Comment by Tundra Woman on July 7, 2021 at 9:57pm

Aww, Thank you, Jade! How kind: I am so pleased you’ve found any of my comments helpful in any way.

What I’m thinking is because of the kind of alopecia you are dealing with, perhaps a topper may work the best for you to fill in the thinner spots while you’re waiting to see what your hair does next. You absolutely can bend over with any kind of hair you wear and it won’t be noticeable nor will it fall off-promise-and that’s why I think you’re so lucky to have bricks and mortar stores in your area! They can help you find a hair color that blends with your own and maybe give you some nice highlights or lowlights without the expense and the time it takes to maintain highlights etc. regularly by a professional hair salon  Do you wear your hair up for exercise class? Since you have thick hair, I assume you get pretty warm as we all tend to sweat quite a bit through our scalps Anyway, they can help you blend your natural color with some options for your particular situation.

Also, there are very fashionable head wraps-I not thinking of the ones you wear for chemo but for example, the ones conservative Jewish women wear called titchels-I’m sure I’ve spelled that incorrectly but I’ll send you some examples in my next note, OK? You wrap them yourself and there are many color combinations and accessories you can incorporate with them.  You may feel more comfortable wearing one of them especially if it’s pretty warm. Anyway, please have a bit of patience and I will get back to you in a few days, promise!

You also shook loose some hair memories from decades ago-Mon Dieu, how could I forget this hair event! You mentioned your hair getting “soft.” My late husband was like your’s even when I had him feel how incredibly soft, like the finest textured baby hair mine had become and he responded just word for word as your’s did! (They must have read the same script!)Thank heavens I wore my hair up but it was becoming increasing difficult to braid my very soft, slick, baby fine hair.

Here’s where the plot thickens ;-) Your diagnosis is considered an autoimmune illness, right? Well, for *years* I had allllll The symptoms of hyperthyroidism and struggled to get up to and stay at 100lbs. on my 5’6” height. I was working with a gastroenterologist who kept repeating blood work for my thyroid-for 6 yrs. and every. single. my bloodwork came back “perfect.” *He was not at all interested in what I was telling him* and instead was much more interested in my lab reports. Sometimes as wanted to grab my file away from him and scream, LOOK AT ME...I Have  EVERY SINGLE INDICATION OF HYPERTHYROIDISM, YA FOOL! My sense was he was blaming ME for his failure to correctly diagnose what ailed-not an uncommon response among certain segments of the medical community. Sometimes they are NOT the smartest person in the room.

Further, the social implications were appalling: People speculated constantly on my alleged “eating disorder” especially when they watched me eat everything in sight and then, when I went to the bathroom shortly thereafter because my body was on overdrive, well, for sure I had an eating disorder of some kind....Uh,  NO. Then there was the speculation I “must be” using cocaine-HA! Not a chance and there was also speculation I was HIV+. It was truly embarrassing as I was a professional and meeting with new people every day. I need to add the most offensive rumors originated and were perpetrated by women. Anyway, decades later I am still suffering medical implications from his failure to LISTEN TO ME.

Just as I was about to give up I met a nurse practitioner whose office was not far from my home. I told her about all my symptoms and she actually LISTENED to my symptoms including my hair etc. She ordered a series of tests starting with blood work which big surprise, came back “perfect.” But we had to follow a certain protocol for my insurance to cover the cost. The next two lab tests she ordered were a thyroid ultrasound (which visualizes the form of the thyroid) followed by a thyroid uptake exam (which demonstrates how the thyroid is  actually functioning .) The results of both were just off the charts crazy. Shortly thereafter when she referred me to a great Endocrinologist, I precipitously grew a goiter which was choking me within weeks. Of course my bloodwork was STILL perfect. The result of years of unrecognized hyperthyroidism resulted in a *complete thyroidectomy.*

I’ll finish this later-my cat has decided she’s gonna plop down between me and my IPad and no amount of persuasion will extricate her from her position! To be continued along with the headwraps I mentioned.

Sorry for the typos etc. as she doesn’t believe proofreading is anything but another attempt to dislodge her from her “rightful place” on top of me!

 

Comment by Tundra Woman on July 17, 2021 at 8:47am

Better late than never! Wrapunzel is the site I used, the head wrap is called a tichel and there’s plenty of sites selling them accompanied by Blogs and lots of ideas including Wrapunzel. Best wishes and I hope this helps you, Jade.

Comment by Jude on July 22, 2021 at 10:39am

Hi,

I am sorry I didn’t get back to you sooner.  I had a couple of very busy weeks.  My daughter and family came to visit from Germany.  I usually cook the week before and freeze everything so I can spend every minute with them.  They have only been home twice in eight years. We visit them every year wherever they are. We have not been able to visit because of Covid. Before  Germany they lived in Japan for three years. It is so hard just seeing my four grandchildren and daughter only once a year. Now they are going to live in Bahrain.  We had a wonderful time.  It was so good to spend time with them.  My son-in-law is in the Navy.  That is why they have lived in so many places.  Two doctors said I have autoimmune disease and one says it is just Androgenic Alopecia.  The one doctor says I inherited Androgenic Alopecia.  Both my mother and father never lost any hair and they lived into their eighties.  The doctor said someone way back in my family had it and I inherited that gene.  I can’t believe what happened to you!!  That must have been a nightmare!!  I am so glad that the nurse practitioner ordered those tests.  I can’t believe that gastroenterologist would not listen to you.  He caused you a lot of suffering.  That is awful.  The goiter sounded horrible.I am so sorry that you had to have a complete thyroidectomy.  You must be on a lot of medicine.  That is such a shame.  I had nothing like that.  You went through a lot of sickness.  I am so sorry you had to

• go through all that.  (Sorry I don’t know what this print is doing and don’t know how to fix it). I will go on the Wrapunzel site.  Sounds great.  I did go to a person that specializes in wigs and toppers but she said to wait until I really need one because if I got one now the topper might be wrong or I will need a full wig.  She did show me some, although she didn’t have a big selection. I tried on a topper and it is not that bad wearing one.  I liked her a lot.  I felt a little better after trying the topper on. I will try some more people.   I want to thank you for everything and taking the time to help me.  I have been on another site and nobody even answered me.  You are an amazing person to have gone through all that you did and  still have such a wonderful attitude.  I only hope I can someday have your attitude about hair loss.  You have been so kind and helpful!!  I really appreciate all your suggestions. I feel you have helped me so much with my hair loss.  Thank you so much!!!

Comment by Jude on July 22, 2021 at 10:45am

I meant to say Hi Tundra Woman and sorry for any mistakes.

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