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john16264 john16264

Taking non prescribed levothyroxine.

Please read before making a judgement.

As the title says i've been taking non prescribed levothyroxine that I purchased from Canada on the internet. But, i've been taking them for genuine reasons. I am hoping that someone can help diagnose what is wrong. 

I'm a 55 year old male. About 5 years ago i started to become more and more lethargic, cold hands, pretty much ticked all the boxes of thyroid problems. I've seen the doctor several times, had thyroid tests and just about every other test. All came back clear. After about 2 years and seeing the doctor several times I concluded that it was because I had a slow pulse, at rest this would go as low as 40bpm. The doctor sent me to a cardiologist for several heart tests. The cardiologist found nothing wrong. To my amazement the cardiologist suggested i may have thyroid problems. I asked the doctor could I trial thyroid treatment and was refused. Months went by with my aching bones, always cold and feeling like i was 100 years old. Rightly or wrongly I needed to know for sure so i bought some levothyroxine of the internet. I have not found anything anywhere that explains what happened when I took one. Everything I read suggests that it takes weeks or even months for them to work. This was not the case with me. I took my first one early morning. 50 micrograms. About 3 hours later all my muscle aches and pains disappeared. I've had muscle pains for as long as I can remember. I carried on taking them and other things happened that surprised me, bags of energy, generally happy, and very strangely, greatly improved hearing, my restless leg syndrome disappeared. Most of all, pain free. My diet no longer contained daily paracetamol and ibuprofen. My raynaud's went and my resting heart rate went to 60bpm. I took them for about 6 months and felt great. I knew that taking non prescribed medication was not only wrong but could be very dangerous.I went to the doctor and confessed. Further tests and lots of vitamins, visits to the endocrinologist but nothing. I stayed off the levothyroxine and put up with the pain for the last 2 years. Yesterday whilst getting my daily paracetamol out of the medicine cupboard I saw the levothyroxine. Temptation took over and I took one. Sure enough 3 hours later pain relief. To me they the magic tablet that I so desperately needed. 

So I'm now looking for answers from you because taking non prescription drugs is not the answer but equally I have asked every question to almost every doctor and got nowhere.

Do I think that I have a thyroid problem, well actually, no I don't, or at best I'm unsure. I personally think that levothyroxine is triggering something else that the doctors haven't identified. I say this because of the almost instant and dramatic effect that it has on me. If there's perhaps one clue, the muscle pains that I have suffered from for years seems to be as if my muscles are binding together. The same feeling that would normally be felt the day after a hard workout at a gym.Taking levothyroxine completely relieves all this pain, when I say all I mean 100%. 

Please don't call me for taking the tablets, they were simply a need to know and I have seen many, many specialists. I don't need a lecture I just need someone to tell me what is wrong.

Many thanks


13 Replies

  • helen50835 john16264

    somebody mentioned something called deconditioning to me and was all same problems so im sure such as the tablets you are taking will work wonders wish i dare take some and feel better i have been ill since April started with pneumonia had 2/3 chest infections in 3 weeks was really ill started picking up after 2 month then rapidly went downhill was sent to cardiologist having a battery of tests now my thyroid was an issue but they did a repeat test 2 month later and said its ok now but i still have all symptoms x


    • MtViewCatherine helen50835

      Hello Hellen, these testing results of it's ok, it isn't, it's ok, it isn't, can actually be an indication of thyroid disease. As the disease progresses, the thyroid sort of surges and then goes sluggish, as it tries to maintain. This can be a sign that the thyroid will soon go caphut and completely go to exhaustion and advanced thyroid disease. I would urge you to take holistic action before that happens. Diet, supplements, TCM have all been beneficial for me.

    • helen50835 MtViewCatherine

      What is TCM I will try anything just to have a life at the moment i cant walk upstairs without being out of breath have to have someone with me at all times i slept 15and half hours Monday night 12hrs last night its getting ridiculous i do have a bit of chest pain and chest is constantly tight from the chin down to waist but was in emergency room 2 weeks ago and they suggested anxiety. its all the waiting not knowing and still unable to do anything that makes me anxious x


    • MtViewCatherine helen50835

      Hi Helen,

      Traditional Chinese Medicine (TCM) involves acupuncture and herbal treatment. I've found it to be incredibly helpful in getting the body back on track after every time my thyroid goes wonky or I change meds, etc.

      You knowcabout the di tray stuff, right? High protein, gluteom free organic. This gives you more nutrition and decreases the immune system triggers. 

      Then there's also cleansing and supplements.

  • dana18818 john16264

    I know that I'll be criticized for writing this but you did nothing wrong and if I could pat you on the back and tell I've done the same, I would.  Your cardiologist suggested that you might be hypothyroid and your doctor refused to give a trial of knew what you needed and tried it...big surprise- it worked!

    I've had a similar experience and will send you a private message at a later date.

  • MtViewCatherine john16264

    Hi John, I did my best to read through your entire story, but honestly, it's sooooo typical of thyroid patients and what we experience, that you can read hundreds of other posts here with similar descriptions. 

    The difference is that you're proactive and sought help for yourself.

    Here are some guidelines from my experience:

    1. Thyroid disease often takes decades to diagnose. If you don't catch it in the correct stage, the TSH will not show as abnormal.  In addition, there are many points in the thyroid feedback loop that can go awry. Out testing only looks at a few of those points. Easier to miss thyroid disease than to catch the disease.

    2. You say 5 ars ago is when your symptoms started?  Thyroid patients typically have many other health complaints, and resort to completely troubleshooting and overhauling their diet and lifestyle habits in order to eliminate triggers to the immune system that result inthyroid disease. I'd be curious to find out where you live. As an evaluation of environmental factors may give you some hints as to the trigger if your condition. 

    3. Thyroid disease is autoimmune and is most typically caused by environmental toxins, radiation, chemicals. So diet and cleansing can be very helpful in reversing thyroid disease.

    4. As thyroid disease takes effect, other systems go down, and other autoimmune diseases take over. At a certain point, physical decline becomes rapid. Avoiding this is generally key in successful thyroid management.

    There ar many options for thyroid treatment. You might try an OTC called ThyroGold, as many thyroid patients find it more effective and safer than the prescription meds, for various reasons.

    6. I've been through the thyroid ringer and finally got relief from amino acid therapy. My mother has had a lifetime of thyroid disease and takes ThyroGold, with far better success than her previous prescription meds. My point is that there are many options, lifestyle choices, etc.

    Kudos to you for doing your research!!!

  • dave64969 john16264

    For what it's worth, my guess is you are probably correct in your theory. I have learned from others here, and from my endocrinologist, that the endocrine system is a complicated set of signalling among glands. Are you able to see an endocrinologist and tell them what's going on with you? Could help.

    in any case it's great to hear you are feeling so much better!

  • john16264

    I thank you all for your comments. I was fearful of a bad response but thankfully that hasn't happened. I will seek further medical advice from the doctors but i feel that I have already exhausted this path. Please comment if you think you may help. Thanks Tony., Manchester UK

  • sweetmelissa john16264

    Do you happen to know what your thyroid levels were?  TSH level?  Oh.. and I just want to give you a heads up on something... Once you start levothyroxine, you will most likely have to take it forever.  The levothyroxine actually shuts down your own T4 production in your thyroid, so taking the T4 replacement, your thyroid will have a very hard time "learning" how to regulate the T4 itself again.  This is a very big decision on your part and something to think about.  Also, it does indeed take a pretty long time for the T4 levels to raise with the levothyroxine.  I believe what you are feeling is the initial side effects until the body gets used to it.  It actually made me feel speedy and wired when I first started.  Oh.. and also, 25mcg is the standard starting dose, but I guess the 50 is okay if you feel okay on it.  If you start to feel too speedy or start to have heart palpitations, split the pill in half and take the 25mcg.  I would like to mention too, that some people actually take levothyroxine for weight loss reasons, of course without a prescription, as you do.  This is because it speeds up the metabolism, heart rate, body temp, digestion..ect.  Basically it speeds the whole body up.  So, watch your weight.  One more thing... people on levothyroxine need blood work every 4 weeks at first, until they find their optimal dose and then once every 6 months to a year.  How will you know your level?  Oh.. and this is a big now... if you continue to take the T4 everyday, and not even needing it, your TSH levels will become very, very low and can very well throw yourself into hyperthyroidism.  This will not be fun... and when and if you do, it will be months of horrible symptoms before your TSH will come back back up again.  Now.. I'm not bashing you for your decision, just making you aware of things that can happen.  Best wishes.. and good luck..

  • sweetmelissa john16264

    I also forgot to mention that there are possibly a hundred or maybe even more, things and conditions that can cause your symptoms.  It could even very well be a common vitamin deficiency to even a hormonal imbalance that is common too.  Perhaps ask your doctor to run some different test?

  • olive8 john16264

    Well I know under active thyroid can give you muscle aches and pains before being diagnosed and can make you feel tired and depressed too. I know it's dangerous to take thyroxine if you are not suffering from hypothyroidism and could make you hyperthyroid and  that would result in the increase in your heart rate..  

    are you taking other supplements ? because you have to be careful not to upset your hypothyroidism if you are.  It's better to check with your chemist to make sure before taking any supplement.

    Also are the tablets you took one of that made you feel better in about three hours still in date because thyroxine loses its effect very quickly. 

    You might be better looking for foods that are good for thyroid health like all kinds of berries and porridge in the morning.  Look up foods that are good for thyroid health. 

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