May 152017
 

The term intersex is synonymous with differences/disorders of sexual development (DSD). We are taught in grade school that men have XY chromosomes and have a penis and testicles. Women are XX and have a vagina and uterus. And some go so far as to claim that those two sexes are the only human sexes. Well, they’re wrong. People with DSDs or who are intersex are those whose biological sex is different in some way.

Obviously, human embryology is complicated. But here’s a simplified summary. As embryos we’re all the same. Our gonads are the same blobs of tissue. The genital tubercle, a lump of tissue with a fancy name, can become either a penis or a clitoris. With testosterone and working testosterone receptors, the tubercle grows and becomes a penis. Likewise, the gonads become testicles. Without testosterone and working receptors, those structures become a clitoris and ovaries.

What are intersex medical conditions?
A roman fresco of Pan and Hermaphroditus, found in Pompeii. Hermaphroditus was the origin for the term "hermaphrodite", which is an old and no longer used medical term for intersex/DSD individuals

A roman fresco of Pan and Hermaphroditus, found in Pompeii. Hermaphroditus was the origin for the term “hermaphrodite”, which is an old and no longer used medical term for intersex/DSD individuals

Here are two examples of intersex/DSD medical conditions.

An individual can have XY chromosomes, have testosterone, but have testosterone receptors that don’t work. Without working receptors, their body develops along the “female” path. They have a vulva, vagina, and clitoris. They also have testicles inside. This is called Androgen Insensitivity Syndrome (AIS).

AIS can be “complete”, where the receptors don’t work at all. Or it can be “incomplete” where the receptors work a little, and the person has a more mixed biological picture. Individuals with AIS often present and think of themselves as female. They may not even know they have AIS until they don’t have periods or try to get pregnant.

On the other hand, an individual can have XX chromosomes and have hyper-active adrenal glands. The adrenal glands sit on top of the kidneys and produce a lot of different hormones. That includes some sex hormones. So hyperactive adrenal glands means more testosterone. More testosterone means that genital tubercle becomes a penis and the labia become a scrotum. So the individual has a penis and scrotum, but has ovaries hidden inside. This is called Congenital Adrenal Hyperplasia (CAH).

Like AIS, CAH can be more “complete” with a fully developed penis and scrotum. CAH can also be “incomplete” with a mixed picture. Individuals with CAH often identify as female. Some do identify as male. Some forms of CAH are potentially fatal, since the adrenals also make hormones that change how salt is handled by the body. Individuals with that form of CAH, called “salt wasting”, need to take steroids lifelong. Today, we test infants for CAH at birth.

Other forms of intersex exist. However those are the two discussed in the paper. If you’re not familiar or comfortable with intersex terminology, it’s probably a fair place to start.

So what about this week’s paper?

This week is a paper published by Beale et al. They examined long term health outcomes in intersex individuals. Their paper summarizes the published research.

We don’t have a lot of data on long term health outcomes in intersex individuals. Physicians used to advocate for early surgery for infants and a gender assignment. Physicians feared that children would be confused if they knew they were intersex. So they recommended that the person not be told they were intersex. Then intersex adults spoke up.

Surgery for infants is no longer standard. Effective treatment of intersex children really only started in the 1960’s. It didn’t become patient-centered until much later. So we don’t have many older intersex people to study or listen to. But we are starting to collect data. Let’s look at what we have.

Congenital Adrenal Hyperplasia

People with CAH need to be on steroids life-long. The steroids keep the adrenal glands quiet. Without steroids, the adrenals go back to producing lots of testosterone. The person may become masculinized. And for some patients, the adrenals may produce too much of the hormones that balance salts and water. That is life-threatening. Consistent visits with a health care provider throughout their lifetime is important.

But we also know that steroids have their risks. Osteoporosis is one risk. So far, individuals with CAH do not appear to be at higher risk for osteoporosis. The other known risks for people with CAH are obesity, high blood pressure, and abnormal lipids (including high cholesterol). So far we don’t yet know if there’s a clinical impact yet. That is, we don’t know if people with CAH are at higher risk for heart attacks or strokes. Studies will continue to follow people with CAH to find out.

Individuals with CAH are able to get pregnant as long as they have a uterus. They do need higher doses of steroids during their pregnancy. Additionally, they may need psychological support through their lifetime. But their quality of life is similar to that of people with other adrenal conditions.

Androgen Insensitivity Syndrome

AIS does not have a long term need for medications like CAH does. However, there are risks associated with having testicles inside the human abdomen. Testicles like to be kept cool. That’s why they migrate to the scrotum. Individuals with AIS are infertile because of the warmth of the abdomen. And testicles that stay in the abdomen have a risk of developing cancer. For that reason, we advise people with AIS to have their gonads surgically removed.

Some people with AIS may choose to keep their gonads until they go through puberty. The testosterone that’s produced by the testicles gets converted to estrogen in their bodies. So they can have puberty without taking hormones. Keeping the gonads that long is a risk, though. People with AIS need to talk with a knowledgeable physician about gonad removal.

For people with AIS who have had their gonads removed, starting hormone replacement therapy is crucial. Sex hormones are needed for healthy bones. If they have a uterus they should receive both estrogen and progesterone. The progesterone protects the uterus from developing cancer. If they don’t have a uterus, they can take just estrogen. Remember – their testosterone receptors don’t work, so giving testosterone won’t help. Individuals with AIS can become pregnant through egg/sperm donation if they have a uterus. Otherwise they will need to adopt or use a surrogate.

Just as with CAH, psychological support for people with AIS may be crucial. AIS can also be diagnosed later in life than CAH, so making sure the patient knows their diagnosis and is supported during that time is important.

Conclusion

As with LGBT health, we just don’t know a lot about the long term health of people with intersex conditions. Long term risks of cancers like breast cancer, cardiovascular disease, and other diseases/disorders are unknown. Stay tuned, and I’ll continue to cover studies as they’re published.

What can you do with this information?

First — if you are an intersex individual or have been diagnosed with a DSD, I recommend joining a study. We need data. Second — find a doctor who treats you well. Keep them in the loop. See them regularly. Ask them questions. If you need to change doctors, make sure you have all your records. Third — take care of yourself. Eat well. Exercise Take your medications. Avoid or reduce drug use. And remember to breathe and enjoy life.

Want to read the study for yourself? The abstract is publicly available.

May 082017
 

Can you spare 30 minutes a year to increase our knowledge of LGBTQ health?

Do you identify as LGBTQ?

If yes, then please check out The PRIDE Study!

The PRIDE Study is a new longitudinal study by the t of California San Francisco. It is the first long-term study ever launched on LGBTQ health.

Long time readers may remember when I wrote about the Institute of Medicine report on LGBT health. I jokingly summarize it as “400 pages to say that we need more data.” With studies like The PRIDE Study, we can change that. We can get real, hard, high quality data on the health needs of our communities.

Knowing the health needs of our neighbors, lovers, and friends means we can have a real impact on their health.

As always, data collected as part of the study is kept confidential. You can opt out any time you want. You can also opt into additional studies that will be connected to The PRIDE Study.

So please — if you identify as LGBTQ and can spare 30 minutes a year, join The PRIDE Study.

And spread the word!

We’ll be back to our regular programming here at Open Minded Health next week.

Nov 212016
 

On October 6, 2016 the National Institutes of Health in the United States designated gender and sexual minorities a disparity population for the purposes of research. This is tremendous news. The NIH is the health research arm of the US government. It gives grants. Scientists working there do crucial research. The NIH provides training and research opportunities for students and professionals alike.

Long time readers of Open Minded Health may remember the many times I’ve said “we need more research.” This is part of how we get that research. Through incentives that can now be provided by the NIH, and through the hard work of all connected with it.

Slowly but surely gender and sexual minority health is becoming better understood. And only through understanding it can we even begin to improve it. Ultimately so that we can all live healthier, longer, happier lives.

Read the full declaration below.

Sexual and Gender Minorities Formally Designated as a Health Disparity Population for Research Purposes

On behalf of many colleagues who have worked together to make today possible, I am proud to announce the formal designation of sexual and gender minorities (SGMs) as a health disparity population for NIH research. The term SGM encompasses lesbian, gay, bisexual, and transgender populations, as well as those whose sexual orientation, gender identity and expressions, or reproductive development varies from traditional, societal, cultural, or physiological norms.

Mounting evidence indicates that SGM populations have less access to health care and higher burdens of certain diseases, such as depression, cancer, and HIV/AIDS. But the extent and causes of health disparities are not fully understood, and research on how to close these gaps is lacking.

In addition, SGM populations have unique health challenges. More research is needed to understand these challenges, such as transgender people taking exogenous hormones.

Progress has been made in recent years, with gains in legal rights and changing social attitudes. However, stigmatization, hate-violence, and discrimination are still major barriers to the health and well-being of SGM populations. Research shows that sexual and gender minorities who live in communities with high levels of anti-SGM prejudice die sooner—12 years on average—than those living in more accepting communities.

The Minority Health and Health Disparities Research and Education Act of 2000 authorizes the Director of the National Institute on Minority Health and Health Disparities (NIMHD), in consultation with the director of the Agency for Healthcare Research and Quality (AHRQ) at the U.S. Department of Health and Human Services, to define health disparity populations. This month, with strong support from AHRQ Director Andrew Bindman, M.D., I formally designate sexual and gender minorities as a disparity population for research purposes.

The designation builds on previous steps by NIH to advance SGM health research. In 2011, the Institute of Medicine (now The National Academies of Sciences, Engineering, and Medicine) published an NIH-commissioned report on LGBT health issues. In response to the report recommendations, NIH extended its research portfolio and created the Sexual and Gender Minority Research Office (SGMRO). The SGMRO, within the Office of the Director, coordinates NIH-supported activities on SGM health issues and provides guidance to researchers within and outside of NIH.

I offer my gratitude to inaugural SGMRO Director Karen L. Parker, Ph.D., M.S.W., and NIH Principal Deputy Director Lawrence A. Tabak, D.D.S., Ph.D., who led the proposal for designation. I also offer my gratitude to colleagues across NIH who served on the NIH-established working group for their careful consideration on this matter.

This designation marks an important and necessary step in realizing NIH’s mission to advance the health of all Americans.

Source

Aug 012016
 

Welcome back to Open Minded Health Promotion! This week we’re looking at health promotion for transgender men and individuals assigned female at birth. Depending on your history some of these tips will apply more or less to you.

TransgenderPlease remember that these are specific aspects of health in addition to the standard recommendations for everyone (e.g., colonoscopy at age 50). Based on your health and your history, your doctor may have different recommendations for you. Listen to them.

All transgender men should consider…
  • Talk with their doctor about their physical and mental health
  • Practice safer sex where possible. Sexually transmitted infections can be prevented with condoms, dental dams, and other barriers. If you share sexual toys consider using condoms/barriers or cleaning them between uses.
  • Consider using birth control methods if applicable. Testosterone is not an effective method of birth control. In fact, testosterone is bad for fetuses and masculinizes them too. Non-hormonal options for birth control include condoms, copper IUDs, diaphragms and spermicidal jellies.
  • If you’re under the age of 26, get the HPV vaccine. This will reduce the chance for cervical, vaginal, anal, and oral cancers.
  • Avoid tobacco, limit alcohol, and limit/avoid other drugs. If you choose to use substances and are unwilling to stop, consider strategies to limit your risk. For example, consider participating in a clean needle program. Vaporize instead of smoke. And use as little of the drug as you can.
  • Maintain a healthy weight. While being heavy sometimes helps to hide unwanted curves, it’s also associated with heart disease and a lower quality of life.
  • Exercise regularly. Anything that gets your heart rate up and gets you moving is good for your body and mind! Weight bearing exercise, like walking and running, is best for bone health.
  • Be careful when weight lifting if you’re newly taking testosterone. Muscles grow faster than tendon, thus tendons are at risk for damage when you’re lifting until they catch up.
  • Consider storing eggs before starting testosterone if you want genetic children. Testosterone may affect your fertility. Consult a fertility expert if you need advising.
  • Seek help if you’re struggling with self injury, anorexia, or bulimia. Trans men are at higher risk than cis men for these aspects of mental health.
  • If you have unexplained vaginal bleeding, are on testosterone, and have not had a hysterectomy notify your doctor immediately. Some “breakthrough” bleeding is expected in the first few months of testosterone treatment. Once your dose is stable and your body has adapted to the testosterone you should not be bleeding. Bleeding may be benign but it may also be a sign that something more serious is going on. Contact your doctor.
  • In addition, talk with your doctor if you have pain in the pelvic area that doesn’t go away. This may also need some investigation. And s/he may be able to help relieve the pain.
  • Be as gentle as you can with binding. Make sure you allow your chest to air out because the binding may weaken that skin and put you at risk for infection. Be especially careful if you have a history of lung disease or asthma because tight binding can make it harder to breathe. You may need your inhaler more frequently if you have asthma and you’re binding. If this is the case, talk with your doctor.
  • If you’ve had genital surgery and you’re all healed from surgery: there are no specific published recommendations for caring for yourself at this point. So keep in touch with your doctor as you need to. Call your surgeon if something specific to the surgery is concerning. Continue to practice safe sex. And enjoy!
Your doctor may wish to do other tests, including…
  • Cervical cancer screening (if you have a cervix). The recommendation is every 3-5 years minimum, starting at age 21. Even with testosterone, this exam should not be painful. Talk with your doctor about your needs and concerns. Your doctor may offer a self-administered test as an alternative. Not every doctor offers a self-administered test.
  • Mammography even if you’ve had chest reconstruction. We simply don’t know what the risk of breast cancer is after top surgery because breast tissue does remain after top surgery. Once you turn 50, consider talking with your doctor about the need for mammography. In addition, if you’re feeling dysphoric discussing breast cancer then it may be helpful to remember that cis men get breast cancer too.
  • If you have not had any bottom surgery you may be asked to take a pregnancy test. This may not be intended as a transphobic question. Some medications are extremely harmful to fetuses. Hence doctors often check whether someone who can become pregnant is pregnant before prescribing. Cisgender lesbians get this question too, even if they’ve never had contact with cisgender men.

And most importantly: Take care of your mental health. We lose far too many people every year to suicide. Perhaps worse, far more struggle with depression and anxiety. Do what you need to do to take care of you. If your normal strategies aren’t working then reach out. There is help.

Want more information? You can read more from UCSF’s Primary Care Protocols and the Gay and Lesbian Medical Association.

Jul 182016
 

Transgender youth are a special population. Because of the relative novelty of treatment at any age much less for youth, data are scarce. A recent review article examining the published data on transgender youth was published. Let’s take a look at what they found.

First, how about prevalence? How many youth self identify as transgender? There are very, very, few studies that get good numbers on this. One study in New Zealand found that 1.2% of secondary school children identified as transgender, and 2.5% weren’t sure about their gender.

As we well know, being a gender and sexual minority can often be associated with health disparities. And this review reports on that too. Identifying as transgender was associated with negative psychological health. Specifically, being bullied, having symptoms of depression, attempting self harm, and attempting suicide were all more common in transgender youth than in cisgender youth. How much of that was because of discrimination and how much was because of gender dysphoria was not explored.

Researchers have also found that being transgender and having autism appear to go together. No one is quite sure why yet. There’s still a lot of research to be done to figure that out.

One interesting difference in the literature stands out to me, though. It appears that transgender men are more likely to self harm and transgender women are more likely to be autistic. Among cisgender people, cis women are more likely to self harm and cis men are more likely to be autistic. There are theories for why that sex difference exists, but there’s little to no agreement. It could be related to social environments, hormones, the environment in the womb, or any number of other factors. But the observation that transgender men and women more resemble their sex than their gender for self harm and autism is worth investigating further.

What about the effects of hormone therapy for transgender youth? Especially puberty suppression, which is the unique factor for their treatment? As a reminder, the treatment of transgender youth is largely based on the Dutch model. At puberty, children go on puberty suppressing drugs. They then go on hormones (and thus begin puberty) at age 16 and are eligible for surgery at age 18. There are efforts to deliver cross-sex hormones earlier, but the Dutch model is the standard that most of the research is based on. A Dutch study found that the psychological health of transgender youth improved after surgery. Their psychological health even equalled that of their cisgender peers! The researchers also found that youth continued to struggle with body image throughout the time they were on puberty suppression only. But their self-image improved with hormone therapy and surgery. None of the children regretted transitioning. And they said that social transition was “easy”.

One challenge to that particular Dutch study is that the Dutch protocol excludes trans youth who have significant psychiatric issues. A young person with unmanaged schizophrenia, severe depression, or other similar issue wouldn’t be allowed to start hormones. So the research was only on relatively psychologically healthy youth to begin with. It’s difficult to say if that had an effect on the study’s results. It’s also difficult to say whether the psychological health of a trans youth is the cause or the result of their dysphoria. A trans youth with depression might well benefit from hormone therapy, after all.

There are multiple questions still unresolved when it comes to treating transgender children. Does puberty suppression have a long term effect on their bones? Are there long-term physical or psychological health effects of early transition? How should children with serious psychological conditions be treated (besides the obvious answer — with compassion)? And on, and on.

The medical and scientific communities are working on answering these questions. But it will take time. And in the mean time — physicians and families do they best they can with what information we have. If you have, or are, a transgender youth please consider participating in a study so we can do even better for children in the future.

Want to read the review for yourself? The abstract is publicly available.