[Diane94 November 26, 2008 at 10:33 am Post count: 13]

#1075201

I just posted for the first time a few minutes ago but I can maybe give you some advise about the hair loss. This may or may not help because I don’t know enough about Graves but I do know hair. I’ve been a hairstylist for 18 years, so you can understand the hair loss issue that I have right now ” title=”Smile” /> There is a procedure that we do at the school that I teach at called a scalp treatment and I’m sure you could find a salon in your area that may do them as well. Basically you are doing a deep conditioning treatment on your hair along with a 20min scalp massage with the conditioner on your hair. The massage will stimulate the blood flow to your scalp which in turn stimulates hair growth. Like I said I don’t know if this will help with Graves but it helps with hair loss as long as the papilla is not dead (which in this case it shouldn’t be) not to mention who wouldn’t enjoy a 20 min scalp massage. If it does nothing for your hair it will at least make you feel better! ” title=”Very Happy” /> You wil also want to watch what you use on your hair. Nothing with high alcohol content, cut down on blow drying, curling iron, flat iron, and coloring because this all can be hard on the hair. If you have to blow dry your hair use a product that will help protect the hair before doing it, a good example is Chi Iron Guard. There are many products like this but I use this and it not only works but smells great too! Hope this helps.

[mamabear November 26, 2008 at 12:18 pm Post count: 484]

#1075202

Please read Tips on hair/skin I have 3 ft of hair as well.

I have a question, was it your peers that pushed for you to have the RAI? What was the reason you are deciding on it? Where your thyroid levels getting better with the Methimazole, was it showing improvement? If so then why stop. Did the dr. tell you that once you have RAI that you will become Hypothyroid and will always need to take thyroid replacement the rest of your life? Did he say that it will take time to adjust to a dose to make sure that you are at the right level?
Did dr. explain about the restrictions during RAI and what you have to do afterward?

I am not your dr. and if you said he was the one who said listen the methimazole isn’t working lets do RAI i’d say ok. But if this is from your peers then which one of them has gone through it and has been able to tell you first hand how it will work out? I know they are radiologist but they are the ones giving the dose that the dr. says to give. They aren’t the patients that are going through it, they dont know enough to say that that is what you personally should have done or be doing. Of course your dr. will opt for RAI because it is a lifetime that you will always be in his office. You will always go for check ups and medicine for replacement therapy. Its better for your dr. because if you go into remission on Methimazole then you aren’t in the office as much. (words right out of my dr’s mouth lol, she says that all dr’s prefer RAI over Tapazole or PTU, but she knows i wont and she is great with me, she does not push the RAI unless it’s needed).

I’m just concerned that this was a harsh decision due to peers talking to you about it and then you mentioned it to dr. and he said lets go for it. If i am wrong please please tell me, but if i’m right… I just want you to understand ALL of the info for both taking meds and also doing the RAI and of course after RAI you will need to take meds anyway.

Your hair is important to you, you have worked very very hard on getting as long as it is. You need to brush it out but have a care when you do, the link i posted will help you learn how to care for it properly and always remember that when you take a shampoo or conidtioner off the shelf look at the backfor anything that silicone in it. If it says anything that ends in "cone" that is a form of silicone and it hurts your hair making it weaker. So the more expensive shampoos that you are using and conditioners might not be good for you. Some good ones are the cheapest ones in fact. I use whiterain and Vo5 (they are the cheapest but I find that most of them dont have any silicones in them and are good for my hair.)
The graves disease is what is making your hair fall out, it will take time for your body to heal and if I remember correctly Ski one of the girls on here that knows a lot about this says that your hair is one of the last things to heal.
Stressing over it wont help you either, I know it is hard because you have worked hard but again this is your body being ill, nurture your body and remind yourself that whether you do the RAI or opt for meds again, either way your body and hair and everything inside you has to heal it will take time. But caring for it will help you feel better knowing that you are doing everything you need to do to keep it better looking. Read the link about it and I hope it helps.

I am hoping that others will respond better to this, as I am a bit confused about your reasons for opting for the RAI. Did your dr. even do another set of tests to see if the methimazole was helping, is so what were the numbers? Either way I do hope that you feel better and are able to get through this. we are here for ya!!!!

[Ski November 26, 2008 at 2:58 pm Post count: 1569]

#1075203

Your hair may be changing because of the change in your thyroid hormone levels ~ it may not have been triggered by stopping the methimazole, it could be just because your levels are fluctuating so dramatically right now. Imbalances OR radical shifts in thyroid hormone levels (even if they are going from unhealthy levels to healthy ones) trigger the body’s response of removing support from the hair and nails (in order to preserve it for life sustaining functions). It is frustrating, and taking care of your hair CAREFULLY right now will help. Don’t worry, it won’t be permanent.

[kallikat November 26, 2008 at 3:10 pm Post count: 29]

#1075204

Mobrien,
Your story sounds so much like mine! My endo said I was in "overdrive" for too long. And I gained weight, too – after losing down to my smallest size. I used methamizole for 8 months before RAI. My levels were bouncing back and forth, so the med only worked some of the time. Which meant I felt bad most of the time. My endo said the chance of my levels straightening out were very slim, and if possible at all would take time. I felt that RAI was the most logical solution because my career requires that I be "on top" of things and I was having so much trouble concentrating.
It is easier to control after RAI – that is so true – but it doesn’t mean you will be normal immediately. I had RAI in Sept 07 and my TSH is at .024 right now. My synthroid dosage keeps going down, and I feel better each time it does – but not normal yet. But this "abnormal" feeling is a lot better than before the RAI, and I have hope that I will eventually be "normal" – not well, but within normal TSH range.
About hair: God also blessed me with very thick curly hair, which isn’t as thick anymore. People used to say that my hair was "the most beautiful hair they’d ever seen" – even hairdressers. They don’t say that anymore ” title=”Sad” /> I just quit styling my hair at all – wash, towel, and go. Because it’s naturally curly, I can get away with it (it looks like Stella’s on CSI NY). When my levels cause it to be dry and brittle, I use extra conditioner (the leave-in spray on stuff) after washing. When my levels make it go the other way, it can get oily so I only use conditioner on the ends at those times. I had started getting highlights to cover the gray the year before I was diagnosed. Now I let the gray show, and I’ve been told it looks "sophisticated" -(HA!). I went through the tears and frustrations when it started coming out, and I thank God he gave me enough to spare. I often wonder if He is using this as a lesson in vanity. My husband now keeps the plunger close to the shower door, and he is amazed at how much is coming out. So much so that HE asked my Dr about it.
The bottom line is – I am alive and am taking medication that is helping me and I won’t let Graves break my spirit. I’m gonna keep on trucking and adapt to the changing symptoms as I have to. And if I have to buy a hat, I will….and as I do, I will thank God I am able to drive to the store to get it.

[mobrien November 26, 2008 at 3:12 pm Post count: 1]

#1019948

I was diagnosed with Graves Disease on my birthday July 23. I started getting really tired months prior and just thought I wasn’t getting enough sleep because I had such trouble falling asleep. Then I noticed I would be out of breath from simple tasks like going up the stairs and lifting and moving patients at work(i am an xray tech in a level 1 trauma hospital)! I just figured I was out of shape. I unlike most people gained weight, because I was hungry all the time…so, I ate all the time. I have always been thin and last year I was at my thinest, so my thoughts are that I had an overactive thyroid for over a year. I finally decided to see my doctor when I had tremors or shakes that wouldn’t go away. I could barely hold a pen still to sign my name. I got blood work done and the office called me immediately reffering me to a Endocrinologist because I was "extremely hyperthyroid". I was feeling horrible, and had to call out of work the next day and went to the Endocrinologist(my birthday). When the doctor came in she was shocked that I was sitting there looking and acting as normal as I was because my numbers were so high. She expected me to be bouncing off the walls and she was suprised I had been functioning like this for so long. She explained my options for treatment and put me on Methimazole. And now after 4 months of being on that I am opting for the Radioactive Iodine Treatment. I work as an Radiographic Technologist and work along side with Radiologist everyday. They all told me the Iodine treatment was my best option. So, I stopped the Methimazole last Friday as instructed (7 days before treatment). Now my hair is falling out…and I mean REALLY falling out. It comes out in handfulls, especially in the shower. I am lucky to have thick hair, but it it keeps up at this rate I will be bald by christmas. This has been 1 of the worst side effect of the disease for me so far. I tend to be OCD about my hair. I spend tons of money on new shampoo, conditioners and products. And now I don’t even wanna touch my hair because when I do it falls out!! Please help….I have long hair, and I had short hair 8 years ago and have been growing it out for so long and I love my long beautiful hair!! So, cutting it is not an option. I just want to stop the hair loss or at least slow it dramatically. Please, Please…help me!! ” title=”Sad” />

[mamabear November 26, 2008 at 3:27 pm Post count: 484]

#1075205

I am so confused Kallikat, you said that your TSH now is 0.24 even after a year of being on suppliments? what were your levels before the RAI? Just curious.

[DianneW November 28, 2008 at 3:24 am Post count: 292]

#1075206

From my own experience, I can tell you that what causes hair loss with Graves’ Disease is basically CHANGES in thyroid levels! The health of your hair is a reflection of the overall health of your body. Changes in thyroid levels will make us feel bad ALL OVER. Any treatment option that causes either frequent or long-term changes in thyroid levels will cause havoc with our hair and with the way we feel in general.

Staying on antithyroid drugs might keep the thyroid levels stable, and your chances of achieving and maintaining a remission depend on many factors, including how knowledgeable your doctor is in managing ATD patients and how motivated you are to treat with that method. If you’re not that keen on taking ATD’s, and you think RAI makes more sense, you might be able to avoid fluctuations in thyroid levels by taking a large enough dose of RAI to destroy most of your thyroid quickly, thus avoiding leaving part of your gland to die out later from radiation damage and autoimmune failure.

RAI patients sometimes don’t feel well for several years following RAI because their dose of thyroid replacement is constantly changing, due to thyroid levels that keep dropping every few months. (I went through this myself, and my bathtub drain was full of hair every few months for the first four years following my RAI. I too have long hair.) If I was choosing RAI again now (which I wouldn’t, but that’s another story), I’d have a dose much larger than the 10 milicuries I had 12 years ago. My understanding is that it’s fashionable to give a bit larger doses these days.

A thyroidectomy is another choice that can stabilize levels very quickly. The people I’ve known who’ve chosen this treatment have felt well the fastest, with the fewest problems stabilizing levels. It’s important to find a highly qualified surgeon, and that can be difficult, living in some areas. This surgery isn’t done as often now, so fewer surgeons are as experienced as is essential to avoid the risks of damage to the nerve to the vocal cords or to the parathyroid glands.

Normally I’d advise you not to worry so much about your hair, but in this case as I said, the condition of your hair will reflect the general state of your thyroid health, so DO worry about your hair, and I hope you get well soon!

Dianne W
GDF Online Facilitator

[kallikat December 1, 2008 at 3:17 pm Post count: 29]

#1075207

Mamabear – I have a confession:
I never realized how important knowing what my levels were until I found this website last month. On 11/3 I had lab work and made a point of writing down my TSH level, and I will be keeping up with it from now on. Sure, my Dr told me each time – but I never understood the NUMBERs, just the WORDS they used – "too high", "storm range", "overdrive", "fluctuating", "bad", etc…
I DO know my med doses, though, for what that is worth. When I was first diagnosed, I took 40 mg of tapazole right off the bat. That was adjusted monthly up and down until RAI 8 months later. A month after RAI I started synthroid at 147mgc, and it’s come down 12mcg at a time until I’m at 75mcg now. I have to get labwork done this week and will right down the numbers on the little chart I made myself.
I guess I should probably call my endo and see if they can tell me what the numbers were before RAI. Now that I know more about it, I can see how it would be helpful to compare.
Sorry I confused you!

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