hair loss?

    • Anonymous
      March 4, 2010 at 4:52 pm

      does anyone know if hair loss/thinning is a result of gbs?

    • March 5, 2010 at 1:41 am

      I ‘shed’ contantly. That 100 hairs a day thing…mine is way more! Have had an issue with it before GBS but has definitely gotten worse and goes in spurts. I know some meds can be a cause, stress, etc. I can’t pull my hair back in a clip without the risk of losing what seems like a handful. Not sure if it is related, but I certainly don’t want to end up balding…hubby said he isnt into bald chicks 😮

    • Anonymous
      March 5, 2010 at 10:13 am


      You can see my post “Hormones?” under GBS because I was just asking the same question last week and am having the same problem. You might want to get your thyroid and hormones checked, but the consensus seems to be that GBS stresses the body so much that it does cause hair loss. Hair loss is caused by hormones, and I think that GBS really affects women’s hormones. I know mine are totally out of whack. I am actually worried about early menopause (I am 38) and awaiting hormone tests. If not, I think it should regulate itself again, but probably takes a long time.

    • Anonymous
      March 5, 2010 at 12:42 pm

      thanks for the reply. my friend goes for chemo and she was told to take biotin (over the counter) for hair loss. i dont know if it will interact with the neurontin so i am stuck. will make appt with dermatologist and hope she has a clue

    • Anonymous
      March 5, 2010 at 12:53 pm

      Good luck Sadie…I have yet to find a doctor who has a “clue” about GBS. Must just be my luck…;)

    • March 5, 2010 at 1:02 pm

      Biotin should be perfectly fine with neurontin. It also is supposed to help with keeping your natural color…i.e. if you have greys.

      as for female hormones, Dr. Parry said they definitely do affect GBS residuals. Now I do know my stuff has changed since getting sick, but I also had an ovary removed. Dr swears the other one will “pick up the pace” but I have noticed a lot of difference hormone wise. Also told me hormone tests are a waste of time considering they fluctuate daily. I dunno. Lighter, shorter monthlies but they cause residuals to flare up and I feel so crummy. I too am wondering about early meno…and will it cause relief or constant residual problems?? Oh and Parry also said ANY type of hormone in our bodies can stress out our resids. Something to keep in mind.

    • Anonymous
      March 5, 2010 at 3:19 pm

      i have yet to find one as well although they want you to think they do. the neuro guy didnt want to see me after 1st post hosp appt and the gp is clueless. i had a really really really bad gbs bout as in: family, she is going to die so sign a dnr. but they didnt and here i am with drop foot and losing hair and an arm and hand that doesnt work.but could it be i have no drs involved b/c i am ok with respect to everything else and they dont know what to do other than defer to the physical therapist? will let you know how i make out at dr

    • Anonymous
      March 5, 2010 at 3:24 pm

      i had hysterectomy b/c of ovarian cancer in 1990 @45yrs. so i dont know about hormones in my body. i am hoping dermatologist has some information for me. will let you know. I am tired of finding hair everywhere and in everything! i had very thick, curly hair but in hospital they kept it up tight in a bun sort of thing. i couldnt move so i had no choice but i dont know if all that tight pulling damaged anything. they didnt wash it often, which didnt make me happy but what choices are there when you cant speak? and when my legs went out from under me when gbs first hit, i fell and split my head open on coffee table. they didnt wash the blood out of my hair until my daughter in law made a complaint when i came out of coma that the dried blood was still in my hair and was flaking off everywhere. quite disgusting I think

    • Anonymous
      March 5, 2010 at 3:52 pm


      I hear you about finding the hair everywhere. I can lightly pull at my hair and it will come out easily. When I take a shower, it is the worst. I don’t think we have to worry about going bald, but it is distressing. It is just like losing another part of your old self, your femininity.

      So sorry to hear about your bad experience in the hospital. Noone should have to go through that.

    • Anonymous
      March 5, 2010 at 10:15 pm

      And, hair loss IS a result. I went from hypo thyroid to hasimotos’ w/in two months of onset.. Altho it took another two years to actually diagnose it? Thyroid and vitamin deficiencies are key aspects of some aggravatiting components to ‘getting better’. Most docs aren’t well informed in the vitamin and mineral aspects of what we deal with? Nor, are they well informed about the side ‘effects’ that many of our meds can cause about hair and bone loss. I can’t give you a ‘formula’ to help YOU? I suggest you check out reliable sources on the web [not the commercial ones tho…] and see what you can find out to help you.
      When I’d had my onset? I had shed like a thoroughly shaggy and sick dog! I understood this because I’d dealt w/sick and malnourished creatures in prior lives… Best thing to do for yourself? Is to slather hypoallergenic goodies on you, treat your scalp with the BEST scalp and hair restoratives possible and go from there? Face it, something’s gone WRONG with your body…treat it as special w/special stuffs and it mite just feel better? Won’t heal or erase the problem, just keep it from getting worse. There ARE times? When ‘status quo’ can be a good thing? As,in not getting worse? Think positive, spoil your skin and scalp and see how things go… BTW? After onset? I had dandruff like huge snowflakes. Not had much dandruff before but this was alarming? Literally would slather lotion over my scalp to alleviate it to no avail. Go figger. Keep up the SELF-Spoiling! We need pampering in some quarter, afterall, don’t we? – homeagain

    • Anonymous
      March 6, 2010 at 10:14 pm

      Homeagain…you are so right. went to dermatologist today. she says it is caused by trauma to body from gbs and subsequent treatment for gbs. she also said the stress is adding to the cause and put me on multivitamins w/o iron. she also sent me for blood work re: thyroid. have to call next week to see what comes back. said no chemicals in hair like color. I highlighted my hair for so many years, that i forgot what it was to be a brunette. Now that i am not blond anymore, i am still not sure what it means to be brunette since there is so much gray!! what kind of hypoallergenics and hair restoratives do you mean? make a suggestion please………….

    • Anonymous
      March 6, 2010 at 10:51 pm

      Did they do a basic thyroid panel or a full AUTOIMMUNE one? There are different kinds, ya know? If not, ya know now! IF it is thyroid tho? Its relatively easy to ‘fix’ thru a medication. Just be dutiful and take it the SAME time each and every morning! Not to do so? Well, I can truly say…it’ll come back and bite you if it doesn’t! Thyroid is an easy fix….but it can take up to a year of dose tweaking to get things just right. Expect blood tests, at first bi-weekly, or monthly then on down to 2x a year forever. Small price to pay truly for knocking one other issue off THE LIST!
      One hint? I ALWAYS go to one lab for all my tests…I pretend I’ve NOT fasted prior to going to the doc’s offices [and often haven’t?] This way I can make an appt w/the lab for the workup and I can make a copy of the tests ordered [at home, of course] and also fill out a request for a copy of test results to be sent to ME! ..that way I know what’s going on? And I can make copies to give to my herd of specialists so they don’t have to ’round them up’ and I’ll know before they see the results what mite be ‘problems’. It works… it’s easy and I can set my own terms for being ‘blood-let’.
      Learning about blood tests is as much ‘fun’ as trying to learn about ‘nerve conduction tests’! Easier actually….sort of? 😮 Nuff said.

    • Anonymous
      March 9, 2010 at 8:25 pm

      got results of thyroid blood tests today. normal ,so i guess it is just waiting game for hair to stop shedding and start growing . so derm. said its what she said: stress and trauma to body from gbs. we’ll see.

    • March 9, 2010 at 11:49 pm

      sometimes it tales a while before the hormone issues show up in the thyroid, for example w/stress comes elevated cortisol, it takes a while of this happening before the thyroid physically is affected. Certain physical issues cause cortisol issues which cause emotional issues that result in cortisol elevation, that viscious circle. Just a thought, sometimes women stop getting their period when gbs occurs (hormanal incidentally) perhaps it creates a “pseudo” menopause until the thyroid starts functioning properly. Another way off idea, but what was your treatment? ivig? what kind, as some contain sugars and if you were diabetic or borderline not yet dx diabetic, maybe the sugars put you into a temporary diabetes, which diabetes can cause hair loss. maybe it is just plain old alopecia? Good luck!

    • Anonymous
      March 11, 2010 at 12:12 am

      Since GBS, I have pulled many a wad of my hair out of the tub drain after a few showers. It was at its worst the first year or so, and then my hair started to strengthen again. For a while my hair looked like male-pattern-baldness (on a woman). But then it started to grow back, only it came back with a lot of grey. My hair was brown before GBS, just the odd thread of silver in it. Now after almost 2 1/2 years, most of the pre-GBS brown hair has been cut off in hair-cuts. When I bend over, I can see the gray/brown area of my hair in a solid line newly grown from the remaining brown. So GBS aged my hair about 10 years. During little relapses, I still get more hair loss now, but generally it is recovering.
      Same thing with my fingernails, toenails. Lots of dents, ridges, bumps during onset and for the first year or so; then they began to look more normal; I have only the odd abnormal looking nail now.

      I craved protein after onset: ground beef, 2 gallons of milk every week, lots of eggs, cheese, cereal grains. My body craved what it needed to repair muscle, skin, hair and nails. It still does, and when I don’t eat these things, I lose more hair and my nails get weaker. Try not to worry; your body is trying to deal with the stress of the damage done to it, and it’s trying to strengthen and repair your muscles, and if it’s a choice between muscles and hair, the hair’s gotta go for the time being. First things first.
      Buy good shampoo, use conditioner sparingly and only on the ends. Use a large-toothed comb and treat it gently when combing out or blow-drying it.

    • Anonymous
      March 11, 2010 at 1:18 pm

      My hair always falls out after surgery and since I had 2 on my back lat year (May and Aug – 8 hrs each) I figured that was why my hairbrush is full. I bought Pantene shampoo for brittle / hair loss – in the blue cap – and it seems to have helped. I am trying to wash my hair less, and haven’t relearned the curling iron yet, so maybe that is helping, too. Is there anything GBS does not impact?

      A good hair cut, a little hairspray, and lipstick go a long way to helping the day feel better! Keep smiling and make a blessings list – that helps, too.


    • Anonymous
      March 11, 2010 at 3:02 pm


      I just had my hair colored a week or so ago and have not noticed any more or less hair falling out, about the same. I am still young so I am not about to walk around with grey hair just yet! Just wanted to let you know you should be ok if you get it colored.

    • Anonymous
      March 11, 2010 at 3:10 pm

      yes, my hair is turning from brown to gray real fast. i used to have brown hair with just a gray streak in it in the front. but now the hair that’s left is turning gray. i presume if anything is growing back that is coming in gray too because that one gray streak has lots of company now. i use pantene also but i will try the one you recommend thanks. it may be gentler than the regular pantene.

    • Anonymous
      March 11, 2010 at 9:46 pm

      Hey girls, did you ever see the movie “How Green Was My Valley”?
      In it the mother and her small son fall into an icy pool of water, are later rescued after being chilled & frozen to the bone, then both become crippled and bedridden for months, the mom’s hair turning grey at the time of the trauma. It’s a really good movie, about the strength it takes to handle what life throws at you.

    • March 11, 2010 at 10:42 pm

      I don’t want to jinx myself, but with all the stress in my life I still don’t have one gray hair!!! Now weight is a different story, I have gained MANY pounds instead of gray hairs with this stress!! Gray would be alot easier to get rid of!! 😮

    • Anonymous
      March 12, 2010 at 4:48 pm

      Well, I had my hormones checked thinking that was causing the hair loss and they are all “normal” once again, so I think that the nerve stress/damage and the weight loss and all of that is what causes the hair loss. Hopefully, it will stop at some point!! If anyone has gone bald from GBS, let us know. 😉

Hair Loss

    • Anonymous
      September 24, 2008 at 2:30 am

      I’m experiencing hair loss..not sure if it’s from the IVIg or meds? Since the CIDP, I’ve been taking Atenolol, Maxide and Levothroid. Also Tylenol-3 and Phenergan for migraines/vomiting as needed. In addition I was taking 100-300mg of Neurotin as needed up until last week (I quit taking it as it didn’t help–I get a tight/numb feeling not pain). Any thoughts? I asked my doctor and she gave me a wishy-washy answer that didn’t really shed any light.


    • Anonymous
      September 24, 2008 at 9:34 am

      Hi Ally,

      Sorry you have this issue. I think that thyroid problems commonly have hair loss associated with it. I think it is hyPOthyroidism that is the culprit, and I assume you have that since you are taking Thyroid? How long have you been on it? I had thyroid storm a few years back, and they over-corrected me so I was pretty hyPO for about 6 months. I did get hair loss and since my hair is so thin anyway, I was not happy! It took many months but now I think it is actually thicker than before, thank you God! Hope this helps some!


    • Anonymous
      September 24, 2008 at 10:29 am

      I am not currently taking any medication for my CIDP other than IVIG every few weeks. For a long time I have been losing more hair than would be “normal”. My hair still grows and I haven’t noticed a significant change in the overall thickness of my hair but I still those a lot of it everyday.

    • Anonymous
      September 24, 2008 at 2:20 pm

      Ally, I have had an increase in hair loss since cidp. I am a hypothyroid and on levo also, but since aug 05 the amount of hair loss is probably double that it was prior to cidp. As long as my silvers come out and grow back black, I have accepted it.:) My dr doesn’t have any explanations for it either. Just make sure your levels are within range. Take Care.

    • Anonymous
      September 24, 2008 at 3:31 pm

      I used to be hyperthyroid, but had radioiodine treatment back in 2000. I’ve been on Levothroid/Synthroid since then. :confused:

    • Anonymous
      September 24, 2008 at 4:56 pm

      I did a Google search for side effects of Atenolol.

      A side effect to the Atenolol is reversible hair loss.

      Here is the link: [url][/url]

      Look on the 2nd page for that info.

      Hope that helps.