Additional Thyroid Testing ?

Discussion in 'Thyroid' started by aholtw2, Sep 28, 2009.

  1. aholtw2

    aholtw2 New Member

    I was diagnosed with Hypothyroidism about 9yrs ago after experiencing massive hair shedding. I took Levoxyl for several yrs, but due to insurance, was switched to the generic Levothyroxin (.75mcg).
    I've also taken birth control over the years, but switched to the Mirena IUD 7 months ago. My hair loss stopped after I initially started on medication, and actually thickened back up again 8yrs ago. My once beautiful thick hair which earned many compliments has been reduced to at least half of what it once was during the last 1.5-2yrs. My scalp is beginning to show thru more & more & it really freaks me out. I don't know what has changed, & have seen on here about other testing that I may need the doctor to run. We currently don't have insurance either, due to a lay-off, but I plan to go see the doctor the moment we get new insurance and need to know specifically what I need to ask the doctor.
  2. muffinmom

    muffinmom New Member

    do you have any burning, itching of the scalp?
  3. Lisacl12

    Lisacl12 New Member

    I have been losing a ton of hair, and I DO have an itching of my scalp. Other areas as well such as my upper arms and torso... what does it mean?
  4. muffinmom

    muffinmom New Member

    It may mean you have yeast. Do you get a film under your fingernail when you scratch your scalp? Is is burning and itchy kind of at the same time? You may or may not have a coating on your tongue.

    Another possibilty is you may have become sensitive to your shampoo. Sodium Lauryl Sulfate is extremely strong and can cause burning sensation on the scalp and other parts of the body.

    I am not a doctor and I don't play one on TV but I have been researching these things because I have the same symptoms.
  5. Lisacl12

    Lisacl12 New Member

    Thanks! I appreciate any feedback; this is the only place I feel validated when I talk about my hair loss. I don't care that you're not a doctor (or play one on TV, lol). I sat here at my computer last night and broke down in tears because I'm getting no where with the doctors, and all of our stories are so, so the same... I want so badly to find a doctor who is educated and compassionate in this area. I am 35 years old and I have noticeably been experiencing hair loss for about a year now. All my life I have had a lot of hair; it was something that I had received many compliments on. I do not have hair loss on either side of my family, and my mother's family all have a lot of thick pretty hair. My hair dressers would actually comment that I had enough hair for two people even though it was fine and soft, the amount was very great. When I first began to notice and make comments on it, others said that they couldn't tell, but it is becoming more noticeable to others now.

    I went to my PCP last spring and he ran blood tests checking my thyroid and said that I was in the normal range. He concluded that my hair loss was a result from my stress in my job and personal life. I had already been planning on leaving the field I was in and pursuing a different career path, so this just prompted me to do so.

    It has been a year since I first started to notice the thinning, nothing has changed except that the shedding is increasing... my hair strands are much finer and I can run my hands through my hair and 2-8 hairs come out each time, each of varying lengths. In the shower I lose a large amount each day.

    I recently went to an endocrinologist and he ran a series of blood tests (FSH, LH, ESTRADIOL, PROLACTION, TSH, DHEA SULFATE, FREE T3, THYROID PEROXIDASE AB, TESTOSTERONE) and everything came back in the normal range, however he did say the tests could have been "crude." With no other evaluation that the blood work, he mentioned spironlactone and aladactone, and I told him I would rather not start taking medication at this time, and continue to eliminate reasons for why it is happening in the first place. He said that he could refer me to a dermatologist, but that he/she would probably not be able to find any reason for the loss, and that all the bald men in the waiting room would look at me like, "why are you here." He told me to go to Walmart and buy Rogaine and to come back in six months. I went ahead and took the appointment, but am almost sure I will cancel it.

    This is the short version of my hair loss story and needless to say I really, really want to find a good doctor who will not treat me as if I am a vain young woman because I don't want to lose my hair. I am a single 35 year old female with no children and my self-confidence has really been deflated due to this. It makes it very hard for me to get involved in social activities and to want to go out on dates. At this point I still have enough hair left that it's not something that people notice right off the bat, but at the rate I am losing my hair, I don't know how much longer that will be. I just keep trying to tell myself that my worth is not in my hair and that I can "rock the bald look" if need be, but in my heart, I want my hair.

    I believe in prevention, I don't want to wait until it is too late.
  6. muffinmom

    muffinmom New Member

    Lisa, don't apologize for wanting to keep your beautiful hair. I want to keep mine. Our stories are very similar. I had my first major hair shed at 28. My hair was superlong, brown, beautiful. Basically, I was known as the girl with the hair. (ofcourse, I'm not that shallow, but I was just blessed, as you were, with beautiful hair). When it came out, I was in the bathtub and I was literally tangled in my own hair. I was horrified. There is no way to describe the feeling, you know what it is. I will say that I was under a TREMENDOUS amount of stress at the time. Not the normal stuff. And I was having bouts of chills and freezing to the point that my teeth would sometimes chatter. Somehow, the shedding subsided and I went on with my life. While pregnant with my first baby, my hair got GORGEOUS. More beautiful than it had probably ever been in my life. Two babies and some years later, I back to losing my hair.

    I do alot of research, Lisa, and the best I have been able to figure out by visiting different hairloss forums, is that people basically deal with their hair loss in one of two ways,

    1) Try to find the cause, hoping to find the cure
    2) Accept it, and rock the bald look.

    I have decided to not take this lying down. I am fighting back. I may never know exactly what triggered the hairloss, so I am going to take action in any way I can. I will say, I was again under a TREMENDOUS amount of stress b4 this started again.

    I am hypothyroid. I take synthroid. They just bumped me up to 75 mcg.

    I have a diary on under muffinmom. The diary explains what I am trying to do to help myself.

    I have found that a VARIETY of things can cause hairloss.

    Yeast can by allowing bacteria to grow on the scalp
    PANTENE conditioner nearly ruined my hair. That is my opinion. I will never have it in my house again. My girls won't be allowed to use it. It contains a silicone that will clog your hair follicles. My hair also began to BREAK OFF due to dryness from the PANTENE.

    Have you had your iron levels checked? LOW IRON can cause hairloss. I had mine checked about 3 weeks ago and it was 12.9. The range is 12 - 70 so you can see I am low. CLINGING TO THE LOW SIDE OF A NORMAL RANGE IS NOT A HEALTHY NUMBER. If you decide to supplement iron, take it WITH A VITAMIN C. Absorption rate of iron is very low and Vit C helps with that. Also, don't drink tea b/4 or after taking your iron, as the tannic acid in the tea binds to the iron making the molecules to large to be absorbed.

    I take several other things which are in my diary on the www. site.

    Also, some people have found that different medications they are on can cause hair loss. Sometimes the birth control pill will cause hairloss, or if you have recently gotten OFF the pill.

    These are all things to consider, Lisa.

    I know it's tough. It's tough for me too. We've just got to rule out what it's not and eventually we will get the answer.

    I will try to make u a friend on here if I can find where to do that, LOL!

    Keep the faith,
  7. Lisacl12

    Lisacl12 New Member

    Thanks so, so, so much for being you! You're reply brings me to tears because you don't even know me and you are so kind and giving. I feel so alone with this... this network is amazing. I am going back to my PCP Thursday, I adore him even though he don't know what to do, he cares... I will mention the iron because I am anemic. Funny about the chills, I am cold all of the time and people comment on how cold my hands always are. Something to consider...

    Thanks again!

  8. muffinmom

    muffinmom New Member

    Lisa, you might think about an endocrinoligist. They have a more sensitive thyroid test you can take.

    Do you have any other symptoms besides the hairloss and chills? anything at all. Sometimes you might not realize something is a symptom at all.

    I would take that burning itchy head seriously.

    I understand the tears. I understand the comfort in finding someone who cares. I hope you'll check out my diary. I only started it 34 days ago and I am chronicalling my journey to save my hair. I understand about it being thinner. When I run my hand through, there's not much there, and, this is hard to say, but my left ear is sticking out now.

    We will get through this. With God, with friends, with courage, with humor. We will get through this. :)

  9. muffinmom

    muffinmom New Member

    It sounds like you are also experiencing miniaturization (the individual strands are getting thinner). I am also experiencing this.
  10. Lisacl12

    Lisacl12 New Member

    Funny, my left ear sticks out :) ... I got it from my dad! I just saw an endo, he's the one that was so insensitive and said that the tests could have been "crude." I am not wasting anymore money or time on him, so I am going back to my doc for another referral. I take a list of questions and a file of research with me when I go, he is very good at being patient with me and I feel he wants to help. Thanks again! I am going to read you diary... it feels good to have others to talk to that "get it." Thanks!
  11. muffinmom

    muffinmom New Member

    I don't get mine from my dad. I wish I did. Mine is from the hairloss and that side of my silly head. The diary is called "The Battle Begins..." Anyway, I've made 6 or so entries. Start at day one. Hopefully, I can be posting some good news on there. I am so glad to hear you are not going to that doctor anymore. Some doctors do not understand how hairloss can effect a woman's life.
  12. olga

    olga New Member

    I was reading your posts and am going to check you diary. I have had hashimoto's for the past 12 years but my thyroid always come back normal. My sister is hypothyroid and takes a natural thyroid med made from pigs she can't take synthroid. I have the burning burning scalp and bumps on my head as well as I can scrape stuff off my scalp. I have tried to reaseach all of this my self with o avail. What sites have you found most helpful? If I do have yeast what should I do for it? Thanks, Olga
  13. muffinmom

    muffinmom New Member

    Olga, so good to hear from u. I haven't been on in ages. Coincidentally, I see a dermatologist tomorrow. I have managed to clean the gunk off my scalp but now I have strange little white balls floating around my hair. They are not head lice (lol!) they are like tiny sebum balls. wierd , huh? I have been having the burning scalp and bumps really bad this week. I don't know what the answer is. I have been working on this for awhile. But if it is yeast, you must avoid sugar and carbs. They feed yeast. It is past my bedtime, but I would love to chat with you more. God Bless. Goodnight for now. Tomorrow will be better. :) Muffinmom
  14. muffinmom

    muffinmom New Member

    Just wondering how u r doing with ur hair? I am going to a dermatologist tomorrow. Time goes by fast doesn't it? Hope you are having a happy new year. Get in Touch,
    Muffinmom :)
  15. olga

    olga New Member


    Hi Muffinmom, How did your dem. appt. go? I wish I can figure this out myself. I have a lot of endocrine problems. The frustrating thing is that there isn't a lot of help for women. Have you tried natural thyroid? It's funny that most women with TE have the same symptoms in their HL, yet no researcher can sit down to investigate the common cause. I want to e-mail some of these hair experts especially the women and ask them why isn't anyone trying to figure this out. I know that people get all excited over these new so called bald cures being researched. But, the research is mostly on men, so it doesn't necessarily mean it will work for women. We are always getting short changed. Even though the triggers might be different if the symptoms of our hairloss is all the same there has to be a common denominator. I tried to find your diary on that site, but couldn't find where it was. Let's keep each other informed on what we might discover. What part of the country do you live? I live in the northeast. I look forward to hearing from you. I pray that we can find answers. Olga
  16. Christina1

    Christina1 New Member

    thyroid, or ferritin as possible causes

    Hello everyone, I've just joined the forum and felt I had to comment on this thread, as I've been wondering whether my hair loss could be caused by thyroid problems in addition to iron deficiency. I wanted to point out that the posts that deal with iron, particularly ferritin levels, are very informative. I can't remember which of you it was that mentioned that their ferritin level was 12, but that is VERY low and is more than likely what's causing the hair loss. I know the doctor's think anywhere from 5 to over 100 is 'normal' but that is far from the case. I myself have a level of 39 and my doctor recommended iron supplements. I have yet to see any help from them, but I just couldn't go without mentioning that there seems to be so much misunderstandings about the importance of ferritin and hair health.
    Someone posted this link in one of the forums and it's so informative.
    As you can see, ferritin should be around or above 70 for optimal hair growth and to prevent hair loss. You can also check out Elizabeth's 'cocktail' formula which she mentioned in one of the forums, and found a lot of success with it. I'm going to try this myself. Here is a link to that forum

    The best thing I think is to educate ourselves to the best of our abilities and help each other out. It's too bad that doctors don't seem to be fully aware of the importance of both ferritin levels as well as thyroid function when it comes to hair loss.
  17. Marie Chin

    Marie Chin Member

    When your hormones get out of whack as a result of thyroid disease, your whole body can feel off-kilter. Your weight, your mood, and even your thinking, can be affected, and you may have a host of other physical symptoms too. Hair loss is a common side effect of thyroid disease, but it's not a permanent problem as long as you get the treatment you need.
  18. Julia David

    Julia David Member

    The results that u have shown Is not proper. So no one can make out wt exactly it is. K if u hv thyirod wt problem it can be brought to control. Well the result shown may also be wrong. Sometimes report may be true but shown fr someother perpose. May b when u had testing done u had light fever so report has come like that. Your doc can tel u don't worry.