[Anonymous]

#1160113

Manders

I lost hair by the BRUSH FULLS after RAI, but that was 2 years ago, and you can’t tell it now. I did have a problem with perms not taking in my hair during that time also. Not only did I have puffy dark eyes that would have put any prize fighter to shame, I also had long stringy hair to go along with it. I have a bow to match every outfit so I could pull it back which help get through it…….. Now they just sit on the dresser in a basket. When you have GD you sometimes have to be creative. I also worked a full time job until the RAI, but then went on sick leave for 6 weeks. After RAI I think I slept the clock around for a couple of weeks. That might have been just catching up from being so exhausted for being hyper for so long. Keep the faith, and hang in there. There are a lot of us who are doing OK as long as your meds are kept stable. We are the ones who peep in to the board but don’t post very often.
P.S. I also want to warn you that after RAI, my first period was HEAVY, I had not been warned about that little fact, and had to come home to change clothes. Now you can be prepared just in case it happens to you too.
GOOD LUCK with your treatment!!
Debe

[Anonymous]

#1055058

A number of you have expressed dismay at hair loss associated with Graves’. Has this happened before or after RAI treatment?

When you have lost hair, has it simply come out when you brush your hair? Or does it come out in clumps? Or is on your pillow in the morning? What happens?

I would appreciate knowing what I might expect.
Thanks,
Manders.

[Anonymous]

#1160114

Hi, Manders:

There are two types of hair loss that can be associated with GD. When we are hyper — especially if we’ve been that way for a while — the hair can become brittle and break more easily. It isn’t falling out, but it is breaking. With hypo, one of the symptoms is hair coming out in the brushes-ful. I even lost eyelashes during that time. This hair grows back once the hormone levels are normalized.

Shannon wrote a post a few months back on how to select hair care products that are gentler, and better for our hair. You might want to try to find it. There are certain ingredients to look for, some to avoid.

I’m also a firm believer that we all have to start paying better attention to our nutrition with this this disease, and that this can help the hair, too. The Graves Foundation has a pamphlet you can write for that talks about nutrition.

As a side issue, since you are going to have RAI soon, it would probably be a good idea for you to learn more about the symptoms of hypothyroid. Most of us are EXPERT at giving the symptoms of hyper, and then after RAI haven’t a clue when something is associated with hypo. But since it is important to catch hypo early and get onto replacement hormone, knowing what symptoms to look for can help us out a lot. I’ve read posts from people who endured hypo for months, but were “waiting” the three months (or whatever) for their next doctor’s visit. But all of our bodies react to the RAI differently, and it pays in the long run to know when we need to call the doctor and ask for an appointment and blood test sooner.

[Anonymous]

#1160115

I lost hair everywhere! In the shower gobs of it would come out. When I brushed it, chunks. There was a trail of hair all over my house. My hair was very long then (I just cut it) and it was wrapped around the beater-bar of the vacuum cleaner…my husband had to take it apart every month to clean it out. Birds and wasps were using it for nests in my front year! The bathroom sink clogged twice. Believe it or not, I don’t know how this happened but the trap in the dishwasher was packed with it!!!

I didn’t go bald, but I did have little, stubbly new hairs growing all over my head. I can feel them, but it’s not noticeable to anyone but my Endo who checks that sort of thing. Around my hair-line they grew into cute little curls. In fact, my hair got very curly since Graves’. Now that my hormones have been stable it seems to have stopped. When I went a bit hypo it started again, so it probably falls out due to the stress of both causes.

[Anonymous]

#1160116

My hair has been brittle since Graves and continues to be brittle and break easily since I’ve had RAI 6 weeks ago. It also is limp and fine when it used to really thick and a bit coarse before Graves. I go for my 6 week checkup following RAI tomorrow and will ask my doctor when my hair will be back to normal. It’s scary seeing your hair falling out!!
Sue K.

[Anonymous]

#1160117

My daughter, Katie, who has GD has been losing hair this whole past year.
Her doctor thinks she is hypo and is running blood tests now to find out.
We live overseas, so the tests take about three weeks before we get the
results. Today is Katie’s 13th birthday. She has had GD for the five
years and is usually well. This just hasn’t been a good year for her
because of her body changing. She has needed a lot more rest. Thanks for
listening. Kaci

[Anonymous]

#1160118

Not everyone’s experience with RAI is bad.When hyper I started loosing my hair,but it’s so thick that it was hard to notice. It took a year of being hyper before my hair started to fall out, About a tablespoon full every day in the shower and in my brush. After RAI when my thyroid slowed down the hair problem went away.The transition from hyper to hypo was very gentle for me. Maybe because my doctor tested me at just the right time to start synthroid. I never had a bad down period. So it’s possible that after RAI you may catch the down stage before feeling really low.I feel thankful that I had the RAI.Once on synthroid,we only needed little adjustments over time to get the levels normal.One tends to hear the horror stories, but it doesn’t have to be that way for everyone. I had a positive experience, you may also.Good luck and think positive…….Gwen

[Anonymous]

#1160119

Hi Manders! I know you’re anticipating an upcoming RAI treatment, and I
just wanted to put in my two cents about side effects after RAI. I would
hope that I was one of the many usual, successful cases. I didn’t
experience any negative side effects from RAI, except becoming hypo and
that was expected. My doctor monitored me closely, and was able to put
me on a thyroid replacement drug within months after the treatment.

I know that hair changes can be one of the side effects of becoming hypo
(or hyper for that matter), but not all people go through the terrific
hair loss mentioned on the BB. Other than graying hair, my only hair
experience involves using a hair trap in the shower to catch the loose
ones. I perm my hair regularly, and notice no ill effects.

Just so you know, hair problems may or may not be in your future.
Wishing you health and happiness, Debby

[Anonymous]

#1160120

In the beginning stages of my GD, hair loss was just noticable when brushing, washing, and blow drying my hair. Lots of hairs on the bathroom floor.

[Anonymous]

#1160121

I lost alot of hair over a period of three months. My doctor didn’t have any suggestions but I went to the Health food store and bought a shake mix (white powder to mix with Milk) specifically for “Healthy Hair” I reasoned that perhaps it was a vitamin deficienct and I don’t know whether it would work for you but my hair stopped falling out within a week or so.

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