Thyroid tests LIE!

Discussion in 'Success Stories' started by coryjean727, Mar 25, 2011.

  1. coryjean727

    coryjean727 New Member

    My hair is growing back! This is the first time I have posted on here but I have some information I thought might be helpful so I thought I would share.

    I have been losing hair for probably ten years now or close to it but I just thought that I had crappy genes in the hair dept. But about a year after giving birth to my first child my hair started coming out in handfuls. I didn't have much hair to start with. At first I thought postpartum shedding... but I had never stopped losing hair while pregnant. When my scalp started to really show I got worried and realized there was a real problem.

    I have hypothyroid. But its not as simple as you think. Which is why I am here. My tests say that my thyroid is fine. But my mother and grandmother both have hypothyroid that show up on tests. I have learned that the tests lie. But to get treated you need to find a dr that will treat based on symptoms not just a blood test. I found a Dr that will after much searching.. and on dessicated thyroid medicine my hair immediately stopped falling out AND I am seeing regrowth. Now I am learning that this is an epidemic. So many of you may benefit from this too. The Dr I see does not take insurance so I does cost a bit. For the initial visits its about $1200 and then it becomes much less for follow ups. But before you spend the money there is an easy way to find out if you might have hypothyroid problems. You need a thermometer that is mercury or one of the new shake down thermometers. Digital is not accurate enough. And you take your temp first thing in the morning before you ever get out of bed and record it. Here is a site with all the info including other symptoms and links to find Drs. that will treat you based on symptoms not lab work. :> And what your morning temp should be. Hope this is helpful!
  2. ForeverBlue

    ForeverBlue New Member

    Hello,

    I also have hypothyroidism, and after being diagnosed 3 years ago, and not knowing anything about it, i immediately educated myself. I learned to find a doctor that will treat you by your symptoms, and not just by your lab results. And i also learned that Synthroid was bad, and Natural medicine, like Armour, was good.

    Well, i found a doctor that didn't ignore my symptoms, and also recommends going the natural route with medication. I had a totally different experience then you had. My hair has been falling out for the last 3 years. None of the natural medications have stopped it, and not one hair has ever grown back.

    I just don't want somebody to read your post and think that everybody has the same experience you had. What works for one person, doesn't mean that it will be the same outcome for everybody else. Having had the opposite experience you had, i am a good example of that. I was told when i was diagnosed that Armour would make me better, and stop my hair loss. I was also told that i would never go bald, and that Armour would make my hair grow back. None of that turned out to be true. Your lucky that things turned out different for you. It's devastating to lose all your hair, especially after putting all your trust in a doctor that told you that it would never happen. Unfortunately, there are many women on this site that have lost their hair from Thyroid disease, and it doesn't always grow back. You're one of the lucky ones :)
  3. Lisah

    Lisah New Member

    What to take for Thyroid??

    O.K. have questions for thyroid people... The post that states( Coryjean) I think was the one about thyroid says we need to take something for thyroid besides Synthroid??? What do we take? I have always thought that synthroid was bad on my hair because that is when my hair really started coming out... But what?? I was taking Armour with the Synthroid but I couldn't get it anymore so they switched to Synthroid and Cytomel and even though my levels are o.k. I'm not sure that the medicine isn't making hairloss worse???????? What is the best Combo?? I know that it's where my problems all started!! Any advice is appreciated please.. I think we know more on here about what works than the Dr's seem to know ?/ I really really feel that way... LOL Lisah
  4. coryjean727

    coryjean727 New Member

    ForeverBlue: Im sorry to hear that. I hope that you do find a cause.

    Lisah: I am on Armour. The synthetics dont work as well. They only work on one part of the thyroid (T4) and not the others. So it will bring your test scores to the "proper" level and not treat all the symptoms. My test scores have always been normal but I am reacting well to the Armour. The first dose I had wasnt high enough, I stopped shedding for a week and then started again. So my dose was increased and the shedding has stopped. And I have new growth. Still waiting to see how much it will grow in.

    My mother, who was on synthroid was still having thyroid symptoms (hair included but was not her main concern) and got switched to Dessicated Thyroid of a different brand then Armour and her ponytail has more than doubled in size since being on it. And its only been a few months for her.

    So while this may not work for everyone, It is definitely important to use a natural dessicated thyroid not synthetics and not to go by what the tests say because you could be missing out!
  5. Lisah

    Lisah New Member

    Advice on Thyroid

    Thank you for answering Coryjean727.... I will agree that I think the Armour is good but I thought you had to have some of both kinds of Thyroid? I do remember back in 2005 when I started on a mix of both synthroid and Armour my shedding decreased a lot... so I think there is something about that.... I did take it for awhile and then couldn't get it anymore and I think my loss has actually got worse since not taking it??? But I was always on the Synthroid which I really think is not good for me... Just scared about what to take and how much?? Most Dr's Do Not like the natural or pig thyroid have you not had this problem?? They think it's hard on the heart?? Just don;t know anymore?? So tired of trying to find what will work... Thanks for all your help... Lisah:eek:
  6. coryjean727

    coryjean727 New Member

    The Dessicated Thyroid (the pig stuff) has everything you need. They tend to not want to prescribe it though. You have to find a Dr that will. Some will want to keep you monitored until they are comfortable with a dosage because they dont want to put you into a hyper thyroid state. Mine isnt monitoring me right now but my dose is low. My mother gets monitored. The synthics only work on T4 (which is what they look for in the regular tests), dessicated thyroid does all of it though. There are other brands of dessicated thyroid too. But there is no need for the synthetics they just dont like to prescribe the natural stuff.

    This site has a ton of useful info. There are a couple links on this page to search for a Dr. http://www.stopthethyroidmadness.com Its where I found mine.
  7. sister1

    sister1 New Member

    ForeverBlue,

    I hear what you are saying about the Armour. I know some people fair well on a second drug like for the low T3s and T4s. They are still working on my levels and I am having very very bad shedding.

    I am wondering if there is an adrenal component which usually accompanies thyroid problems. I also think that at 45 I could also be insulin resistant and I read that if you eat sugar or white flour it can raise the amount of stress hormones that you produce which can be so counter productive to hair. It is a very frustrating disease and I hear what you are saying about feeling hopeless. After one year of hair shedding and newly visable bald spots I too, am feeling discouraged.

    I am willling to keep trying and I am going to try the anti inflammatory diet since that book includes recipes. I guess it is worth a shot.
  8. Infinity

    Infinity Member

    Thyroid Book

    Is it nessessary to buy this book?
    I was diagnosed with Chronic Fatigue Immune Dysfunction 20 years ago. Also, Fibromyalgia. The symptoms greatly overlap with Hypothyroidism. Do I need to buy this book to find out if I have hypothyoisism? I alredy know I have 99% of the sympoms. Is there another way? I need to do somethinf about my hair loss now!!
  9. sister1

    sister1 New Member

    the book

    Hi Infinity,

    You probably don't need to buy the book. I was talking to a natural path that was listed on Mary Shomon's website as one of the top docs for hypothyroid. She specializes in Chronic Fatigue and she said the two diseases are like sisters. She also told me that sometimes people don't feel better because their tissues are not absorbing medications as they should...Apparently, hypothroidism and Chronic Fatigue share some of the same bio chemical components. She does not take insurance but wow I learned alot from talking to her. I suspect that I am one of those people who are a poor convertor of the meds. It's all so complicated. She explained to me, that these autoimmune diseases have so much to do with how one metabolizes medications, foods etc. UGH!

    I wish you the best. If you are interested in her name I can pass it on to you. There more I learn, the more I know, what I don't know. I hever thought it was going to be so complex. I just want my hair back!

    Sister1
  10. sister1

    sister1 New Member

    Coryjean,

    Thanks for your post! It gives me hope. How long did it take before you noticed regrowth? Are you on any hormone replacement etc.? Does thyroid hairloss receive the same diagnosis as AGA? Does it have a similiar pattern? I have tried the evening primrose and it has not touched it....I don't know if anyone else has had any luck with that?

    I was recently boosted to 1 grain (60 mg) but I noticed a great deal of nausea. I do believe that my heart does race a bit and I had one endo tell me she does not prescribe Armour due to the concerns about heart. There is just no way to really win because everything has a a side effect! I am so glad to hear that you found something that works for you!!!
  11. Infinity

    Infinity Member

    Finding a Thyroid Doctor

    Corey Jean,
    Of COURSE I want the name of this doctor! I live in NJ, USA. I already made an appt. with a D.O. I went to a few years ago to try to treat my CFIDS and FM. I was already doing all the things he wanted me to do. In the meantime, everything got worse.
    I would like to know who the best Thyroid Drs. in NJ are.
    Actually, I'm so excited about the prospect of getting some energy and alleviating some pain I'm not even thinking about my balding! Getting some hair growth back would be sheer heaven.
    Any info from any one would be greatly appreciated!

    Infinity
  12. sister1

    sister1 New Member

    Top docs

    Infinity,
    Have you seen this website? http://www.thyroid-info.com/topdrs/
    I spoke with Dr. Gina Honeyman-Lowe, she may offer you some insight but of course she is in Boulder, Co. I realize that you are out East. I know that Dr. Shames also provides consult over the phone but it's expensive....but he is one of the top publishers/experts. Check it out see what you think. Will you keep me posted? I hope it helps.

    Take care,

    Sister1
  13. Infinity

    Infinity Member

    Thanks, Sister 1 .
    I found some Dr.s here in NJ from the website you gave. However, sometimes the words "no longer listed" appears after their names. What does this mean? Did they get booted off the list? One of them was a D.O . I've already been to (he was rather far), and there are two others near me (in Livingston, NJ) but the words "no longer listed appears. I called them all. One of them won't see me unless I get blood work done FIRST. I already know my TSH is normal from last year's bloodwork. What does it mean when thier names appears with those words after it?
  14. sister1

    sister1 New Member

    no longer listed

    Hi Infinity,

    This is what I found on the website in regard to your question:

    Doctors who were previously listed here are removed for a number of reasons.
    * The doctor has requested that his/her listings be removed because: he/she does not agree with this site’s philosophy or patient-orientation; the practice is too busy and can’t accept new patients; the doctor does not feel comfortable handling complicated thyroid problems; the doctor did not agree with what was said in the patient recommendations; or the doctor said “take me off the list†and offered no explanation.
    * The doctor has moved, retired, or died.
    * The doctor has lost his/her license, or given up his/her license, and is no longer practicing medicine.
    * Patients have provided negative input about the doctor that is of sufficient concern that, in the opinion of the editor, the doctor should no longer be on the Top Thyroid Doctors List.
    * Thyroid Top Doctors would face legal concerns if we published specific information about why patients had negative opinions about doctors, or if we shared a doctor’s occasional ranting â€take me off†email, or if we publicized doctors with licensing problems. So please, if you see that a doctor has been taken off the list and want to know why, talk to the doctor directly. If you write to us to ask why a doctor was taken off the list, we’re sorry, but we won’t be able to answer you or share that information.

    I don't know if this helps?

    Sister1
  15. coryjean727

    coryjean727 New Member



    I noticed regrowth after about a month BUT after about ten days of zero shedding it started shedding again. I just got boosted to 60mg also and my shedding has stopped again (its been increased VERY slowly). So we are still working on an amount that will work for me. I was told till either when my heart starts to race (and I feel like I had a lot of coffee and cant sleep) or my symptoms are gone we will stop increasing the dose or decrease it. Drs often dont want to prescribe dessicated thyroid like Armour because you have to be careful, but there shouldnt be a side affect unless you get to much and it puts you into HYPER thyroid state. Thats whats bad for your heart. Its a huge deal to find a Dr that understands why dessicated thyroid works and how to use it. They tend to be afraid of what they are unfamiliar with. My heart rate is under 60 and I dont work out. So I have room (low heart rate is a symptom of hypothyroid so it is supposed to elevate your heart rate some). I have many classic hypothyroid symptoms with absolutely perfect test levels so regular Drs wouldn't even treat me. I also have celiac. Which I am told can often accompany hypothyroid problems.

    I am not on any hormone replacements. I am nursing a baby right now so...that changes things for me I am taking a massive amount of supplements though. Hormones/adrenals are def important to look at as well. My mother gets hormone replacements with her dessicated thyroid.

    I honestly dont know anything about AGA. Mine has primarily been thinning evenly all over. But a patch in the front that came out was pretty big and is growing back in now at least a couple inches long.

    I am not interested in anything that would regrow hair but is bad for my body. As much as I want my hair to grow in I think health is more important. I feel like hair loss is a symptom of something else. And in my case thats def true. I dont generally think treating the symptom and not the body does anyone any good really. I would rather own baldness and buy a wig. So right now I have some regrowth, although its not been enough to fill in properly. But now the shedding has practically stopped again so....I am keeping my fingers crossed but its looking promising.

    The Dr I am seeing calls themselves complimentary medicine. Its real Drs with a holistic approach. You can find a couple links to search these kind of Drs on the site I posted above.

    The Broda Barnes foundation is a place that Drs can learn about this type of thing. Its not mainstream. I searched out a Dr that specifically knew how to treat this problem with dessicated thyroid. I was fortunate enough to be pretty sure what the problem was. Even though the test said I was wrong.
  16. honey sweet

    honey sweet New Member

    there are 3 stages of thyroid hormone. Free TSH which is in the brain,T4 which converts in the thyroid,and T3 which converts in the liver.Medical Dr's only test the Free TSH and sometimes the T4,but will not test the T3..where most of us have problems converting it. a Naturopath will do the full screen. yes a test taking your Free TSH will come back normal..its like only testing the gas thats in the can that's pouring gas into the tank.only th tank has a hole on the bottom.so it's fine going in..but it's not in the end.

    my tests always came back positive,but i did th 3 morning temperature test,and my temperature was low,and my symptoms were all pointing to hypothyroidism..if i had stayed with a medical Dr i would never have gotten my answers. a naturopath is the way to go.
  17. sister1

    sister1 New Member

    honey sweet,

    May I ask your age? I am 46 years young. So, I don't know if it is normal to have zero progestrone or not. I am still shedding and looking into wigs. I have not treated my adrenals yet. I am still trying to find a doc that can help. They want to test for food allergies now, but I am really finding that it is all very expensive. I am glad that you found something that worked for you
  18. sister1

    sister1 New Member

    Infinity,

    I loose track of what I have read. So pardon me if this is innacurate....Was it you that said that you were going to see Mary Shomon's doc for hair loss?

    Thanks,
    Lori
  19. coryjean727

    coryjean727 New Member


    Ditto with the naturopath. Only T4 and T3 tests were also negative for me.
  20. sister1

    sister1 New Member

    It is such a journey to find the right doc. I am seeing an integrated med specialist. I believe that with the hormones, I am having more difficulty converting the thyroid med. It's just a guess. Has anyone else experienced this?