Humiliated By Hair Loss

by admin on April 30, 2009

I went to an allergist today because I have really been having a lot of skin issues, itchiness, eczema,  a lot of contact dermatitis around my mouth, itchy eyelids, itchy eyes and of course my usual asthma. I am always apprehensive about going to a new doctor because the patient form you have to fill out always has that place that asks you to list the “current medications” you take, and putting “Aldactone” on there always triggers the question, “You take Aldactone? What for?” So I get nervous going to new doctors.

Off I go to the consultation, the doc doesn’t even ask anything about the Aldactone, moving full speed ahead, talking about my allergies.. blah blah blah. Then he gets to the part where he wants to suggest the asthma/allergy medication, SINGULAR. Well I already know from previous searches on that medication, from previous docs trying to get me to take it, that some women complain that it causes hair loss! I had resolved myself into taking Advair ( https://www.womenshairlossproject.com/hair-loss/advair-muppets-poor-health-decisions/ ) because I had previously taken that without any issue to my hair, but this? The unknown?

I had to bring up my concern with the doctor. I HAD to let him KNOW, what was going through my head. So out with it, I told him that I suffer with hair loss, hence the reason I taken the Aldactone, and that I had read on the Internet that it can cause hair loss. He seemed to not focus too much on my personal hair loss situation, which, was good, but then he sort of made light of it, in a quasi mocking way “Well if it’s on the Internet, then it has to be true.” He said he never heard of an instance of singular and hair loss. Well neither did my gynecologist that gave me one of the highest androgen pills on the market, that started this whole mess. He proceeded to pull out the insert of the singular medication and looked in the side effect area, and pointed out that “hair loss” isn’t listed there. Hummm, that doesn’t mean it can’t happen or hasn’t happened to people. I don’t think most doctors know how to react to a woman with hair loss, in all fairness he was a decent doctor, he spent a lot of time with me and genuinely seemed interested in helping me treat my allergies/asthma. This is just a separate and unfortunate issue.

But, back to the point, the title of this post. When I had to bring up that “I HAVE HAIR LOSS,” I felt so small, so humiliated, like I was running around the office with my shirt off or something, actually I probably would have preferred that over telling him I had hair loss. I was so down when I left the office, so defeated. I didn’t feel liberated or empowered for sharing that tid bit of information, I felt ashamed. It saddens me to think that no matter how far I feel I’ve traveled, I am reminded that it isn’t quite far enough. I know I should not be ashamed of my hair loss, yet I had those feelings anyways. I guess it’s time for a little self-reflection.

{ 21 comments… read them below or add one }

Jeni May 1, 2009 at 1:56 am

I tell every doctor I see that I’m extremely concerned about my hair loss and don’t want to take anything that interferes with it. Most doctors just don’t think it’s a big deal, which of course makes it so frustrating, but they do make me feel stupid for caring that much about it. Ugh. I was actually researching Zyrtec yesterday because I gained 15 pounds this year and was trying to figure out the cause, since I cannot for the life of me lose the weight. It turns out sooo many people report Zyrtec as having weight gain and hair loss as a side effect! Same thing with Claritin, Singulair like you said, and most other allergy medications. Ugh it’s a horrible. I recently became allergic to cats and have 3, so I have to take something.

Also, I haven’t spoken to you in a while, but I finally found a doctor that realized I do indeed have hypothyroid (which went undiagnosed for 7 years), so I’ve been on Armour for a few months now. It hasn’t really helped the hair loss or anything else too much, but I feel like at least I’m doing something. At least I’m not crazy like every other doctor said I was.

Also today I finally came to terms with the fact that I have both chronic TE and AA. For the last 7 years I was convinced I just had TE, but given the fact that my dad is bald, and my mom now has extremely thin hair, I have to face it. For my whole life my biggest fear has always been hereditery hair loss, and I today I realize I am living my biggest fear! I don’t know what to make of it yet, but most people don’t face their worst nightmare. In this motivation book I’m reading, it says that you can’t get over your fear until you live it, and here it is. Yay:(

Chrissy May 1, 2009 at 5:22 am

Hi – I know exactly how you feel. No matter what I put into my body these days, whether it’s food or meds, I think about its potential effects on my hair. But, if it makes you feel any better, I am a pharmacist and I did some research on Singulair. In my three most trusted and complete references, as well as an online literature search, I found nothing stating that Singulair has alopecia as even a rare side effect. Of course everyone reacts to medications differently, but take that into consideration. I also am an Asthma Educator, so I know the critical importance of good asthma control. Have you looked at environmental interventions to help your asthma/allergies?

(((HUGS)))

Jeni May 1, 2009 at 8:10 am

I haven’t done any hair loss research in a long time, but I’m back at it. From someone in your community, I found this link to this Trichology website that has some seemingly great articles: http://www.hairlossclinic.com.au/index.html . Just when I thought I was doomed to inevitable genetic hair loss, this website explains in great detail the hair loss link between low iron, thyroid issues, and nutrition. It also explains why I think I could have chronic TE and AA, but it could actually be the same thing. Anyway, maybe everyone (but me) has seen this site, but I am slightly hopeful because I do have persistent low ferritin, and thyroid issues. I just don’t have money for more tests and doctors:(

Angi S May 1, 2009 at 8:30 am

I have so been there and done that….Before I got my wig (I’m almost bald now.), I went to an allergist who knew the doctor’s practice at which I worked. He looked at me and said, “Wow, I heard (name of practice where I worked) were tough on their workers, but I didn’t know they’d make you pull your hair out.” He had a nice laugh about that. I’ve never been that humiliated and I still cry when I think about it.

BethS. May 1, 2009 at 3:41 pm

In response to Angi S., I cannot believe a doctor would say something so insensitive. Imagine making a joke out of something which is probably the worst thing that ever happened to you. I wish I was there to make a “small penis” joke or something. It makes my blood boil just thinking about it~!

Helen May 2, 2009 at 6:49 am

As someone with long-term hair loss and autoimmune disorders – which I believe allergies are too – I regret to report that, evidently, hair loss can be a side effect of just about anything. Often it is just a side effect of a side effect; that is, the immune system overreacts to a medication, and at the same time, because it’s so overactive in general, it rejects the body’s own hair as well. Among other lovely things.

Most doctors don’t know much about this other than allergists and autoimmune specialists. However, they should be sensitive. People can indeed make you feel things, and in a personal-service profession such as medicine, it is all the more incumbent upon them to remember that.

Also, I think an allergist really should know about this possible systemic effect (it wasn’t news to mine), and IMO no doctor should be so little schooled about the effects of a drug they want to prescribe as to rely upon its patient information insert. So I have some qualms about this one’s competence to treat you, as well as doubts about his compassion.

Offered in the hope it may be of some use, it’s helped me to mention my hair loss right up-front rather than waiting for it to possibly arise. I include it in parentheses when listing spironolactone as one of my drugs taken, and raise the issue immediately when discussing a possible new medication. This has given me a greater sense of control, however illusory that may be, and the largely matter-of-fact responses received have also helped minimize that irrational sense of shame. So maybe that’ll be a little helpful. Best wishes.

Angela May 2, 2009 at 9:05 am

Hi Hon,
I’m sorry to hear that the doctor was a little patronizing to you. Its funny that he would take out the insert about the side effects and “show” that there hair loss was not a side effect because that doesn’t prove a damn thing. When companies conduct studies and gather data, they do not have to put all the data in, especially if the side effect is on the low side. On top of that, we don’t know what kind of studies were conducted and whether they were measurable scientific data or subjective surveys. So how do we know for sure?
I used to have to take Singular, Advair, Prednisone, Morphine and Zyrtec all at once, but my hair loss was already active, so I’m not sure if any of those things caused my hair loss to be even worse.
There is definitely nothing to be embarrassed about. The doctor is the one that should be embarrassed because he had to actually take out the information and look for himself FIRST and then show you. It seems that the anyone that wishes to inform themselves about medication and side effects is automatically questioned by a doctor. It almost becomes a way of dismissing men and women that may come with questions.

lisa1969 May 2, 2009 at 2:46 pm

Hey, Y.
I’m sorry this happened and I’m sorry you feel down after it. I totally get it and have felt the same way many times. I’ve thought about how I wouldn’t be embarrassed if I had diabetes or some other chronic condition. I’ve never been embarrassed about telling people I’ve had issues with skin cancer. So why is this different? I don’t know. But for me, it makes me feel less than, if that makes sense. I’ve long believed that we, as patients, know more than doctors when it comes to his issue. After all, it’s our bodies this is happening and we have a vested interest. I hope you find some relief from your asthma and other allergies with a drug that doesn’t make you concerned about losing more hair. Hang in there, my friend.
Lisa

admin May 4, 2009 at 3:12 pm

@Jeni, Chrissy, Angi, Beth, Helen, Angela and Lisa

Thank you so much for writing to me, your support means the world to me, it really does.

@Jeni – I am so happy to hear from you! And I’m glad you were able to finally get a definite diagnosis for your hypothrodism. I’ve previously thought about switching to Armour from the synthroid, but then I worry any switch will make things worse and I just can’t deal with it. I don’t know why doctors fluff off the hair loss thing. I mean the doc I saw was VERY bald, you would think he would have had a little understanding and compassion. And speaking of the Zyrtec he suggested I take that as well.

I am both sorry and proud of you for your self realization. It’s a hard pill to swallow to accept we have androgenetic alopecia, I had convinced myself for quite some time that perhaps it would just all return spontaneously. I’ve come to realize that isn’t going to happen.. but I would love to just keep what I have for as long as possible :)

I am glad you stopped by, thank you for commenting on my post.

@Chrissy – OMG thank you so much for that information! Seriously since I know you would never lead another hair loss gal astray, I trust your words. You are right everyone is different but the fact that there is no documentation of that as a side effect is pretty positive. I’m still debating over it, and haven’t yet taken one pill. I was pretty devastated when they discontinued the CFC inhalers, in fact I stockpiled them from a pharmacy in ohio before 12/08. I’m set for awhile. The new HFA seem to do nothing for me, pharmacists and doctors say it’s in my head since you don’t have the same strong propellant, but I’ve tried them repeatidly with little success. What were you referring to as far as environmental interventions?

@Angi – I’m so very sorry that happened to you, that is just awful and beyond insensitive. What is wrong with people? Don’t they see or THINK how painful this is for us, would he make the same crack at someone with a disability that was considered taboo to joke about. Absolutely not. They should have hair loss sensitivity courses for doctors.

@ Beth – I totally agree with what you said. Sick that people can be so insensitive.

@ Helen – Thank you so much for your insight, everything you said makes so much sense. I thought it was quite nutty for him to slice open the insert, so that he could show me it wasn’t listed. GRRRRR. Just like he joked about “Well if it’s on the internet then it MUST be true,” I should said well “If it isn’t in the patient insert, well then I guess it could NEVER EVER EVER happen” Like the 3 sentences on the side effects encompass all that can occur to any human being.

I may follow what you do, and in the future just lay it all on the line and put in on the patient form about the hair loss. I just seem so much more content on letting them think I have high blood pressure. Maybe now that I am getting older (31) they think that could be a possibility, but I started taking this at 21. Not too many 21 year olds have high blood pressure.

Thank you again for your comment.

@ Angela – My Sweet! I told the doc while he was pulling out the insert, that it probably wasn’t going to be in there, but that it was still a big concern of mine. Nothing, Nada, No real reaction to my fears. ho humm. So that was quite the cocktail you were on, your lungs must have be clear as whistle on that.

Hair loss is so uncertain and so not well understood, especially women’s hair loss, doctors definitely should be willing to admit their own short comings in the knowledge of it instead of fluffing the whole thing off. I suppose next time I should take print outs of the stories of women that have believe that their own hair loss was directly related to the usage of singular. That probably wouldn’t be well receive either.

@Lisa – I definitely understand. That is the feeling I get as well, and why I just don’t want to bring it up with any doctor. I feel small, and less than, deficient. And I know that is totally silly but my body reacts that way anyways. I ultimately don’t know what I’ll decide to with this medication. I want to TREAT my asthma, but i don’t want to drive myself insane worrying that it is making my hair loss worse. There must be one asthma drug in the world that no one has every reported any hair loss as being associated with. I wonder if you could find hair loss as a part of everything like googling something silly like, “Dirt and Hair Loss” or “vegetables and hair loss” LOL that’s what I do with anything I’m gonna take, any vitamin or drug. So in this case I googled “Singular and Hair Loss” and that’s all she wrote :)

lucy May 4, 2009 at 5:44 pm

I have been suffering from hairlos for 5 years. Imso frustrated by all these drs. that say its no big deal. Has anyone checked their vitamin D level? Mine is a 20 & my daughter is 15. She is also losing her hair and shes only 11.

Lucy

Melissa May 5, 2009 at 8:21 am

Thank you for your post. It makes me feel not so alone. I have a similar problem. I stopped taking my singulair two months ago – how is it working out for you? I’m still waiting for my hair to come back.

Jennifer May 19, 2009 at 7:13 am

I can totally relate and have felt the same shame, Jeni. I think most Doctors frown on anything on the Internet (Or the fact that we can educate ourselves?) If you had said “I got a book from the library” would his reaction have been different? Continue to educate yourself and TRUST your instincts about what is right for you. The truth is while Doctors are highly eduacted the can’t possibly know everything about every drug available – and I can’t really see trusting explicitly the info on the pamphlet produced BY the drug company itself. I think it is sad that most Doctors don’t work with their patients as advocates. I also believe that is is reasonable to think that how you feel about your treament can effect the outcome and if you feel that something is wrong for you there may be a good reason for trusting your instincts. Good luck with finding what is right for you.

KAWAWA June 4, 2009 at 3:41 am

I am sorry that telling made you feel that way. Forced “outings” are never fun. I understand really, each time I go to the doctor or the dentist i wonder if they will see my topper. I am certain that the dentist can tell, she gets closer to me than any other person in my life that isn’t related.

I have an appointment today with an allergy clinic. I have decide to take shot for the next couple of years so I can live the rest of my life without all this allergy stuff. I hope it works, it did for my mom.

Take Care

Vicky June 10, 2009 at 4:38 pm

Hello for those who said they are taking aldactone has it helped your shed? do you have AGA? I have been taking spiro for 3months and no changes yet in my hair. Im very scared it wont help me and am curious to see if it has helped those who are taking it and for how long. Pleaserespond back thanks so much

Christy June 11, 2009 at 5:44 pm

I am sooo sorry you felt so humiliated. I’ve had a couple of these moments as well, mostly since I stopped wearing wigs and started wearing scarves. I will never forget the humiliation. But I can also say from experience that you will get past it. And you will be stronger.

Viv June 13, 2009 at 12:26 pm

I have been facing hair loss too since I was 16. I used to feel humilated as well by others.I tried to consult many doctors and used many medicines but none of them worked.Then I came across this herbal shampoo named as Zulvera Shampoo (herbalhairshampoo.com). Within a few weeks, I could see a positive effect by using that shampoo and that shampoo really worked for me and made my hair grow again and also made them smooth.

hannah June 28, 2009 at 9:21 pm

Hi there. I have been recently doing a lot of research about allergies for my daughter. There is a lot of talks recently about food allergies. These type of allergies are not IGE rather IGG or delayed kind of food sensitivities. Allergy specialists usually test for IGE or fast respond allergies and don’t believe in IGGs for delayed allergies.
I became interested in this issue when my daughter (3.5 yo) first had blood in her stool for awhile. We removed caw based milk and it went away. We then went to allergy specialist who did some tests and said no allergies. We went back to milk, but he was always bloated, and developed asthma. I removed dairy again when she was 3. Coughs are almost completely gone.
We are seeing an alternative dr. My pediatrician laughed at me when I said I was going to try a dairy free diet. But I am seeing no more coughs. Asthma is completely gone.It doesn’t hurt to do an elimination diet for a few months and then go back gradually to see if your symptoms change.

Kirthi August 21, 2009 at 9:28 pm

Hi! I can empathise with what happened to you. My physician, who I turned to first about the hair loss, laughed at me and then said something along the lines of “It’s the newfangled shampoos and conditioners that you girls use. Women in my time never had these problem. You should oil your hair everyday.” I live in India where masses of long, luxurious hair are commonplace and people believe that oiling your hair keeps it healthy and lush. No, no it doesn’t.
What worked for me was educating, through gritted teeth, my doctor about my alopecia and telling him what it meant.

Paddy January 29, 2011 at 10:18 am

Hi,

I used Singulair for a year and a half for my allergies (dust allergy, itchy eyes, mouth – you name it) and now have developed a large bald spot behind my left year. My dermatologist said that it could not be Singulair but having ruled out (most) other triggers, I’m convinced it could be one.

Paddy

Vicki May 9, 2012 at 6:24 am

I’ve been searching the internet on hair loss for quote a few years. For the record, I did not have hair loss until two months after beginning Singulair back in 2005. Most the hair I lost was at the temples and front with overall shedding. The Singulair (or Singular as some call it) is the only thing that was different. My hair loss was enough that I knew it was from this allergy medication even though they do not show it as a side effect. I found other people in online forums (in 2005 when this happened) that felt Singulair WAS the problem. Drug companies do not want to show this as a side effect and it may take years for them to see that it does effect some and not others. Anything we take has the potential to alter the delicate balance of the body.

Shani October 9, 2015 at 1:41 am

My asthma has greatly improved by using a salt pipe, I stopped montelkast due to har loss and keeping me awake at night, it did nothing for my asthma! I haven’t had any asthma simptoms since using the salt pipe(inhaler) and have not needed any inhalers since I started the salt pipe. My peek flow has gone from 340- 410 in a month. I have more energy and feel great! Do some research on salt pipes and lamps and you will be amazed at this great NATURAL therapie.

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