It's sinking in

[BlazingHeart]

My hair is falling out, and badly.

I noticed I was losing a little more hair than usual around Christmas, and then by mid January it had sped up to me losing a LOT of hair every day. At this point, I've lost about half of my original circumference - I started out at 6.2" ponytail circumference a couple years ago, and now I'm down to a little under 4". I know it's because of my autoimmune disorder. I've been so stunned by the whole thing (and so foggy from the autoimmune condition without any medications, because I reacted badly to one so my doctor pulled me off of it and didn't want to start something new right away) that it just hasn't...sunk in. It still feels kind of dream-like. Not nightmare-ish, just...not quite real.

A small part of me is kind of happy, because my hair is finally down to a more normal circumference, so it's much MUCH easier to put up, and it weighs a good deal less. But I'm afraid that I'm going to just keep losing my hair - which I will for at least another 3 weeks until I can see my doctor again. And I wonder, when all of this is done, am I going to want to just cut off all of my hair in the hopes that it'll all grow back in together? That would make me a bit sad, because I have all these beautiful toys I wouldn't be able to use. Shoot, I'm already sad that I can no longer use the beautiful November flexi of the month that I bought. An XL holds my hair now, but I only have one of those (and it's not one I especially like - I bought it because it was inexpensive and I was trying to figure out what size I needed a couple years ago).

Anyhow, I'm feeling very mopey right now.

On the plus side, I was part of the self-made swap, and the gifts my gifter made will all still be useful, even if I cut my hair short, especially the super-cute hat she made me. I would've been pretty woeful if she had made me the kind of big forks and sticks that I typically need.

[SleepyTangles]

Hi BlazingHeart, I'm sorry to hear this :grouphug:
I don't know anything about auto-immune disorders, but I had iron-deficiency anemia and I am still scared whenever I see that my hair shedding at a big rate. My two cents are to ask your doctor about it, like you tought, and then do a blood test.
Don't let this get you depressed: stress is a bitch, and makes everything worse.

If your hair isn't scraggly (hardly, with a circumference of almost 4 inches :o!) I'd just maintain your lenght until everything has thickened out a bit.
Keep us updated!

[restless]

I dont have any good advice, I just wanted to say Im so sorry to read youre going through this and I hope that the doctor helps you sort it out fast :flower:

[Skade]

Sorry you are going through this. I had a major shed after illness a while ago and I was freaking out about it. Hope it gets better soon. Take care! :blossom:

[mrs_coffee]

I don't blame you for feeling mopey. That's a good amount of hair, and dealing with the autoimmune stuff as well. It's a lot.

[ravenheather]

I am sorry to hear about your health problems. Try to see the bright side, you still have thick hair. I would not think that a chop would be necessary even with a lot of hair loss. Your ends shouldn't be too thin as you regrowth hair. Just think of it as an excuse to buy some new hairtoys.

[woodswanderer]

Sorry you are going through this.:blossom:

[Amapola]

I'm so sorry - that is awful. Hugs to you.

On the other hand, my pony is less than 2" and I still have a nice head of hair that I really enjoy, so I would say there is hope for you to be happy with your hair, even if it's different than it was. Mine is different too than it was when I was 18 years old. I wish it was like that now but it isn't. I'm trying to focus on what I have, not on what I don't have, and I guess that's really the only advice I can give. Your doctor should be a lot more help than me!

[BlazingHeart]

It is pretty scraggly at the ends. They were already thinnish from mechanical damage, and I'm definitely losing more of my longest hairs than the shorter ones. At the least, I'm going to need to take my hair back to tailbone or so. I can see that my hair doesn't look patchy or see-through, but it just doesn't look like MY hair, you know? I've had a braid thicker than my wrist since I was 6 or 7 years old (well, whenever my hair was long enough to braid). And all the hair loss is making for terrible tangles.

Thank you all for the well-wishes. I'm more upset about what this autoimmune thing is doing to my ability to think, sit up, walk, and use my hands. The hair stuff is just adding insult to injury. I'm getting frustrated with how conservatively my doctor is treating all of this. I want my body behaving better and my brain working like normal and my hair to stop falling out!

[BlazingHeart]

I guess it's not all bad...I have some toys that were too small for me, but fit now. They're mostly toys I bought when I was new here, before I realized that the reason my hair wouldn't go up easily wasn't my lack of skill, it was how very very thick it was. 4" FPL had seemed reasonable, and I bet for most people at waist length (which I was when I bought that fork), it is reasonable. Same for my first Squiggly. My fiance had just bought me a new one in holly for my birthday, end of November, but with my hair falling out, it's way too big. The madrone one I bought a couple years ago is a perfect fit, though. The same for the pink ivory Baerreis Finny I bought and LOVED even though it was always too small. I've offered it in swaps a couple of times, and thought about posting my own swap post and selling or trading it, but I keep putting it off because it's such a pretty fork.

And, well, as I mentioned earlier, it really is a LOT easier to put up now that it's a more 'normal' thickness instead of my typical head-eating buns. It doesn't put as much pressure, it doesn't unravel itself as often, and it doesn't start wobbling and fall out from the sheer weight. It's also much less likely to cause a headache.

It's just...very weird not to have my monster-thick ponytail. I think the thing that's annoying me the most is my hair everywhere and the major tangles, both from how fast my hair is falling out. I have to pick the hairs out of the bed and collect them off of myself, or I can't get to sleep because the hairs resting against me itch/tickle. The ball of shed hairs from detangling my hair this evening, when rolled up tightly, is as big as my thumb. The sheds grab on to the rest of my hair as they're going out, and make for really awful tangles - I can't remember having tangles this bad since puberty. I had a couple of years of really, really badly tangle-prone hair when I was going through puberty, and then it just...stopped tangling if it was above waist length.

I just have to keep reminding myself that my hair doesn't look thin to anyone around me, not even my fiance who is used to seeing the big thick hair. The only time he notices is that he can see my buns are smaller than they were. I can live with that.

[eha]

i have an autoimmune disorder (MS) and im a nutritionist that focuses on all things autoimmune. you can do a lot even without any meds - i never took any and with my clients, the aim is usually to get them off meds - contrary to popular belief, once the autoimmune pathway is found out and usually its to do with the leaky gut/immune responce/bloodbrainbarrier-axis then lots can be done, through simple (ok maybe not as simple as that) nutrition to stop the regressions and flares.

[Merrybethable]

You are lucky you have had thick hair to start. However it is so hard to lose something that youh have always had as part of your identity. Make the most of your hair toys and know that you might be different but you stilll can be beautiful.

[lapushka]

You're taking this a really positive way, and looking on the bright side! I would simply be devastated. Lots of hugs to you. :grouphug:

[truepeacenik]

Blazing heart, it's always bizarre to adapt to new normals. And accepting it is a huge step.
Is your prognosis such that you should plateau in regard to the shedding?
If so, think about how you adapt to (to most of us) normal hair. You have found that more things work with smaller pony circumferences. Revel in that.

Do think ahead for new growth frizzies. I have some now, from a combination of health issues and general stress sheds and it can be daunting as I never look very polished, to my own eye. I also went down about a third. It seems to be coming in, but a new cycle would undo my gains pretty easily. (Mine isn't auto immune from what we can tell, so far. But I don't have a real and concrete label to put on the syndrome.)

Hugs to you. It sucks and it changes. And we can adapt.

[Beborani]

Blazingheart I was where you are now 30+ years ago--going from impossibly thick hair (I am Indian, the land of thick long hair and even there I stood out). Unfortuntely when the shedding stopped I did end up with scalp showing in a couple of places but I was also rebelling against societal standards of beauty--long thick hair! So this shedding and loss did not bother me. I used to keep getting sympathy from all acquaintances that irritated me but a few years down the line I moved far away where no one knew my original hair, so I was no longer reminded on daily basis of my loss. I did not miss it and was relieved not to deal with the weight and occasionally I would tell skeptical people I too had lot of hair--but really there is so much more to life than hair that I never cared. Fast forward 30 years and extra shedding due to menopause ((?) made styling my hair very difficult so I tried rogaine and lo! I am getting all the lost hair back with vengeance. I am not suggesting you use rogaine or that you will lose lots more hair but letting you know there IS life, good life even if you lose a big part of your identity and you may get it back--future technology can only get better. It is more important you take care of your health and find treatment program that works for you. Hugs

[BlazingHeart]

I'm really trying not to let myself be too negative about my hair changing. It's hard, though, and I do a fair amount of just totally ignoring my hair so I won't be sad about it. I know that's leading to tangles and the tangles aren't helping matters any.

eha, I might be interested in at least doing some of the dietary things that would help with the autoimmune symptoms, but I'd need to know a little more! In general, I'm rather reluctant to change my diet much, because I've already had to make so many changes due to my GI problems (I have both GERD and IBS). But if it doesn't feel too restrictive, it might be worth a try.

Truepeacenik, that's part of what's so frustrating about this - I don't know what the prognosis is re: losing my hair. I might be able to grow it all back, I might keep losing it, it might stop falling out any day now. It would be easier to adjust if I knew it would stabilize. As it is, it just keeps falling out and getting thinner, and it's upsetting.

Beborani, if my hair keeps thinning, I may ask about rogaine. I'm on so many medications that I generally make a rule of asking my doctors before I try anything new. I hope it doesn't come to that! Rogaine is not cheap, and money is rather tight around here.

[MandyBeth]

Few things (as I'm the autoimmune nightmare queen) -

Have you tried Monistat? AI leaves me prone to topical fungal issues.

I forget if you have thyroid issues, naming Hashimoto's. Get those checked, per my doctor, any TPO Ag level is needing hypothyroid treatment. If you aren't feeling hyperthyroid - ignore the T numbers and treat like hypo.

Check your B vitamins. Including stores. B12 based anemia can cause nasty sheds.

Related - get your red blood cells checked. Low throws similar B12 anemia symptoms. That was a huge issue for me (B12 anemia plus blood loss) and I lost hair like a husky blowing coat. It's taken me four years to get everything back to appropriate levels and you can see 16 months (of my growth rate) of regrowth now.

My hair sheds if my magnesium, iron (free and stored) or D get low, so that might be worth a check.

Have you tried the EDS supplement list? I want to say mira-chan has it. My joints feel much more stable, and that seems to have lowered my shed rate. Guess is my joints aren't hogging everything, so my hair gets some goodies, thus my body doesn't view hair as an energy drain so I shed less.

But - AI can be obnoxious terrors. They may be hogging everything, especially getting over the drug, thus nothing for hair, so shed happens.

[truepeacenik]

I'm really trying not to let myself be too negative about my hair changing. It's hard, though, and I do a fair amount of just totally ignoring my hair so I won't be sad about it. I know that's leading to tangles and the tangles aren't helping matters any.

eha, I might be interested in at least doing some of the dietary things that would help with the autoimmune symptoms, but I'd need to know a little more! In general, I'm rather reluctant to change my diet much, because I've already had to make so many changes due to my GI problems (I have both GERD and IBS). But if it doesn't feel too restrictive, it might be worth a try.

Truepeacenik, that's part of what's so frustrating about this - I don't know what the prognosis is re: losing my hair. I might be able to grow it all back, I might keep losing it, it might stop falling out any day now. It would be easier to adjust if I knew it would stabilize. As it is, it just keeps falling out and getting thinner, and it's upsetting.

Beborani, if my hair keeps thinning, I may ask about rogaine. I'm on so many medications that I generally make a rule of asking my doctors before I try anything new. I hope it doesn't come to that! Rogaine is not cheap, and money is rather tight around here.

Your pharmacist might be a good referral. Pop in and ask her opinion. Likely she knows everything you take, so she's going to know interactions. Often a pharmacist will notice something amiss when multiple physicians are prescribing.

[eha]

believe me Blazingheart, even if the dietary changes might seem restrictive to you at first, all of the restrictions are not forever, and those that are are totally worth it if they mean a full life with no autoimmune worries. I felt so intimidates about 13 years ago and then i just decided to cut the crap and just suffer through it, and soon enough i was finding lots of new ways to experiment with recipes and finally i got to a point where i was eating a more diverse diet with all my restrictions than i ever had before :D fast forward to about 2-3 years of strict restrictions and i could start adding back lots of things i had elliminated, and now i can be pretty lax with my diet presuming i keep away from the worst offenders that would start the cycle of inflammation and autoimmune attack all over. AND your hair can also regrow once the inflammation is cooled down.

[BlazingHeart]

MandyBeth - EDS supplements? I didn't know there was a list suggested (beyond the typical suggestion of things like glucosamine and chondroitin that don't tend to do much for us). Would you mind PMing me what you take? I don't know how my scalp would take to Monistat on it - I am rather sensitive to it, it irritates the heck out of my skin when I use it where it's intended to go. I have slips to have a bunch of things done - Iron, B vitamins generally, thyroid, anti-thyroid antibodies (for Hashi's), and a few other things that have slipped my mind, along with doing the inflammatory markers for the rheumy.

Truepeacenik, with the timing, I'm pretty sure it's my AI issues revving up after I came off the medications that were helping with them. Other than the AI medications, I haven't added or subtracted anything in...phew, ages. Has to be over a year. So it's either the autoimmune stuff or stopping the medications for the autoimmune stuff.

eha, it sounds like you're talking about mostly just getting rid of processed foods? Or am I reading too much into 'cut the crap'? If you could point me towards the sort of dietary changes you're talking about, I'd appreciate it.

[eha]

Blazingheart, nah cutting out processed food ofcourse is a place to start but it definitely is much more restricted than that. let me try and make it short: in addition to the genetic susceptibility autoimmune diseases need a trigger. sometimes it is a virus (which aswell needs aleaky gut background to be an autoimmune irritant so diet is a cofactor even in that) and sometimes it is protein that is regarded by the bodys immune system as a virus (as an invador) to be destroyed. when out gutlining (the epithelial cells that line the small intestine) is intact, such proteins cant find their way into our bloodstream whole. they are dismantled into amino acids that are recognised by our bodies. or the proteins that our body is unable to process (like wheat germ agglutinine WGA) and pass through the small intestine intact just get passed out. BUT these WGA(like), there are others, proteins can on their own cause damage to the gut lining both physically (they are very abrasive) and chemically (anything gluten/gliadine like reacts with zonulin (the "glu" that keeps epithelial cells together) creating gaps between the cells and letting these proteins pass into the bloodstreams. they can also pass through receptors straight thru. Some peoples immunesystems are overreactive by our genetics and trigger constant autoimmune reactions towards such proteins. This is where molecular mimicry comes in. the proteins in our bodyes are made up of same aminoacids as the WGA-like proteins. the WGAlike proteins on the other hand hav an ability (like viruses) to change the sequence (thus physical apparance) of the amino acids to mimic that of some bodily proteins (its kind of like a survival mechanism). So our Tcells that launch the immune attack and whose defence mechanism bases on recognising the physical form of a intruder and then "remembering" it in order to be able to attach themselves puzzlepiecelike to the intruder, can mistake the intruder and some bodily proteins = attack on out own cells = autoimmune disease. When our gutlining is damaged (leaky gut) and this happens also other crap (undigested proteins, fecal matter etc etc) can pass through the intestine to the bloodstream causing allergies and additional autoimmune reactions - those particles would normally be benign and stay in our intestines - but whan an autoimmune disease is present, that means also leaky gut is present, which means some particles (food items) are now reacive that normally would not be (and will not be once the gut lining has regrown). That will take elliminating ALL irritants and waiting. It usually takes something between 12-24 months to regrow damaged gutlining. for me it took close to 3 years :/. So thats the theory. I had to remove first glutengrains and the all because i was so reactive to all grain proteins, dairy, nightshades, exessive omega 6 and exessive fructose (i used simply too many vegetable oils and consumed huge amounts of fruits that can be inflammatory). now i eat dairy (mostly well aged or fermented goatsmilk based or raw) with no problems and can eat my way through an orchard if i want to so such measures are temporary, but i can never ever touch a grain in my life. i have learned to bake using substitutes because im a monster sweettooth. supplementation is key aswell because with an autoimmune disease and a leaky gut you adsorb much less from your food as a healthy person would. so L-glutamine (an amino acid that helps repair the epithelial lining), omega 3 in megadoses, same with vitamin D; vitamin K2, Mg, Zn, Se, Fe3+, a B complex, additional B5 and MSM and gelatine are my regulars.

[eha]

and that was making it short :P oh my and excuse my horrible spelling!!!!

[MandyBeth]

My list is crazy. PM me your email address and I can forward the article to you. I got it from mira-chan, and actually just got another email with it since I couldn't find the actual article anymore.

But if your thyroid is acting up - everything acts up. Yay. AI sucks.

[Beborani]

Beborani, if my hair keeps thinning, I may ask about rogaine. I'm on so many medications that I generally make a rule of asking my doctors before I try anything new. I hope it doesn't come to that! Rogaine is not cheap, and money is rather tight around here.[/QUOTE]

blazingheart, I cannot comment on your medical situation and you are right to consult your doctors on that. But I wanted to let you know that generic Target version (if you are in US) is fairly inexpensive--under 20 dollars for three months supply and it works just as well as Rogaine.

[Remi]

BlazingHeart-I feel so sad reading what you are going through. I am going through something that sounds similar. My autoimmune is destroying my thyroid and a few years ago I lost almost half of my thickness of my hair. My doctor did not give my any meds. He said there was no cure and there is nothing that can be done. I just suffered. Now my hair seems to have slowed down on the shedding, and is growing normally. As of Jan of this year, I have NO health care. I feel like I am in limbo. I just keep eating the best I can and study nutrition textbooks and take supplements. Please keep us updated, because I feel you might be helping others who are going through something like you are.

[jrmviola]

Im sorry your hair is thinning. Some of what i have to say may sound mean or blunt, i appologize in advance but thats not the way i mean it. Ive know three people with severe Auto-Immune disorders, and all have hair problems. This is what i've learned from knowing them a long time: (with regards to what they have): 1) your hair is thinning. It might leave you bald. You can see a doctor and take medicine or start to accept it as something you cant prevent. Enjoy the time with it you are given, have fun, and if nothing can be done, then nothing can be done. But it might never look like it was before. This stinks. 2) Dont get down, because it can literally make your body sicker than it actually is. 3) never discount good nutrition but always take alternate medicine as an unknown that might throw your meds off and make your body go haywire. Not that its a bad thing, simply an unknown that needs to be well thought out first. 4) Doctors are smart but only human and dont know everything. Do your own research independently. And always present it to them politely because they have ego's too. And rules.

Again, im sorry this is happening, but look on the bright side, you still have a full head of hair :D :D