Thyroid help PLEASE (a little long)

Dedicated
Dedicated Posts: 104 Member
edited September 20 in Health and Weight Loss
For YEARS now I have been complaining to doctors of the same symptoms: fatigue, dry skin, hair loss, brittle nails, weight gain, extreme difficulty losing weight (I've been at a standstill since May), brain fog, and poor memory. I know that something is not right, yet doctors just dismiss my complaints. A few doctors tested me for hypothyroid since that's what my symptoms lead to, but they have only tested my TSH levels. Since I was not getting any answers from my doctors I decided to try and take things into my own hands to figure out what is going on with me. I discovered that TSH can not detect all thyroid problems and that the "normal range" is widely disputed between experts. EVERYTHING I read on the thyroid recommended that you get your T4 and T3 levels tested as well to determine if you indeed have a thyroid problem. That's what I did. I actually paid to have my own blood tests done through a local lab company, because I wanted to be sure that I did not have a thyroid problem. My results came back a few days ago and while my TSH and T3 levels are normal, my T4 levels are low. I have no idea what this means and when I tried to talk to my doctor about it today he said that if my TSH is fine than my thyroid is fine and that the other tests are completely unnecessary. I know for a fact that this is not true. Not only have I read a lot about the thyroid, but my mom has hypothyroid ism and she wasn't diagnosed until her t3 and t4 levels came back abnormal, not her TSH! I understand that there is a good chance that I don't have a thyroid problem, but I would like to know what it means if my T4 levels are low. I would like to know FOR SURE that there is not an issue. Does anyone know?? I can't go to another doctor because I go to the Army base and you can only go to your primary care doctor unless they refer you to someone else....

Replies

  • SulisVioletWings
    SulisVioletWings Posts: 33
    Hello Dedicated...

    I wish I could help you but alas I feel like I am going through the same thing! I will eagerly await with you for a responce that might help. Good Luck!:flowerforyou:
  • ivykivy
    ivykivy Posts: 2,970 Member
    You are correct. What Is normal for one person may be low for another. Right now my TSH is at around 1.26 and I feel pretty good. However I have a non-functioning thyroid.

    You have the option of going to another doctor and paying for it yourself. Going to a naturopathic pharmacist or a biofeedback specialist that can give you an natural options.
  • debnu1
    debnu1 Posts: 1,568 Member
    Could you ask for a referral to an endocrinologist? They are specialists in the endocrine system namely thyroid, diabetes and things like that. Or at least find a new primary care. Also check out thyroid.about.com they have all sorts of information there. Here is a link to the new TSH standards http://thyroid.about.com/cs/testsforthyroid/a/labs2003.htm It seems that most people with thyroid disease have to fight to get appropriate care, so good luck!
  • xStargazerx
    xStargazerx Posts: 100
    I completely feel like I'm in the same boat. My husband is military and you can never get the anything out of them unless you are dying! My levels were low when I was tested in Alaska (our last duty station) but they never did anything about it. I was told that they both had to be low. I', tired most of the day then right before bed I'm more awake then during the day. You can go ask for a referral to see a specialist to ease your mind. If that doc doesn't give you one then try another. I would be a thorn in their side but that what you have to do with military docs. Good luck!
  • Dedicated
    Dedicated Posts: 104 Member
    I don't think the doctor would have given me a referral because he thinks that there is nothing to see a specialist about. As for changing primary care doctor (PCD) I'm not sure that it is worth the fight to do so. This is my 3rd PCD in the past year. I LOVED my first one but he left. The second one was absolutely terrible! She kept asking me why I haven't had kids, why my sister didn't have kids, and why my mom only had two. Then she ordered a pregnancy test, even though I told her it was not possible that I was pregnant! I went to the Tricare office and they told me that since the hospital is full if I requested a change in PCD's I would likely have to switch to a private doctor (which I do not want to do because: 1. There isn't one within 50 miles 2. I would have to pay co-pays). However, I REFUSED to go back to that doctor (she made me cry from harassing me!) so I went to a patient advocate who helped me to switch to my current doctor.
    Basically, without putting up a huge fight my only option is to pay to see a specialist. Before I shell out money I don't have, I would like to know what it means if my T4 levels are low and if that's worth paying to see a specialist for. I don't think I can handle another doctor that disregards my concerns and makes assumptions that I'm just another person looking for easy way to lose weight. If low levels of T4 are not a huge concern, than I will probably look into holistic doctors instead that may help me with symptom management.
  • Dedicated
    Dedicated Posts: 104 Member
    anyone??
  • Solandra
    Solandra Posts: 84
    I'm not sure about the answer to the question about T4, but I have Hashimoto's thyroiditis and we didn't actually diagnose the disorder until I miscarried after four years of fertility treatments. I also have PCOS (polycyctic ovaries), which is an insulin resistance disorder that is frequently considered pre-diabetic. Both of these have made it nigh impossible to conceive or carry a pregnancy, and loosing weight with PCOS is a nightmare.

    The second doctor you saw was rabid about your fertility - that's also something that can be researched by an endocrinologist, and if there's an apparent history of questionable fertility in your family (you don't have children, your sister doesn't, etc), perhaps that's grounds to ask for a referral to an OB-GYN and then discuss hormone testing, etc. It's going around the world to go down the street, but it might get you the answers you need.
  • mamacindy81
    mamacindy81 Posts: 649 Member
    A good book you might want to check out is "Living Well With Hypothyroidism".......what your dr doesn't tell you that you need to know . By Mary J. Shomon. She is also the author of "The Thyroid Diet".

    Chapter 7 deals with vitamins herbs and supplements that might help since you seem to be borderline hypothyroid.

    Hope this helps
  • Dedicated
    Dedicated Posts: 104 Member
    Thanks I will definitely look into that!
  • Dedicated
    Dedicated Posts: 104 Member
    I'm not sure about the answer to the question about T4, but I have Hashimoto's thyroiditis and we didn't actually diagnose the disorder until I miscarried after four years of fertility treatments. I also have PCOS (polycyctic ovaries), which is an insulin resistance disorder that is frequently considered pre-diabetic. Both of these have made it nigh impossible to conceive or carry a pregnancy, and loosing weight with PCOS is a nightmare.

    The second doctor you saw was rabid about your fertility - that's also something that can be researched by an endocrinologist, and if there's an apparent history of questionable fertility in your family (you don't have children, your sister doesn't, etc), perhaps that's grounds to ask for a referral to an OB-GYN and then discuss hormone testing, etc. It's going around the world to go down the street, but it might get you the answers you need.

    Well there's not really questionable fertility in my family, we have just chosen not to have kids yet. The doctor didn't seem concerned about my fertility, but more so about my life choices.
    However, I'm am going to get tested for PCOS on the 14th so we'll see what comes about with that. How do you manage PCOS?
  • Solandra
    Solandra Posts: 84
    PCOS is an insulin resistance disorder that's frequently treated with metformin, one of the oral diabetes medications. Statistically, women with PCO are more likely to develop type 2 diabetes. If you go the metformin route, be prepared to state very clearly and more than once, when you see a doctor, have surgery, or go to the emergency room that you are NOT diabetic. Metformin typically corrects the problems with hirsuitism, weight gain, and ovarian cysts, and puts your cycles back on track (irregularity and very heavy periods are another symptom). It will also help women with PCO get pregnant and stay that way, though we're at higher risk for gestational diabetes.

    As with any insulin resistance situation, I have to be careful about steroid injections for pain or infection. Steroids can increase your blood sugar and the results can be unpredictable with people predisposed to insulin resistance. I've never personally had any problems with steroid injections, and my blood sugar has always been normal, both on the spot and in the longer term A1C tests.

    Non-medication options include adhering to any one of the numerous carb-controlled diabetes diets, and I have a friend who is one of only a couple of people I know who transitioned to a true Atkins-style diet to loose her weight, gone as far as the maintenance program, and has stayed there for years. My fiance is a type 2 diabetic, so I just cook to his needs and meet my own as a result.

    The endocrinologist I saw after the miscarriage, who diagnosed the Hashimoto's, had the bad grace to treat me like "predisposed to type 2" was a "guaranteed to become type 2." I eventually found a new PCP who was willing to run the tests every 6 months without lecturing me about my doom. Her practice is affiliated with another endo at the same hospital, so we have resources if either the Hashimotos or the PCO gets worse.
  • SHBoss1673
    SHBoss1673 Posts: 7,161 Member
    If you're T4 levels are truly low, that is the definition of hypothyroidism, depending on how low.

    TSH levels DO NOT necessarilly correspond to hypothyroidism. Since TSH isn't a hormone produced by the thyroid rather it's produced by the pituitary gland, it can take a long time, and sometimes never, for it to reflect a problem with your thyroid.

    Since your T4 levels come directly from the thyroid itself, low levels of T4 usually DO correspond to an underactive thyroid and therefore hypothyroidism.

    GP doctors usually will check/treat for this if symptoms of hypo continue to exist. And by the way, a doctor usually won't refuse a referral if the reasoning is valid, and if he does, just keep calling other GP's until you find one who is willing to listen (make sure they're within your med plan though). Remember, like any other profession, some doctors are better than others.
  • proudarmywifeandmother
    proudarmywifeandmother Posts: 6
    I was diagnosed with Hypothyroidism in 2003 and had my thyroid partially removed. Your TSH levels are just a way to check how the putuitary gland is working and creating what is needed for the thyroid. Your T3 and T4 are how they check for abnormalities. You can have a low T4 and not have a thyroid problem. If they check your T3 and T4 and tell you that you have antibodies then you do have a thyroid problem. I would recommend you go to an endocrinologist. They are the ONLY ones that can fully diagnose a thyroid condition. Your regular doctor can only treat the diagnosis. I have been taking Synthroid for years now, I hope that this information helps you a little.
  • leavinglasvegas
    leavinglasvegas Posts: 1,495
    I know EXACTLY what you are going through!!!

    It has been 6 years for me and 7 different doctors! My T3 and T4 and Tsh were always "borderline", so I kept slipping thru the cracks. I even had an ultrasound of my thyroid gland and they said it was only slightly enlarged. They kept blaming me for my weight gain, and that feels horrendous! I did everything they told me, even lowered my fat intake to under 25 grams perday as requested by one of the doctors!

    Heres what I did:

    While researching my symptoms I came across this website. http://www.adrenalfatigue.org/about-adrenal-fatigue.html

    I just switched to a new doctor who was more concerend that I was having migraines daily, so he was seeing me often. I kept bringing up my other symptoms, but he kept separating everything and trying to treat each thing individually. My blood work was normal, he told me. So after reading that website, I decided it was worth it to check my cortisol levels. I went in there with the information about the test and adrenal fatigue. He agreed to humor me and take a blood test for cortisol, but insisted it would be fine since my thyroid and other blood work seemed ok.

    3 days later he called and said I was right! He still stands by the story that nothing is wrong, it was probably just a fluke or something. But he wrote the referral to an endochrinologist anyway. I'm having my first appointment tomorrow!

    Do not give up. You know your body better than any doctor, regardless of how many letters follow his name. For me its been 6 years and 80+ pounds. But I never gave up. You need to see and endochrinologist. Call your insurance company and tell them this doctor won't give you a referral but you have blood tests, symptoms, etc. that you think warrant another opinion. Read alot, so that you can stay toe to toe in conversation with any medical professional you see. Don't ask them questions, demand answers. I have learned to never come across like I need thier opinion. I just need them to order the test and write the referrals. Its kind of a game. Most doctors go by the book and don't think outside the box. If you don't have cookie cutter symptoms or numbers, they just let it go. But you are not a case study in a text book. You need to be your own advocate. It will get better, but first it will get harder.

    Good luck!
  • junie8
    junie8 Posts: 1
    Go to stop the thyroid madness.com or check them out on Face book. I too have hashimotos- you are right, the levels of thyroid in your body and how your body is regulated it is much more complicated than just looking at the numbers of a TSH test. There are many docs who don't even dose based on the tsh any longer... make sure you get checked for auto anti bodies and if you do have auto immune hypothyroidism find your self a great doc who knows what he or she is doing.... Stop the thyroid madness is a wealth of information and support. Good luck. it took me nearly 20 years to be diagnosed.
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