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Changes in hair (Read 1375 times)
DeborahW, Founder
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Changes in hair
11/08/11 at 14:31:42
 
Have any of you noticed changes in your hair? I am wondering if mast cell diseases or our meds affect the hair on one's head. I used to have very thick long hair, as in I would be asked to be a hair model for hairstylists because I had so much fabulous hair.

In the past few years, though, something has changed. My hair is still long but does not seem thick and I definitely have far fewer strands of hair per square inch on my head. Before you could never see the part in my hair. Now you really see it.

Being as my hair was my favorite feature, I am very distressed about this. I really feel as if my hair is getting worse more quickly now and I can't help but assume it is due to mast cell disease. I have read that stress, such as illness, can affect one's hair.  So I am curious if I am the only one with this problem.

Looking even deeper, I wonder if this is a sign that I am not as healthy as I believe I am. Maybe I need to have all the blood tests and make sure things look good. It's kind of worrisome....

So any suggestions of how to help one's hair? I have read that biotin is a good supplement for hair, but I don't know how that would affect mast cells. I have probably been really hurting myself because I stopped taking vitamins years ago because they made me ill. Any suggestions for a multi vitamin that any of you has tried?

Thanks everyone for any tips!!
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Re: Changes in hair
Reply #1 - 11/08/11 at 15:54:31
 
Hi Deborah,

Like you, my hair has always been thick. I started to notice a difference about 18 months ago, it's slowly been thinning. Because it was thick to begin with, it hasn't been as noticeable as if I'd had thin hair, but I can definitely notice the difference (I can even see more hair coming out on my comb when I comb it, and I just had my driver's license photo taken over the summer, and can see the difference between my new photo and my one from four years ago.)

I have heard that anesthesia can cause hair loss in some people, and I've had several surgeries in the past two years. I'm not sure if I should attribute the thinning of my hair to the anesthesia or to something mast cell related, but I have experienced the same thing.
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Joan
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Re: Changes in hair
Reply #2 - 11/08/11 at 17:25:01
 
   I've had a similar problem.  My hair was always fine, but I had a lot of it.  Over time it's gotten thinner, but that comes and goes.  In my case I think the causes are stress, including the stress of mast cells degranulating, hormones (lack of), and an auto-immune thyroid problem (Hashimoto's Thyroiditis).

  I quit taking multi-vitamins because I flushed from them, probably from the niacin.  Haven't found one without it, so take individual vitamins.  I have a bottle of Biotin in my drawer that I haven't had the courage to take yet.  If I'm brave tomorrow, I'll try it.  I don't really think it'll cause a problem, but I'm afraid anyway!   Undecided  My hair dresser swears it will help.

  Mayo Clinic's website has a section on Hair Loss:  

http://www.mayoclinic.com/health/hair-loss/DS00278/DSECTION=causes

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Re: Changes in hair
Reply #3 - 11/09/11 at 02:18:19
 
Deborah, I too have been concerned about my hair loss. I started noticing a thinning directly in front and center at my hair line above my forehead about 1 1/2 years ago. No one else could really tell but me. Also after a shower not only was there more hair in the drain filter but when I would comb it I would not only find an increase in the hair remaining on my comb but I could then gently pull my hair together as in a pony tail and pull clumps of hair from the bottom of my (long) hair. When I pulled my hair up into a pony tail I noticed my scrunchy was getting looser and eventually got to where what once was two loops around my hair became three loops. NOW I can still get the extra hair in the drain and off the bottom of my hair after combing and that thin spot above my forehead IS very noticable to others. You can actually clearly see the outline of my head through my hair when you stand in front of me. Over the summer I stopped blow drying my hair after shampooing it and I noticed that the thickness started to return. My very thin spot however has not filled back in. I'm back to two loops with my scrunchy. So as for the thickness in my hair, I think that because of the mast cell disorder I have just enough of a deficiancy that it made my hair VERY brittle and dry and easily broke off. I was not taking any anti histamine type medicines when all this started. Infact I only started taking them back in July and my thickness has returned. I don't attribute the medication to that but the not blow drying.

So that's my experience with the changes in my hair. Hope you figure something out that helps!

Kim
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Re: Changes in hair
Reply #4 - 11/09/11 at 03:12:55
 
I was interested to read this, because it's been happening to me, too.

I also have always had thick hair.  I needed heavy duty brushes, and it would take a long time to dry.

A few years ago it started falling out in a hurry.  While I still wear it long, it's extraordinarily thin and wispy now, I can't believe this is me.  I could blame it on my getting older, but this does not run in my family, no matter how old anyone got to be.  So I knew it was health-related, but I hadn't thought of it as mast-cell-related.

The first thing I noticed was that it was hurting my head to brush my hair -- the bristles are painful --  and the sun started burning my scalp any time I was outside. If I scratch my head, I'm shocked every time, to feel no hair resistance.  It's like someone came overnight and cut down most of the trees in the forest.   There's so little left up there now, that sometimes when I glance in the bathroom mirror at the right angle of light, I just see a curved bald scalp shining through.  

Being as how it's more of a vanity issue, and I have more critical health worries to deal with, I try not to dwell on it.  But you can't help but feel kind of bad about it.  I can say that for me, this long debilitating illness has taken away "myself" steadily by bits and pieces, and this is just another bit that is making me unrecognizable as to who I "used to be".

My hairs are not only greatly reduced in number, but each hair is damaged, twisted, uneven in texture and shape.  Maybe we should have hair analysis done, but who would know what to make of it?

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DeborahW, Founder
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Re: Changes in hair
Reply #5 - 11/09/11 at 04:05:45
 
I am finding the responses here very interesting. I am going to email Dr. Akin and ask about it as well. We shall see if that brings any information. In the meantime, I am going to go check out the biotin supplement....
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Patricia
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Re: Changes in hair
Reply #6 - 11/13/11 at 13:47:25
 
Hey my husbands hair was thinning dry and you could see holes...he had hashitmoto so I feel like the thyroid is a culprit as well in his case.

What has worked wonders is the neuroprotek...his hair became shiny and soft and is much fuller...another amazing supplement that he takes is hyularonic acid (dr theo recommended for his connective tissue and tendon pain) I started using it becasue it said it can help ur eyes, hair, skin and my hair and nails are off the charts. We use these drops that u put under ur tongue for 10 seconds every am...the brand we use is synthovial seven www.hyalogic.com I would highly recommend both these products.
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Re: Changes in hair
Reply #7 - 11/14/11 at 12:53:27
 
Great question Deborah!

Similar story here too.  Last year at this time I started what I can only call "acute shedding" of hair.  I had never dealt with this issue previously and always had a full head of hair that was healthy.  I would estimate that I lost about 30 to 40% of my hair volume during the 6 week episode.  It really hasn't come back since that time. Sad

The shedding got bad enough that I went to the dermatologist and had a scalp biopsy and yes, I asked them to also stain the specimen for mast cell count.  The specimen came back totally normal but I feel sure the hair loss is somehow related to the larger mast cell issue.  Perhaps from the malabsorption, anemia, Vit. D deficiency, etc.   The gastro says it's not his problem and points to the hematologist; the hematologist says it's not his problem and points to the gastro.  And the dermatologist says "well you can always get a hair transplant." Sheeeshhh, real helpful!

I've learned to live with the hair loss because I don't really have another choice.  The thing that makes me most sad about this is that the hair loss makes me look sickly.  I try my best to give my hair some life, but thin is thin, and there's only so much you can do to mask the reality.

I hope Dr. Akin can shed (no pun intended) some light on this issue. I'm eager to hear his thoughts.

Julie
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Re: Changes in hair
Reply #8 - 11/14/11 at 13:13:17
 
I wonder if it's more of a mediator released by the mast cells. Dr Afrin showed me hundreds and hundreds of them. Since i am diagnosed with MCAD/MSAS I know most of my symptoms and problems are from the mediators themselves.
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Joan
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Re: Changes in hair
Reply #9 - 11/14/11 at 13:34:25
 
I asked my haircutter about this, and he said that residue from all the meds we take can affect the thickness of the hair shaft, as well as might have side effects including hair loss.  

His suggestion was to use a product that strips the medicine from the hair, such as Nioxin.  It's available through some of the mall hair product stores or online.  They have several strengths.  The products include shampoos, conditioners, etc.  I've used the shampoo and conditioner, but only 1-2 times/week.  Will let you know if it helps.

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Re: Changes in hair
Reply #10 - 11/15/11 at 01:57:43
 
Thats interesting but not my case. I started losing my hair over a year ago which was BEFORE I ever started taking any meds. So for me I know its not related to meds.
Kim
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Re: Changes in hair
Reply #11 - 11/15/11 at 06:28:36
 
Wow;
I can relate ! My hair has fallen out at the "normal" times like after childbirth/hormonal upheavals-but gradually stopped afterwards.
After I was diagnosed w/TMEP- I noticed my hair was falling out like crazy when Id comb it or just run my hand over it! My hair used to be so thick, I'd only comb it with a plastic pick or wide "teasing" comb. My hairdresser said stress, and so did my allergist. BUT, I'd started the antihistamine protocol around that time too... Also been "hot flashing"/flushing a lot (hormones?) SO, curious to know what you all find out.  I did find a brand of vitamin C that is pure (so they might make Biotin also?) It says NO artificial color/flavor/preserves/milk/lactose/starch/gluten/wheat/yeast/wheat/fish/sodium.
Basically free of all the stuff we need to stay away from. Sundown Naturals.
Hope this helps !
lori
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Re: Changes in hair
Reply #12 - 11/16/11 at 14:59:59
 
Nioxin gave me a headache from the chemicals or the smell?  I couldn't use it.  Rogaine lowered my BP and caused palpitations.  Biotin 2 pills/day for years did nothing.  Specialty hair loss multivitamins did nothing.  I hadn't blow dried my hair for years, so a hair dryer did not do any damage.
I have stopped all hair products and dyes.

I look ridiculous now compared to the full head of hair I used to have.

After trying many different solutions, including sitting under a special red laser light for 30 minutes 3X/week, I'm going to get a hair restoration system, basically a well-made hairpiece.

I've tried everything.  I cannot believe I'm dealing with this in light of the fact that I never thought for one nanosecond that hair loss would ever be a problem for me.  Well it is, and I plan on doing something.

I find this totally depressing.  It's bad enough having health issues, but why does my hair have to look so pathetic?
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Re: Changes in hair
Reply #13 - 11/18/11 at 12:21:02
 
Hair loss can be due to a lot of different reasons.  Could be due to hormonal fluctuations, vitamines/nutrition, stress, etc.  We also tend to shed at different times of the years... just like those animals!!!!
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DeborahW, Founder
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Re: Changes in hair
Reply #14 - 11/19/11 at 15:33:27
 
Jill,

That is definitely something to check out. I mentioned it to my doc (also my good friend since 7th grade!), and she said that I need to have a bunch of blood tests to check on things, specifically thyroid and hormones. So, that is on my to do list!

I also bought the Biotin made by Sundown Naturals (she and I found it around the same time. Funny!). It is free of preservatives, etc. Then I got some One a Day multivitamins. Now all I have to do is remember to try them (one at a time, though. It is wise to try only one new thing, such as a vitamin, at a time so that you can identify if it bothers you.)
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