Skinny with hypothyroidism and meds dont work! Anyone else?

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I was diagnosed with hashimotos when i was six years old. I had a large goiter and my tsh was very high. I have never been able to gain weight, but it makes no sense to me! Shouldn't I have trouble losing weight? I am 20 years old now 5foot 10inches 129 pounds and still haven't gotten my thyroid under control. I was on .125mg of Levothyroxine for awhile but couldn't handle it because it made my heart race and was giving me problems. I got bloodwork done and my TSH was 12. I was then prescribed .88mg which I took for a while but it didn't help. It reduced the size of my goiter a little bit but that was it. I was still tired all the time, lethargic, forgetfull, and cold. I got my bloodwork done again after taking the .88 for a few months and my new TSH was 11.3. My doctor upped my medication to .100mg which I have been on now for about two weeks but im almost feeling worse than I did on the .88 levo. I'm so tired all the time, I can't fall asleep at night, I'm having intestinal issues, I feel anxious, I have had less of an appetite (which is NOT helping my weight situation), and one of the most annoying problems is that I am constantly cold! (like in bed with a heated blanket, a comforter, and a personal heater but i just cant seem to get warm!) Im going to make an appointment with my doctor, but like this is ridiculous! I need a regulated thyroid!!!

​Anyone else know of people that are hypo and can't gain weight??

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  • Posted

    Hi Anne, I'm also hypo & Hashi and can't gain any weight for more than a year. I am 36 yo, 175cm and have 53kg. I look anorexic. Not AS bad, but almost.

    Can't tolerate dairy and gluten free for most of my life, but I try to eat as much as I can. I force myself to eat and it's not something I enjoy, but there is no other way.

    You should try and maybe consider some vitamin/mineral tests with your doctor. Maybe you have some severe deficiency of something important like idk vitamin D, or B12 od Magnesium, or even iron since you've been with Hashimotos for so long now. Also, you should probably take Selenium supplementation since it is so good for lowering the antibodies.

    Best of luck, talk to your endo about everything. Also, check your fT3 and fT4 levels together with TSH just to be sure your body does produce enough T3. If your fT3 is low then maybe you should talk to your doc about adding some T3 along with T4.

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    • Posted

      I'm glad i'm not the only one! I also have issues with gluten and dairy. I was tested for celiac by a blood test, but it came back negative. I havent completely cut dairy or gluten out of my diet mainly because i like food too much haha. A vitamin test isn't a bad idea. I currently don't have an endo because I grew up going to the Children's Hospital of Philadelphia but now that i am over 18 I just switched to a GP and he has been the one handling it. Maybe i should look into an endo... Thank you so much for your response! God bless!
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  • Posted

    Hello Anne:

    My name is Shelly and I am a nurse in the USA.  I was 12 when I first was sick but being it was the 1970's (USA) they never tested kids back then.  I was 27 when I was fully diagnosed with Hasi's and I was very thin also. they thought I was Hyperthyroid at times,  and then my goiter came at 27 and things changed for me.

    I had bad symptoms as a kid of constipation and feeling COLD. I walked around the house in an adult onesie type PJ, and a bath robe on too and slept under a comforter as a kid.  My parents took me to the doctor who told me to eat raisin bran cereal for constipation, what a joke, LOL. 

    I moved to a warm climate so I could function when I was 19 and to get away from winter in the east coast of the USA.  I hated snow and cold weather as a kid.

    Back in the day I was thin also, and Hashi's can cause swings in your TSH and you can make extra hormone at times. So as you age the thyroid will change a bit and settle down. Some people with Hashi's can be more Hyperthyroid at times in their lives.

    It seems as I aged (now 55), I gained the weight and have to fight off the pounds now.

    You need to see if your meds may need to change and get a T4 and T3 level along with a TSH. Make sure they diagnosed you correctly.  Did they do the antibodies test ever on you?

    I did go off of Levo and onto the natural dessicated thyroid  Armour thyroid and some of us have to go off of LEVO.  You could try a lower dose 3 days a week and do your dose the other 4 and see if that helps.

    i am now on T3 only as my thyroid would not make  LEVO T4 turn into T3 well. Some people need an odd dose like 110mcg so you can break tablets in half.  Do it slow and see if that works.

    Regards, Keep us posted,

    Shelly

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    • Posted

      Thank you so much for your response! I am not sure if they did the antibody test (i was too young to understand any of that when they would have done it), but I would assume they did. I had a pretty good endo at the Children's Hospital of Philadelphia (I am also in the USA). I dont quite understand how the t3 works or how the t4 turns into t3... I am pretty sure i have the right diagnoses, but should probably see a new endo soon.

      ​One other question since you're a nurse, do you know if it was required to test babies in 1995 when they were born for thyroid problems? My mom had undiagnosed hypo hashimotos when she was pregnant with me as well as thyroid cancer just a few years after I was born. I think i may have been born with it but wasnt tested until later on. They say that babies born with it and untreated can have a lot of problems. I was very jaundice when i was born, never ate, had intestinal problems, and screamed all the time... any thoughts?

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    • Posted

      Hello Anne:

      OMG I was from Philly and moved because I hated the winters. CHP is a great hospital and lucky you to be diagnosed early.  I left in 1980 when I was 19. 

      The thyroid makes 4 hormones in total. T1 to T4.  For our conversation we only need to worry about T4 and T3.  T4 is Thyroxine 4 and is made after the Pituitary gland  in your brain,  gives a signal to the TSH hormone.  TSH is a sensor hormone and is always working 24 hours a day.  It senses that the level is low and tells the thyroid  gland make more T4 -help!  normally it would do that, but in some of us we can't make enough T4 and T4 must convert in the thyroid into T3. T3 is Liothyronine (big name), and that is the useable hormone for the body.  So with Hashi's you get a wacky ride and can have too much T4 at times and the thyroid is spewing out all the hormones. Hashi's makes the thyroid go haywire and you can get too much at times.

      Now  a days they test babies and kids esp. teens. As puberty can cause it also and a nasty virus called Epstein-Barr or Mononucleosis. Babies are now tested for anemia and if jaundiced they look for liver problems and put you under the bilirubin lights to cure that. some people have too much bilirubin when born.  It clears up.

      if you are low from birth you can have a condition called Myxedema if untreated.  Hardly seen in the USA or major countries today maybe in a 3rd world one.

      Babies can have Colic and make too much gas and be unable to handle formula and food.  The system can be effected if the thyroid is low.  So in short babies can have it and they normally test babies and look for the abilty to cry and color of the skin and if the baby wants to nurse etc...

      Most of us get thyroid disease during the ages of 20- 45 and someof us can get it as a child and some after menopause.

      Hashi's is passed on and I found my Aunt on my Father's side had it.  It can skip men and hit their daughters.  It is sneaky as some symptoms are weird and can look like a FLU or Lupus or Diabetes and you need a good doctor who knows the thyroid well.

      Hope spring comes for you all soon.  I moved to Hawaii and got out of the cold.

      Shelly

       

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    • Posted

      Thanks! The t3 and t4 make a lot more sense now! When i was a newborn i wouldn't nurse, and i was under those bilirubin lights (get to add those to embarrassing baby pics).

      ​Thats really cool that you used to live in Philly, I live right outside of it... I am so jealous that you are in Hawaii though! I, too, think i need to move to a warmer climate... Thanks again for answering my questions! Best wishes to you and God bless!

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  • Posted

    I am going throught he same thing as far as losing weight.  I have had Hashimoto's with hypothyroidism for many years now.  I have a shrunkin thyroid with a goiter, but cannot gain weight.  I eat ALOT and still nothing.  I am 5'6 and hate that I am thin being I am taller.  I have been losing 5 ponds a month, which is a big deal because I now only weigh 118. For being so tall, it looks horrible.  I have heard of others with weight lose problems with hypothyroidism, but I do not understand how or why.  I just wanted to let you know that you are not alone.  As for your medication dose change, I fely the same exact way every time my doctor upped my dose!  It did go away though, but it took a good month maybe a little longer.  I use to get scared thinking that I was over medicated, but I wasn't.  Now that I am stabe on one dose for a long time, I feel alot better.  Hang in there, it will get better.
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    • Posted

      Hey Melissa,

      Sorry I don't know why I didn't see this response until now... Thank you so much for sharing that, it's nice to know you're not alone! I totally get the whole not wanting to be underweight thing! Especially when you're tall (I'm 5'10" so I totally get it). I feel like I have a hard time building muscle too... Do u seem to have that problem? I'm a college athlete and the lack of muscle is definitely a problem haha

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    • Posted

      Yes!  I definitely have lots of muscle loss!  I actually drink a protien shake everyday before working out to help bild muscle mass and still nothing.  I'm so confused.  I work out alot to try to bulk up my muscles, do vitamins and minerals, and the protien shakes, but nothing seems to help.  I completely understand what your going through.  Yes... it is comforting to know that we are not going through this alone.  I have come across this on google.....

      In hyperthyroidism, the excess thyroid hormone literally eats up muscles, and it’s referred to as muscle wasting. Muscle protein breakdown and decreased muscle mass is measurable in Graves’ hyperthyroid patients. It is most apparent in the upper arms and thighs, and muscle testing will show decreased muscle strength. Abnormal measurements of muscle protein breakdown normalized after treatment brought thyroid levels down.

       Hypothyroid patients also complain of muscle weakness, but this is from lack of thyroid energy, not actual muscle breakdown. Hypothyroid patients complain of paresthesia (tingling, like pins and needles), carpal tunnel syndrome, and peripheral neuropathy (weakness, numbness, or pain, usually in the hands or feet). In one study, 70% of the hypothyroid patients had abnormal electromyograms, which measure the electrical activity of muscles (at rest and during contraction).

       

      I am confused by it though,  I am not hyper, I'm hypo.  But as of right now, my endo has my TSH at 0.95..  Which I was told was perfect. I have NO symptoms of being hyper at all.   But, even when my TSH was high and I was hypo, I had this muscle loss.  Now that I'm on the levo and levels are good, I'm still losing my muscle.  I just don't understand..lol.  I know people need alot of protein to help gain muscle, but just not working for me.    I'm actually going to look for some more info on this as I am very interesed to what other connections to hypothyroidism this has.  I will let you know if I come across anything more that's interesting.. Best wishes...

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    • Posted

      Thanks! Yeah Do u have hashimotos? I've heard before that hashimotos patients sometimes go back and forth between hypo and hyper. I have hashimotos so I wonder if that could be it. My TSH is unfortunely not quite under control. As of a month ago my labs showed my TSH at 11.8.... Maybe the lack of muscle could be due to the fact that it's an autoimmune disease? Who knows... I've tried protein type shakes but I'm lactose intolerant so I can't handle the milk in them. I eat protein bars tho and still nothing. This past year and a half was when I noticed it most because I had major knee surgery and after my left leg muscles atrophied I really struggled to gain it back. It's still not the same size as my other leg and that's after over 300 hours of PT along with weight training at my college for basketball lol.
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    • Posted

      Yes.. I have Hashimoto's also... and I'm lactose intolerant too.  So, I actually make the protein shakes with water.  Don't taste as good, but I get it down...lol.   Yes, you may be right in that it has to do with the autoimmune disease part.  You have me thinking now.  I'm going to look into it.

       

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