I've had a overactive thyroid for 2 years and I'm fed up, any advice?

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hi there I've had a overactive thyroid for over 2 years. My symptoms were hot flushes, shakes, weightless and general hyperactivity. Since being treated for this I feel that I've never actually had that moment we're I thought I feel better. It's been a constant battle with the meds, I've never really been stable. However over the last couple of months I feel that my symptoms have completely changed I'm cold all the time I'm gaining weight and the tie redness I feel on a daily basis is unbareable. I recently had my bloods done and I'm overactive at the moment, the doctor has advised me to take the same dosage and exercise for fatigue! I really feel as if no one understands I'm 26 I'm a full time mum studying and I can't cope with these urges to constantly sleep anymore it's making me depressed. Does anyone else feel like this or have some advice for me please because right now I'm desperate.

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  • Posted

    I know lots of people whohave no thyroid due to surgery or radioidine therapy. .they sre on thyroxine and have had no problems. .heard it is as close to our own naturally produced hormone as is possible so side effects nil
    • Posted

      Most people are prescribed Synthroid for hormone replacement.  Synthroid is synthetic T4.  Your body produces T3 and T4 and the synthetic T4 does not do it for many people.  Some people are okay on it but many more are not.  A lady on another Board made a movie about this.
    • Posted

      Many doctors take a "one size fits all" approach to managing thyroid care.  TSH levels are the main, if not only, test they really care about.

      My FT4 levels rarely change while my TSH levels have ranged from 0.009 to 5.4 (or something like that.)  I suspect that I have problems converting T4 to T3.  

      I don't have any hard-fast genetic evidence, but I know that the conversion process relies somewhat on the Methyl cycle, and that sometimes if a person doesn't have a completely normal pair of genes for the process the person can be affected, depending mostly on which allele is affected.  I have a situation which is not considered much of a problem, but I take Methyl-B12 and Methyl Folate to make up for the possible missing ability to function well, and it may be part of the reason I feel better even when my thyroid is in the normal range.  

      I also have one allele not quite as it should be in my Carnitine Transport Gene which may not mean anything, but I find that taking the Acetyl-L-Carnitine helps me, too.

  • Posted

    all this t4, t3, and tsh confuses me. I know when I go to see my endo in March he's going to mention surgery I really don't know what to do😞
    • Posted

      Jessica, surgery and RAI are irreversible if you do not like the effects and many people do not like the effects.  You can get your thyroid hormones under control.  Three blood tests are not very confusing.  That's why you need to get at least one paper copy of your lab results that show the range for normal results and your results beside them.  You also need to watch your diet, eliminate gluten and aspartame and probably take vitamin supplements as hyperthyroidism depletes the body of vitamins and minerals normally found in the body.
  • Posted

    yeah I think deep down I don't see the point in replacing one tablet for another, I did a juice diet a couple of months back and I felt like my old self it was just hard to sustain. But yeah I need to find the right balance i already took a year out f uni and can't afford to take another break. Thanks for listening to me moan about the same stuff lol
    • Posted

      Do you mean replace supplement tablet for drug tablet?

      Supplements are not drugs. I think Linda made it very clear "hyperthyroidism depletes the body of vitamins and minerals".

      I would rather take supplements for the rest of my life than take drugs for the rest of my life.

    • Posted

      Because I didn't have my thyroid distroyed, I was able to go into remission after 2-3 years of being on Methimazole.  Now I take a lot of vitamine and mineral supplements but no thyroid medication or supplements.  

      Doctors will try to discourage you from using the drugs and will try to encourage you to destroy the thyroid instead, but you have to do what is in your own best interest.  

      It is not true that you have to be on anti thyroid drugs for the rest of your life if you don't have your thyroid removed--and, of course, if you have surgery, you definitely will have to take thyroid supplements for the rest of your life.

  • Posted

    no sorry wasn't very clear, I mean replace carbiazole for thyroxin
    • Posted

      Yes, there are always at least two ways at looking at things.  

      I would agree that there is no point in having the thyroid destroyed and then having to replace the Carbimazole with Thyroxine.  

      The doctor will disagree, but I'm not sure if it is for YOUR benefit or HIS.  Doctors think it is easier for THEM to treat you with Thyroxine.  They would argue the opposite way:  That since you will have to take one pill all your life, you might as well have it be Thyroxine which is easier for them to control and doesn't have the possibly risky side effects that Carbimazole might have.

      The thing they are not telling you, or are downplaying the importance of, is that you do not have to stay on Carbimazole your whole life.  I have gone into remission and you can, too.

      Be careful of diets like the juice one.  You need a well balanced, adequate diet [way of eating] in order to maintain a healthy thyroid.

      I also believe that taking the Carnitine has helped my tests come out more accurately.

      Panicking can work against the thyroid, though, or at least give symptoms that may seem the same as either hyper- or hypo- thyroid.  Take an antidepressant if necessary.  The SSRI type did not work for me, but the Wellbutrin did.  There are also anti-anxiety medications, but if you can feel well physically it is easier to control the anxiety. 

  • Posted

    Hello I have had a thyroid issue for about 6 years I have been off meds for about 3 years and it has now went back over active I have been a wreck i think I'm panicking thinking I'm going to get back to when we first detected it and I have terrible anxiety from I'm not having the hot flashes and just feeling terrible my anxiety is through the roof I feel like i won't feel the same again im an emotional Rollercoaster has anyone else felt like this wit hyper?
    • Posted

      I stop Tapazole on Jan 25 due to allergy. And I refused RAI or surgery. At first I felt worse. Now I start feeling better. I can't tell people which works, and which works how many percent. But I am doing 3 things together, it gets me better now, but I don't know if it will continue to get me better. Just a reference here.

      1) supplements

      2) light exercises

      3) traditional Chinese medicine

  • Posted

    Hi just had test results endo has highered my carbinmazole from 5 mg to 10 mg my bloods were  free t4 14.2 which is good but tsh was 0.19 which is to low but he never mentioned RAI but will have to stay on carbinmazole  for rest of my life but when my free T4 was 12.2 which was okay one of people on  here said to stop acetyl l carnitine  for T4 to go up which I am convinced dropped my TSH so confusing but am back on them so fingers crossed they will normalise again
    • Posted

      Yes Patricia, it is a very fine juggling act to keep your levels where you want them.  However, I doubt if raising your Carbimazole will affect your TSH.  My TSH remained at less than 0.001 for two years and my FT3 and FT4 were in the middle to high level of the normal range while I was on 10 mg of Methimazole.  I know raising the dose would have done nothing as my TSH did not rise until I took the Acetyl-L-Carnitine.  If anything you lower the dose of Carbimazole while you are taking it because it will cause your TSH to rise quickly and your other two levels to fall.  I think it also helps with lowering antibodies.  I found that the Acetyl even headed me towards hypo - my TSH was 2.7 and my other two were right at the bottom of the normal range.  When that happened, I got palpitations so I stopped the Acetyl until my TSH lowered to 0.65 and have now restarted it.  You also have to change your diet avoiding sugar, gluten and some people also avoid dairy.  Add a probiotic as the autoimmune diseases are thought to be caused by a "leaky gut".  You can play around with dosages - like taking the Acetyl every other day instead of every day, not taking it at the same time you take the Carb etc.
    • Posted

      What I have heard about the Carnitine is that it can make you hypO...  I take it to mean that the TSH goes up when you take it.  It might not make the Free T4 go down.  For me it hasn't had any bad effect.
    • Posted

      It does make the TSH go up and the Free T4 go down although there is less movement in lowering the FT4 than in raising the TSH.  In other words, my FT4 was not at the bottom of the range until my TSH had gone up to 2.7.  Though within normal range, for me that's hypo and I prefer my values to be mid range or better.
    • Posted

      With me, the FT4 was always mid-range or above, and only above range when I was decidedly hyperthyroid.  When I was on Methimazole (MMI) my TSH did not rise above zero until I DECREASED the MMI.  That was the last thing the Endo expected to have happen, of course.  I believe that is why they have such a poor success rate in using drugs to treat Graves' Disease.

      It was FT3 or even Total T3, that wouldn't rise above the low part of the range, often dropping below it, when I was on MMI, and even after I went off it altogether, until I started taking it (aka Cytomel, liothyronine, or LT3). Then my TSH dropped to zero again with FT3 and FT4 in the high end of the range, and my new Endo made me go off the Cytomel.  

      I was in horrible straits until my regular doctor put me on Wellbutrin.  It was as if it cured the low T3 problem without really making my TSH fall again. But, I haven't had an FT3 test since I started the Wellbutrin.

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