Last summer my hair fell out. Yup, it just fucking fell out!
Just think about that for a moment especially if you are a woman. As women we can be attached to our hair. Our hair is part of our persona if you will.
For most of my life I’ve had long, golden blonde hair just like my mom.
My husband likes (or should I say liked) my long blonde hair. He says it was one of the things that attracted him to me initially.
So, as you can imagine I FREAKED out! This was before my CVID diagnosis so I was scared to death. The fact that my hair was falling out finally provided me with the proof I needed–I was sick with something! I called my mom of course…that was a bad move because she got emotional and just started balling over the phone (which of course made me cry even harder).
Then we both got down to business.
My mom and I are both “researchers” by nature and will try or test any product to see if it works. We figure “why not?” right! Now, I’m going to share what I’ve learned and what really works if you are experiencing hair loss from CVID.
*This post contains affiliate links, which means I receive a small commission, at no extra cost to you, if you make a purchase using this link.
Why do CVID patients lose their hair?
Health Research Funding referred to hair loss from CVID as alopecia:
Multiple primary immunodeficiency diseases can have autoimmunity that affects the hair and skin pigment. Some patients develop alopecia, or patches of baldness as a result of autoantibodies against hair producing cells. Alopecia areata refers to round circular areas of hair loss…alopecia are most commonly associated with APECED, CVID, IPEX and T-cell disorders such as 22q11 deletion (Di George) syndrome although they can develop in a wide range of primary immunodeficiency diseases.
Is hair loss from CVID permanent?
Although hair loss is one of the most common symptoms of CVID, I am happy to report that mine is growing back! In fact, with various products and medical treatment maybe your hair will grow back too! Now, every CVID patient is different so some of what worked for me may not work for you but perhaps something else will (if so, please share in the comments below!).
What should you do when you experience hair loss from CVID?
When you experience hair loss you should continue to eat healthy. My doctor (Dr. K) told me to focus on adding more lean protein into my diet like grass fed beef, fish, and chicken. I also drink protein shakes daily. They are easy to make in a shaker cup or you can use a blender like the one I have and love! I just pour in 8 to 10 ounces of Vanilla Almond Milk (which is only 30 calories per serving and has only 1 carbohydrate and no sugar; also the Amazon link I’ve provided has just about the best deal I’ve seen on Almond Milk anywhere and it doesn’t spoil) and add two scoops of this protein powder! If I’m making my shake in the blender I’ll throw in some crushed ice which makes the texture more like a milkshake (YUM!). If I’m in a hurry and using my shaker cup, I just shake, shake, shake it up and I’m out the door with my shake in hand!
Dr. K also told me to “kick” stress to the curb. Stress make CVID symptoms much worse and even people without CVID can lose hair during times of immense stress!
(*I should note what I really think here just to be completely transparent…”As soon as I learn how I will!!”)
For CVID patients exercise can be a double-edged sword. If you do too much or too strenuous of an activity it can actually take precious energy away from what your immune system really needs to concentrate on–keeping you healthy by fighting off viruses and bacteria! (Please check out this great blog post by fellow CVIDiva Charlie Scott which highlights some research on the ill effects of too much and too strenuous of exercise can have on anyone’s body-not just those with CVID.)
I made this mistake myself. Before I was diagnosed and just really sick but had no idea why, I thought “I must be out of shape and/or depressed so of course I’ll join this bootcamp class and that will help!” Boy was I wrong! I took the bootcamp class three times a week, but it often took me days to recover from just one class so I’d end up missing the next class and so on and so on… Additionally, after I completed a bootcamp class I often found that my energy was so low that I had to come home and sleep or lie in bed for the rest of the day.
After some research, I learned that walking 20-30 minutes on my Bowflex Treadclimber or outdoors with my dog Gracie provided a sufficient workout! I also incorporate some light yoga or light weight-lifting with hand weights three to four times a week. I love this DVD of 20-30 minute morning and evening yoga sessions by Rodney Yee, Colleen Saidman, and Patricia Walden because the sessions are short but provide muscle training, stretching and relaxation. When I lift with my hand weights, I follow the Body for Life exercise program. (I even recommend reviewing the entire Body for Life (BFL) nutrition and exercise program on the website and reading the BFL book which you can purchase here. I’ve practiced this lifting technique for over 20 years because I could adjust it to my current fitness level.
For us CVID patients it’s always a delicate balance between doing what’s good for us and too much! In my “former life” I was a yoga instructor, dancer, runner, weight-lifter, i.e. very active so it was natural for me to just automatically assume I could still handle what I used to do.
The best products for CVID hair loss.
Honestly, before I was diagnosed with CVID I was trying every supplement and vitamin out there. I spent hundreds of dollars and got little bang for my bucks! Actually, Dr. K suggested I take very few supplements because they are not regulated by the FDA and it’s just more for my body to process. Dr. K said eat healthy, varied and eat a lot of protein.
Even the Immune Deficiency Foundation website posts the following on the subject of supplements:
There are thousands of nutritional supplements available on the open market. These include vitamins, herbal supplements, botanicals, probiotics and naturopathic products. In some cultures, use of herbal supplements is especially common. Many of these products are aggressively marketed and make claims to improve health by “boosting the immune system.” These products are not considered “drugs” by the United States Food and Drug Administration (FDA) so are not FDA regulated. The claims of improving health or strengthening the immune system are not based on scientific data, and virtually anything can be claimed or put into these products.
There is no scientific evidence that any product will boost the immune system or make it stronger. Extreme caution should be used when considering taking any of these products. Some of these supplements can be harmful or interact adversely with prescription medicines the individual is already taking. The healthcare provider’s opinion should always be sought before taking any of these products. Sometimes the provider will recommend vitamins, electrolyte supplementation or probiotics for certain patients but remember that supplements are no substitute for a healthy, balanced diet.
All that being said, I do take a good whole food multi-vitamin by Garden of Life, a magnesium supplement called Mega-Mind, and another multi-vitamin type supplement called StemKine prescribed by my stem cell therapy doctor. I also put this Ribose supplement into my drinks throughout the day. It has no taste so I just put a scoop into my coffee, water, tea, etc…
Yup! That’s what I’m sayin’. Buy some good ole’ Rogaine (here’s a link to a three-month supply of the brand name Rogaine) and not the women’s 2% minoxidil version either! The FDA has now approved the 5% minoxidil version for women’s use once per day (here’s a link to the women’s Rogaine version here but you can see it is a lot more expensive for the same stuff!). A doctor of functional medicine actually told me to use the men’s Rogaine and apply it twice a day. (Obviously, talk to your own doctor on the strength and number of applications you should apply each day.)
I actually buy the off-brand foam version in a discounted six month pack. I take a can and give it a good shakin’ before I tip it over and apply mainly to the front and sides of my hairline and also to the top and crown of my head because this is where my hair fell out the most. Obviously, you may have lost hair in different areas than I so apply to those areas. I also then take a Q-tip and apply a little to my eyebrows as well because I lost most of those too!
One thing to note here…you do have to keep using the product in order to see continued hair growth. Once you stop using it you will start to see hair thinning (or in my case falling out!) again. So, it’s not a fix-all solution, but it’s been a great tool in my hair re-growth toolbox!
I still travel almost two hours back to the town we lived in last to visit the best endocrinologist I’ve ever seen! During my last visit Dr. T actually showed me what the iRestore Laser Hair Regrowth System had done for her. My endo’s hair was the longest and fullest I’ve ever seen it and she also showed me her “smooth-as-a-baby’s-bottom forehead” even though she’d had no recent Botox. Dr. T said the lasers helped with wrinkles too! THAT was all she had to say! I was sold!
The iRestore System looks like a white, Star Wars Stormtrooper-like helmet with an attached wire and remote control. You wear the helmet every other day for 25 minutes. I often wear it while folding laundry, walking on the treadmill or sitting at my desk. It’s not cheap at over $500, so I asked for it for Christmas!
Per the iRestore website:
The 51 medical-grade lasers and LEDs radiate light energy that is absorbed by the hair follicles to enhance cell metabolism rate and reactivate follicles to stimulate hair growth. Although it can be used alone, physicians often recommend laser therapy to be used along with other solutions (such as minoxidil, finasteride, shampoo or supplements) to accelerate growth and get maximum benefits.
Yes, I look like an absolute fool wearing it! My kids laugh at me and my husband chuckles, but you know what it has helped!
As I mentioned above, I lost a lot of hair on my head and on my eyebrows when I was really sick last summer pre-diagnosis. However, after I was diagnosed with CVID and started receiving Intravenous Immunoglobulin (IVIG) treatments every three weeks I noticed my hair started to grow in and thicken. It’s been a slow process, but my hair growth is at least moving in the right direction again! Some IVIGers report hair loss instead of growth, but I have only experienced growth. Dr. K says it would be interesting to find a measurable way to record my hair regrowth.
What products, advice or questions do you have about hair loss from CVID?
Please post them below because you never know when we could all benefit!
Knowledge is power! (Rock on!) (I know, kinda corny, but I thought was def needed!)
Stay strong my Zebra friends!