Unacceptable side effects of Levothyroxine
Posted , 191 users are following.
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?
41 likes, 1182 replies
kris_55939 Guest
Posted
Kdsres Guest
Posted
Yes, you are right. I went to my Dr. and asked her to put me on the thyroid extract, and she gave me a bunch of excuses, like it is too hard to regulate, and it's hard to find, etc. It is time to switch doctors! Most of the time I have to tell her what is wrong with me, instead of her knowing from symptoms, and that is just not acceptable. She has grown lazy and too comfortable with the uneducated "local people", who just accept whatever she says as being correct. It is sad, but I need a doctor who actually listens, not one who sits at her computer typing the entire time I am there. And one who cares if her patient gets well! Thanks for your support!
Kdsres Guest
Posted
My doctor did not want me to go on the Armour thyroid extract either. Someone on this site said to get my doctor to prescribe Cytomel, and after much fuss, she finally did, but said I would eventually have to stop taking the Levothyroxine if I am taking Cytomel. Don't know why. Going to research. Picking up my first Rx of Cytomel tomorrow. Will let everyone know how that goes in the next few weeks.
barbara98940 Kdsres
Posted
If you are getting T3 as well you will need to stop some of your T4. This is because you will end up on too high a dose. Think of it this way...you want to sweeten your tea. Think of T4 as sugar and T3 as maple syrup. If you need a sweetness level of 2 tespoons of sugar in your tea...you can use 2 teaspoons of sugar, or you can use a combination of sugar and maple syrup. But if you use both sugar and maple syrup you will need to use less sugar else your tea will be too sweet. Because T4 converts to T3 you will end up with too much T3 unless you take away some of the T4. Hope this example hasn't utterly confused you!
barbara98940 Kdsres
Posted
penelope09058 Guest
Posted
This is very interesting because insurance plays a roll in your meds. For over thirty years. My meds. kept getting changed. I have had several thyroid storms, they called them . But you don't hear about the pain in your mussels . How much your joints hurts, and once you find the drug that works don't which. So finding this place is great support , and give you all food for thought, you get so foggy you don't always know what to say.. lie and behold you get confirmation in here, by golly it's not all in your head. I asked to which meds. Back armour thyroid , I was flying high my joint stop hurting my mussels seem to work better than ever , so pleased , my depression was better, I came off my meds. Well I was just finding this place and left bad that the meds were working for everyone in here. Just my luck Barbara said take it slow with armour so I did do just that, when I went back for blood work I was to low. So at this point I was taking 30 mg of armour am and not taking it in the pm because I was feeling so great . Dr said that need more so I took the second pill in pm , slow the sun shine has deminished my joint s are active things hurt . But I'm not discouged yet because I'm getting lots of info in here that is helping me. I wish you all the best in getting this right
MtViewCatherine penelope09058
Posted
cathy35794 penelope09058
Posted
If Quest Labs is doing your labs that could be the problem. The body don't lie. The whole myth silent killer isn't so silent all you have to do is read these threads and you can hear the pain loud and clear. Sadly only people who have had like experiences with the healthcare industry can appreciate what you are talking about. Healthcare is more available in the USA , but in no way as quality as purported
suzanne_83546 Guest
Posted
cathy35794 Guest
Posted
Yes, Yes, Yes, but I wasn't sure at first because after being on it for a year it gave me low grade high BP and those drugs can do it as well - one of them any way. I had no sx of thyroid problems and felt very well, but my routine annual labs was off and my Doc jumped at the chance. The side effects started happening I simply rationalized. It is my style "Pollyanna" positive. I thought it was post nasal drip it was the most profuse I ever had, but here again I rationalized we we living at the farm and perhaps my body was simply changing, but I actually had drainage that would rival cystic fibrosis. I have worked in an ICU, so I know what I speak of. Some times I would start eating and it was like to food would hit a huge mucous plug and I would have up chuck my food. I had a chronic sore throat with out explanation. It changed after coming off the drug. I read about a lot of these side effects not on drug info sites, but on class action sites and another site consumerreports.org. I read about myself in other peoples struggles. I don't recommend people coming off their medication "willy nilly", but in my case as far as thyroid I didn't have any problems until I was on the drug and as far as BP mine was very healthy low until I took the thyroid med. Even the Mayo Clinic site confirms BP can be elevated from the thyroid drug. It fit the profile in my case. I do take supplements that mimic or correct causes of high BP and I do monitor What you have to remember is all drugs have side effects that don't always go away when you stop them. Some actually have "rebound effects which make problems much worse. Some temporary, some permanent. There is a Catherine on this thread who knows her stuff and is very helpful! Think, Read and listen don't just go on one person's thoughts. Be the captain of your own ship! Good luck
MtViewCatherine cathy35794
Posted
Mrspeach Guest
Posted
Hi Barbara and Catherine and everyone, just to give you an update since the endo pursuaded me to go back on Levothyroxine (this time teva) I've been on it since feb. You may recall before I had awful neck and muscle stiffness while on regular Levo that caused headaches. When I came off Levo I felt amazing all my muscle and headache problems dissapeared very quickly. But unfortunately my underactuve thyroid problems like energy slumps and constipation weight gain came back.... so back on teva. Well I've been awful these last few months headaches 3-4 times a week and muscle stiffness in neck and back and weak arms etc. The prospect of finding a job (been off due to redundancy 12 months) is worrying as I start a new job in a weeks time. I've just had a CT scan and waiting for the results and being referred to rheumatoid clinic for problems with my nail beds. Weekly reflexology and osteopath help a little. I'm really ready for coming off Levo again to see if my muscles and headaches get better again. Then that would be clear evidence to me that it's Levo that's causing me all these issues. I'm going to discuss with my endo at NHS I will even pay for NDT if they won't prescribe it. I feel about 80 and I'm only 44 and used to be really active. Hope your all doing ok xxx
Mrspeach
Posted
Sorry I came off Levo in Feb to may and got lots better, went back on it in may and gone down hill since then. To me it feels like levothyroxine side effects makes muscles stiff and tight and targets individuals weak spots, for some it's hips for me it's upper neck that then has a knock on effect to create other issues and the fact that it makes you less mobile/active doesn't help thyroid as you should stay as active as possible and eat clean diet etc, the heavier you are the more levothyroxine you need.... so if you get these nasty side effects it's a downward spiral. I wish more tests were done on this drug.
MtViewCatherine Mrspeach
Posted
Hi Peach, I like to tell people my experience because it isn't you. I was at my wit's end with the thyroid disease. I'd been on NDT and had switched docs and was absolutely desperate. The doc convinced me to try the Levo. I did, even though, with my training, I KNIW WITHOUT A DOUBT THAT THESE SYNTHETIC HORMONES ARE A RECIPE FOR HEALTH DISASTER. From a biochemical perspective. They are very dangerous. From the start on the Levo, I was so sick that I couldn't imagine how this medication was ever approved for use. I had migraines so severe, I feared I'd have a stroke. When I called the doc, I got the "that's normal. Wait and see" response repeatedly. Well, two years later, after trying every dose possible, it still didn't work and the side effects had magnified. I had multiple fractures in my foot and was bedridden, couldn't think straight. Hair stringy, dry, falling out and turning white and wiry, went from a size 4 to a 12 (size xs to xl), massive water retention, body temp still low, near continual migraines, unimaginable anxiety.
I got some relief when I went off the levothyroxin and on to an OTC bovine glandular. The company eventually changed their manufacturing and I was having a gluten reaction to the stuff OTC. However, while on the OTC, I got to the point where I could think straight enough to try and evaluate my situation. I could tell I detoxed for months after going off the Levo. I could smell the Levo coming out in my urine.
Fast forward a year on the bovine glandular (having a gluten reaction, etc) I was prompted to look at the thyroid feedback loop. I feel that the thyroxin medications influence the feedback loop and destabilized my system, shutting down my thyroid more than the T4 that was provided. In other words, the Levo onfluenced my own thyroid feedback loop so much, that every time the dose changed, it would sway the feedback loop such that it over responded or went haywire or SOMETHING. Making it impossible to stabilize the dose. I was never able to get the dose stable on any of the meds (even the NDT, and I'd tried 8 in all). I came to the conclusion that there's no way these meds can work because they're introduced at the wrong point in the thyroid feedback loop and cause thyroid loop instability.
Instead of fixing the problem, all the Levo does is lower TSH levels and shut your own system down. Duh, that's why they only look at TSH. That's all this medication does is lower TSH . I feel it has little of any true bioactivity as a replacement for low thyroid. It's basically a placebo with really bad side effects.
When I researched, I was SHOCKED to see that the constituent molecules of thyroxin are amino acids, and that amino acids are responsible for driving the reactions that produce thyroxin. After extensive thought, I came up with an amino therapy plan and substituted amino acids for the bovine glandular that was (now) making me sick (due to cross contamination of manufacturing changes). My molecular background screamed, 'ITS SO SIMPLE AND OBVIOUS! IT WILL WORK!!!!' I can't for the life of me understand why amino acid therapy is not the go-to for hypothyroidism. It is an obvious treatment for thyroid disease from a biochemical perspective. It's cheap and actually repairs the problem.
I expected massive migraines as I'd experienced previously when changing meds (seriously, when I changed brands of Levo, I was down with migraines for days and couldn't get out of bed, or even think enough to watch tv.)
Instead of a meltdown, I experienced some mild headaches and gut improvement, as well as other health improvements when I switched to the amino acids. I did have some water retention, indicative of kidney problems. I tapered off slowly, and now only take as needed. I can't waste my time with continual visits to the doc. I can feel that I'm still hypothyroid. But my hair is growing back and the white is going away, I'm no longer bedridden, I have a lot more good days, by far than when I was on the Levo.
I don't miss being held captive to dr appointments, blood tests and medication schedules. I AM FREE OF THAT HELL.
I'm not perfect, and am still recovering from the damage caused by the Levo. Most concerning are the bone loss and liver toxicity and lesions, as well as parasites that there's no other way I could have gotten.
I know I still gave bouts of hypo times. I feel these are likely due to environmental toxins. I have symptoms of fibromialgya and arthritis, chemical sensitivity, chronic fatigue, gut problems, heart problems, exhaustion, adrenal burnout. I feel these were caused in large part by the Levo, which I feel accelerates thyroid and autoimmune diseases.
In good conscience, I could NEVER recommend anyone take this drug, ever. The long term effects of it will kill you, period.
MtViewCatherine Mrspeach
Posted
Hi Peach, sent you some PMs to make sure you see my post. I'm having some technical difficulties, so sorry for the funk.
On another note, there are over 1100 responses to this post, as it is one of the most commented in all the thyroid posts. People are having problems with this drug. It isn't you. If you're having these horrible side effects, get off the stuff before you have irrepairable damage to your health.
Read through the different manufacturers sites for lists of side effects and you will see that what you're experiencing is expected with this medication. The "cure" in this case, is worse than the disease.
barbara98940 MtViewCatherine
Posted
Hi MtViewCatherine
I too have researched and found that Amino Acids are very important for the operation of the thyroid, however they rely on one having a thyroid that still works to some extent (as I gather from what you've said previously, yours does), thus I would like to add a word of caution...if people are like me and their thyroid has already been completely killed off by their immune system (or have had it surgically removed) then Amino Acids on their own are NOT sufficient - there needs to be some form of thyroid hormone replacement.
As many people on this forum know, I have switched to a Natural Desiccated Thyroid (NDT) and I had to try 3 before I found one that didn't make me swell up.
?I have though, just bought some Tyrosine Amino Acid (thanks Catherine for the hint) and am about to start it to SUPPLEMENT my thyroid hormone. I am not taking it instead of thyroid hormone and it would be dangerous for me to do so.
?Another thing I found helpful is that when changing dose, one can avoid the swings if one changes it by a little every 2-3 days (e.g. for thyroxine: 1/4 of a 25mcg tablet (6.25 mcg) - it's ok to chop them up; for ThryoGold: 18.75mg at a time).
?I'm glad you've found something that is working for you.
All the best.
cathy35794 Mrspeach
Posted
Hi Mrs Peach, I have read this thread and I do agree with Barbara that the advice one takes makes a difference if you have some thyroid function or if yours has been destroyed surgically or by some treatment. Everything Catherine says though is on the money! Trust me I have been there. I was dx by a doctor who relied purely on "TSH" which personally I think is crap now and I question the integrity of the labs that operate in the United States, again my opinion. I felt VERY WELL prior to being put on this crap and went through a lot of what Catherine did after taking it . Doctor told me "You'll be better Your body needs to adjust" I trusted the Doc. I wish I had trusted me, but I rationalized and made excuses which fit into the "healthcare profile" give you another disorder to treat you . By my next PE I had low grade high BP when I'd always had disgustingly healthy BP. Then I was put on 2 other medications and my SE just kept going and it was like my body was at war with it's self. Late this Summer a light bulb went off for me and although not nearly as well trained as Catherine I also did research, but I started with the BP meds and once I saw how dangerous they were I uncovered on the Mayo site that Levo can cause blood pressure to elevate. It would be a really sad couple of weeks to have multiple wake up calls that it was the pills I was dutifully taking that had made me so ill for now 3 3/4 years and lead to my hospitalization and once again to be mis- dx where I was exposed to 2 CAT SCANs. What I was learning I wasn't sure whether I was relieved, angry and betrayed. It has taken prayer to work my way through this and I am now approaching 3 months all of them. I did it with prayer, supplements that reading and studying made me aware , so my situation is different. All our situations are unique, but the biggest difference is does your thyroid function at all or has it been destroyed. Personally I would not recommend the TSH as any type of measure of any thing. Catherine is a good resource and she knows her stuff. A lot of my SE have lessened, so gone away, but I don't know for sure what honest to God damage these chemicals may have done. I will monitor myself, but quite honestly I don't think I can ever see myself taking Levo again. There are people who love the stuff and make excuses, but I fully agree with Catherine. Be well and Happy Thanksgiving!
cathy35794 MtViewCatherine
Posted