Frustrated

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lin7604
lin7604 Posts: 3,019 Member
I've felt with being hypo for 18 years. Back in 2012 I started to get into fitness and eating right to lose what I was gaining! I did... very very slowly! Now after the last year hitting road blocks I have gained again! Of course ! Yet this time trying to lose it is impossible and I just keep gaining! They say my labs are normal and no one will switch my meds or dose! What does one do? I've been better with my eating And exercising faithfully yet when I stepped on the scale today I gained again, now at my highest since 2014/15.
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  • bametels
    bametels Posts: 950 Member
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    So sorry that you are struggling with hypo. I have hypo, too!

    What medications do you take, at what dosage? What labs did they take? What were the results and the reference ranges?
  • lin7604
    lin7604 Posts: 3,019 Member
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    I'm on synthroid / Levo 112 mcg as of late aug, before was 100 for a few years. I had my tsh t3 and t4 taken on Monday. Waiting on the results since upping my dose. My last labs showed me pooling.
  • Fuzzipeg
    Fuzzipeg Posts: 2,298 Member
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    It is hopeful that you had your t3 tested. I hope it with be both free t3 and reverse because total t3 is all t3 together and its only the free t3 which is helpful. Were this number to be under 4 (UK number) you may be offered t3. This is such a complicated thing. Many have problems converting even taking other mineral supplements is not enough to help many.

    Good luck, I hope these tests come up trumps. meaning better than good. UK expression.
  • lin7604
    lin7604 Posts: 3,019 Member
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    Fuzzipeg wrote: »
    It is hopeful that you had your t3 tested. I hope it with be both free t3 and reverse because total t3 is all t3 together and its only the free t3 which is helpful. Were this number to be under 4 (UK number) you may be offered t3. This is such a complicated thing. Many have problems converting even taking other mineral supplements is not enough to help many.

    Good luck, I hope these tests come up trumps. meaning better than good. UK expression.

    I get free t3 and free t4 only! I have never ever found a dr that will do reverse
  • CSARdiver
    CSARdiver Posts: 6,252 Member
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    You need to have a discussion with your endocrinologist and get a full thyroid panel. There is no excuse to not order this and no cost increase as it is the same diagnostic test. You should also keep copies of your labwork and diary how you felt at these times. You need TSH, fT3, fT4, rT3 for a proper diagnosis.

    Regardless of thyroid issues if you are gaining you are in a caloric surplus. You need to adjust your caloric intake to be in a deficit. How much weight are you talking about?

    Hypothyroidism may cause a gain of 10-15 lbs after the initial hormonal decrease due to increased cellular uptake.
  • lin7604
    lin7604 Posts: 3,019 Member
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    Oh I know believe me! I have argued with every dr, only once got a full panel! I saw a new endo in aug and she brushed everything off . Just upped my dose andcsSud well retest my tsh in 2 month to see if it's optimal. I argued with her. When I went for bloodwork on Monday I actually checked off the free t3 and freet4 myself, There was no spot for rt3 though. I don't know why drs won't order it but they won't!
    I do keep all my numbers so I can compare!
    I know how many calories I need to lose, maintain and gain! I even had my macros professionally done. Trust me I'm not in a surplus! I could eat 1200 cals all year long and still gain! I've gained 17 lbs in the last year, half. It took me 1.5 years to just lose 20 lbs and that was beingbibsessed on losing it. Exercising 6-7 days a week, logging , weighting, Measuring every misery that went in my mouth meeting my macros etc. It was super slow till I got optimal but that only lasted a year I could maintain. Since then I'm struggling again!
  • CSARdiver
    CSARdiver Posts: 6,252 Member
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    lin7604 wrote: »
    Oh I know believe me! I have argued with every dr, only once got a full panel! I saw a new endo in aug and she brushed everything off . Just upped my dose andcsSud well retest my tsh in 2 month to see if it's optimal. I argued with her. When I went for bloodwork on Monday I actually checked off the free t3 and freet4 myself, There was no spot for rt3 though. I don't know why drs won't order it but they won't!
    I do keep all my numbers so I can compare!
    I know how many calories I need to lose, maintain and gain! I even had my macros professionally done. Trust me I'm not in a surplus! I could eat 1200 cals all year long and still gain! I've gained 17 lbs in the last year, half. It took me 1.5 years to just lose 20 lbs and that was beingbibsessed on losing it. Exercising 6-7 days a week, logging , weighting, Measuring every misery that went in my mouth meeting my macros etc. It was super slow till I got optimal but that only lasted a year I could maintain. Since then I'm struggling again!

    Doctors do well with data - not subjective information such as how you feel. Have you shown your MFP diary to your doctors? Can you bypass the doc and contact the lab? rT3 is an output from the panel, so the lab likely has this data. Note that this will address how you feel, but will have no impact on your weight.

    What are your most recent numbers? Are these aligned with the post 2003 standards?

    I trust you believe that you are not in a surplus, but the results prove otherwise.
  • lin7604
    lin7604 Posts: 3,019 Member
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    I don't know my newest numbers till next week. My doc had them but not back till Monday and will call me probably Tuesday.

    I can tell you that when my thyroid is out of whack I can eat under 1200 cals and still won't lose weight! My numbers to lose are 1600 and under, I get the best results between 14-1600 max. To maintain is 17-1800 and to gain is 1900 and up. I am not eating over 1600 cals!
  • KathleenSweetie
    KathleenSweetie Posts: 136 Member
    edited November 2016
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    I have hypo too. I found when I added low dosage of a depression med to up my cortisol (which dipped from a nonfunctioning pituitary) everything started balancing for me. I am now able to loose weight when I work at it. I too find I do better at 1400 cal.
  • Fuzzipeg
    Fuzzipeg Posts: 2,298 Member
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    Hope you've heard from your doctor by now. Hope all is well.
  • lin7604
    lin7604 Posts: 3,019 Member
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    I got my results back and my ft3 is at the max. So not sure what she wanted to do about it as she hadn't called me back requarding it....
  • Fuzzipeg
    Fuzzipeg Posts: 2,298 Member
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    I hope you hear something soon. Unlike many of us you seem to have the knack of conversion, may be you are running too well for you, at the moment. Too much and too little cause issues. I hope it sorts itself out for you.
  • lin7604
    lin7604 Posts: 3,019 Member
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    Fuzzipeg wrote: »
    I hope you hear something soon. Unlike many of us you seem to have the knack of conversion, may be you are running too well for you, at the moment. Too much and too little cause issues. I hope it sorts itself out for you.
    Aw thx but I seem to get no where with it! I've only had my levels optimal for one year out of 18! Drs just don't listen! When your tsh is low and t3 high u still get many hypo symptoms but yet they look at the tsh and say " oh it's good"... but what about the t3? What about the symptoms?
  • Fuzzipeg
    Fuzzipeg Posts: 2,298 Member
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    I hear you. Would they do better for themselves if they had the same problems? Could you find a person of the functional perspective, they may be more understanding. This is not really an option over here. I've had a professor in immunology and the local endo disagree on what is going on and not been permitted to go back to the prof. Systems, ugh. The answer I was usually given, live with it.

    Sort of doing my own thing now with a nutritionist and a Chinese Doctor, acupuncture/massage were my system not so far gone herbal preparations. Can't say what my numbers are doing. I only know its better than at any time for too many years. This morning my CD was saying western medicine recently announced something her culture has known for many thousands of years.

    Synthetic t4 can have the effect of suppressing the tsh.

    You could try looking on the sttm site they might have something interesting for you there. All the very best.
  • lin7604
    lin7604 Posts: 3,019 Member
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    Thx. I have read that site and I find they just promote armour and I can't find a dr here that will prescribe it! I've been to 5 drs here and 2 endos. I have a appt to meet a new family dr in 2 weeks so we'll see what they say about my results. That will be dr 8! Ugh! I heard the o my way I can get help properly is by going to a nutropathic dr which we have to pay for and I can't afford that! With them u have to pay all your labs too and can't afford that. I also seen on the sttm site labs in the states that will do all tests u need, but again can't afford it plus who will do what with those results? Not any of the drs I have!
  • Fuzzipeg
    Fuzzipeg Posts: 2,298 Member
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    Yours is a cry made by, I would think most suffers. No one will accept the issues with the synthetic form of treatment. They just remember, what they have been told of the days when a doctors only recourse was to give dedicated thyroid till the symptoms stopped. They consider the doses varied too much and true there are two values for the different products available today so one can't be confident this one is the same as that unless you read the small print. I will go as far as saying its predominantly men holding women's health as valueless.

    I wonder if there is a chance that some doctor in the US would treat by telephone or electronic communication. I have no idea what the cost could be. I did see once on a UK support site that you could talk to someone who would be able to prescribe. I don't know if that service is still available because they seem to want to close all doors to alternatives. I know it is so very difficult. I think it was on a list of pharmacies which were able to supply the decicated thyroid medication.

    This is a hateful situation. Good health should never come down to the ability to pay.
  • Fuzzipeg
    Fuzzipeg Posts: 2,298 Member
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    I had another thought. Some time ago other posters were able to reduce their doses to achieve a more personal treatment. Because the tablets come in different sizes, with the doctors agreement, they were able to contrive doses between those commonly available. It may also have included one dose one day and different the next achieving a more acceptable level.

    All the very best.
  • lin7604
    lin7604 Posts: 3,019 Member
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    Yes true. I have a friend that does that. Not sure why it's never been suggested for me? But again if the drcwill ever return my call I will ask all these things
  • jamesgdavenport
    jamesgdavenport Posts: 11 Member
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    I feel your Pain as I have the same difficulty as you. I have to practically starve, (1500 calories per day) myself and kill my self at the gym, (I get in my 10,000 steps plus I ride an average of 15 miles per day on my bike at 12mph) to lose anything at all. The moment I ease up I gain back the weight I lost. Its so frustrating I am not trying to get to an unrealistic weight or anything I am just trying to get to a minimum weight that is healthy for my height and age.
    lin7604 wrote: »
    I've felt with being hypo for 18 years. Back in 2012 I started to get into fitness and eating right to lose what I was gaining! I did... very very slowly! Now after the last year hitting road blocks I have gained again! Of course ! Yet this time trying to lose it is impossible and I just keep gaining! They say my labs are normal and no one will switch my meds or dose! What does one do? I've been better with my eating And exercising faithfully yet when I stepped on the scale today I gained again, now at my highest since 2014/15.

  • lin7604
    lin7604 Posts: 3,019 Member
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    So glad someone else understand how I feel!!!