Unacceptable side effects of Levothyroxine

Hi JP, O- M -G!!!! If your doctor ignores the fact that this medication doesn't work for you and you're blowing up like a balloon, as I did, GET ANOTHER DOCTOR!

I blew up like crazy from the levo, massive water retention and weight gain, and no it wasn't my period. I felt like I was having kidney and heart failure. I got no help from any of the doctors in my network. I finally went to my old Endo, 350 miles away to get help, since he's the only one I've ever found who actually knows how to read the blood work and dose the meds.

i have several friends on thyroid meds and they all pretty much say this medication is crap and doesn't work.

in the mean time, yes, my cholesterol was through the roof and my blood sugar tests were high, both of which had never been a problem. 

The only thing this medication did was make me sick, fat, thinning hair, migraines, arthritis, pain, massive water retention, anxiety, heart palpitations... I went from a size 4 to a 12!

When I went off this I tried to go back to the NDT, but that no longer worked. When I finally went to an OTC, I could literally smell the chemical detox as these chemicals came out of my system. 

Looking back, I feel like I was being poisoned by this stuff. 

The voice of reason is that you need to treat hypothyroidism, so you can't go without meds.

Hi Rosie, thanks. Seems like there's a pattern here. Basically, not only does this drug not work, but it makes the illness worse by triggering the autoimmune disease that caused the hypothyroidism in the first place.

Yes that's what ahppened.   When I first went to the Doctor she told me that some brands of Levo were given people symptoms of hyper thyroid, I then went into what I can only think, as no one has actually diagnosed it, Thyroiditis, whcih as I've said before is the only symptoms that fit what I have experieinced.   I have now booked a course of acupuncture to try and level the thyroid hormones, which are playing up again, although not as bad, this is consistent with thyroiditis.   Amazingly the Acupuncturist made more sense than any of the Doctors I have seen and understood exactly what was happening, amazing.   I will let people know if this course helps or not.

Hi Cherylle, unfortunately, thyroid disease is similar to diabetes in that your body doesn't produce a vital component. So you can't just NOT treat it. You MUST do something, or health will deteriorate, and your sister will have rapid aging due to slow metabolism. 

However, it sounds like it's obvious this medication doesn't work for her. So she needs to find something that does work. If the doctor isn't open to any other sort of treatment, she'll need to find a doctor who is knowledgeable and willing tomwork with her..She'll also have to do a ton of research on her own about how to deal with thyroid disease. There are lots of books and free info online. So there's a lot to learn. There are some dietary changes she can make that will help some. But keep in mind, there isn't a quick fix. It takes decades to develop throid disease, so it also take years to heal it and often years to just find the right medication. 

My thyroid went capuht in 2009, it took me until 2012 to get medication and after trying at least 10 different prescription medications I gave up and found an OTC organic bovine glandular  (non prescription) that seems to work better than any prescription medication.

Well, that's what worked for me. I've also gone completely gluten free, and have worked closely with some alternative practitioners to help the body recover from the horrible effects of the low thyroid and the side effects of the meds (most of the meds seem to cause fibromiagya and other autoimmune disease).

Good luck and I hope your sister feels better soon.

Thank you Catherine for your advise I will be passing it on to my sister, the biggest problem we have is it looks like this disease started with my twin in her 20, s and she has been misdiagnosed for many years she is now 45 going back 4 years ago we nearly lost her as consultants were treating her for many other ailments one of them was hyperactivity she wasn't hyperactive she had an over active thyroid and with all theddifferent medication she was taking it masked the thyroid problems for years it was only when I begged her to stop taking what ever the doctors were giving her,did they realise there was something seriously wrong and done more tests which then showed up this disease, she had the drink just over a year ago which only then brought out the goitre in her kneck it has slowef it down with the readings they had but she was advised by her own gp not consultant that it can flip again at any time. I will be helping her to look into other forms of medication and diet she knows of diet but thats it no info what so ever I really appreciate all the replies but thank you for your time Catherine and ADVISE it will help us im sure.

Flippin' thyroid, you're absolutely right.  When I tried going back to the NDT after the levo, it didn't work the same as it had previously. My feeling is that the NDT I was taking was cut with levo or some other synthetic, because the side effects were lessened  but I was still very sick and it didn't seem to work. I know that sounds nutty, but that's the data that my body is telling me.  I switched to an OTC organic bovine glandular and am doing much better. In fact, I can think a lot straighter no. Thank goodness!

Previously, I was able to stave off thyroid disease for over a decade, and I believe it's due to a diet high in animal protein. I've been doing some research and came to this conclusion when looking at the precurser of thyroxin, tyrosine. Looks like there are some studies that show there may be a problem with tyrosine production that causes thyroid disease and growth. I'm looking into increasing tyrosine foods in my diet as well as supplements.

I guess my brain fog has been really bad on the levo, because it seems I shoukd have run across this information in previous searches. I only found it when I specifically did a search for defective thyroxin precurser. I'll keep looking into this, as it seems this is a better approach than medicating at the end of the loop.

I have found that my body appears to be craving high animal protein as well.   I am finding that I just want to eat cheese and fish a lot and can't fancy carbohydrates, then I did some research as well and found out about high protien diet.   It's amazing how if we listen to our bodies we can find out all sort so things that fit with the research.

Hi, my experience suggests that a lot of the NDTs have the same fillers in that are used in the synthetic thyroxine and it is these that are causing the side effects and bad reactions. I too have switched to a filler-free bovine natural desiccated thyroid. I have to buy it myself over the internet because the NHS won't fund it. My NHS doctor is running NHS blood tests for me.

I have also been following a diet low in sugar and carbohydrates. If I eat sugar, I swell up - lower legs & ankles & fingers (it makes my fingers stiff & painful to bend). I also get painful joints particularly fingers, wrists and knees. This makes it feel like I've sprained them. It makes It difficult to walk when it affects my knees. Sugar is reported to be a natural inflammatory and my experience supports this view. For the last year I have been following a diet that is high in animal fat and vegetables (not potatoes) and avoids all processed foods. If I stick to this no sugar no processed foods diet, I am painfree. I have also lost 30 pounds in a year at an average of half a pound a week. MtViewCatherine - I would appreciate a link to the research about animal fats and tyrosine as I think that's what I've unwittingly done... I used to need 750mg ThyroGold. An equivalent dose for my current weight of 48.3kg would be 600mg yet my blood tests and symptoms suggested this was too high, so I dropped the dose to 450mg. I've now been on this for 4 weeks and am going for a blood test today (prior to taking my medication, else it gives incorrect results). At my last blood test on 5th July 2016 my T3 was in range, T4 was high and TSH was suppressed (<0.01).

6 weeks prior to that T3 & T4 were high, so I dropped my dose from 750mg to 600mg. My weight has been stable over this period so a comparison of the results is valid. It looks like for some reason my body is better absorbing the thyroid meds. Your thoughts and insights would be appreciated.

PS I also don't eat fruit as it has the same effect as sugar.

I'm also on high protein diet, it seems that is what my body is craving as I don't fancy anything else.   I think my problem is slightly different as my thyroid is fluctuating up and down, although it is slowing down a bit now and nowhere as bad as it was.   I haven't had any side effects with ERFA so far, but it is early days and who knows.   I am having a course of acupuncture to help to balance the thyroid hormones so will see how that goes, I have had good experiences with acupuncture before for various things, it seems to suit me, but again it is all trial and error, finding out what works for the indivdual person, what works for one person invariably doesn't work for someone else.  Which is why it's so crazy that there is only one medication from the medical practitioners and a one size fits all attitude, which obviously doesn't work.

i never saw anything about thyroxin specifically either..now i'm checking into it...interesting...