Need Advise and Opinions on Thyroid and Alopecia Areata

Discussion in 'Fibromyalgia Main Forum' started by Alycia07, Sep 15, 2008.

  1. Alycia07

    Alycia07 New Member

    Well I have had my thyroid tested twice and they come up normal but my neck gets big and will go down after a few days and repeat. Does anyone have this problem?

    Also I was just diagnosed with Alopecia areata. Does anyone here have this and is there anything I can do to prevent my hair loss?

    I have FM, is this a cause or a trigger to lose hair in spots on the top of your head?

    My doctors don't seem to tell me much so I have to seek help here before I go crazy with all the medical problems I am having. Thank you in advance. Aly
  2. Rosiebud

    Rosiebud New Member

    I've had alopecia on and off since I was 17 - I'm 58 now.

    I have thick hair so have always been lucky in that the spots have never been visible.

    What happens to me is that I get a bald spot - sometimes quite big and have had a couple at once a few times. They can last 6 months to more than a year, then the hair grows in again. Like baby hair at first.

    Then another spot will appear, not right away. I can go a few years with none.

    I was told to try all sorts of things, iodine etc., nothing has ever worked.

    I KNOW my bald spots will grow in again and I KNOW I will eventually get another one.

    I have had M.E./Fibro for 20 years now and alopecia for 32 years, I dont connect them.

    I've heard it said that stress is a factor but I'm not sure of that either, I've had alopecia when I've never been stressed out.

    Docs dont' know how to treat it either I'm afraid. Try not to worry about it too much. It could be that you will only have this ONCE.

    As for your thyroid, we can have problems without it showing up in the tests. I've posted below what dr Myhill (UK) says about thyroid. You can find her site easily by typing her name in. I gave a copy of her paper on thyroid to my doc and he put me on thyroid pills, started me off low and worked up - I knew that I was getting too high a dose when I was sweating, etc. I am on 75mg of levothyroxine.

    The thyroid tabs have made no difference to the alopecia.

    [This Message was Edited on 09/16/2008]
    [This Message was Edited on 09/16/2008]
    [This Message was Edited on 09/16/2008]
  3. Rosiebud

    Rosiebud New Member

    Hypothyroidism - diagnosis of

    Hypothyroidism is extremely common and very badly treated in this country (UK) Its effects are insidious in onset and often mistaken for aging. It should be looked for in every patient with any unremitting symptom. I do thyroid function tests routinely in all my CFS patients.

    Many of my patients come telling me that their thyroid gland has been checked and found to be normal. This just reflects how inadequate tests can be in picking up thyroid deficiency. Usually doctors simply check a TSH (thyroid stimulating hormone), which will only pick up primary thyroid gland failure. For many of my CFS patients the problem is secondary to pituitary failure and therefore the TSH will be normal. Too many doctors treat the laboratory, not the patient.

    Symptoms of thyroid failure are: - weight gain
    - lethargy, inability to get fit
    - mental sluggishness (can progress to "myxoedema madness")
    - sensitivity to cold
    - heat intolerance
    - tendency to get recurrent infections
    - fluid retention
    - mood swings and depression
    - poor memory and concentration
    - hair loss - classically the outer third of the eyebrows
    - arthralgia (joint pain) and morning stiffness
    - skin problems and furunculosis (boils)
    - headaches
    - vertigo and deafness
    - hypoglycaemia (low blood sugar)
    - constipation
    - menstrual problems
    - pre-menstrual tension
    - digestive problems
    - infertility and loss of libido
    - feeling older than you are

    Signs of hypothyroidism include:

    - puffy face and/or puffy eyes
    - cold hands and feet
    - dry skin, rashes, eczema and boils
    - enlargement of the tongue
    - hoarse voice or voice change
    - soft pulse or bradycardia
    - goitre (swelling at the base of the neck)
    - slowed Achilles tendon reflex
    - low basal body temperature (measure your body temperature first thing in the morning. If consistently below 36 degrees centigrade, suspect hypothyroidism).
    - and almost anything else!

    Suspect hypothyroidism if blood tests show:

    - raised cholesterol (or abnormal fats)
    - macrocytosis - i.e. the red cells are too big
    - anaemia

    Look for hypothyroidism with other diagnoses such as:

    - Chronic fatigue syndrome
    - Arteriosclerosis and heart disease
    - Cancer
    - Depression
    - Dementia
    - Muscle and joint pains

    Furthermore, if one member of the family is affected, blood relatives are also at risk. I would screen for thyroid in all elderly patients.

    Hypothyroidism must not be forgotten in children as a cause of failure to thrive or poor scholastic performance.

    The test for hypothyroidism is to do a free T4, free T3 and TSH. This will pick up the majority of patients with thyroid problems. See tests of thyroid function.

    Doctors Skinner, Peatfield and Lowe tell me that there is a small group of patients who have tissue resistance. This means that there is something wrong with the receptors so that they do not respond to normal doses of thyroxine. Therefore, they treat these patients with much higher doses of active T3 in order to make them feel well. So long as symptoms of thyrotoxicosis do not occur, I am told that this is a perfectly safe thing to do. However, I think it would be sensible to monitor ECGs and bone density to make sure one is not running into problems with long term toxicity. At present I do not have any patients that I treat with supraphysiological doses of hormones.

    I diagnose hypothyroidism on the results of blood or saliva tests and confirmed by responses to a trial of thyroid harmony.

    There are a few patients who do not feel well until their T4 is at the top of the normal range. So I find myself using thyroid hormones very often in fatigue syndromes.

    Thyroid History is an excellent website with hundreds of experts from medical journals going back to the early 19th Century.

    Also see

    Related Test
  4. Alycia07

    Alycia07 New Member

    Thanks for the information. I will have my doctor check the other levels also. I only had the TSH test so this is very helpful to me. I appriciate you going through the trouble to find this for me. I'm so new to all this I need all the suggestions I can get.

    *hugs* Aly
  5. Alycia07

    Alycia07 New Member

    Thanks for the support. I think I will change doctors and also go with all the info I gather from all of you. I am usually not the type of person to demand stuff but this is rediculous. I'm sick of the doctors not caring and not helping me. I will let everyone know what happens on my next appointment. She only tested my TSH levels twice and nothing else. So the fight is on and thanks again for all your aupport.
  6. Rosiebud

    Rosiebud New Member

    doctor started me on the thyroid supplements even though my tests were NEGATIVE - I took him Dr Myhill's stuff to read, there's more that you'll find on her site.

    Basically it says that the tests are not reliable and many people suffer from hypothydroidism but it doesnt show up.

    My doc started me on 25 and gradually put me up to 50, then 75 then 100 which was too high (I was sweating and agitated) - I'm fine on 75.

    I knew I had a thyroid problem as I put 14lbs on in one month, was depressed (I'm not usually) and the tiredness was different from what I normally experience with M.E./CFS.

    The hair loss with thyroid problems is not the same as with alopecia - alopecia is hair loss at a certain bit of your head, like a large bald spot. Hair loss with thyroid is more of an overall thinning of the hair.

  7. autoharp15

    autoharp15 New Member

    I have an hypothroid since 1985. Unfortunately it runs in my family. Hair thinning is one of the symptoms. I have lost alot of hair on top of my head. The back is fairly thick and I do have hair on the sides. Being a female this is really disturbing. And no it has not come back no matter what I do or take. I have tried shampoo's NIOXIN, you name it. Vitamin supplements. ect. Nothing has helped everyone stares at the top of my head when talking to me. since you can see the scalp thru what little hair I have up there. I have had people ask me if I was having chemo treatments. Dont waste your money on all those supplements shampoo tx either they dont help and get very expensive. Its either a hair transplant that might or might not work. I could never get them to garuntee that the transplanted hair would not fall out as well. I did find a solution for my problem. It boosted my self esteem 100%. I found hair replacement systems worked for me. Basically its a female version of a toupee. I glue it on with surgical glue and take it off once a month and reattach it. I can shower and wash my hair just like everyone else. And yes it's human hair and I can blow dry it , curl it with a curling iron just like it was my own hair. I dont have to worry about the grandkids pulling it off like a wig or it falling off in a wind storm. haha. I am not saying this is for everyone. But it has been an alternative for me. No one knows its not my real hair except the person who cuts my hair. Its our little secret. Their are many sites out their that sell these systems at different prices. I have my own person who I know and trust who does my ordering for me. If you get a system and you dont like it they will refund your money or make changes to it no questions asked. She is my new best friend. haha . Carol
  8. Alycia07

    Alycia07 New Member

    Thanks so much for all the info and experiences you all have given me.