
Wiki PCOS http://en.wikipedia.org/wiki/Pcos
Magic Foundation for CAH http://magicfoundation.org/www/docs/100.106/congenital_adrenal_hyperplasia.html
The role of natural progesterone in PCOS. http://www.ovarian-cysts-pcos.com/progesterone.html
Chapter 39 of an online book. See page 19 of 23 in the pdf, which is page 702 in the book. The graphic on that page is a perfect representation of the effects of insufficient cortisol production on the body. http://connection.lww.com/products/rhoades/documents/smch39.pdf
Have a great day!
Brooke
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