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Feel like I'm dying a slow death

Posted , 7 users are following.

sue71351
sue71351

After reading this forum I know I am not alone.   I had my thyroid removed completely so I must continue taking thyroid medication.   To also add to my grief my parathyroids stopped working,  so it is  hard to get a clear picture what is causing all my aliments .   I am 50 but my body feels 90.   I have 50% range of motion in my right arm and pain feels like arthritis in my hands, neck, back & knees. It is difficult to get a good night sleep due to pain. I can no longer work full time as some days I cant get out of bed and when I do it may take 2 to 3 hours to get myself moving.  I am so discouraged!   I am in Canada and have attempted to get on dessicated thyroid, but my issue is that the endro's do not seem to know how to dose it properly.  From what I have read is if you take 150 of synthroid it is not the same dose for natural.  My body gets completely messed up and levels go through the roof.  I need someone in Canada to monitor me who has a good understanding of the dessicated thyroid. I have tried t3 but I feel like I am on speed with my internal body constantly shaking.  I had my thyroid removed 4 years ago and my symptoms keep getting increasingly worse.  I feel like I am going crazy and not sure what to do at this point.  I feel as though I am in my own bubble with nobody out there willing to help me.

I can only be my own advocate to an extent.  I need a proper prescription of thyroid replacement and a doctor with a good understanding to monitor me. At this point I feel as though I am an inconvenice to my GP and endro and they think I am some kind of psycho with mental issues.... that is not the case.. I am young vibrant 50 year old woman trapped in a 90 year olds body and I can't get out!sad

 

1 like, 8 replies

8 Replies

  • doreen75627
    doreen75627 sue71351

    Posted

    I feel for you, I am in the UK and was diagnosed with an underactive thyroid at Xmas and now take 100mcg of thyroxine which seems to be okay. What I can tell you is I changed from taking it in the morning to last thing at night as I was feeling spaced out, lethargic etc all day. The difference was noticable straight away, it seem the pills do there worst at night when I am asleep so hence I feel better during the day. I hope you get the answers you need from other users of this site, lots of people I have talked to who use levothyroxine said it takes quite a long time to stabalise before you feel better.We get monitored about every 6 months over here to see the levels are correct. Good Luck.
    • mld
      mld doreen75627

      Posted

      Hi Doreen,

      I wanted to clarify something you wrote.  Are you saying that you did better while taking your medication at night?  I was thinking about changing what time I take my medication to bedtime and wanted to make sure that is what you said was working better for you. 

      Thank you, MLD

  • carol11091
    carol11091 sue71351

    Posted

    Sue, I felt the same way 6 months ago but everything has changed. I started taking magnesium tablets for anxiety and depression for a month and they really helped. I had regular blood tests for tsh and eventually ended up taking 100mcg which is what I'm on at the moment. Most important is to wait an hour after taking the medicine before having breakfast. Don't eat ANY ready made foods but buy everything fresh and cook it yourself without salt. You will get salt naturally in certain foods and you already have sodium in the medicine. Any medicine taken must be taken at least four hours apart from the levo and in some cases eight!

    Don't use fluoride toothpaste and avoid cabbage and members of the cabbage family. All I can say is that while I was adjusting to the medicine, and everytime I had to put up the dose, I felt like hell! You may also be very low on vitamin D so you should probably take a supplement and make sure you force yourself, if necessary, to go for a walk every day, working towards an hour a day. All these little things made ALL the difference to me.

    • ttc
      ttc carol11091

      Posted

      Whats up with flouride? Whats up with cabage? I heard that for rh negative blood type but not for thyroid. Let me know. 
    • carol11091
      carol11091 ttc

      Posted

      I can no longer remember what I was told about them; I think it was something to do with an enzyme that interferes with the levo, stopping it from working correctly.  Some people manage to eat it if it's cooked but making sure there is a big gap between taking the levo and eating the cabbage. (Radishes and  brocoli are part of the same family) I was suffering so badly from heartburn ( which I thought was my heart) and I got sharp pains shooting through my breast ( thought it was coming straight out of my nipple ) and it was all related to things I was eating. I eliminated all the above mentioned and have never looked back. I intrduce new foods into my diet , one by one and am particularly attentive to how my body reacts.; i also stopped eating sugar and rely only on the sugar naturally found in fresh fruit. Another no no is fruit juice bought ready made. They are full of sugar and have very little fruit content. For the cholesterol ( which automatically goes up with hypothyroidism) I was recommended almonds, preferably unsalted but I eat the salted ones sometimes as well, about 10 to 15 a day, again, I sometimes eat more! and my bad cholesterol has gone down, my good cholesterol has gone up and for the first time in over ten years my cholesterol has reached normal levels!
    • ttc
      ttc carol11091

      Posted

      Ya me too. I gave up nuts do to calories. Im eating a ton of spinach and it seems to be ok
  • ttc
    ttc sue71351

    Posted

    Had 3 treatments of the iodine over a 2 year period to kill my thyroid. My levels are finally right for the first time in 12 years. Synthroid makes me sick so I have to take the levothyroxine. Supposedly synthroid is supposed to be more stable but it just makes me feel like vomiting. Ive always been on the wrong level of levothyroxine. For me eating healthier fresh foods vs packaged foods has helped alot. I dont try to diet now. I eat a ton but its just not fried or full of preservatives. Been swimming cause I got joint pain also. Been losing weight and feeling great ever since. Im in california. It seems like they treat things differently in u.k. and canada. Stand up for yourself to those doctors though. U deserve a quality reading. This is a good website. Lots of good people. U can pick up alot. The problem is the doctors cant feel what u feel. If I dont take my medicine for more than a day my body shuts down like im gonna die. Consistency and research is the key. Your not alone. But your gonna have to figure out what u can eat. Whats good for joint pain. Basically become your own dietician. Keep records. Ive had alot of good doctors so dont lose the faith. It takes about 4 to six weeks to get a good reading. Get checked often untill u get regulated. Your not crazy and your not alone... its been 4 years for u... not too late to make a comeback. 50 is the new 30..... ok maybe not... but still dont give up.   Your body needs rest also. If your heart rates high your body wont rest and everything will become fatigued. Its a good indicator things arent right. Let me know
  • margaret89120
    margaret89120 sue71351

    Posted

    Hi  your post sounds just like my life, dead until i started NDT you can buy it on line if you cant get a prescription . start with 1/4 of a grain for two week , then up it to 1/2 grain  do not go any faster or you will get side effects  ie raped heart beat breathlessness etc  after two weeks on 1/2 grain have a blood test to check THS and T4 and T3 levels if they still look under increase by another 1/4 for two weeks

    keep doing this until you feel really good again but do keep checking your blood

    you dont want to over shoot as it takes time for the hormone to built up

    I was advised by my endo after seeing other doctors that didnt have a clue

    I am up to one grain now and feeling almost there its great to feel alive again after spending 10yrs as the living dead  give it a go you want be sorry  but take it slow it worth the wait

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