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Unacceptable side effects of Levothyroxine

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I was described Levothryoxine 2 years ago and my GP has increased it until I am now taking 125mcg.I have never had so many various symptoms in my life - severe weight gain including puffy face and eyes, very itchy dry skin, brittle nails, thinning hair but the major items are the pains in my joints and muscles - especially in my knees and my hands. The doctor said I have carpal tunnel syndrome and also now have high cholesterol,,,,,,, When reading other peoples' experiences it would appear that many people have all of these symptoms so why is it that GP's do not take this illness more seriously. I recently asked if I could have a full blood showing all readings and also if I could be prescribed Armour and was told no. It also scared me to find that several pharmacists in major chemists haad never even heard of Armour. Has anyone felt like they have had enough and just stopped taking Levothyroxine and what was the result?

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  • ginger22
    ginger22 Guest

    Posted

    As I have experienced it this illness is not taken more seriously in the US... or anywhere.   If there is a doctor who can find the right kind of individualized thyroid replacement medication and who agrees that the terrible symptoms/side effects are from levo and not other things, please let me know. What I do know is that if you have had your thyroid removed because of cancer (or any other reason) you MUST HAVE THYROID HORMONE REPLACEMENT.  After my partial thyroidectomy and cancer diagnosis, the doctor said I needed to wait until the RAI (radioactive iodine ablation--destruction of the remaining thyroid cells in my body) before starting the levo. Four months later I had the RAI.  Still no levo prescribed.  By the end of January, I could not walk (was close to death) and was sent to the hospital with rhabdomyelisis (you can google this condition) because I had needed to begin taking the replacement levo or other form of thyroid replacement right after the RAI. After four days on IV's, I was able to go home.  Even though I had begun taking the levo while in the hospital, it was about four months before I could walk well or do other things normally.  As I've written recently, the side effects of levo/Synthroid/any other form of this have been terrible over the past nine years...but taking this replacement for what my body was producing naturally before is better than dying.  I can only hope that pharmaceutical research finds the answer while I still have time to benefit from it (I am 75).  Good luck to everyone who is trying to find answers for yourself (as I have also tried to do), but please don't stop this medication altogether if your thyroid does not function at all. It is as important to life as insulin is for diabetics.

     

    • barbara98940
      barbara98940 ginger22

      Posted

      Ginger, as your body went through this much trauma, you might have problems with your adrenal glsnds.

      Do you have symptoms of adrenal gland problems? Look up cushings disease and addisons disease.

      Have you had your adrenal glands checked. If there is a problem with them, it needs to be fixed as it means you won't be processing thyroxine properly.

      Are you on synthetic thyroxine?

    • barbara98940
      barbara98940

      Posted

      As you have no functioning thyroid, it is likely that your body isn't converting T4 to T3 as efficiently as it needs to be (Shelley mentioned some of this conversion is done by the thyroid). So ideally you need to be taking one of the following: 1) synthetic T4 and T3; 2) synthetic T3 only in several doses split over the day; or 3) NDT (natural desiccated thyroid).

      I am doing (3), using an NDT I got from the internet without prescription. Let me know if you want the details. I'm not medically qualified and don't know what other medical conditions you have, so I'm not advising you to take NDT, I'm just giving you the information so you can discuss it with your GP / endocrinologist. Let me know how you get on. All the best.

    • ginger22
      ginger22 barbara98940

      Posted

      Yes I do.  I have Conn's syndrome/disease.  I had a large cyst in my left adrenal gland which caused, among other things, an inability for my body to process sodium. In order to "cure" this, my entire left adrenal gland was removed three years ago. My blood pressure dropped 75 points afterwards (it was 225/110) but I must keep my sodium intakake under about 800 mg/day to keep the BP from rising and avoid gaining 5 to 10 lbs. of fluid. The surgery was supposed to help this problem but I was told that it doesn't always help when the adrenal cyst has existed for so many years.  I have never been well since that surgery and have become much worse in my response to levo also.  I discovered on my own your suggestion (2) and  take split doses of T4.  But I still get severe body pain, especially in my knees and legs and within an hour after taking even the 1/2 doses morning and night.  I took T3 a year after my thryroid surgery and felt very ill with it so I stopped. I am now using a wheelchair if I am anywhere that requires much walking.  My doctor has diagnosed it as fibro but I know that the pain is a direct result of the levo problems. I was very healthy before the thyroid surgery. I tried NDT about 8 years ago and had a severe allergic reaction (maybe because it was porcine). 

      Please let me know the details about the NDT you use. My very capable internist is open to my suggestions and is ready to hear anything that might help.  He admits that he is completely puzzled about my situation.

      Thanks for your input.

    • LAHs
      LAHs ginger22

      Posted

      Hi Ginger,

      NDT is not only Porcine, it can also be Bovine (from cows). In history they even used sheep. I take NDT porcine.

      It is a moral dillemma when you aspire to being a vegetarian and you need NDT!

    • MtViewCatherine
      MtViewCatherine LAHs

      Posted

      Hello LAHs, have you found any information on whether the T4-T3 ratios are the same or different with the different sources? I've heard that porcine naturally has much higher T3 than humans, which can create another problem, though not as bad as the T4 only. I'm wondering if the bovine or sheep is more bilogically clase to human T4-T3 ratios.
    • MtViewCatherine
      MtViewCatherine ginger22

      Posted

      OMG!  This is so abusive to let patients suffer and let their bodies degrade under the guise of "medical protoclol." They did the same to my mother and she will never recover, and is in a care facility now until she dies, as her older brain cannot recover from this sort of thing.

      Ginger, Yes. Thyroxin is to hypothyroid patients as insulin is to diabetics. When i was living in Los Angeles, doctors were a little better there because there are so many weight conscious people. But still there are plenty of doctors there who don't get it, even there. Since relocating to Northern California, I still have not found a good endocrinologist and make the long driver periodically when I need my meds increased, as  my GP here is too afraid to do it. It doesn't match their standard, dysfunctional  protocol.

      The other thing that's really important is to have a good counselor to help you feel supported and keep your life on track. Because when it gets low, you don't realize until your whole life's gone down the drain. I've found this to be a repeating pattern since I've had thyroid disease.  I'm hoping that a counselor will help me keep my focus even when the brain fog has taken over.

       

    • LAHs
      LAHs MtViewCatherine

      Posted

      OK MVC,  this is what I have found:

      In Humans, as we all know, our T4:T3 ratio is 14:1 meaning that for every 14 units of T4 we get 1 unit of T3. (For completeness, some sources put that at 10:1, and others 11:1).

      Pig's T4:T3 ratio is 4:1 meaning that for every 4 units of T4 we get 1 unit of T3. 

      So, you can see that the T3 is a lot more dilute in humans than in pigs. 

      Cow's  T4:T3 ratio is 9:1. And that I don't quite understand because they say that pigs thyroids are the closest to humans, because 9 is closer than 4. Maybe they mean other biological factors - less rejection of what the body sees as "foreign" elements.

      I couldn't find the sheep ratio - although that was widely used in New Zealand in the early history of thyroid medicine. Researching this topic on sheep made me feel sick and I had to stop.

      Cats are very interesting, their ratio starts off as 2:1 at the thyroid but changes to 20:1 when it reaches the liver. I.e. it starts off very concentrated but then ends up very dilute - interesting. But then cat's are very special!

       

    • LAHs
      LAHs

      Posted

      Ginger, like MVCatherine I too have to travel a 400 mile round trip to see a half way good doctor. He too is hung up on TSH but will prescribe Armour so I compromise and put up with the fight not to reduce my dose. Why can't life just  be simple, 1 1/2 grains fixes me - why can't we just leave that alone!
    • MtViewCatherine
      MtViewCatherine LAHs

      Posted

      I can clear up the question about pigs... You sort of touched on it. But, as you say, the cow ratios are more similar to humans, yet porcine is preferred due to "compaitibility". Often, pig valves are used in human hearts because they are genetically close to himans and aren't likely to be rejected. So this idea carries over to thyroid medication. However, the ratios in the pgs are wrong, and we already have autoimmune disease, th yroid resistance ands o forth if we have thyroid disease. So I'm not sure that it makes sense to take the porcine. Its similar enough that it could actually worsen the autoimmune response. If you use bovine, the body recognizes it as foreign and will attack, so you basically jsut would have to have a slightly higher dose. My point is that if your body attacks the bovine, it is different enough from human, that it would not cause further autoimmune disease, where the porcine could. Of course no research has been done on this, so I'm just throwing it out there. Forthis reason, I've been curious about the bovine and the factthat the ratios are more similar to humans may solve some of the roller coasteringissues in that with the porcine, you get too high T3  and low T4, whereas with the levo (T4 only) you get high T4 and low T3. So in either case, you have to highball the dose to keep both levels up enough.

      I'll keep this in mind, along with the fact that if you do the natural Bovone, you can purchase OTC and are not captive to doctor's controls. My reservation is the changeover, since its extremely hard on my body. Thoughts?

       

    • Scazzoh
      Scazzoh MtViewCatherine

      Posted

      Hi Catherine, I have just started taking bovine and according to the website where I get it from the 'changeover' is very gradual, over a 6 week period. You gradually introduce the bovine and reduce levo. I've had four doses and so far have not noticed any great improvements or worsening. However, my basal temperature has been a consistent 36.6+ which it hasn't been for years, (been around 36.4), so something is happening. 
    • MtViewCatherine
      MtViewCatherine Scazzoh

      Posted

      Hello- Glad to hear more about the Bovine. It edfinately sounds poromising.  Interesting that  my doctors here in the past have really discouraged taking both at once. Instead, they stop one, start another type, but at a much lower dose, so then it takes two years to get back to normal. I'm looking forward to hearing more about this simultaneous changeover. Keep us posted!
    • barbara98940
      barbara98940 LAHs

      Posted

      Thanks LAHs this very informative. I wonder if, because I am a feeble converter of T4 to T3, the higher T3 ratio is why I'm getting on so well with bovine (aka cow) NDT?
    • barbara98940
      barbara98940 MtViewCatherine

      Posted

      To add my experience to the melting pot...

      I'm on the bovine NDT. I started it on 23 June 2015 and the blood test on 27 September 2015 showed thyroid tests all in range - whoopee! For the first time in 20 years! [TSH=0.82 mu/L (range 0.4-4.9); T4=13.0 pmol/L (range 9-19); T3=3.8 pmol/L (range 2.6-5.7)].

      I did the changeover differently from Scazzoh as I had already stopped synthetic levothyroxine ( because I became intolerant to it - it made be itch and swell up).

      I followed the instructions on the website to start on 150mg per day. It said to increase it after a week but I did so after 3 days to 150mg twice a day. Two weeks later, because i was still getting hypothyroid symptoms, I increased it to 300mg in morning and 150mg 6-8 hours later.

      Two weeks later because i was still getting hypothyroid symptoms, I increased it to 300mg in morning and 300mg 6-8 hours later.

      Two weeks later because i was still getting hypothyroid symptoms, I increased it to 450mg in morning and 300mg 6-8 hours later. This where it had been for a month when I had the blood test on 27/9/2015. So it only took me 3 months to get to normal.

    • MtViewCatherine
      MtViewCatherine barbara98940

      Posted

      i barbara, This isi very interesting. I''m curious as to what dose you were on for the Levo? I'm wondering how much of the bovine is comparable to say 1 microgram of the levo or the Porcine. By your dosing, it looks like you have to take a much larger quantity? Does that end up to be inconvenient? 

      I'm doing OK on the porcine, but my gut is telling me I would probably be better off on the bovine as long as I can manage the dosing.

      I'm not well enough now to try switching. So I'll have to wait a bit. The switching in the past has been so horrendous for me, that I know I need to be extremely careful when doing so and I need to be healthy to be able to tolerate a switch.

       

    • barbara98940
      barbara98940 MtViewCatherine

      Posted

      In response to your question about high dose of ThyroGold being inconvenient: it isn't. The 300mg tablets are the equivalent in size to a 500mg antibiotic capsule.
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