Sorry to be the one to say it out loud but this medication is BS and is making people sick not better. Sure some symptoms disappear but its not a cure. shouldn't we be asking why are we all having thyroid problems and not just giving it a band aid. And yes that is exactly what it is a band aid. Please dont respond to this message if your from a pharmaceutical company or some quack dortor because i am tired of being lied to and guess what we aren't stupid. I'm just surprised someone hasn't started a lawsuit.
So let me start from the beginning. I started having thyroid issues after i had my children. it took almost a year before i was diagnosed when i i did my own research and asked my doctor to check my levels. my T4 was 52.
I was started on a low dose of Synthroid and wasn't feeling great for over a month and taking it as directed. I experienced sevear mood swings anger and body pain. I would get out of bed and my feet hurt i felt like i had sand bags on my hips dragging me down. I was on Synthroid and Levothyroxine for years
i never felt great. I developed major back problems health problems. I played sports all my life was always healthy not thin but i ate well for the most part. loved vegetables and occasionally fried chicken. i never ate meat daily. I had been to several doctors read many books. I ended up seeing a pain management doctor who believed more in holistically to a point. He put me on Armour. now im not saying to get yourselves on this medication but at the time it made more sence. Its Natural its made from pigs thyroid grounded up into a pill. im sure theres more to it im not mentioning but I started to feel better. not perfect but better. Alot of the pains went away but i also had to watch what i was eating some foods affected the way I was feeling. And yet this is still another band aid. i did try taking thyroid Supplements i got from whole foods and a liquid mineral that i put in my water. i felt the best when i did that but lacked the energy. I also changed my salt to sea salt and just used that.
Obviously there is something that is causing all of us to have Thyroid issues. There has to be something we are missing in our diets or somethings is causing us to stay sick.
Someone has the cure out there I know it. I am so sick of being lied to and so should you. The pharmaceutical companys are a expensive lie and the FDA is a Joke. Lets us take control back and fix this problem. Please help me to help other people with your thoughts and or questions. Please just keep the conversation to the Thyroid issues. thank you for listening.
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joannessmile
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I am not a medical person, just someone who was diagnosed hypothyroid at 6 months old but was suffering from birth.
I can only defend my belief in Levothyroxine from my own experiences.
I am truly sorry you are suffering so much but I have to say that at 57 years of age now Levothyroxine has been my saviour. Synthroid is a trade name for Levothyroxine, I believe from the US, and not a separate medication.
My only suffering has been caused by the mismanagement of dosage by some in the medical profession but at my optimal dose I am a happy, healthy individual.
There is no cure for an under functioning gland, just management. I don’t have autoimmune issues as many sadly do, so I can’t comment further on that.
I hope you find some relief soon. There are many on this site that will be able to help you I’m sure.
I totally understand what you have been through, I was diagnosed at about the age of six over sixty odd years ago. My mum said she thought I was born with it but it was never discovered. Glad to hear from someone else who ha been through it for so many years.
Thanks for reply, my mum was just told she was a fussing mother and nothing wrong with me. But she was sure something not right. Luckily she persisted. They just said my tonsils and adenoids needed to come out. Had them out at the age of three.
It is believed that my issues come from the paternal family as women on my father’s side developed Thyroid issues in their 40’s. I am the only one who was diagnosed so young.
I’m learning that some in the medical profession lie about much, and know so little!
You need to remember that for the majority on levothyroxine it works well. It is believed between 10 and 20% continue to have symptoms. I confess to being one, but that doesn’t mean that it is possible to sue a drug company for levothyroxine not working. If you compare levothyroxine efficacy against antidepressants, where research supports only a 40% treatment success, Levothyroxine does well. I do however agree that pharmaceutical companies do not support research that investigates alternative drug therapies, and that medical training has lost the ability to diagnose on clinical symptoms. Your post suggests you might be from the states, I'm sorry life has been so tough. I wish you well for the future.
Im sorry but where are you getting your percentages from? Do you know it benefits the Pharms to be apart of those numbers. Did they ask you or any of your friends how you feel and how your meds work for you. i know I've never been contacted or any of my family members. Also, I said they should be sued for poisoning us.
I am NOT looking for sympathy, I am trying to raise awareness that this medication is NOT fixing your thyroid. I repeat its a band aid.
The pharma are in it for the money so i don't expect them to do something they don't have to. That's what the FDA is for right?
Well no not in the uk. This is a United Kingdom based forum although we have contributors from all over the world. For a start all NDT including armour is not licensed for use in the uk and sadly liothyronine has been removed from many local formularies. Health provision is very different here to the US. I also think expecting the establishment to look out for individuals is very naive and not supported by the current political establishment across the pond.
I am not from a pharmaceutical company or some quack doctor. I am a hypothyroid patient diagnosed 43+ years ago after repeatedly going to the doctors with symptoms for 2 years which came on a few months after the birth of my second child.
I was on Levo successfully for about 20 years (as ZippyAppletush is now, and there are other members here who do well on Levo), and now take Levo plus T3 after trying NDT which at the time didn't do anything for me.
I think we need to be quite clear here.
If your thyroid is failing, you can't "cure" it. You just have to replace the hormones that your thyroid can no longer produce. A bit like a diabetic needing insulin.
We are all individual, our bodies deal with things in different ways, and some of us need our hormone replacement to be different from the next person's.
You may not be doing well on Levothyroxine. That is individual to you. It doesn't mean that everybody wont do well on it, your post is scaremongering to any patients who are new to hypothyroidism and treating it.
Many hypo patients do well on Levo. The majority wont be on a thyroid forum because they have no need to be, they're getting on with their lives.
Some patients who aren't doing well on Levo aren't on the right dose and need an increase.
Some patients who aren't doing well on Levo have absorption problems which need sorting before the Levo can work properly, eg nutrient deficiencies, gut problems.
Some patients don't do well on Levo and do better on natural desiccated thyroid (NDT). Of course, it's not completely natural. Yes, it's made from pigs' thyroid but it also has to have synthetic excipients or it couldn't be made into a tablet, so it's not totally "natural".
I'm not a medical person, nor connected to pharmacuticals in any way. But, I think you're missing the point.
One think you learn when reading on here is that everyone is different, and what suits one person doesn't suit another. There are people that do well on levo - there are people on this forum that do will on levo. Just because it doesn't suit you, doesn't mean that it is 'BS' as you put it. No, it's no a cure, no-one has ever pretended that it is. It's thyroid hormone replacement, replacing the hormone that your thyroid can no-longer make enough of to keep you well. There is no cure. The thyroid cannot regenerate. And finding out why it went wrong is next to impossible. How on earth would you do that? There are so many possibilities - some we don't even know about.
There are reasons why people don't do well on levo: not taking enough, sensitivity to the fillers in the pill, inability to convert it to T3 (the active hormone), nutritional deficiencies, and probably a few more besides. But that doesn't make it a bad thing.
But Armour isn't the panacea to all ills, either! It doesn't suit me. It made me even sicker than levo did. I lost my hair, put on weight, and ended up a sick, bed-bound whale! My saviour was synthetic T3. I can only function on T3 only. And, I have no idea why that is. It doesn't matter, the point is that I've found a way to function.
I'm not saying that doctors don't lie. They do! But, one of the reasons for their lying is ignorance. They just don't know enough about thyroid, and cover up their ignorance by lying. If you're a conspiracy theorist (which I am!), you could come up with a lot of possible reasons for their lying, but I believe that for the most part, it's sheer ignorance.
I think you're wasting a lot of energy - if you don't mind me saying so - getting worked up about something that none of us can change. It would be far better to direct that energy into remonstrating about doctor ignorance, or the lack of choice of treatments, or the shortage of T3, rather than demanding that someone produce a cure, and insisting that someone has one but won't give it to you. Because I just don't believe that that is true. Or even possible.
Anyone who says that they feel fine and doing great by putting a chemical a foreign substance in there body is full of it. Sheep. I guess you think chemo treatment is good for cancer victims too.
Levo is not a foreign substance. It is synthetic, true, but an exact copy of natural thyroid hormone. All hormones are chemical substances, whether they are made in a lab or in your body.
Don't you trust anyone? Not even the patients themselves? How sad. I tend to take patients at their word. If you say levo doesn't suit you, I believe you, so why shouldn't I believe someone that says that on levo they feel well.
And, there's no need to be rude, just because I don't agree with everything you say. Chemo treatment is not entirely good for cancer patients, how could it be? But, if it keeps them alive for a bit longer, that has to be a good thing, doesn't it? I have a cousin going through it at the moment, and the prognosis is good. I'm not sure I would want to do it, but it was her choice, and that's what she chose. We should all be free to make choices whether it's for cancer treatment, thyroid treatment, or what to have for dinner tonight. And it would be nice if others respected those choices.
A chemical foreign substance? Surely you are aware that levothyroxine is a replacement hormone? This is not a band aid, it's a replacement hormone.
In the UK, there is no money to be made out of levothyroxine by big pharma because the price is so very low. Sure, in the US, big brands like Synthroid might be making fat profits for the manufcturere, but that's not the case in most of Europe. In fact, there's much, much more profit to be made from NDTs like Armour, which is a comparitvely horrendous price in the UK!
Comparing levothyroxine (a replacement hormone) to chemo for cancer is comparing apples and oranges. Some people are born without a thyroid and without synthetically produced replacemnt hormone (i.e levothyroxine) they would die. Some people get thyroid cancer and have to have their thyroid removed. Without synthetically produced replacement hormone (i.e. levothyroxine), they would die.
True, some people are better if they add liothhyrone (i.e. take T4 and T3), but both of these are replacemnt hormones, not band aids.
When it comes to thyroid issues, the band aids are the drugs prescribed for the plethora of symptoms caused by lack of thyroid hormone, not the hormones themselves.
There are many reasons for the thyroid to stop functioning. Today, toxins etc may have a lot to do with it, but underactive thyroid still happened 100s of years ago and was a killer until thyroid hormones were discovered. Most people do OK on T4 only, but many need a combination of T4 and T3 to feel well. But by the time we are diagnosed, the damage has usually been done and can't be fixed except by replacing the hormones our thyroids can no longer make. Better levo than dementia and death.
For the first 30 yrs of my taking Levothyroxine I was well-medicated and well, on Levothyroxine. I have friends and know others, both younger and older, who are likewise well, and look it, and therefore do not populate groups such as this so their voice isn't heard. Things changed for me at the menopause, and as I aged, and I became unwell for other reasons, but that doesn't imply that Levothyroxine is/was at fault. Levothyroxine is not a cure but a treatment, and I've never heard it said otherwise. A quick look at the Patient Information Leaflet reinforces this: "Levothyroxine is used to replace thyroxine in people whose thyroid gland does not work properly. You will usually need to take this medicine for the rest of your life." The PIL also gives information about possible contra-indications and advises that many medicines affect the way levothyroxine works, and that the effects of other drugs may also be affected by levothyroxine. Perhaps that is why no one has started a lawsuit. More recently I have had a genetic test carried out that we refer to here in the UK, as the DIO2 test, which showed I test positive for a particular polymorphism, the consequences of which may predispose me towards poor T4 to T3 conversion, obesity and diabetes; and that may partly explain why I responded so well to the addition of T3 to my T4 when I started to become unwell 10 yrs ago, and why, when my T3 was withdrawn last year, I began to go downhill again. But that isn't the fault of Levothyroxine which was developed to address hormone insufficiency at a time when such readily available genetic testing was unheard of; and in any case poor conversion isn't a problem for everyone. For a period, out of interest, I took NDT's - NatureThroid and then ThyroidS in my case, but was neither worse nor better than with my T4/T3 combo, to which I subsequently returned as I didn't have to pay for those drugs; but not everyone does well on NDTs. Yes the active ingredient of thyroid gland is natural in that it comes from a pig or cow, but natural doesn't necessarily equate with good or safe, and can a pig's gland be truly said to be natural for a human, in so far as the ratio of T4:T3 differs between the species. It's absolutely true that the treatment of thyroid disease is not universally as good as it could/should be; nor is everyone offered choice in the drug options made available to them. That certainly needs to be addressed and in the UK there is a considerable movement of patient groups and thyroid organisations making progress in having those disadvantages hopefully resolved. Additionally a new combination drug is also currently under-development. So practical steps are being taken. Now in my fifth decade of being hypothyroid, do I think we have a particular problem in the UK regarding the disproportionate cost of T3 and NDTs compared with elsewhere? Most definitely. Do I think clinician's thyroid training needs a major overhaul? Absolutely. Do I believe that either the pharmaceutical or medical profession is the devil incarnate? Of course not.
If someone has the cure, they are keeping it very close to their chest. And I really do not see how we can first identify the people, and then get those who have the cure to tell us what it is. Have you any suggestions as to what we can do to achieve those?
(I take levothyroxine only. Maybe that will have to change at some point but, should I wish, both liothyronine and desiccated thyroid are at hand. So far I have not wished.)
unfortunately their is no money in cures. It really makes me think there is a cure but he or she might have been kept quiet. Who wants to fight billion dollar companys.
Comes across rather as wishful thinking - I might wake up in the middle of the night and so desperately want there to be a "cure", that I could almost make myself believe there really is one. As the cold light of dawn arrives, it is so very obvious that it was pure fantasy - a dream.
No-one has to fight billion dollar companies. They just have to publish it on a few web sites and it will be almost impossible to remove.
Sorry to be the one to say it out loud but this medication is BS
No, actually. Although you're not the first to say as much, out loud. Around 80% of people do well on levo. It is the group which you appear to fall into, the other 20% who appear to suffer as a result of many clueless medics asserting that levo/synthroid is a magic bullet for all those with hypo problems. There are many studies showing this ratio but I'm too tired to look for them now.
Use what energy you have to come up with a solution which works for you and take the wisdom of this forum: nothing works for us all. Nothing. There are conspiracies in the treatment of hypothyroidism that I can subscribe to but that someone has a cure is not one of them.
Errr...there are 20 million people just in the US who have thyroid issues...are you suggesting that if they're OK on levo, they're getting backhanders? All of them ? Pfft
One of the Advisers to Thyroiduk.org.uk before his death, would never prescribe levothyroxine as he said that it, as well as blood tests, were introduced by big pharma as they could see an opening of making lots of money. The Adviser said it was all based on corruption, i.e. doctors paid to prescribe levo and also with False Statements made by organisations gradually got NDT removed followed by T3. Also it is difficult to get T3/T4 combination these days.
Before that we were all diagnosed upon our clinical symptoms alone and given a trial of NDT - no blood tests. Through BTA etc making False Statements about NDT and insisting that people aren't diagnosed until the TSH reaches 10 (by that time most would be quite symptomatic).
NDT, the original thyroid hormone in use since 1892 and people given it did not die an awful death and had a good life.
The Adviser requested every year for three years for a response to his Rebuttal before his accidental deth but they never did respond.
We the patients who don't recover on levothyroxine know full well what eases their symptoms and are denied. It is also seems that most Endocrinologists are male when it is mainly female who develop problems with their thyroid glands so they don't have to cope with all of the unpleasant symptoms.
It would seem there are genetic links, yes, but odd that some then lie dormant until later in life and others manifest at birth. Lots to find out still and I’ve only just scratched the surface in my own case.
Paranoia - which you’re demonstrating quite nicely for us here, Joanne - is a symptom of undertreated hypothyroidism. You sound undermedicated to me. How much thyroid hormone replacement are you taking at the moment? Do you have any recent thyroid blood test results to share?
Because I think you hurt my feelings? Strange thing to say. Either you my feeling are hurt or they aren't, it's not a question of thinking. But, frankly, you didn't hurt my feelings. I thought you were unnecessarily rude, but then I don't think you're thinking straight, at the moment, so I didn't take it personally.
I do know I am lucky to be well on Levo because my husband was not well on it, he now takes Levo + Lio but just because some people don't do well on Levo does not mean it's an evil substance. There have been medications that I can't tolerate but I'm not banging on about it, just accept that we are all different and what suits one may not suit another.
Thanks joannessmile for your speaking up about the issue of questioning the effectiveness of our 'thyroid meds' ...
One thing i wanted to mention (i have not read the other posts yet) ... is that i believe there is the Autoimmune disease part of the low thyroid diagnosis ... this, i think, is not taken seriously by the medical establishment, probably for lots of reasons. I think once there is more research into how all the hormones work together and are interconnected w/ our nutritional requirements (ie. diet) I think there will be forward motion on thyroid issues and how to treat the low thyroid more effectively.
Also, the thyroid gland is one of the first 'glands' to be affected by pollution - air, water, food. I think this is why there has been such a rapid increase in thyroid problems (ie. thyroid cancer, etc) for people of all ages, sad to say ...
Soo much more i could say about these issues ... glad you spoke up J so others can respond to as well. r-e
This kind of reminds me of MTGA: "Make Thyroid Great Again". The answer lies in finding a good doctor who will run the right tests, knows how to interpret your lab results, who knows which thyroid med(s) you need and who will prescribe the correct dosage.
1) There is no "cure" for thyroid disease. Once your thyroid is not able to make enough thyroid hormones on it's own, you must supplement with thyroid hormones.
2) Treatment is replacement thyroid hormones T4 and/or T3.
3) Instead of being angry at the medication, you should be angry at your doctor for not running the right tests or prescribing the right dosage of medication for you. But really, being angry is not a good idea.
4) Which T4 test?? No idea what "T4" 52 means when the T4 test is not identified and the lab range is omitted. The correct THREE tests that need to ran together are: Free T4 (FT4), Free T3 (FT3), and TSH. These are always ran together. If your doctor did not run these tests for you, then he did you a big disservice.
4) Causes of thyroid disease: The main cause is autoimmune thyroid disease or Hashimoto's. Did you have your thyroid antibodies tested? These are called TPO/ab and TG/ab. Both need to be tested, not just one.
5) Sounds like you were under medicated if you were on a "starter dose" for months. Starting dose is 50 mcg for 6 weeks. At the 6 week point, the three above thyroid tests are ran again, results are analyzed, and medication is increased at this time. 6 weeks later, repeat. Continue to repeat tests every 6 weeks and adjust medication until you have little or no symptoms. IF your doctor did not follow this protocol, you should be angry at him, not at the medication.
6) Synthyroid is levothyroxine.
7) If you started to feel better on NDT, that is likely because you needed T3 in addition to T4. You should be angry at your doctor for not running the right tests and prescribing the right medication, not angry at levothyroxine.
8) Thyroid disease is not caused by something missing in our diets. Once upon a time people did not consume enough iodine in their diets, but that was eliminated by the invention of iodized salt. As previously mentioned, Hashimoto's is the leading cause of thyroid disease. Autoimmune diseases such as autoimmune thyroid disease Hashimoto's are caused by EBV, CMV, other viruses, bacterial infections, fungal infections, over exposure to chemicals, injuries, any combination of these events which all cause the immune system to react, or anything else that causes the immune system to over react and malfunction.
9) "Lets us take control back and fix this problem.". Like MTGA, Make Thyroid Great Again? Sorry, but you can't. Once your thyroid is diseased, you will need to take thyroid replacement hormones for life. The only exception is the very rare few individuals who have non-autoimmune thyroid disease that are able to kick start their thyroid into producing hormones again by taking thyroid medication. Such people are very far and few between.
10) I hope that you are able to find a doctor who will run the correct tests on you: FT4, FT3, TSH, and will also test your thyroid antibodies TPO/ab and TG/ab, and who will give you the right medication and right dosage. It sounds like you could have Hashimoto's and that you are under medicated. I hope get your diagnostics and medication sorted out so that you will have little or no symptoms soon.
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