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intersex-support · 4 days

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Help an intersex family in Gaza!

Hi everyone. I'd like to share about a fundraiser that is very important to me. A good friend of mine is in contact with the organizers.

(Described in alt).

Their story:

"Hello, my name is Abeer. I'm organizing this fundraising campaign from Belgium on behalf of my family, who currently live in Gaza.

Since October 7, all families in Gaza have been subjected to genocide. My family is one of those families that has had to flee its own home several times because of the threat of regular attacks.

After two months, my family decided to return home and take the risk of being bombed at any moment rather than stay in the street. Our 4-floor building now contains over 100 people who have fled from different parts of Gaza. We always open our hearts for our own people, but we can't do it without your help and support.

My parents, Kamal (53) and Moukaram (51), are suffering from the war because of their age and health. My brother Suliman, his wife Rawan Abualnaja and their two-year-old daughter Bisan are trying to stay strong, but it's complicated by their little daughter's enormous needs. My other siblings who are not married are Mohammed 25, Inas 22, Ibrahim 17, Abdallah 15.

My family medical condition during the war:

My father suffers from delusional disorders. He can't work or help my family financially. Mohammed and Ibrahim suffer from a chronic disease, congenital adrenal hyperplasia. It is difficult for them to obtain medication in Gaza. One of their medicines has not been available in Gaza for two years. During the war, they couldn't get their medicines because they simply didn't exist anymore. My family members are still suffering. They don't want to be potential victims. They want to escape death and live like other families on the planet.

On 01/01/2024, they attacked the local mosque and the missile failed to explode and ended up in front of my family's house. My family is in danger and the missile will explode any second.

Since then, my family has decided to be evacuated from Gaza because of the senseless attack on our city. Please help me evacuate my family to Egypt so that they can rebuild their lives in peace.

I've been in Belgium for over five years. I feel useless because I haven't been able to do much except try to help them with their daily living expenses. That's why we created this campaign. We're raising funds to evacuate my family to Egypt, a place that offers a glimmer of hope and stability. However, the cost of the evacuation is high, hence our call for crowdfunding.

Every contribution makes a difference The funds we raise will be used for :

- Evacuation from Gaza for both families (Rafah border crossing fees for 9 people total) - Two months of temporary living expenses in Egypt, including food, shelter, and transportation - Passport fees - Food expences untill they leave Gaza

No matter how small your contribution, it can make all the difference in breaking the cycle of violence and uncertainty. By supporting our campaign, you are offering a lifeline to our families so that they can rebuild their lives, heal from their trauma and make a fresh start in a safe and secure environment. Please leave a comment and share our campaign with your friends, so we can reach more people and make a bigger impact. Together, we can make a difference!"

They are using a French platform called Papayoux Solidarite instead of GoFundMe. Abeer also has a Paypal account for non European donors.

They are currently at 33 588,78 €/ 50,000 €.

Let's see if we can get them to 34,000 today. Any donation matters, even $1 or $2 donations can add up.

We need to help them meet their goal. Intersex liberation means intersex liberation everywhere--it is so important that we show up in solidarity. Those of us living with CAH know how dangerous salt wasting crises are without medication, and how important it is to urgently help Mohammed and Ibrahim get access to the medications they need to support their CAH. Intersex solidarity means that we need to show up and support intersex people facing genocide.

If you can't donate, please share. Consider doing an art raffle to raise money. Do whatever you can to help this family because it is urgent, and we need to act in solidarity with them now and make sure that the intersex community is here to support them!

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intersex-support · 24 days

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Help an intersex family in Gaza!

Hi everyone. I'd like to share about a fundraiser that is very important to me. A good friend of mine is in contact with the organizers.

(Described in alt).

Their story:

"Hello, my name is Abeer. I'm organizing this fundraising campaign from Belgium on behalf of my family, who currently live in Gaza.

Since October 7, all families in Gaza have been subjected to genocide. My family is one of those families that has had to flee its own home several times because of the threat of regular attacks.

My family medical condition during the war:

On 01/01/2024, they attacked the local mosque and the missile failed to explode and ended up in front of my family's house. My family is in danger and the missile will explode any second.

Since then, my family has decided to be evacuated from Gaza because of the senseless attack on our city. Please help me evacuate my family to Egypt so that they can rebuild their lives in peace.

Every contribution makes a difference The funds we raise will be used for :

They are using a French platform called Papayoux Solidarite instead of GoFundMe. Abeer also has a Paypal account for non European donors.

They are currently at 33 588,78 €/ 50,000 €.

Let's see if we can get them to 34,000 today. Any donation matters, even $1 or $2 donations can add up.

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intersex-support · 26 days

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The paper [open access link here] calls for major policy changes, urging medical associations and hospitals to “publicly commit to stop performing — or allowing — any medically unnecessary, non-voluntary genital cutting or surgery on children [defined as pre-pubescent minors] within their care, irrespective of the child’s sex characteristics.”

interACT and our executive director, Erika Lorshbough, are cited as contributors for this important research!

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intersex-support · 26 days

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just sending some positivity. I recently found out the largest intersex advocacy organization in my country now considers my condition intersex. years of questioning whether I’m “intersex enough” are now over.

💜💜💜Thanks so much for sharing, anon. I'm so glad that you've found an organization that accepts, affirms, and celebrates your intersex identity!

#asks #intersex positivity

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intersex-support · 29 days

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Thank you for the CAH chart, it was super useful! I think I'll need further testing anyways, but really, thank you so much for the resources

Of course!! I'm so glad it was helpful. Good luck with further testing!

#asks

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intersex-support · 1 month

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just realized that this blog has now been around for five years, which is pretty incredible. i think we've gotten a lot better at answering asks though since 2019 lmao. through the years there's been a lot of different mods who all contributed so much, and i'm very grateful to all of them. i started the blog in 2019 because the only other general intersex askblog at the time (actuallyintersex) had gone on hiatus and there was just very few active intersex bloggers from like...2017-2022. and i wanted there to be a space for intersex people to ask questions and get advice on tumblr. i feel like there was also a lot more of a culture of having askblogs than there is now. i remember all the blogs like transteensurvivalguide and nonbinary support and a bunch that i'm forgetting now. it's so cool to me now that there's a lot more active intersex blogs now and that we aren't the only intersex advice blog any more. i love seeing more and more intersex people find each other and talk about intersex topics together.

anyway just realized it had been five years and thought i'd make a little post <3

#not intersex related #blog stuff #i was 17 when i started this blog which was wild!!!!#in the first year i was not at all qualified to be answering some of the asks i got lol but i was trying very hard #and doing a lot of research #i miss some of the mods who aren't active anymore tho :( we're still in contact off of tumblr but i miss #their perspectives so much

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intersex-support · 1 month

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Intersex Support Resources

Intersex 101:

http://4intersex.org/#yourself

Intersex Organizations

Intersex Organizations by Country

Intersex Variations

Intersex Variations Glossary by InterACT

Intersex History, Art, and Politics

Compilation Post

Intersex Flag

Morgan Carpenter on the Intersex Flag

Intersex Surgery

“I Want to be Like Nature Made Me” Report from Human Rights Watch

Intersex Human Rights by Bauer et al, 2020

Legal Discrimination

US Anti-trans bills also harm intersex Children by Human Rights Watch

Intersex Legislative Toolkit by InterACT

Medical Records

InterACT Guide to accessing medical records

Intersex Health

Intersex affirming hospital policies from InterACT

Intersex affirming Primary Care from National LGBTQIA Health Education Center

Intersex and osteoporosis from Intersex Support Australia

Sexual Health

Intersex Inclusive information for Sex Ed from Puberty Curriculum

Scarleteen Sex Ed

What Intersex People Want you to Know about Sex by Maddie Rose

I’m Intersex. Here’s How That Affects My Sex Life by Mark Hay

Intersex and Disability

Liberating All Bodies: Intersex Justice and Disability Justice in Conversation

Intersex Mental Health

Mental Health

Intersex Justice and the Care We Deserve: “I Want People to Feel at Home in Their Bodies Again” by Zena Sharman

A national study on the physical and mental health of intersex adults in the U.S. by Rosenwohl-Mack et al., 2020

Crisis lines that don’t call the cops:

Trans Lifeline

Thrive Lifeline

For Parents of Intersex Children

Supporting your intersex Child by IGLYO

#resources #intersex #actuallyintersex #lgbtq #lgbtqia #intersex resources #you can also find these resources as a stable page at intersex-support.tumblr.com/resources

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intersex-support · 1 month

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Intersex Support FAQ

1. What is intersex?

Intersex is an umbrella term that describes people who have variations in sex characteristics that fall outside of the sex binary. This includes variations in genitals, internal reproductive organs like testes and ovaries, chromosomes, secondary sex characteristics, and/or the way that your body produces or responds to hormones. Some examples of intersex variations include AIS, CAH, PCOS, Klinefelters, hypospadias, and more.

The three main factors that define intersex variations are:

Variation in sex characteristics

The variation falls outside of the sex binary and is different from what is considered typical “male” or “female” development. These variations in traits might often be stigmatized and discriminated against for being outside of the sex binary.

This variation is either present from birth or develops spontaneously later in life. It is not caused by transitioning or by something temporary like a medication side effect, tumor, or other medical diagnosis.

(This definition is inspired by InterACT).

2. Does ____ count as intersex?

There are around 40 different intersex variations that are currently known. InterACT”s intersex variation glossary lists out those intersex variations and gives a brief description of each one.

However, we know that isn’t a complete list. People have intersex variations that haven’t been medically researched yet, or might have a rare variation that the intersex community isn’t aware of yet.

There are also some variations that might seem on the border between perisex and intersex. Some types of hormonal or reproductive diagnoses might not have a clear answer on whether they’re intersex or not.

Ultimately, intersex is a social/political identity rather than a strictly medical one. Increased research and changing social attitudes can cause the definition of intersex to expand over time. Regardless of whether someone has a confirmed intersex variation or an “intersex adjacent” diagnosis, if intersex resources are helpful to you, we hope that you continue to use them and act in solidarity with the intersex community.

On this blog, we do include PCOS with hyperandrogenism as part of the intersex community. Check out our PCOS tag for more posts about our reasoning, and PCOS specific resources.

3. Am I intersex?

We cannot diagnose you with an intersex variation over the internet. We can share resources such as the intersex variations glossary, share tips for navigating the medical system, and share information on other non-clinical signs of being intersex.

Some questions to ask yourself that can help you start the process of intersex discovery:

What do my sex traits (genitalia, secondary sex characteristics, hormone levels, etc) look like? Does this seem like it lines up with the “typical” descriptions of those sex traits?

Do I have any information about my birth? Were there any complications? Did doctors do extra testing at birth? Did doctors take me away from my parents for long periods of time? Did it take me longer to have my sex assigned at birth?

What was puberty like for me? Did I have early or late puberty? Did I have to go on hormones to start puberty? Did I have any variations in puberty, such as unexpected breast growth, irregular periods, or other changes? Did I go through puberty at all?

If you’ve tried to have children, are you infertile or struggling with fertility?

Did I have any unexplained surgeries or medical procedures as a child? Was I ever told I had to have organs removed and was told it was because of a cancer risk? Did I have to be on specific medications or hormones throughout my childhood? Did I have to go see a doctor more frequently? Did I go to an endocrinologist or pediatric urologist as a child?

Do I have surgery scars or scar tissue? Do I have more frequent UTIs than typical?

Do I have access to my medical records? Is there records of hormone panels, ultrasounds, physical exams, surgeries, or other medical procedures?

This kind of information can help you start to piece together if you think you might have an intersex variation, or if you think your intersex variation was hidden from you.

If you’re sending in an ask trying to figure out if your symptoms line up with a specific intersex variation, please share as much information as you’re comfortable with so that we can answer with the most helpful resources.

4. Can I self diagnose as intersex?

It’s complicated! Intersex is different from other LGBTQIA identities, in that it’s not only about self determination, but also about our embodied experience in a very specific way. In order to be intersex, you have to have an intersex variation. And there are many intersex variations that can only be confirmed through medical testing, so it’s not something that is easy to self-diagnose.

However, we recognize that the medical system is expensive, discriminatory, and often actively hides information about people’s intersex variations from them. (it wasn’t even until 2006 that the AAP stopped recommending that doctors lie to their patients about intersex status, so many intersex adults were born before that policy change!) Considering all that we know about intersex oppression, curative violence, and medical abuse, it feels incredibly cruel to tell people that they have to force themself through that system in order to seek answers.

So, we understand that there are ways of finding out that you are intersex without having a specific, confirmed, medical diagnosis. Many of us might find out that we’re intersex because we realize that our genitalia visibly looks different, and we can tell that we are intersex, even if we don’t know our specific diagnosis. Others might find out that we’re intersex because of strange discrepancies in our medical record. We might find out through discovering surgery scars on our body. We might go through puberty and realize that we’re developing in an atypical way to our peers. We might do a lot of research into intersex variations and have a pretty good guess into what variation lines up with our experiences. We might have some test results that help us understand we have intersex traits, even if we don’t know our specific diagnosis.

Before self diagnosing, we think it’s important to do thorough research into intersex variations, so that you truly understand what intersex means, what intersex variations exist, and understand how that information applies to yourself. It’s also important to be considerate of how we interact in community spaces, and respect other intersex people's boundaries as you engage in a questioning or diagnosis process.

5. Are intersex people trans?

Some intersex people are trans, and some aren’t. Most intersex people are still assigned a gender at birth, and many intersex people who are raised as one gender and then later identify as another gender identify with the label trans. Intersex people can be cis or trans just like any other group of people.

Many intersex people have complicated relationships with gender, and don’t feel like labels like cis or trans really fit their experiences. For this reason, terms like intergender and ipsogender were coined.

6. Are intersex people LGBTQIA?

It’s complicated! The “I” in LGBTQIA stands for intersex. Intersex history is intertwined with other parts of queer history. For example, the very first protest for intersex people in the United States was organized by Hermaphrodites with Attitude and Transexual Menace. There are intersex inclusive versions of community pride flags. Many intersex people view their intersex identity as a queer identity. Intersex oppression overlaps in many ways with homophobia and transphobia.

However, not all intersex people think that intersex should be included in the LGBTQIA community. Sometimes this is for bigoted reasons, with intersex radfems who use this stance as a way to be transphobic. But there are also intersex people who think that the “I” should only be included in the acronym when intersex people are actually meaningfully being included in queer spaces and resources. Many of us feel frustrated when people put “LGBTQIA” on a resource but then don’t actually have any intersex specific information in those resources.

In general, this is an ongoing intracommunity discussion where we don’t have a consensus.

7. Are intersex people disabled?

It’s complicated! Intersex is an umbrella term for many different experiences, and there is not one universal intersex experience. Some intersex people identify as disabled. Some intersex people do not.

Many intersex variations do cause disabling impacts in our bodies and lives. Some intersex variations are comorbid with other health conditions. Other intersex people become disabled because of violent normalizing interventions we’ve survived, such as forced surgery or other types of medical abuse.

Intersex people are also impacted by many of the same structures of oppression that harm disabled people. Both intersex people and disabled people are harmed by ableism. Both intersex people and disabled people are harmed by pathologization. Both intersex people and disabled people are harmed by curative violence.

In the book Cripping Intersex, Celeste Orr explores all these concepts and creates something called “intersex is/and/as/with disability,” which is a model to think about all these different and sometimes conflicting relationships with disability. Some intersex people might identify directly as disabled. Others might sometimes think about the way that intersex is treated as a disability. Other intersex people might think about intersex and disability as a way to have solidarity. All of these relationships with disability are meaningful parts of the intersex community.

8. What is intersex oppression/intersexism/interphobia/compulsory dyadism?

Intersex people face a lot of oppression in many ways in society. At the core, intersex oppression relies on the idea that the only acceptable sex traits are sex traits that fit into the sex binary. Intersex oppression relies on mythical ideas of the “ideal male or female” body, where someone's chromosomes perfectly line up with their genitalia and internal reproductive organs, with perfectly normal hormone levels and perfect secondary sex characteristics that don’t have any variation. When people don’t fit into that “perfect” sex binary, they are seen as less valuable, abnormal, and threatening. There is then a societal pressure to eradicate any traits and people that fall outside of the sex binary, which causes a lot of targeted discrimination of intersex people. This form of oppression is called “compulsory dyadism,” and was coined by Celeste Orr.

Compulsory dyadism is also rooted in, overlaps with, and is the foundation for many other types of oppression. For example, ableism is another form of oppression that creates ways of harming people whose bodies and minds are labeled as less valuable for societally constructed reasons. Check out Talila Lewis’s definition of ableism for more information. Another example is how racialized people are targeted by sex testing policies in sports--both intersex and perisex women of color are consistently targeted by sex testing policies designed to exclude intersex people from sports. Another example is that homophobia and transphobia contribute to why intersex bodies are seen as threats that need to be eradicated--society views existing with intersex sex traits as a slippery slope to growing up as a gay or trans adult. Compulsory dyadism is also at the root of a lot of transphobic rhetoric about how transitioning “ruins” people’s bodies. All these forms of oppression are connected.

There are a lot of ways that compulsory dyadism causes intersex people to be targeted and discriminated against. A huge issue is nonconsensual surgeries at birth, that attempt to “normalize” ambiguous genitalia, remove intersex people’s gonads, and otherwise alter genitalia or internal structures. These surgeries are often referred to as intersex genital mutilation, or IGM. These surgeries do not have any medical necessity, but doctors lobby to continue to be allowed to perform them anyway. These surgeries can sterilize intersex people, cause lifelong trauma, and also cause many disabling medical complications. Alongside IGM, intersex people also face a lot of different types of medical abuse.

Besides curative violence and medical abuse, intersex people also face discrimination in our schools, jobs, and public places. We face legal discrimination in changing our names and sex markers. We face discrimination from institutions like CPS, which often target parents, especially people of color, that refuse to put their children through intersex genital mutilation. Many intersex people survive targeted sexual violence. We have a widespread lack of resources, visibility, and representation. Many people still have prejudiced ideas about intersex people and call us slurs. These are just a few examples of the many way that interphobia/intersexism show up in our lives.

9. What is intersex justice?

Intersex justice is a framework created by intersex activists through the Intersex Justice Project as a way to fight for intersex liberation.

“Intersex justice is a decolonizing framework that affirms the labor of intersex people of color fighting for change across social justice movements. By definition, intersex justice affirms bodily integrity and bodily autonomy as the practice of liberation. Intersex justice is intrinsically tied to justice movements that center race, ability, gender identity & expression, migrant status, and access to sexual & reproductive healthcare. Intersex justice articulates a commitment to these movements as central to its intersectional analysis and praxis. Intersex justice acknowledges the trauma caused by medically unnecessary and nonconsensual cosmetic genital surgeries and addresses the culture of shame, silence and stigma surrounding intersex variations that perpetuate further harm.

The marginalization of intersex people is rooted in colonization and white supremacy. Colonization created a taxonomy of human bodies that privileged typical white male and female bodies, prescribing a gender binary that would ultimately harm atypical black and indigenous bodies. As part of a liberation movement, intersex activists challenge not only the medical establishment, which is often the initial site of harm, but also governments, institutions, legal structures, and sociocultural norms that exclude intersex people. Intersex people should be allowed complete and uninhibited access to obtaining identity documents, exercising their birth and adoption rights, receiving unbiased healthcare, and securing education and employment opportunities that are free from harm and harassment.” (Source: Dr. Mel Michelle Lewis through the Intersex Justice Project.)

There are seven principles to intersex justice:

Informed consent

Reparations

Legal protections

Accountability

Language

Children's rights

Patient-centered healthcare

10. What is intergender?

Intergender is a gender identity for use by intersex people only. It doesn’t have one specific definition-it is used by intersex people to mean a whole variety of things. It’s used to describe the unique ways our intersex experience intersects with and influences our gender. Some people use it as a modifying term, such as calling themselves an intergender man or woman, as a way to explain the way being intersex affects their identity. Other people identify solely as intergender, and have that be their whole gender.

11. What is dyadic/perisex/endosex?

All are words that mean “not intersex.” Different groups will have different preferences on which one they like to use.

12. Is hermaphrodite an offensive term?

Yes. It is an incredibly offensive slur that perisex people should never say. Many intersex people have a very painful history with the slur. Some of us reclaim the term, which can be an important act of healing and celebration for us.

12. Can perisex people follow?

Feel free, but understand that questions by intersex people are prioritized! Anyone is welcome to follow.

13. I’m writing a character who’s intersex…

Check out this post: https://trans-axolotl.tumblr.com/post/188153640308/intersex-representation. If you’re writing about intersex people for a paid project, you should pay an intersex person to act as a sensitivity reader before publishing.

Check out our Resources and Intersex Organizations pages as well!

#faq #intersex #actually intersex #actuallyintersex #lgbtqia #intersexism #disability #intersex resources #you can also find this post as one of our pages at intersex.support.tumblr.com/faq

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intersex-support · 1 month

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Okay, just completely redid our FAQ and resources page. I realized it's hard to access our pages on tumblr mobile, so I'm also going to post both of those just as a regular post and link it in our pinned post that that it's easier for mobile users to find.

#not intersex related #blog updates #some of this info hadn't been updated since 2019 lol

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intersex-support · 1 month

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Hey, I sent in an ask waaay ages ago that you already answered but that different anon from a few hours ago about NCAH and high prolactin was similar to me (albeit I do have high testosterone) and I wanna say your answer to them was super helpful, especially those links about high prolactin being associated with CAH because that's the kind of information I was looking for so thank you!

So glad this most recent answer helped!! I just found that flowchart and thought it was a super great visual for understanding more about CAH diagnosis :)

#asks

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intersex-support · 1 month

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the inbox is having a weird glitch where asks aren't disappearing out of the inbox after i answer them. has this happened to anyone/how to fix it?

#not intersex related #its making it hard to find new asks lol #bc all the old ones are just staying in there

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intersex-support · 1 month

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is hypergonadism intersex ?

Usually, yes! People more usually just write out hyperandrogenism or hyperestrogenism rather than using the term hypergonadism, so you'll probably find more information if you search for either of those terms.

The reasons why hypergonadism wouldn't be intersex is if it was caused as a side effect to medication, through HRT, menopause, if it was caused by a tumor, or it was caused by another temporary cause. Otherwise, hypergonadism is almost always intersex.

#asks #hypergonadism #hyperandrogenism #hyperestrogenism #hope that makes sense #its another one of those things that's liek “usually yes but sometimes not”

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intersex-support · 1 month

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Not an ask for me but for the CAH X + EDS anon: “my skin isnt Super elastic, just a little, but otherwise i am hypermobile” → your skin still might be elastic enough to qualify (don’t necessarily compare yourself to images online. Those tend to be on the more severe/extreme side of the spectrum)

I always thought my skin elasticity was in normal range/didn’t meet the criteria (because of the photos o saw online)…and then multiple doctors of mine went “no, it’s definitely in EDS rage/meets the criteria” lol

Thanks for adding your experiences, anon!

#asks #for prev anon!#cah x

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intersex-support · 1 month

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Hey, I have some questions rated to NCAH. I was AFAB and as far as I know don't have genital variations, but I had an early puberty and symptoms of hyperandrogenism such as acne and excess body and facial hair (noticeable but not severe). I had issues with my periods but I was diagnosed with endometriosis so I don't think they're connected. I did hormone testing and despite everything, my testosterone is average. However, I have high prolactin and 17-alpha-hidroxi-progesterone, which I know is associated with NCAH. Is it enough for a diagnosis though? I've done research on it but I'm not sure. Sadly I don't think my doctor will help in this regard because she already glossed over this part of the test results completely when I received them and wasn't open to the idea of me maybe having hyperandrogenism anyways

Hi anon! I'm sorry that your doctor hasn't been helpful in interpreting your test results. that's really frustrating that you aren't able to easily access medical support. Standard disclaimer that we can't diagnose people or provide medical advice on here, but I'm happy to share some resources for understanding your test results and explaining the CAH diagnosis criteria.

So, you're absolutely right that 17 alpha hidroxi progesterone (17 OHP) is associated with CAH. High levels of 17 OHP is one of biggest signs of CAH. I think it was really, really shitty and irresponsible of your doctor to refuse to test more because 17 OHP plus signs of hyperandrogenism are like textbook signs of CAH.

I'm going to share a chart explaining 17 OHP levels and CAH, sourced from myendoconsult. (Here's another medical journal with more information about diagnosis as well.)

ID: [A flowchart titled "Cosyntropin (ACTH) stimulation test. The first row of the flowchart shows the possible options for 17 OHP levels. Text of option 1 reads "Heterozygotes/Unaffected. 17 OHP less than 200 ng/dL or less than 6 nmol/L." Option 2 reads "Indeterminate. 17 OHP is 200 to 10,000 ng/dL or 6 to 300 nmol/L." The third option reads "Classic 21OH deficiency (CAH). 17 OHP is greater than 10,000 ng/dL or greater than 300 nmol/L." The next section of the flowchart has different options for what to do next if the results are indeterminate, and shares the three options for ACTH stim test results. The first ACTH stim test result option is less than 1000 ng/dL or less than 30 nmol/L, which would be heterozygotes/unaffected. The next category of ACTH stim test result is 1000 to 10,000 ng/dL or 31 to 300 nmol/L, which is Nonclassic CAH (NCAH). The third category of ACTH stim test result is greater than 10,000 ng/dL or greater than 300 nmol/L, which is Classic CAH. ]

This flowchart shows the role that 17 OHP plays in CAH diagnosis. First, doctors just test your 17 OHP levels and see if they can make a diagnosis just from that. If your 17 OHP levels were less than 200 ng/dL, they can see that you don't have CAH. If your 17 OHP levels were over 10,000, they can diagnose you with Classic CAH. However, if your 17 OHP levels are higher than normal but still below 10,000 CAH, that usually means they need to do more testing to figure it out.

The usual way they test this is through an ACTH stimulation test, where they inject you with ACTH and then measure your 17 OHP levels an hour afterwards. For people with NCAH or CAH, their 17 OHP levels will jump even higher, with a change of at least 1000 ng/dL or 30 nmol/L required for diagnosis.

So, long story short, one way you could try to figure out if your 17 OHP levels mean that you have CAH is by comparing your lab results to the flowchart above. If your 17 OHP levels are in the indeterminate range, this is something that you could bring back in to your doctor and say "Hey, best practices mean that since my 17 OHP levels are high enough to be in this range that you need to do an ACTH stimulation test for me so I can get actual results."

High prolactin can also be associated with CAH. Here's one study talking about high prolactin levels. In fact, here's another study specifically talking about high prolactin levels and normal androgen levels in a subset of people with CAH.

So, long story short, high levels of 17 OHP and high prolactin can be signs of CAH. To confirm a diagnosis, you'd probably need to look specifically at your records to figure out your 17 OHP levels, and potentially try to get an ACTH stim test depending on your results, although I know that can be difficult or impossible when doctors refuse to cooperate.

I hope this helps, and please feel free to send in another ask if you have any other questions!

#asks #intersex #congenital adrenal hyperplasia #cah

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