Starting to feel like a lost cause....

debbiepa
debbiepa Posts: 45
edited December 19 in Social Groups
It's been 5months since I've been diagnosed with Hypothroidism. And I still don't feel better. I'm up over 25lbs and I have headaches more often than not. My regular doctor started me on medication, but it didn't help at all so she referred me to an endocrinologist, who I finally saw this week. She did a lot of bloodwork and I'm waiting to hear back on the results. In the meantime, I feel so frustrated, tired, fat, ect, I eat healthy and I've continued running throughout this time, although the fatigue forces me to walk at times. I've met with a nutritionalist 4 times in the past year; she says that I should be losing weight, but I'm not. I don't know what else to do, but continue to wait. And I'm so tired of waiting for things to improve, for the meds to start working, for the next apt, for test results, for the headache to go away, for the scale to stop climbing every week. Any words of encouragement would be appreciated; hopefully, the results will come back soon and things will start improving for the better. Please tell me that it does get better...

Replies

  • lmelangley
    lmelangley Posts: 1,039 Member
    It does get better. Has your doctor increased your dose of medication at all? I know you read threads about people feeling better within a week of going on meds, but it took me 90 days. If the meds you received weren't sufficient, it could take longer. Everyone is different.
  • debbiepa
    debbiepa Posts: 45
    My medication hasn't been increased or changed at all yet. My TSH is on the high side of normal and the endocrinologist said that if all the other tests look good, she'll work to drive my TSH from 2.2 down to 0.3, which she is hoping will improve my symptoms. I don't know if she'll do that by changing the med or just increasing it. Either way, it'll be another time span of waiting. I can remember back in Jan, when I was only up 18# and the doctor diagnosed me and started medication; I was so eager to start feeling better. Now, I'm up 27# and I don't feel any better. I just wish there was something I could do about it. I feel a little better by posting about it; I guess it's a good test of patience....
  • lin7604
    lin7604 Posts: 2,951 Member
    once they get your meds correct you will feel better but it may only be for a short time too... that is my problem. my results are in the "normal " range but yet i feel like crap. my dr said she can't move them too much or i will be getting too much meds! go figure. so i have every symptom i can have and nothing is being done. I asked a second dr and they said the same... so he asked me if i wanted him to talk to my dr and then have her get a hold of me, i said YA! oh course! There has to be a reason why i feel so crappy. She upped my meds for the 1st time in YEARS back in oct and i felt like a million bucks for 4 months, that was it! MY weighloss has slowed right down again, making it so hard and discouraging.... but i keep at it and hope that it still makes me a healthier person in general and then when i do find a good dose of meds it will fall off no problem...
  • heinrichs21
    heinrichs21 Posts: 34 Member
    Don't feel bad! I have been on meds for 11 years and I still feel like crap. My dr. wanted me to be in the normal range first. Now that I am older I am going to see if we can get to the point where I don't feel like crap.
  • tecallahan
    tecallahan Posts: 732 Member
    If your endo is only testing TSH, please ask him to check some other things -- TSH is not a good indicator of how your thyroid is performing - all it shows is that you don't have enough INACTIVE T4 hormone. But if you aren't converting that T4 to the ACTIVE T3 hormone, then you will feel very bad. Your body needs T3. There's also a hormone called Reverse T3 -- it's a "blank" copy of T3. It plugs up the T3 receptors in your cells and slows down your metabolism so that it will burn as few calories as possible.

    In addition, your Ferritin levels could be low - typical of hypo. Also, Vitamin D could be low - which will make you very fatigued and unable to lose weight. Finally, and as important as your thyroid levels is your adrenal levels - cortisol especially. When you are hypothyroid, your adrenals work overtime trying to keep your energy levels up -- but eventually, they get fatigued and start acting whacky - producing too much or not enough cortisol and producing it at the wrong time of day - resulting in insomnia, anxiety, weight gain and other symptoms.

    Please go to www.stopthethyroidmadness.com -- read about TSH and why it is not a good indicator of how you are. Ask your doctor to treat your SYMPTOMS. There's a link to recommended labwork that you can ask for. You really are the boss of your body, so don't ask the doctor -- tell the doctor what you want.

    I am heartened by the fact that the endo said they were aiming for .3 on your TSH -- that's a good sign. But he really needs to look at your Free T3, Free T4, Reverse T3, Ferritin/Iron, Vitamin D, etc.

    Good luck - let us know how you are doing.
    Terri
  • lin7604
    lin7604 Posts: 2,951 Member
    i would like to know the trick to get our dr's to treat the symptoms and not look at the levels...
    TSH: 2.9
    T3:4.37
    T4:12.8 these were my results from my last test in march, i still feel like crap! I mentioned the symptoms and she said she can't up my meds more or i will be getting too much..... i mentioned vit d like you mentioned and she said they are about 9 months behind in that, so i can get the test done but won't get results back for many many months... isn't that crazy! so she said if i want to take it then take it.... why would i take a vitamin if my levels may be normal?

    I went and got another dr's opinion and they said that i am " normal" and they won't treat me differently either... so what is one to do?

    I will mention that adrenals to her and see what she says but wouldn't she know that already? I finally felt good when my meds were upped for the 1st time ever last oct and i only felt good for 4 months, now back to feeling super crappy.... i guess i will have to be super pushy with her this time and get to to look more into all of this...
  • tecallahan
    tecallahan Posts: 732 Member
    You got it -- be super pushy!! And if you have to search for another doctor, I would recommend using the Find A Doctor tips on STTM. TSH 2.9 might be within the so-called normal range, but my Naturopath allows my TSH to go to .1. It won't hurt you to take Vitamin D -- make sure it's D3. Most women, especially Hypo women, have Vitamin D. absorption problems. We don't get outside enough and when we do, our makeup and sunscreen prevents us from getting it. you could start on 1,000 MG a day... I take 10,000 MG a day!! I'm pretty sure my vitamin D is normal now, but if I stop supplementing, it will go low again.

    Did they check your antibodies for Hashimoto? I have Hashi, and my levels tend to swing wildly - especially after I've had a cold or other infection - when my immune system is stoked... my TSH goes high, my T4 and T3 go low.

    Here's some stuff I found on reading labs:
    FREE T3 LAB TEST: T3 is the active thyroid hormone. Free in front of the T3 means you are measuring what is available and unbound. Those on an optimal amount of desiccated thyroid, with no lingering hypothyroid symptoms and in the presence of healthy adrenals, tend to have a free T3 at the top of the range

    FREE T4 LAB TEST: T4 is the thyroid storage hormone. Free in front of the T4 means you are measuring what is available and unbound. Generally, those on an optimal amount of desiccated thyroid will have a free T4 mid-range or higher when their free T3 is at the top and in the presence of healthy adrenals.

    I am not a doctor, but you can look at your labs and see what low/mid/high ranges are.. and see if you match up to this.
  • ginnylee74
    ginnylee74 Posts: 398 Member
    .......... i mentioned vit d like you mentioned and she said they are about 9 months behind in that, so i can get the test done but won't get results back for many many months... isn't that crazy! ...

    Just curious, but where in the world do you live that it would take a lab 9 months to give you the results for Vit D 25-Hydroxy test. My last one took 3 days and was with the rest of my labs. I would go ahead and take Vitamin D3. My D3 is barely in the sufficiency range and my Endo has me taking 4000 IU's a day. If it doesn't go up the next time tested he will have me take more. Testing again in another 4 weeks.

    Please let us know how you do. Hang in there.

    Ginny:flowerforyou:
  • debbiepa
    debbiepa Posts: 45
    I got my lab results back today. Yes, my endocrinologist ordered a lot of lab work, including cortisol levels, antibodies, T3, T4, ect. Antibodies were present, my TSH was 2.2 and everything else was normal. She diagnosed me with Hashimoto's Disease and doubled my medication dose. Hopefully, I'll start to feel better soon. :flowerforyou:
    By the way, I also had my vit D levels checked last week and I heard back on them today; several months is crazy! :huh:
  • tecallahan
    tecallahan Posts: 732 Member
    I got my lab results back today. Yes, my endocrinologist ordered a lot of lab work, including cortisol levels, antibodies, T3, T4, ect. Antibodies were present, my TSH was 2.2 and everything else was normal. She diagnosed me with Hashimoto's Disease and doubled my medication dose. Hopefully, I'll start to feel better soon. :flowerforyou:
    By the way, I also had my vit D levels checked last week and I heard back on them today; several months is crazy! :huh:

    Wow, I'm getting pretty good at this :tongue: - I was guessing Hashimoto. Was your Vitamin D low also? Pretty typical for us to be unable to absorb vitamin D from sunlight or food.

    TSH of 2.2 is within range, but not optimal.. I would feel hypo if my TSH was more than 1.

    When they say Free T3 is "normal" -- it should be at the top of the range -- did they show you that?

    As for cortisol -- if they do it via a blood test it might look ok -- but with adrenal fatigue or other adrenal issues the levels can swing inappropriately throughout the day. They have a 24 hour saliva test for adrenal stress where you swab your cheek throughout the day (4 times)... then mail the swabs in to the lab right away. Then they get a look at levels at waking, noon, dinner and bedtime. I would not trust a blood test for cortisol because your levels could go whacky 4 hours later.

    Terri
  • Daydreams406
    Daydreams406 Posts: 249 Member

    Wow, I'm getting pretty good at this :tongue: - I was guessing Hashimoto. Was your Vitamin D low also? Pretty typical for us to be unable to absorb vitamin D from sunlight or food.


    We don't absorb vitamin D well? What? I didn't know this. So would a Vitamin D supplement be a good thing?
  • marriedwith
    marriedwith Posts: 72 Member
    I think you'll be happier with the endo. I always feel better with my TSH on the low side, if fact normal has recently been redefined, but I forget exactly what it is supposed to be. 2.9 would kill me though. I will say though that when I was first diagnosed and given the lowest level pill to start that I instantly felt better as soon as I took the first dose. Even my husband remarked "you cleaned?" oh yeah, I think I made cookies and cleaned and cleaned!

    The endo will get you all settled - hope you feel better soon!
  • heinrichs21
    heinrichs21 Posts: 34 Member
    Got my Lab work back.. Everything is in the middle of Normal! It has never been this low... I am happy. So, I tell my dr. that I am still tired and not wanting to eat. He told me that my B-12 could be low and to start taking B-12. He also said that because I have been getting throat infection that my body has not even recovered. I also brought up my goiter, I have not had one since I got diagnosed. Now, I have to get an ultrasound on my thyroid! I also have to see and Ear, Nose and Throat specialist to have my tonsilis removed.. my life has just become my nightmare.
  • tecallahan
    tecallahan Posts: 732 Member
    We don't absorb vitamin D well? What? I didn't know this. So would a Vitamin D supplement be a good thing?
    That's what I've heard -- here's some information that tends to agree. But I would like others on this forum to chip in and comment if they have low Vitamin D and what dose they are taking. I've been 70,000 iu per week since February. But 800 IU per day will be good for most people.

    http://chriskresser.com/the-role-of-vitamin-d-deficiency-in-thyroid-disorders
    http://thyroid.about.com/b/2010/09/30/vitamin-d-important-thyroid.htm
  • kerrpe
    kerrpe Posts: 3
    Be very, very careful of Vitamin D. Have your doctor test your blood levels first. I'm deficient and am on prescription D after continuing trial and error. Too much or too little can really mess you up. I get SEVERE muscle cramping and tightness if mine is off and dosing yourself can throw everything off track.
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