TSH levels......am I'm being misdiagnosed?

[two42]

Hi,
I am  36 and in Aug '06 I noticed my hair rapidly falling out. At one point I was losing 300 hairs a day. I went to the dr in Sept and my TSH level was 4.19. He said all my blood work was normal. My hair continued to fall out(diffuse hair loss)at a rapid rate. I had also noticed other symptoms such as, blurred vision, neck pain, constipation, dry skin and poor memory. I had been on a very low calorie diet(1200 a day) and walking on my treadmill 4x a wk so the nurse practioner said it was nutritional and that I should start taking a multivitamin and incorporating fruits and veggies into my diet. Well, here it is 4 mons later and my hair is still falling out and w/ other symptoms such as my hair is starting to gray, throat hurts a lot, irratable, snoring,cold,ringing in ears, decreased libido, bp 100/65, heart rate 60-65 beats per min..etc. Go back to dr, he tests me for lupus, checks my thyroid, anemia,etc....TSH is down to 3.4 and blood work comes back negative...I know something is wrong...ive been to my dermatologist, GYN, PCP and they act like Ive got the plague or something...no one wants to help. I'm so frustrated. My hair is not the same head of hair that I had just 5/6 mons ago....It's so fine, lifeless and unmanageable..When it first started falling out, it started out being very dry, coarse and very easily tangled...now it's like baby hair...If anyone has any suggestions I would appreciate it...my sister has been hyper and my mom has been hypo...How do I get a dr to listen to me and diagnose my symptoms and not my test results??? Thanks so much.

[Pookella]

You should seek the advice of a medical practitioner however, from experience the results from your blood work would indicate that you are suffering from hypo-thyroidism. If however, you are not feeling any of the below symptoms: (this are just some of them)
fatigue
hair loss
sensitivity to cold
constipation
cognitive impairment

then, I would not be concerned. Blood test are only a part of the overall picture. Another part is how is a person is feeling.

[savi400]

Dear Sir

My T3 and T4 Tests are normal whereas my TSH level is observed at 5.890. Nobody in my family has Theiroid problem. Kindly advice me if I have got Theiroid ? and if yes, please let know if I can recover from it completely..

[EmpatheticJenny]

Yes, two42, please DO let us know what happens when you see the endocrinologist on February 8th. When you say that you never have been the "typical" patient for anything that you have dealt with and that it's so frustrating when drs want to put everyone in a box, I hear you clearly! I have found it doubly frustrating when a physician had no idea what was going on and seemed to think that if he or she simply stuffed me into the nutcase box, that would be the end of that.

Take hope, hypo/hyper. I think you can count on having your hair grow back as your TSH level comes down, but it would be good to check my facts. Are you familiar with Mary Shomon's website? It is an excellent source of information (www.thyroid.about.com).

Hypo/hyper's experience underscores the fact that in today's health care environment, we patients need to be resourceful and watch out for our own best interests. I agree, too, that sometimes help comes in the most unexpected places. It also can come in unexpected ways. I paid out of my own pocket to spend an hour with a general endocrinologist to talk about my problems with HRT. When he surprised me by suggesting a whole battery of tests (including a TSH and free T4), I thought I would have to find an endocrinologist who was one of my HMO's "preferred providers" to order the lab tests, unless I wanted to pay for those, too.

What a pain in the neck. You can only imagine my gratitude when I found that my HMO pcp was more than happy to order everything on the endocrinologist's wish list. Now that I have a diagnosis of hypothyroidism and have started treatment, my pcp has been fabulous about ordering lab tests upon request and then making the results available to me.

I am telling you this, two42, not because I think you should follow the same course. I just want you to know, in case you meet the endocrinologist on February 8th and think, "Oh, yuck," that there are various ways to get what you need. I am hoping to make you "despair-proof"!

Crossing my fingers for you,
Jenny

[two42]

Thank you all for your help and words of support. I am new to the board and have been trying to do research myself to be as prepared as I can be when I do see the endo. I have read on many sites that if you have a TSH level over 3 that you should be treated for hypo but many labs still go by the "old" range which usually goes to 5.5 for "normal." I've never been the "typical" patient for anything that I have dealt with and it's so frustrating when drs want to put everyone in a box. Thanks again. I'll let you know what happens after my appt with the endo on Feb. 8th.

[hypo/hyper]

I have a similar story going on right now.  The answer for me was a thyroid scan.  I am waiting for the antibodies to come back.  I have had to self refer to get these tests.  My pcp thought I was a nutcase.  He kept trying to make me take antidepressants and antianxiety meds.  I really understand what you are going through.  The hair falling out has been tramatic for me.  Does anyone know if it grows back?  My Pcp kept saying that my TSH levels were normal.  TSH for me was 5.8.  The "normal" scale went up to 6.  Yeah, tell that to my body!  Keep at it until you can find someone to help.  In my case it was an ENT and GYN.  Sometimes help comes in the most unexpected places.

[EmpatheticJenny]

I agree with utahmomma: Your symptoms sound VERY much like what many of us have experienced. Another part of your account that is beginning to be very familiar to me (as a new member of this forum) is your having had a primary care provider look at a TSH level as high as 4.19 and label it "normal." I am very glad for your sake that you have been referred to an endocrinologist. The fact that your TSH level was 4.19 at one time of testing and 3.4 probably has nothing to do with anything. Variations up and down the scale do not matter; what matters is whether the overall trend is upward over time and whether you have developed symptoms that suggest hypothyroidism. Since you welcomed suggestions, I am going to offer a suggestion that might help you get as much good out of your first visit with an endocrinologist as possible. It also might help you know whether the doc is someone you can work well with (because dealing with a thyroid problem definitely needs to be a partnership effort). Organize your symptoms and the timing with which they have appeared on paper. Make the account as highly organized and easy to grasp as possible. If the physician does not appreciate your attempt to make his or her job easier--if he or she seems to prefer dragging a medical history out of you while you passively answer questions--tell your GP that you need to try another endocrinologist. The right one will diagnose your symptoms and test results together while listening to you very closely and also respectfully.  It can take more than one try to find the right endocrinologist, which is frustrating when you already have the frustration of going from physician to physician and getting no help. Hang in there, though, and fight to get the kind of care you need!

[EmpatheticJenny]

P.S. In answer to your question: Yes, you probably ARE being misdiagnosed. Your symptoms do not simply suggest hypothyroidism, they shout it, especially when combined with TSH levels of 4.19 and 3.4. If the endocrinologist you see does not think so, it would be another reason to decide that he or she is not the right endocrinologist for you.

[utahmomma]

I would go with the referral to the endocrinologist.  If I was you I'd also ask for two additional tests:  thyroid antibodies and a thyroid ultrasound.

Your symptoms sound VERY much like what many of us have experienced.

If you don't feel "right" keep pushing your doctors and see a specialist (endocrinologist).  You are the best judge of what's "right" and "wrong" with your body!

[MJ13]

While taking PTU, my hair began to get very dry and thinning.  I noticed it most when I was washing my hair.  I recently started using shampoo and conditioner made by Pantene that comes in a tube and has "restorative" on the label.  I will look for the exact name when I get home later today.

[two42]

Thanks Sandy for your response. My PCP has recommended me to an endocronologist. I go Feb. 8th. It's amazing to me that the PCP was so unmoved by all my symptoms and the fact that both my sister and my mom have had thyroid problems. After my 1st visit to the dr, I started taking a multivitamin, biotin, zinc, folic acid, fish oil and anything else that I thought would help with my hair. I don't know if this has helped any but I am losing less hair but still over a 100 a day and that's a lot to me considering how thin my hair has become. Does anyone know if this hair loss is permanent?? I've been so upset about all this.

[sandy52]

hi i have just read your concerns, if your mum and sister had a thyriod problem then you will get it  my dad had his out about 10 years ago, and 2 years ago i was over active  i had graves  i had radio- active idion.. one capsule  but i still have not gone under active  the hospital have discharged me and said any problems go to your gp  this i done last week as i keep feeling tired, and i have put a stone on . my hair comes out . i get consipated. he done my blood for thyriod it came back and he said i was fine, but we know how we feel dont we  i tell you another thing  about the blood tests people have its done by a machine like a computer, because i also had my vit and minarals done and that came back 7.6  i was really worried so i phoned the gp and he said have another blood test done it came back yesterday 4.2   so it just shows you how wrong tests can be, go back to your gp and tell them you want to be reffered to a endocrine clinic, if they say why say iam not satisfied with the way i feel. iam not satisfeid i will leave it a couple of weeks then go back to my gp and tell him  i want another thyriod test but one that looks at everything.. because the one gp does is tsh  they only look at one thing.. when i had an over active thyriod my gp said i was fine  i said  so why do i have palpertations. and weight loss   sweaty hands   i had to be stroppy  with him to send me to the hospital.. please mail me and let me know how  things work out   sandy