[Anonymous]

#1076722

Hair — and nails — are considered “accessories” by the body. They are not essential to maintaining life. So, they are last on the body’s list to get nutrients. When someone is majorly ill, the hair and the nails are the first to lose nutrients vital to their health, and the last to see it return.

So, until you are healthy again, you won’t see healthy hair. (And having walking pneumonia did not help, either.)That does not mean that you cannot “do” something to help your hair along. You need to be making sure that you are eating properly — taking in nutrients for the body (i.e. if you are cutting calories to try to keep the weight off, you might be denying your body, and hair, vital nutrients) — getting appropriate rest (what your body needs, not what you want to give it time for) and appropriate exercise allowed by your doctor. No exercise allowed yet? Sit in a rocking chair and rock. Yes, it uses muscles. Or sit on the floor and stretch. Also, treat your hair kindly. Perms, straightenings and coloring are bad for hair. Even healthy hair can have a hard time with them. Any hair style that requires teasing will also make your hair look like straw (what doesn’t break off or pull out — I found that out the hard way!). Getting a style that requires less fussing to look nice can help. There might be other things you can think of, as well. But the bottom line is that your hair condition is fragile right now, like you probably are.

Unfortunately, nobody here can predict how long it will take for you to be normal again. I know that isn’t what you want to hear. What I found helpful was to look for “progress” not absolutes. For example, if you’ve got a thermostat in a pot of water, you can see the temperature rise; if you are waiting for the pot to boil, it seems to take forever. So watch for small improvements — like the TSH rising. It will keep you more upbeat (which can also help).

I know it’s hard. We ALL know it is hard. Sending hugs.
Bobbi — NGDF Online Facilitator

[Anonymous]

#1076723

Hi miaslean,

I just wanted to add one thing to Bobbi’s post — any change in thyroid hormone, whether it’s big or small, up or down (even if it’s travelling in the right direction to make you healthier), will typically trigger some hair loss. So even though your levels are headed in the right direction, it is an “emergency situation” to your body that your thyroid hormone levels are fluctuating more rapidly than would happen naturally. Once the level is stable (even if it’s not absolutely perfect), the hair loss should decrease. After you’ve reached (and maintained) healthy thyroid hormone levels, you’ll begin to see a lot of difference, but in between, even if you’re moving small degrees up or down the scale to find your own “perfect” spot, you may experience a little hair loss with each shift of your levels. It doesn’t necessarily mean you’re moving in the wrong direction.

Less messing with it will make a world of difference, and keep in mind that you will NOT go bald. Stress levels can have an affect on it too, so try and stay calm as best you can.

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1020324

Hi there…its not bad enough to have GD but then to have the weight gain and then now my hair is falling out. I am up a size in clothes and just trying to get over walking pneumonia and here comes the hair falling out. Im having a truly bad week and NO ONE understands in my life why I’m depressed. I don’t look the same or feel the same and its making this process very difficult to stay upbeat about. I had some BW done a month or so ago and my TSH levels were coming up but thats the only result my drs office gave me not my T3 or T4 and so Im just curious. I was just curious what time frame I can HOPE for to start feeling better, keeping my hair and losing some weight? Any thoughts….?

[Anonymous]

#1076724

Thank you to Bobbi and Ski for your informative and kind words about my hair loss situation. I am trying very diligently to keep my spirits up right now but with the weight gain and the hair thing it is getting harder and harder to do so. I am running out of clothes that fit as I have put on the weight so rapidly I can’t afford to replace them. Its getting frustrating to be honest and I had a moment this am where I yelled at my daughter(whos 4) and I cracked and cried in my underwear on my bed when my last pair of fat pants didn’t fit. The weight is in my hips and belly and it could not be worse to try and feel ok about yourself with it there. I have a professional job and can’t show up in sweats although I am close today and in gauchos that are the most comfy things I own so that helps. I find this disease is battling me and on me. People don’t understand it so they say the most retarded things to you and have trouble supporting you since it makes no sense to take meds to get better and yet you get fatter and lose hair. I understand that in some small way the hair loss and weight mean its working trust me i grasp onto whatever I can at this point. I was reading one of my books on thyroidism and the author suggested Evening primrose oil for the hair loss but dang i can barely afford my meds right now. UGH how come there are some days you could just complain and complain forever about this but we still battle on. Thank you for letting me vent!

I had mentioned to Jake about starting a support group in my area and emailed him my info but have not heard from him in over 3 months…any word from him would be good. The support group is DESPERATELY needed in my area. Thanks! Miaslean

[Anonymous]

#1076725

Hi Miaslean,

I don’t have any miracle solutions to impart, but I wanted to give you some credit for being a great WARRIOR. Jake uses that term to describe us because we must deal with SO MUCH!

I realize your budget is stretched, and so are your clothes, your emotions, and your nerves. We have all been there, trust me!

I would suggest that you visit a local thrift store or something similar to see if they have clothes that would fit. It is SO deflating to find that nothing fits, I have been there and I know. At least at a thrift store you wouldn’t be spending SO much for clothes you wish you didn’t need. And, let’s look on the bright side — when things clear up and you are back in your old clothes, you’ll be glad you didn’t spend too much on these. The important thing is to REDUCE the number of stressful points in a day. If clothes are stressing you out, you need to find a way to stop that. Believe me, it is DIFFICULT to look at those size numbers, but the difference in just being able to pull on a pair of pants or a skirt is worth it’s weight in gold.

It’s a great thought to begin a support group in your area, but I must tell you that our typical rule is to make sure the person managing the group is on the other side of treatment — it’s important that we have time for ourselves while we are in the middle of treatment, and you wouldn’t have that if you were trying to start and manage a support group. When you are closer to feeling good, that would be a better time to reach back and help those coming after.

STRENGTH to you (though I can tell you have plenty).

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1076726

Thank you for your kind words Ski. Its not fun no matter which way you try to handle it. I have been given a small gift of some kind though. I got my full lab report from my drs nurse yesterday and from what I see my T3/T4 have climbed into normal reference range which was not discussed with me by my dr so I was thrilled to see that. I don’t feel very strong most days and want to cry but have learned from harder circumstances that does not help but temporarily. I do appreciate the feed back on the support group but I still feel like it is a great loss to not have one here in Jacksonville, FL. The lack of understanding and support for these diseases is unreal to me. Why don’t people know more about this? Ugh I only knew of it vaguely because of my aunt and well now I know its so much fun. HA! Well thanks again for helping me keep my chin up.

Miaslean

[Anonymous]

#1076727

i’ve had all of the same problems. and yeah, i understand the weight frustration. it’s like i have this belly that isn’t mine! and hips. so weird.

hang in there. good to know i’m not alone..

stephanie

[Anonymous]

#1076728

Hi, I saw your message and first thought of myself. The first time I posted here was about my hair falling out. The second thing I noticed on your message was that you were from Jacksonville, FL. I also live in Jax. I went through the crying stage when all my clothes didn’t fit. I will tell you it gets better. I gave all my clothes that didn’t fit to my mother. She had to shorten them and about a year later and I wished I hadn’t. After RAI, PTU and then finally surgery I have lost 15 of the pounds I put on. I look alot healthier these days. But once you get things straightened out it does get better. The hair also get better. My hair sprouts are growing out good. I had spots at my forehead that fell out. I know it is hard and depressing for everything to change from what you are use to. I still get tired alot but I am happy I am not irritable any longer. I had alot of patience friends and I am thankful they were there. Good Luck and know things do get better. It is all just a matter of time.

[Anonymous]

#1076729

Thanks for the response. What a shame to have given all your clothes away. I have info on here on how to contact me, it would be nice to know there is a light at the end of the tunnel. feel free to get in touch.

[Anonymous]

#1076730

Hello everyone,

I am a 22 year old male and I was diagnosed with graves November of 2005. Since then my levels have stabilized and I am feeling very good. Back in November I had the typical weight loss (almost 30 pounds), the muscle loss and all that other good stuff. I am now experiencing some hair loss. I dont understand it because I didn’t have any hair loss when I was hyper, just brittle hair that felt crunchy when I put my hand through it. My hair seems to have receded slightly and when I brush my hair I can see follicles all over the sink. What’s the deal, is my Methamizole causing the hair loss? I don’t want to be bald by age 25.

Thanks for your responses,
-Luke

[Author]

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