Does anyone here have any feedback on what their androgen levels were prior to or when they were diagnosed? i'm 31 and still not shaving. Basically zero body hair. Odd, since my testosterone levels are actually high. And then i've had a series of autoimmune problems which occur almost exclusively in girls - or people with some form of intersex condition. A karyotype came back normal.

i *have* had issues with swallowing lately - food will stick at the back of my throat. And my right side is weaker than my left. Though all these things are weak correlations at this point - and not something i feel like i can say one way or the other. i struggle with nausea and fatigue as a result of the autoimmune conditions, am quite thin - so there isn't much muscle left in me to waste. No noticeable issues so far with coordination.

Anyways, thoughts are greatly appreciated. i actually went ahead and ordered a whole genome sequencing exam for myself (much cheaper than going through insurance) - and i hope to get that in the next 1-2 months. But if there is some kind of hormonal tests that could provide some basis for this, would be greatly appreciated.

Thanks!

mj, my testosterone level has been repeatedly found to be above the reference range and I also have abnormal secondary sex characteristics. While I have facial hair and a receding hairline my chest hair is thin and irregular/patchy. My body fat distribution is not masculine either. My right arm and leg had become much weaker than my left despite being right handed. I speculate that when I was in poor metabolic health Kennedy's disease aggravated the damaging stressful aspects of muscle use and my right side which I used more deteriorated faster. Dexa scans show I have less muscle mass on my right side but they also show I am now slowly rebalancing, regaining muscle mass a little faster on my right side. Exercise is key, it is both damaging but also stimulates growth and repair. Finding the right dose is important but challenging as it changes with many factors such as quality of sleep, chronic stress, sickness and metabolic health. When I get enough of those factors right, and I'm 53, I can exercise at sufficient intensity to gain strength, performance and muscle mass. Though when everything is going right I find it easy to get overly enthusiastic and push exercise to a level of diminished or even negative returns. But each time I largely suspend exercising due to injury or sickness for more than a week I have rapid losses.

I also began to experience issues with swallowing and laryngeal spasms around 30 though it took another 10 to 15 years to become scary bad. Since getting my health back on track over the last couple years it has gotten much better though not as fast as the improvements to my arms and legs.

I believe there is potential for significant interaction between Kennedy's disease and other health conditions such that KD might aggravate an autoimmune condition and/or the autoimmune condition might aggravate issues associated with KD. When my KD was progressing fastest I also developed a very wide range of other conditions such as hypertension, polyuria, neuropathies (peripheral, autonomic and focal), dyslipidemia, Raynaud's, Meniere's, Peyronie's, IBS, vasovagal syncope, etc. And with my many lifestyle adjustments all of these things along with my KD symptoms have reversed to varying degrees. In my case I've discovered that pretty much everything I was suffering including KD progression are correlated with hyperinsulinemia. And restoring insulin sensitivity has been the common target of all of the interventions I've engaged in. You asked about hormonal tests, I'd place getting a fasting insulin test at the top of the list and having it done at the same time as a fasting blood glucose test will give you a HOMA IR score which has been shown to correlate with KD progression. Insulin testing while widely available isn't nearly as commonly done as glucose testing and it is more expensive. I also recommend regular monitoring of blood glucose as insulin rises in response to elevating blood glucose and achieving low normal blood glucose is key to achieving low insulin and good insulin sensitivity.

Thank-you! This is immensely helpful. That's an interesting set of symptoms. i see some overlap. Things i'd written off as eye strain, or poor diet, or whatever. This would be a hard thing to deal with, but would explain a lot. We will see what happens. It's all speculation at this point.

Thank-you very much for your kindness in this reply.