It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Thyroid Disorders Message Board

  • Can anyone relate???

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 02-08-2013, 06:59 PM   #1
    Missy1227
    Member
    (female)
     
    Join Date: Jul 2012
    Location: Indiana
    Posts: 63
    Missy1227 HB User
    Can anyone relate???

    I found out my thyroid was swollen in the summer of 2012. My blood work came back TSH 0.058 (0.400-4200) FT4 0.6 (0.6-1.5) T3Free 3.8 (1.5-3.5). My thyroid antibody test was +1000. I was referred to an Endocrinologist and was put on some meds. The last time I went in for blood work was right after Christmas and at that point I hadn't been on any meds since September. My labs in December were TSH 2.431 FT4 0.7. I've been through 2 doctors and this last one didn't even schedule a follow-up for blood work! I have so many thyroid symptoms I'm going crazy and feel ignored!

    Thyroid symptoms I have:

    goiter
    hair loss
    feeling dizzy
    memory problems
    fatigue
    anxiety
    palpitations

    Other symptoms that may not be related:

    >nocturnal diarrhea
    ^hives (only with diarrhea)
    ^nausea
    ^severe stomach pain
    all those things happen at night and wake me from my sleep. The "attacks" as I call them only last a few hours and go away as fast as they come.

    I see a gastroenterologist for those last symptoms and have had a colonoscopy and endoscopy that came back normal.

    I feel like a crazy person and am embarrassed to address all this with my doctor.

    Other related or non related things:

    Achey muscles
    headaches
    slowly been putting on weight over the last 10 years (i"m over weight by 50 lbs)
    I have a numb spot on my back left shoulder blade that has been there for 6 months
    I have a spot on my lower back that comes and goes that feels cold or wet but doesn't feel cold to the touch.

    I'm 34 and have been a healthy person my whole life. I don't complain much about these problems because people have it much worse and I would feel like a hypochondriac if I were to go around complining about all these things. They are very real though!! Can anyone relate???

    I want to add that at my last appointment with my endocrinologist I told her that the dizzy spells were bothersome. She said if I wanted she would refer me to an ENT and said she didn't think that the dizzy spells were related to thyroid.

    Last edited by Missy1227; 02-08-2013 at 07:09 PM.

     
    Sponsors Lightbulb
       
    Old 02-08-2013, 11:47 PM   #2
    ABQpam
    Senior Member
    (female)
     
    Join Date: Apr 2011
    Location: New Mexico, USA
    Posts: 193
    ABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB User
    Re: Can anyone relate???

    Hello Missy1227 ~

    Welcome to the thyroid board. I'm so sorry you are feeling so bad. ((hugs))

    Oh dear, based on your lab tests from December, your Free T4 is at rock bottom of the range - no wonder you feel so bad. It appears your Endo only looked at your TSH level and deemed it "normal". ARGH! Just because your TSH isn't 6.5 doesn't mean you aren't hypothyroid. (Mine was never over 2.0) Endos seem to be some of the worst at recognizing and treating thyroid disease.

    You mentioned you had not been taking your meds for several months - why? I am sure you know Hypothyroidism doesn't heal after a course of meds like an infection. It requires life long, continuous treatment.

    Your antibodies test was probably TPO? Definitely Hashi's. Have you ever been tested for TSI or TRab antibodies?

    I suffered with most all of the symptoms you listed. Endured them for 2 years and went through 4 doctors before I finally found one who "gets thyroid" and would start treatment. So I can relate to feeling like a hypochondriac. LOL. It was difficult for me to learn how to advocate for myself, but it did finally pay off.

    In my amateur opinion, you desperately need to find a thyroid savvy doctor who will test your Free T4 & Free T3 levels and treat based on them - not just TSH. Are you taking any thyroid hormone now?

    Good luck and keep us updated on your situation.

    Pam

     
    Old 02-09-2013, 12:26 AM   #3
    fresnogirl
    Senior Member
    (female)
     
    Join Date: Oct 2012
    Location: FRESNO
    Posts: 159
    fresnogirl HB Userfresnogirl HB User
    Re: Can anyone relate???

    Quote:
    Originally Posted by ABQpam View Post
    Hello Missy1227 ~

    Welcome to the thyroid board. I'm so sorry you are feeling so bad. ((hugs))

    Oh dear, based on your lab tests from December, your Free T4 is at rock bottom of the range - no wonder you feel so bad. It appears your Endo only looked at your TSH level and deemed it "normal". ARGH! Just because your TSH isn't 6.5 doesn't mean you aren't hypothyroid. (Mine was never over 2.0) Endos seem to be some of the worst at recognizing and treating thyroid disease.

    You mentioned you had not been taking your meds for several months - why? I am sure you know Hypothyroidism doesn't heal after a course of meds like an infection. It requires life long, continuous treatment.

    Your antibodies test was probably TPO? Definitely Hashi's. Have you ever been tested for TSI or TRab antibodies?

    I suffered with most all of the symptoms you listed. Endured them for 2 years and went through 4 doctors before I finally found one who "gets thyroid" and would start treatment. So I can relate to feeling like a hypochondriac. LOL. It was difficult for me to learn how to advocate for myself, but it did finally pay off.

    In my amateur opinion, you desperately need to find a thyroid savvy doctor who will test your Free T4 & Free T3 levels and treat based on them - not just TSH. Are you taking any thyroid hormone now?

    Good luck and keep us updated on your situation.

    Pam
    pam, what do you take as far as meds? and are you regulated now?

     
    Old 02-09-2013, 01:00 AM   #4
    ABQpam
    Senior Member
    (female)
     
    Join Date: Apr 2011
    Location: New Mexico, USA
    Posts: 193
    ABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB User
    Re: Can anyone relate???

    Hi fresnogirl ~

    Another night owl I see.

    I am currently taking 75mcg Levothyroxine - since December 2012. I'm now feeling great again. Am I regulated? Probably not at my optimal dose yet.

    I was doing fantastic at 62.5mcg - TSH .74 and FT4 was at 86%. Well, I waited way too long to do labs and my FT4 had dropped down to 42%. UGH! Never again. Had return of fatigue and muscle aches (legs). After a few weeks at new dose, all aches gone and back to life.

    How about you... How long have you been at this? Are you feeling well?
    Inquiring minds want to know.

     
    Old 02-09-2013, 11:14 AM   #5
    Missy1227
    Member
    (female)
     
    Join Date: Jul 2012
    Location: Indiana
    Posts: 63
    Missy1227 HB User
    Re: Can anyone relate???

    My first doctor actually checked my TSH, FT3 and FT4. He was kind of creepy so I switched to another doctor in the same office and she only checked my TSH and FT4. I was only on meds for a very short time, maybe a month, my TSH went up to 12.372 (0.400 - 4.200) mcU/mL, T3 FREE 3.3 (1.5 - 3.5) pg/mL, FT4 0.5 (0.6 - 1.5) ng/dL. Those were from 9/4/2012 I was supposed to go in for more blood work 2 weeks after and at that time decided to go to a different doctor. I wasn't able to get in until December.

     
    Old 02-09-2013, 12:56 PM   #6
    fresnogirl
    Senior Member
    (female)
     
    Join Date: Oct 2012
    Location: FRESNO
    Posts: 159
    fresnogirl HB Userfresnogirl HB User
    Re: Can anyone relate???

    Quote:
    Originally Posted by ABQpam View Post
    Hi fresnogirl ~

    Another night owl I see.

    I am currently taking 75mcg Levothyroxine - since December 2012. I'm now feeling great again. Am I regulated? Probably not at my optimal dose yet.

    I was doing fantastic at 62.5mcg - TSH .74 and FT4 was at 86%. Well, I waited way too long to do labs and my FT4 had dropped down to 42%. UGH! Never again. Had return of fatigue and muscle aches (legs). After a few weeks at new dose, all aches gone and back to life.

    How about you... How long have you been at this? Are you feeling well?
    Inquiring minds want to know.
    pam! thanks for the clarification! i THINK im almost getting there!
    i deal with muscle aches and fatigue too! its horrible. I was diagnosed in sept with hashimotos disease. october started 25 mcg of synthroid, went up to 37 mcg, and now im at 50 mcg. been at 50 mcg for a good week now. But, not feeling any effects yet. Maybe I just have to give it more time. i JUST learned a couple weeks ago that 25 and 37 arent even therapeutic so maybe thats why i was feeling so hypo the past couple months. im so scared of turning hyper thats why i went up my doses really slowly. up a dose, wait 6 weeks, then get blood work done, then up again. When you mean feeling great, what do you mean? NO symptoms at all?!! Thats where I want to be. I hope synthroid works for me! What if Levo works for me? Who knows? Are you gluten free? I hope im not one of those people who have trouble converting t4 into t3. so far, my labs havent shown i have a problem with that so far.

     
    Old 02-09-2013, 12:58 PM   #7
    fresnogirl
    Senior Member
    (female)
     
    Join Date: Oct 2012
    Location: FRESNO
    Posts: 159
    fresnogirl HB Userfresnogirl HB User
    Re: Can anyone relate???

    let me also add my last labs, pam

    tsh 1.13 (0.3-3)
    free t3 3.15 (2.5-3.9)
    free t4 0.95 (0.58-1.64)
    reverse t3 364 (90-350)

    now im at 50 mcg.

     
    Old 02-11-2013, 12:20 AM   #8
    ABQpam
    Senior Member
    (female)
     
    Join Date: Apr 2011
    Location: New Mexico, USA
    Posts: 193
    ABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB User
    Re: Can anyone relate???

    Quote:
    Originally Posted by Missy1227 View Post
    My first doctor actually checked my TSH, FT3 and FT4. He was kind of creepy so I switched to another doctor in the same office and she only checked my TSH and FT4. I was only on meds for a very short time, maybe a month, my TSH went up to 12.372 (0.400 - 4.200) mcU/mL, T3 FREE 3.3 (1.5 - 3.5) pg/mL, FT4 0.5 (0.6 - 1.5) ng/dL. Those were from 9/4/2012 I was supposed to go in for more blood work 2 weeks after and at that time decided to go to a different doctor. I wasn't able to get in until December.
    Thanks - now I understand your lapse in meds. Tell me the doc you saw in Dec started you back on Synthroid or Levo...?! Egads - your FT4 was BELOW the bottom of the range! Yet your FT3 is high in range... This is going to require a savvy thyroid doctor.

    Whether you stay with this doc or move on - please, please tell them about all your symptoms. I know it sucks to be a whiner, but you have to advocate for yourself and get the care you deserve. The palpitations, anxiety and fatigue were the worst symptoms that started me on a journey to figure out WTH was wrong with me. I can SO relate to your frustration.

    In time, with proper treatment your CAN and WILL feel well again. General rule is to wait 6 weeks after any dose adjustment before you retest. And don't take your med within 8 hours of the blood draw. I usually take mine with me and take it after I leave the lab.

    My thoughts are with you. Hope you get on the road to feeling young and healthy again soon!

    Pam

     
    Old 02-11-2013, 01:02 AM   #9
    ABQpam
    Senior Member
    (female)
     
    Join Date: Apr 2011
    Location: New Mexico, USA
    Posts: 193
    ABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB User
    Re: Can anyone relate???

    Hey Fresnogirl ~

    Don't despair, it does take time. Treating thyroid disease is a s-l-o-w process. I too started at 25mcg and my FT4 actually went down and I felt even worse. You have to increase the dose slowly - usually about every 6 weeks and in small amounts (12.5mcg) it just takes that much time for your body to adjust. It's important to always get the same brand of med (Synthroid, Levothyroxine etc.).

    When I say "feeling great"... I won't say completely symptom free, but a 90% improvement from where I started. I still have sleep issues and although I have my energy back, my stamina has not yet returned to prior levels. I was so very sick and out of it for 3 years. Guess it will take some work to get that back. If I could stop the birthdays that would help. LOL

    I am not gluten free - that would be SO hard for me, as my family has the "love bread" gene!

    You FT4 is about 35% - too low for most healthy people. 50% is minimum. I happen to need mine near the top of the range. And your FT3 is about 46%. So you seem to be converting well. Someone on here once told me you want the two numbers to be within 20% of each other. TSH is not a true indicator of how well your thyroid is functioning. Sorry, I'm not well versed in Reverse T3. Maybe someone who is will chime in.

    Keep doing what you are doing and you will eventually realize the symptoms are getting better...going away. Seems like you have a good doc treating you.

    Time to try for some of that elusive sleep. Remember patience is key in this journey.

    Pam

     
    Old 02-11-2013, 04:15 AM   #10
    Missy1227
    Member
    (female)
     
    Join Date: Jul 2012
    Location: Indiana
    Posts: 63
    Missy1227 HB User
    Re: Can anyone relate???

    Quote:
    Originally Posted by ABQpam View Post
    Thanks - now I understand your lapse in meds. Tell me the doc you saw in Dec started you back on Synthroid or Levo...?! Egads - your FT4 was BELOW the bottom of the range! Yet your FT3 is high in range... This is going to require a savvy thyroid doctor.

    I wasn't given any meds and that is when I realized I once again had a doctor that wasn't going to help me. She didn't even set up a follow up blood test! I'm so frustrated!

    I've never been on Synthroid or Levo. I don't remember what I was on but it was for Hyperthyroid since that is what my blood work was in the beginning.

    Last edited by Missy1227; 02-11-2013 at 04:21 AM.

     
    Old 02-11-2013, 04:33 PM   #11
    ABQpam
    Senior Member
    (female)
     
    Join Date: Apr 2011
    Location: New Mexico, USA
    Posts: 193
    ABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB User
    Re: Can anyone relate???

    I'm really sorry. I have been away from the boards for several months - didn't realize you started out hyperthyroid. Probably doesn't change anything I've said though.

    Let me make time tonight to go back and read through your previous posts. I can better understand your situation then. Maybe I'll have other thoughts...

    Hope you feel better soon.

     
    Old 02-11-2013, 07:59 PM   #12
    fresnogirl
    Senior Member
    (female)
     
    Join Date: Oct 2012
    Location: FRESNO
    Posts: 159
    fresnogirl HB Userfresnogirl HB User
    Re: Can anyone relate???

    Quote:
    Originally Posted by ABQpam View Post
    Hey Fresnogirl ~

    Don't despair, it does take time. Treating thyroid disease is a s-l-o-w process. I too started at 25mcg and my FT4 actually went down and I felt even worse. You have to increase the dose slowly - usually about every 6 weeks and in small amounts (12.5mcg) it just takes that much time for your body to adjust. It's important to always get the same brand of med (Synthroid, Levothyroxine etc.).

    When I say "feeling great"... I won't say completely symptom free, but a 90% improvement from where I started. I still have sleep issues and although I have my energy back, my stamina has not yet returned to prior levels. I was so very sick and out of it for 3 years. Guess it will take some work to get that back. If I could stop the birthdays that would help. LOL

    I am not gluten free - that would be SO hard for me, as my family has the "love bread" gene!

    You FT4 is about 35% - too low for most healthy people. 50% is minimum. I happen to need mine near the top of the range. And your FT3 is about 46%. So you seem to be converting well. Someone on here once told me you want the two numbers to be within 20% of each other. TSH is not a true indicator of how well your thyroid is functioning. Sorry, I'm not well versed in Reverse T3. Maybe someone who is will chime in.

    Keep doing what you are doing and you will eventually realize the symptoms are getting better...going away. Seems like you have a good doc treating you.

    Time to try for some of that elusive sleep. Remember patience is key in this journey.

    Pam
    abq pam,
    thanks for your advice! did it really take you 3 years to become 90% better again? how long did it take you reach 75 mcg of Levo? I know its different for everyone, but the general consensus i get from those I ask about reaching a good dose usually takes about a good 6 months-year. hopefully, that is the case for me. so sick of aching everyday as if i have the flu when i don't!

    ps. did u ever try natural hormone than synthroid? i wonder how long i should give synthroid before switching to a natural combo or adding some t3. its hard to tell.

     
    Old 02-11-2013, 10:53 PM   #13
    ABQpam
    Senior Member
    (female)
     
    Join Date: Apr 2011
    Location: New Mexico, USA
    Posts: 193
    ABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB UserABQpam HB User
    Re: Can anyone relate???

    Unfortunately I wasted over 2 years with the wrong doctors - endless tests, specialists and expense. They kept looking for anything else to blame for my ill health other than the obvious thyroid problem. It took about 9 months from start of treatment to reach a point of feeling like myself again. I increased to 75mcg at the 12 month mark. This should have happened sooner - my fault for not staying on top of labs and symptoms.

    I started on generic Levothyroxine and have stayed with it. Although my PCP offered Armor early on, I opted to stay with this med. I was too afraid of the T3 in a natural dessicated hormone. Prior to treatment I was having alarming heart symptoms that we (eventually) discovered were likely caused by my high TSI Antibodies. As hypo as I was, I also have a high level of the Ab's that cause hyperthyroidism (Graves). Complex and confusing! Fortunately the heart symptoms disappeared a few months into treatment. I have read that untreated or under treated hypo will keep antibodies active or cause them to increase. Treating hypo can lower them.

    The journey to wellness is different for everyone. Have you discussed NDT with your doctor - what are his/her thoughts? Your T3 labs looks good - I think you are converting well. Adding a natural hormone might bring your FT3 too high, I'm not 100% sure on that!? I think anyone should re-evaluate their treatment around 9 months if they haven't had noticable improvement in symptoms and labs. JMHO

    Take care and keep at it. You will get better!

    Pam

     
    Closed Thread




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 01:44 PM.





    2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!