Unacceptable side effects of Levothyroxine

You make a good point, but in your last paragraph, you use the worn-out cliche of  ". . . please do not stop taking the medication without consulting your doctor first."  Doctors are not gods and frequently do not know as much about one's illness as the patient herself.  The doctor may not have even prescribed the medication knowing what she was doing.  Some of these people are very incompetent.  This medication is poison!  I made the decision to stop this medication on my own and have no regrets in doing so. 

 

I'd like to add that the query over the quality of Natural pigs thyroid has proven to be erroneous. The other thing to bear in mind is that hypothyroidism can be caused by other medications a person is taking e.g. lithium for a mental health condition.

Hello, Pamela

I agree with you. I can't even remember the symptoms I was having when I was originally prescribed the stuff about twenty years ago, but I feel rotten a lot of the time and have one or two other side effects which I'm utterly fed up with.  May I ask how long ago you gave it up?  I'm on the brink of doing so - I'm only taking 50mcg daily and am tempted to just stop, so as hopefully giving my thyroid a kick-start, rather than cutting down by half. 

Hi Barbara- I don't know if you saw my previous post... It may have been deleted. I recently was surprised to discover that Synthroid had been on the market here in the US for 56 years, when in 2001, the FDA requested they get drug approval. It was approved in 2002. What this means, is that this drug was never tested, which explains why it doesn't work and has a bunch of side effects. Approval usually requires years of clinical testing testing anf proof of efficacy, and proof that side effects are reasonable for the treatement. This synthetic drug apparently was "grandfathered" in and gained drug approval because its been on the market for so many years. Furthermore, the generics and other synthetic levos out there, then only had to prove equivalency to the existing drugs, not efficacy. So it appears there's a whole line of drugs that have never been fully tested. In addition, unlike other synthetic hormones, which are not allowed to use the natural name of the hormone they mimick, all these synthetic T4 products are allowed to be called levothyroxin. Levothyroxin is the name of natural T4 that comes for pig thyroid.  This makes it really confusing for patients. So unless you specifically are getting a NDT. it is always a synthetic.

Obvious to me, having taken both, that they are NOT equivalent, nor are the synthetics effective! The reasons doctors like the synthetic is that 1) there was a "shortage" of NDT a while back and it was on and off the market, and 2) the doctors go by the info the drug vendors give them and they trust the drug companies because they work with them.

Clearly, the drug companies can read the pages and posts of thousands of people suffuring from this drug, just as we can.  I've been back on the NDT now for six months and am still tryingto recover from the dammage caused by the synthetic levo.

 

Hi Catherine, I agree with you, NDT and synthetic thyroxine (which I'm going to refer to as levothyroxine) are not the same. I have recently had a problem with a brand of levothyroxine causing me hives. I didn't have as much of a problem with another brand. The one I had a big problem with contained acacia powder. They both contain lactose and maize starch, which is why i still react a bit (I have milk and histamine intolerances). It is because of this and because I was still having many hypo symptoms (despite being at the upper end of the normal range) that I have switched to NDT. I'm going to start the NDT as soon as the results are back of the Synacthen test I had last wednesday. To get it in the UK I had to go privately. Have you ever had a test for addisons disease? Apparently addisons and hypothyroid often go together. It may be the reason you are still having problems. Best site I've found for info on addisons is betterhealth. Vic. Gov. Au

Hi Barbara- Yes, The acaci ais used as a preservative in one of the major name brand synthetics. This is about the worst thing anyone with thyroid disease can take, since thyroid disese by definition is auto-immune. The acacia triggers the already irritated immune system. Do the math on that. It is common knowledge that if you want to trigger the immine system, you add an irritatant to trigger it. This causes the immune system to make anti-bodies to something that it normally wouldn't. Thie irritant, in this case, acacia, triggers the immune system, at the same time as exposing it to the levo- recipe for worsening the auto-immune response that already exists. I couldn't get out of bed when I was on the Synthroid, my whole body swelled up, migraines so bad I feared I may have been having seizures. My brain has not been the same since.

This stuff is the perfect drug because it makes the bloodwork look as if its working, while actually worsening the condition. Big money maker! Let me know how you do with the NDT.

Hi catherine, Thanks for the info. No wonder I reacted. It may even have been the final straw for all my allergies and intolerances. Have you ever been tested for addisons disease? If not, or if it's a while ago, it may be worth getting tested as that may be why you are still feeling rough.

Hi Barbara, No, I haven't been tested for addison's. I find that 90% of the food sensitivities go away when I get the thyroid stuff right. I still am completely ghluten-free because the gluten also triggers an auto-immune against the thyroid and other organs. I recently had another bout, where my thyroid levels dropped, likely to the cyst shrinking, but when it dropped, it put a strain on my adrenals, so I ha ve adrenal overload now, even though I've increased the dose. Pus it take a while for the higher dose to kick in. Will get some herbs to support the adrenals until they're back on track again. I'll check out addisons. Thanks!

Hi pamela...so glad to hear you were able to stop this terrible med. My 31 yr old daughter has been on Levo for 7 or 8 years and seemed to do ok at lower level  first 50 mcg then 75 mcg. Feb 2015 her TSH became slightly elevated ( i think due to terrible stress she was under at work ) Her GP raised her meds first to 100mcg then within a month to 112 mcg. Immediately she started gaining weight at rapid pace...30 lbs in 4 months!! Her face became so round and added double chins. Her GP just said  "try to diet" GRRRR. She asked for dessicated thyroid and was told NO..she cant find Dr. here to prescribe it. Now to last week...she has stopped taking the Levo. She knows it takes a bit to get it out of the system...My question to you...did you wean youself off or go Cold Turkey? Have any of the bad effects returned for you?

Thanks 

https://patient.info/forums/discuss/levothyroxine-recommended-dose-479129?page=0#1749353

Jjf, there may be some info in this discussion that's of use. I came off levo but felt foul so had to go back on it.

I can tell you guys very clearly the side effects if I stop taking it.  Death.  It is the only thing keeping me alive.  some of us have totally inactive thyroids.  It may as well be surgially removed.  I habe been on it since 1990.

Hi Robert, I also have very low producing thyroid. The levo seemed to add to the problems and never seemed to work for me, so I just kept getting sicker. I can admit it probably worked a little, but really, while on the levo, I went from a stable size 4 to a size 12 in a very short period of time.m

Just to be clear, do you feel healthy on this medication? No side effects?

Hi Catherine, I need your help & advice asap. I am a 49 yr old female, from Chicago. I just had my thyroid removed (3) weeks ago due to (4) huge goiters. I was diagnosed with hyperthyroidism approximately (12) years ago in 2004 while residing in Las Vegas. My thyroid was extremely overactive and I had to have it removed. I took methimazo 15mg meds for years. It lowered my levels but the goiters continued to grow. It took me approximately (4) years to come to the decision to have it removed. I'm currently taking Levo 88mcg and I feel awful. Im fatigue, rapid hair loss, awful sweats day & night, lose my balance, very spacey, sudden brain fog, itching skin, knee, joint & bone pains, etc, etc. Doctors assured me that I wouldn't have any problems and that I'll be fine. Wow, how they lied! Can you please give me some good advice regarding; meds, exercise and a healthy diet? I'm a stable size 4, weighing 125lbs I never weighed over 135lbs in my life. Will I gain weight rapidly? Should I try the (natural) NDT? Should I take calcium to,prevent bone loss? Should I take vitamins period? How long will my hair shed? Please help!

Ceola

Do you feel better afer stopping the med?. I take 125 mcg and feel miserable. As a side effect, I have night sweats, insomnia,depression and loss of appetite. I am getting no relief. I even tried an antidepressant. It made me feel worst. I know all these symptoms are beause I am hypothyroid. My thyroid was removed.