Hypothyroid? related to FM/CF? from HOMENET

Discussion in 'Fibromyalgia Main Forum' started by homenet, Sep 11, 2005.

  1. homenet

    homenet New Member

    I am writing this post because several ppl have asked me to (not because i am a trustworthy authority or anything).... I have done a good bit of reading on this and I am an RN (tho not currently practicing). Anything you read here, please check with your doctor and do some research yourself. Do not take my word on this alone.

    When docs order thyroid tests, they usually order TSH and Free T4 tests. If those tests come back with "normal" results, you are told by your doctor that your thyroid is fine; you are "normal and don't worry about it". The word normal is in quotes because that is really under scrutiny. TSH for many years was considered normal if it was below 5. If you do some reading about this (particularly Dr. Lowe's work), you will find that ppl are symptomatic way before 5. Many docs have agreed that anything under 2 is normal. There are many of us in that range between 2 and 5 with symptoms. Tons of symptoms. Read up on that by googling "hypothyroid symptoms".

    Free T4 measures how much T4 is in the blood stream at the time of the test. In order for T4 to be of any benefit it MUST BE CONVERTED to T3. Herein lies the problem for us FM/CFIDs ppl. We have difficulty converting to T3. Docs need to order FREE T3 tests. Free T3 tests help docs to know how much T3 is available for use at the cellular level. I had quite a time getting this test done. A simple blood test. My doc ordered it. The lab didnt run it. By the third try (we had it written in red and highlighted in yellow)and made a phone call - they ran it.
    (i am thinking it is an expensive test). This along with the TSH, Free T4 will help your doc. He needs to LISTEN to you about ur symptoms first and foremost. Some good docs actually titrate thyroid doses based on symptoms and temperatures.

    Low basal temperatures can be an easy way to tell if you may be hypothyroid. Check temp in the morning BEFORE rising for 3 days in a row. (WOMEN - first 3 days of cycle is best). If temp is less than 98.2 degrees all 3 days, let doc know. My temps were 97.0 and less.

    About thyroid meds: synthroid is all T4 (so if u have a hard time converting T4 to T3, it may not be the med of choice). Most docs start with synthroid. Cyclomel (sp) is all T3. Armour thyroid is a mixture of T3 and T4 and is natural (it smells terrible right from a pig!) Dr. Lowe and some others on the net suggested using Armour for ppl with FM/Cfids and low thyoid. I have been using armour. I have been titrating the dose up with my doc based on symptoms and temps. I had reached a level of 75mg and temps were almost normal and symptoms improving, but was having some palpitation problems and decreased to 60mg/day. I am not sure this is the right dose. I have spoken to one person in chat who was buying armour thyroid off the internet. I STRONGLY DISCOURAGE this. This person was up to 120 mg too. You are putting your heart at risk and it is not worth that risk. On the other hand,
    I had an endocrine specialist tell me that all my research from the net was null and void, b/c it had not been proven. He didnt even look at any of my research! He just assumed that b/c I got it off the net, it was worthless, regardless of the fact that i had many sources saying the same thing. He was 70 something and very old school. So ...the long and the short...do ur research; be ur own advocate; be informed; (I also pray and ask the Lord what to do); make ur decisions with a doc u can trust.

    I hope this helps. I don't always get in here to read these posts, but i am usually on chat in the later evenings EST. I will try to check back here.


  2. abbylee

    abbylee New Member


    Several years ago I ran across Dr. Lowe's research and talked my doctor into letting me try it.

    I followed his protocol and eventually my thyroid tests showed I needed to back off of the thyroid medication.

    During the time I took the thyroid medication, I felt no different as far as fms. My hands and feet that are always cold were warm when I was on the medication, but that's the only change I noticed.

  3. Fudge43

    Fudge43 New Member

    I'm not sure if anyone else here was diagnosed in reverse as I was .. the only reason they looked at the thyroid first was because I complained about the lump I felt inside my throat .. felt like something was "stuck" .. it really almost drove me mad because it advanced to a feeling like some one was pressing down on my thraot to choke me .. horrible feeling .. my previous family doctor sent me to an internist .. who thought I was more "depressed" than anything else .. it was one of the worst times of my life because they weren't LISTENING to what I said .. had all sorts of tests .. sent me to an ENT specialist .. my voice was very horse by then .. he said "you need vocal speech lessons" .. another winner .. I finally insisted on seeing a surgeon .. I wanted this monster out of my throat .. my thyroid was a massive mess and he didn't want to attempt taking it out .. BUT .. from examining me he suspected FM .. and from there things began to turn around he referred me to a Rheumitologist? spelling .. Then I left that idiot GP and internist and was fortunate enough to find another GP who "got it" straight away .. started on anitriptilyne and regulated the synthroid .. and that horrible feeling in my throat began to back off .. it hasn't been smooth sailing .. I still have had a few more bad specialists .. but I stick to my guns now .. I'll never let anyone treat melike that again !
  4. nina2

    nina2 New Member

    Thanks so much for your informative advice. I am experiencing these problems now and my physician doesn't seem to be convinced that I have low thyroid function, even though My temp is 97.4 or lower every day. I have every symptom but my TSH is normal.

    I plan to persue this with all that you have stated in your post. Thanks again.
  5. jbennett2

    jbennett2 New Member

    I am seeing my doc on Wed. and will be asking about this. I only received the results from him a few weeks ago. I have many questions for him. Also, my basal temp is somewhere around 97.5.

    Last week when I went in for a colonoscopy, my temp was 98.4 - they told me it was because of all the "stirring around" in my gut. After the test was over, my temp was back down below 98.

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