• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
Karenlee

Hypothyroidism

12 posts in this topic

Hello everyone.

 

I was diagnosed with Hypothyroidism in my early-mid 20's. I am currently taking 175 mcg of Synthroid. I had lost 90% of my hair at a very young age.

Since my Raynauds did not start until my mid 30's I am wondering if this is connected in some way, and if the thyroid issues were the beggining of my CREST? Wondering if any one else has had similar issues.

 

 

 

Thanks for all your help and understanding.

 

 

Karen

Share this post


Link to post
Share on other sites

I have had hypothyroid since my early 20's and I am now 48. It is of course another autoimmune disease. When all of my real medical issues started 2 years ago they kept keying in on "autoimmune". Now I am known as an auto immune disaster with having sclero, sjogren's, raynaud's, polymyositis, and mixed connective tissue disorder. I think once you have an autoimmune you may be more prone to have other ones in the future. I didn't realize I had raynaud's and probably had it for a couple of years before my real symptoms begain appearing with the sclero. I know I am tired of hearing that I am a "medical wonderment" when I go in for my appointments. When they did the Pet Scan due to the fact that I have an IgA Protein marker that they are watching for cancer, when the die went to "mark" me it went to every muscle in my entire body. They said they had never seen anything like it. So now they watch my lymph nodes in my left side of my neck and they don't know what to say about every muscle being lit up. I also know they have quite a time trying to keep my thyroid regulated also.

 

Sorry for rambling............

 

Warm hugs.

 

Peggy

Share this post


Link to post
Share on other sites

Ok thanks. I suppose it's all inter-related. I'm just connecting the dots with all this information. **pun intended** Lol

 

And Peggy, it seems we both are quite the specimens. One intern said that I was "interesting to say the least". I guess a lot can be learned from us.

Share this post


Link to post
Share on other sites

Did any of you lose your hair? I lost 90% of it by the time I was 24. I am now 41 and wear a permanent wig. I assumed it was just from the thyroid, but now I am wondering if it is alopecia or immune related.

Boy wouldn't it be nice if they came up with a pill that cured baldness? Talk about hitting the jackpot! Lol

Share this post


Link to post
Share on other sites

Karenlee, I lost almost half of my hair because of thyroid toxicosis. The radioactive iodine capsule ( I - 131 ), I took to cure me and put me into hypo thyroidism is what made me lose my hair. I just keep it short now. Sounds like yours could be caused more from alopecia perhaps. Cancer especially breast cancer is something that is also a precursor to scleroderma. I was reading about scleroderma in Wikipedia yesterday and they related thyroid, and even benign cysts to scleroderma of course not forgetting Raynaud's. Now, if we could just figure out how to stop others from ever getting even one autoimmune disease we would possibly have the cure. It will happen eventually. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Karen,

I have hypothyroid also. I have had it for 33 years. I also have Sjogren's, scleroderma, and fibromyalgia.

Nan

Share this post


Link to post
Share on other sites

Just to add...............I also have very thin hair now. It is either from the cytoxan I was on for 5 months or its from my thyroid or sclero. I just hope that it gets thicker and grows in again some time soon as it used to be so much thicker. I think it looks horrid now and I don't know if I should go for a wig or not. It's not real bad it just isn't like it used to be and I am so aware of it and it bothers me so.

 

Warm hugs.

 

Peggy

Share this post


Link to post
Share on other sites

Oh Peggy, how I feel your pain about the thinning/loss of your hair. I had beautiful thick hair up until my early 20's. I tried just about everything there was to try, with no luck. My 2 sisters have beautiful thick heads of hair (too much if you ask me lol) and my friends and I would get ready to go out for the evening and I felt so unattractive and depressed. I looked like a female Bruce Willis. About 4 years ago I finally broke down and went to a hair salon that ordered a custom made human hair peice that is glued onto the scalp. It is virtually undetectable and I feel like a woman again. It is expensive (about 2K per peice) and you have to go back every 4-5 weeks to have it re-glued but I wouldnt have had peice of mind without it.

It may not be for everyone, and I know it's a vanity issue, but in my mind it releived a lot of my self conciousness.

 

Karen

Share this post


Link to post
Share on other sites

I also have a thryoid problem, I was gaining about a pound a week and I was hardly eating, at first they said it was the cytoxian treatments, but then they ran more tests and it's hypothryoidism, Im on 125mg. of syn..also I went into early menopause b/c of the treatments...

 

My aunt also has sclero and she has thryoid problems, it is related..

Share this post


Link to post
Share on other sites

Thanks Kelly.

Too bad the connection wasn't made a bit earlier so maybe they could have done something to salvage my hair but now that I have CREST, hair is the least of my problems.

 

I had gained loads of weight too (on top of losing my hair) and ate as much as my thin friends if not less. Fat and bald at 22 just sucked the self esteeem right out of me. I tried all kinds of diets and exersize but it was an uphill battle. Finally my body seemed to respond to cutting out carbohydrates.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now