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  • Anyone just pray for a diagnosis either way?

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    Old 11-05-2008, 12:15 PM   #1
    loralei
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    Anyone just pray for a diagnosis either way?

    Not saying it's a good thing to have a thyroid disease, I know it can be life altering. But sometimes I just want to be told that I have SOMETHING...Mainly because I am afraid that I have a much more deadly neurological disease. I suffered from classic hypothyroid symptoms for a long time, but my labs are always in normal range.

    I have thyroid nodules, low temp, brittle nails, dry eyes, depression, fatigue, low blood pressure, weight gain, trouble breathing, insomnia at night and sleeping for 9+ hours in the day, trouble swallowing, mental problems with focusing, dizziness, trouble losing weight, shorter lighter periods (even though this is opposite of expected), and more recently and frightening, numb feet.

    I did find one doctor who was willing to try low doses of t4 and t3 meds on me. They seemed to make me feel better at first, but then my hair started falling out and my goiter got HUGE. I went to the urgent care clinic, assuming I was now way hypo or hyper from the medicine and STILL my labs are normal. Ugh. Since I can't seem to be diagnosed with an actual thyroid problem, I have convinced myself I have MS or something worse. Even if one day I actually get better, I don't know that the lingering worry in the back of my head will ever go away, because of the mere fact that no one can diagnose me with anything!

    Anyone else just want a label?

     
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    Old 11-05-2008, 04:09 PM   #2
    nscrbug
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    Re: Anyone just pray for a diagnosis either way?

    Hi Loralei,

    YES..I can totally relate to what you're saying. The other day, my doc ran a complete fasting blood screening (at my insistence) and I was actually HOPING that something would come up out of whack on the test, because THAT would explain why I feel so crappy! Unfortunately (or fortunately, I guess) my tests came back relatively normal - I had 3 things slightly out of range...my cholesterol, something called AST, and something called MCH. Other than that, everything else is perfectly fine. I was so frustrated after seeing the report. Now I feel like I'm back to square one. I keep telling my doc that I feel lousy...we already did 2 thyroid tests and he's happy with the results and doesn't want to change anything. He keeps pointing to "depression"...gosh, I really hate it when doctors use depression as a "catchall" diagnosis when they can't seem to find a physical problem. UGH!!!

    Linda

     
    Old 11-05-2008, 07:10 PM   #3
    KellyABC
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    Re: Anyone just pray for a diagnosis either way?

    I pretty much have prayed for the past 2 years for a diagnosis *anything* that would point to what was wrong with me. I had all the signs and symptoms of hypo and went to several doctors only to be told my thyroid indices were perfectly normal (meanwhile they weren't even checking T3, or antibodies until I started insisting). Boy how I loved hearing that word, normal. Awe, depression. They tried to put that one me too. I actually tried the meds and they did nothing for me. Of course they didn't, I was hypothyroid not depressed .

    I have just finally been diagnosed with hypo, like I had known all along I was, but it took 2 years for my blood levels to finally show what my body had been feeling.

    Please don't give up. Keep getting the levels checked at least every 6 months, the first thing in morning and with fasting. Maybe you will be like me and they will eventually show something.

    In the meantime, you might want to consider seeing a naturopath who can help you with some supplements that might be able to help!

     
    Old 11-05-2008, 09:34 PM   #4
    mkgb
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    Re: Anyone just pray for a diagnosis either way?

    Well I was just like you for many years. Went to all the specialist and got told I was normal... but we will treat your symptoms. Well it took five years for me to think to question and study the thyroid and what my MD SHOULD do to look at my issues. Then I got a complete thyroid panel done.. ANTIBODIES and all. My TSH and FTs were in normal range, but I had antibodies.. Graves and HAshimoto's. BUT because my TSH was normal I was ignored. I was satisfied that I had my answer and began to research more and push for referrals to Endos and such. Well the Endos ignored me, and I still didn't get treatment. Just told to wait and watch. I had to let my TSH get to 2.5. Well I refused that advice and kept MD shopping. It took 6 months of MD shopping, but I finally got an MD willing to proactively treat my Hashimoto's given my excessive symptoms. This helped uncover my hypoadrenalism which led to discovering hypoglycemia, PCOS and insulin resistance. So yes I felt such relief when I got that FIRST name for my issue. All the others.. well I guess I am a neat endocrine experiment, but at least treating each issue has resulted in improvement of my issues.

    Do not give up. Always get copies of your labs and make sure NORMAL for you is actually optimal.. Too many MDs do not know enough about thyroids and levels to properly treat you. We are not certified to treat you, but from experience we can tell you if you are where you need to be given age and hormonal needs.

    MG
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    Old 11-05-2008, 11:44 PM   #5
    amm35
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    Re: Anyone just pray for a diagnosis either way?

    Can you help me? you seem to be very knowledgable about adrenal and other edno related symptoms. I am so very sick and have seen so many docs with no answers. By the way, I am just down the road from you. I live in chickamauga ga, about 20 miles from chattanooga. please help

     
    Old 11-06-2008, 05:21 AM   #6
    loralei
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    Re: Anyone just pray for a diagnosis either way?

    I just recently found out that the ranges on thyroid tests are not optimal levels from a text book or something, they just take the median numbers from other people's tests and call that "normal"

    How insane is that? Nevermind that millons of people suffer from undiagnosed thyroid problems. I guess the tests assume something like 95% of the population must be normal.

     
    Old 11-06-2008, 05:48 AM   #7
    Oleander53
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    Re: Anyone just pray for a diagnosis either way?

    My Endo believes that it can take 5 years or more to show Hypo thyroid in lab tests......Just like a diabetic you can have a normal fasting blood sugar for years before it shows you are a diabetic. You can have thyroid disease and not know it.

    I know I searched for years to find out what was wrong. No one would listen and I got antidepressants shoved at me and was told to push myself away from the table. I gained 30 pounds in one year and if I was truthful it was really 50...the fatigue, weight, depression, inability to sleep........it came overnight on me.

    But when the " thyroid nodule" showed up on a CT scan for my heart everyone got really excited and suddenly no one questioned any of my symptoms. I have had symptoms for 8 years and my Endo guesses I have had this about 10 years....I have been treated now for 2 years.

    Yes I understand wanting to find a diagnosis. I am not happy that I have a multinodular goiter and Hashimoto's but at least it all makes sense now. It took wading through many doctors and much self education.

    Good luck and do not lose hope. Stay with the Board. Oleander

     
    Old 11-06-2008, 06:19 AM   #8
    mkgb
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    Re: Anyone just pray for a diagnosis either way?

    Quote:
    Originally Posted by amm35 View Post
    Can you help me? you seem to be very knowledgable about adrenal and other edno related symptoms. I am so very sick and have seen so many docs with no answers. By the way, I am just down the road from you. I live in chickamauga ga, about 20 miles from chattanooga. please help
    What are your main problems/ills? I know good dMDs do not grow on trees but i did find some in Chattanooga to my insurance company's delight. I have a Neuro-Opthomalogist, Neurologist, Sleep Specialist (Neurology/Pulmonology/Internal Medicine), Cardiologist(Electrophysiology), MFM (Maternal Fetal Medicine, OBGYN), High risk OB, Dermatologist, Immunologist, and my main care taker and Internal medicine integrative medicine specialist. My IM MD that is in Chattanooga and has helped more than any Endo, is Dr. Natalie Johnson of the Center for Integrative Medicine. She and those in her practice are professional and caring. They truly desire to find and fix the source of our ills. I do not have an endocrinologist that I can recommend at this time for thyroid issues. I have one that would be good for diabetes.

    By board policy I do not think we are allowed to arrange meet and greets on the board. However I will help however I can through the capacity of this board. Here is what you need to do to get the best help and advice from me and other board members. Keep in mind I am a bit OCD and LOVE lists...
    1) Compile a list of your symptoms, every last one. Try and rank them according to severity.
    2) Note your average BP, Heart Rate, and Body Temp.. if you do not keep a daily log of these it would be a good idea to start.
    3) If you are having weight issues (loss or gain) *pauses to dream about weight loss briefly, sigh* keep a diet log where you record all you eat and drink. This will help fight off the old you eat too much or too little complaints MDs always have with weight issues. Note exercise/weight training efforts on this log as well.
    4) Get copies of all your lab reports so you have actual lab ranges as well as the lab value. Not just a hand written sheet from the MD tosing out some numbers and the DREADED "NORMAL" word. *Snort* Not going to rant..
    5) Make a list.. yeah another one of this lab work in a Form like this..
    Jan 2008
    TSH 3.1 (.3-5.5)
    FT3 290 (230-420)
    FT4 1.0 (0.8-1.8)

    Mar 2008
    TSH 2.5 (.3-5.5)
    FT3 320 (230-420)
    FT4 0.8 (0.8-1.8)

    May 2008
    TSH 4.2 (.3-5.5)
    FT3 285 (230-420)
    FT4 1.2 (0.8-1.8)

    Etc.. The data above is made up.. but you get the idea for format. The work your MDs have done so far may lead you to your answer.. if you know how to look at it. As a chemist I went on a warpath to understand the human endocrine biochemistry. My Sheltie was diagnosed hypothyroid shortly after me so I got a crash course in the canine variety as well. The Vets in many regards are better at treating out pets thyroids than our MDs are at treating OURS! Now that is sad indeed. But back to point.. if you compile a nice LONG detailed post given the information above and start a thread with the title," NEED HELP IN NORTH GA or SOUTH EAST TN " You will be guaranteed to get a lot of attention from the southern thyroid vets recommending MDs and anyone else that can help with solving your puzzle. You are not alone, we have all felt as poorly treated and cared for as you. If you have specific questions in the mean time post one my most recent thyroid care and concerns thread. I will be sure to get the message.

    Sincerely,
    MG
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    Old 11-06-2008, 07:30 AM   #9
    loralei
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    Re: Anyone just pray for a diagnosis either way?

    Quote:
    Originally Posted by Oleander53 View Post
    My Endo believes that it can take 5 years or more to show Hypo thyroid in lab tests......Just like a diabetic you can have a normal fasting blood sugar for years before it shows you are a diabetic. You can have thyroid disease and not know it.

    I know I searched for years to find out what was wrong. No one would listen and I got antidepressants shoved at me and was told to push myself away from the table. I gained 30 pounds in one year and if I was truthful it was really 50...the fatigue, weight, depression, inability to sleep........it came overnight on me.

    But when the " thyroid nodule" showed up on a CT scan for my heart everyone got really excited and suddenly no one questioned any of my symptoms. I have had symptoms for 8 years and my Endo guesses I have had this about 10 years....I have been treated now for 2 years.

    Yes I understand wanting to find a diagnosis. I am not happy that I have a multinodular goiter and Hashimoto's but at least it all makes sense now. It took wading through many doctors and much self education.

    Good luck and do not lose hope. Stay with the Board. Oleander

    So they actually admit that nodules can cause symptoms? I have at least 2 nodules, but since my blood work was normal, I've pretty much been told that the nodules are nothing. Nothing. Not even a bit of attention paid to them.

     
    Old 11-06-2008, 08:14 AM   #10
    mkgb
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    Re: Anyone just pray for a diagnosis either way?

    Your dealing with a couple of what I fondly call MDums. They are dominant in all health care symptoms. It is a matter of ignorance and a closed mind to research and learning on their own. *snort*

    What can cause symptoms? The list is endless:
    1) Suboptimal thyroid levels for you can make you subclinical hypothyroid and have all the symptoms of hypothyroidism... WHILE BEING NORMAL IN RANGE. This leads back to what is NORMAL and what is NORMAL or better OPTIMAL for ME! I am not a 300 pound 6 foot male. I will differ as a result. We all are different and require individualized care! Okay.. *hops of the soap box and nudges it aside* Sorry about that.. NORMALCY sets me off.

    2) Antibody presence! FACT if you have antibodies and your AI is killing off or hyper stimulating your thyroid(Graves) then you are NOT NORMAL! There are studies that have shown proactive treatment of these conditions with medications causes a reduction/remission in some cases allowing the thyroids lifespan to be increased! HOWEVER you may still have a NORMAL TSH and thus the MD may clean to this tiny scrap of info like a fly in with a leg stuck in a spider web. Just like the fly it is not a good position to hold on to.

    3) MALABSORPTION! AH.. the side effect of under treated mild hypothyroidism. You lose the ability the get all the essential vitamins and nutrients that you need to keep you optimal. As a result you have to supplement in some cases a 10 fold just to stay normal. My B vits are this way. My iron, potassium, and magnesium I just have to supplement 3 fold. BEFORE supplementing always check you levels: Key tests that are not standard are Ferritin, vit D, Mg and B12. If you have Hashimoto's Selenium should be added at 100% the daily recommended dosage and you should have your initial Se level tested as well.

    4) ALSO there is documented improvement of symptoms due to treatment of nodules with T4 to suppress there growth.. i.e. treat the inflammation and subclinical hypoT inducing continued growth and enlargement of the thyroid to compensat for a lack of sufficient T4/t3 production and presence.

    ALL in all there is a lot that can be done. WE JUST HAVE TO FIGHT TO HAVE IT DONE. It is a shame that we have to be our own care advocates, but being at ground zero in this fight makes us the best for the job.. EXPERIENCE wise.

    MG
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    Last edited by mkgb; 11-06-2008 at 08:15 AM.

     
    Old 11-06-2008, 04:11 PM   #11
    Oleander53
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    Re: Anyone just pray for a diagnosis either way?

    NSCR,

    Did your Doctor do a Fasting 2 hour Blood Sugar with Insulin. I mention this because I have a super Endo while evaluating me for my thyroid issues actually listened to me Shock !!! I had so much fatigue and weight gain.......My blood sugars were good but my Insulin 2 hour was high...I am on medication for this and I feel 100% better......I had had a fasting Insulin test before but my Endo explained you need a 2 Hour PP to tell the picture.

    I just wanted to mention that to you. Here is what I know is wrong with me.

    Hypothyroidism, multinodular goiter, Hashis
    Insulin Resistance
    Milk Allergy

    Now that I know the above I am feeling better. I am feeling good. Oleander

     
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