Can't take no more.............

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Well I have been on levothyroxine for about 2 years now, and I am sick of it all I went from 50mcg now on 150mcg and their seems to be no end in sight. Every time my doctor increases dosage like a week later I feel ok then 2 weeks after that it back to feeling like a prisoner in my own body. My story started like 6 years ago I am 47 now. I started to feel tired , and I knew something had to be wrong long a behold thyroid not producing. I don't know how everybody feels or is every case different? For me it is horrible I can't really explain it but I will try. right now I will feel ok until around 4:00 pm then I just feel terrible I am at work and I feel like screaming. Because I just don't want to be here any more, no motivation or drive to do anything, tired, depressed its like I am in another body.I try to explain to my wife, and she says she understands, but there is no way she could. I just have one question does anybody have to keep getting increases in medication? Maybe I am just doomed to suffer. Sorry for the rant.

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  • Posted

    I have been on levothroxyn for almost 2 years & I understand what you're talking about. I started at 50mcg & 3 weeks ago I was put up to 125mcg. Around last June I was put on 100mcg & that's when major symptoms started to arise. Everyday I wake up with these dull consistent headaches, my body is extremely fatigued (I was a college athlete & suddenly can't run or do anything), my vision is constantly being disrupted & disturbed, I feel racey, etc. The list of symptoms that just randomly began a month after the dosage increase has been awful. Due to my blood results being okay up until recently my general practitioner refused to believe it was the medication. Finally after consulting with people on this thread & in general they have led me to believe that I may be allergic to levothroxyn itself. 3 days ago I went to a thyroid specialist & she had switched me to tirosant to see if this could be the case. Tirosant doesn't have any dyes or fillers in it so I'm praying that this the problem & I could go back to living my normal life without struggling. Hope this insight helps. I will let you know if switching the medication has helped me. Good luck.

     

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    • Posted

      Yes please do my doctor mentioned switching me to wp thyroid. I hope she does. She claims she never had a patient react to increases the way I do go figure.
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  • Posted

    John don't say you are sorry because you have a reason to rant and who better than to people who know exactly what you are going through. If I had to guess I would say your problem isn't thyroid and I am guessing the levothyroxine is making you even sicker. Lots of things can make you tired. Hear are a few information sites: Very Well Real Life with Thyroid Disease, Stop the Thyroid Madenss, Medical Medium. If you have been reading this thread you can see how people are hoping from lab test to lab test life will be better. There are a couple who swear by main stream diagnosis and treatment, but I suspect something is off with them, but this is an experience and opinion site, so you have to sort out what is believable and what is off the rails. If you are looking to validate  your experience is real go on class action sites that deal with cases of the thyroid medicines and you will see for yourself and these cases on these sites have been prosecuted and won and not with opinion but facts, provable facts. That is where I started when sites that explain medications left me cold. The Very Well site is very well laid out explaining thyroid disease and not alternative medicine. I wish you and your wife well truly. Your experience is indeed difficult . I know I have been there and still suffer lingering effects .

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    • Posted

      John, Cathy’s comments are correct. There are tons of class action lawsuits. 

      I have severe advanced thyroid disease and even I feel that levothyroxin should never be used to treat thyroid disease, as my experience is that it accelerated my thyroid disease, worsened the effects of thyroid disease and had horrible side effects.

      I think the biggest problems I had was that I didn’t realize how bad my thyroid disease was, and I expected treatment and diagnosis from doctors.  They didn’t properly diagnose. They did not explain that by my symptoms and size of the cyst that my thyroid disease was advanced and very serious. They did not prescribe medication appropriately or in a timely fashion. They did not offer any other solutions. They did not offer any information on how to stop the disease or what caused it. They did not offer any information on the progression of the disease, or what diets of symptoms to expect as the disease advances.

      It’s an extremely frustrating process of a broken system. Unfortunately with thyroid as with many other diseases, patients don’t have time or energy to gather information, they don’t feel well, have brainfog... the system takes advantage of that.

       

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    • Posted

      I hear you. I don't know what to do. Should I request a different doctor or request my medicine get changed? I just don't know FRUSTRATED to the max. Thanks for the reply.

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    • Posted

      Call the doctors office and request tgat your medication be changed to NDT. Armour, Naturethroud, WP. WP is supposed to be free of allergens, which is important.

      If your doc won’t Chas he without an appointment and doesn’t have an appointment soon, don’t waste your time. Just get a new doctor and ask for the WP. Take your old blood tests with you, of course.

      If you have the money and you’re comfortable managing your own dose, the best bet is ThyroGold. You can order it online and it works quite well. 

      If you still have your thyroid gland, you’ll want to get a plan in place to minimize medications and curb the progression of the disease. Cleansing, high protein gluten-free Paleo style diet, good quality supplements and food. B vitamin injections, essential amino acids...

      I’m off the meds and use essential amino acid complex and additional phenylalanine.

      Plus I take digestive enzyme capsules because I have subacute pancreatitis. 

      You basically have to troubleshoot your situation until you find a good combo. It took me a long time even with my science background. I could  have saved years by not bothering with the docs. The synthetic meds just worsened the whole thing and I went from a size 4 to a 16. I’ve been off the meds over a year and now that I’m treating the associated pancreatitis, I’m starting to feel quite a bit better and seem to be dropping weight like a bomb, as I probably had 40 pounds of water weight due to the pancreatitis.

      Yup! All this, over a dozen doctors, and not a single one suggested the Levo was making me sick or that pancreatitis could be an issue. I know what I’m doing is somewhat of a bandaid and I’ll continue to find better solutions. But at least for now I’m making progress in the right direction!

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  • Posted

    Hi John, when hypothyroid disease advanced, the body thinks it’s starving, so to preserve energy, the body starts shutting down “unnecessary” functions. The first to go is the hormones. So it isn’t surprising that you have the symptoms you do.

    Read through the side effects listed with your medication and check out the levothyroxin group here. My opinion of levothyroxin is simply that sh*t doesn’t work and causes more problems that I didn’t need. 

    There are many things you can do holistically to treat hypothyroid disease. There are tons of posts on this. 

    The way I dealt with it was to wean off the Levo using NDT, wean off the NDT with OTC bovine glandular, wean off the bovine glandular with essential amino acids. Treated all the peripheral health problems caused by the medication and hypothyroid disease. Also TCM through everything.

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    • Posted

      TCM-  Traditional Chinese Medicine. Usually the practice includes acupuncture and herbs, as well advanced other treatments.

      WP- this is another brand name of natural dessicated thyroid. It’s aupposed to be free of allergenic additives and is made by one of the companies that makes Naturethroid or one of the other commonly used ones. 

      To be honest, after the levothyroxin, none of these worked for me. The NDT worked ok for me before taking the levothyroxin. I don’t know if the NDTs don’t work now because of formulation changes  or because the Levo messed me up so much. The prescription meds change the formulations ALL the time. If you’re sensitive you notice this and they don’t work the same.

      I really wouldn’t ever go back to any of the prescription meds for thyroid disease under any circumstances.  But some people can’t afford the OTC ones (ThyroGold), that are dessicated bovine thyroid glandular supplements.

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  • Posted

    John, you are not alone.  There's a damn good reason why thyroid discussion groups are so popular.  Conventional medicine does not help a large number of thyroid patients and their continued symptoms destroy the quality of life.  No one can understand unless they've been through it themselves.  So yes, you're in the right place to discuss inferior thyroid treatment and miserable symptoms.  My heart goes out to you.

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  • Posted

    All my life I've heard that people with thyroid problems just 'take a little pill every day for the rest of their lives'.  What a crock of stew!  Adjusting dosages can take a minimum of a year and side effects can linger 4 to 9 months AFTER the thyroid has normalized/ stabilized!  

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    • Posted

      So did I  and what a fool I was played. Screwed me up including triggering low grade hypertension cause levothyroxine will do that not my opinion, but that of the Mayo Clinic information. Doctors don't tell you that.  If that weren't bad enough the drug can cause an allergic reaction who tells you that? The stuff is made in Mainland China in crap factories and sold to drug Distributors like Mylan in the U.S.A.. The same charming distributor that cranked up Epipen to about 10 times its original cost. Many of us don't   have anything wrong with your thyroid. Doctors busy selling the TSH test as good medicine but it is a piece of crap! What you need to know is if you need T4, or  T3 cause your body isn't converting the thyroid it is naturally making. Meanwhile their "magic pill" junks your thyroid. Doctors don't dx . They take junk lab tests and plug them into the" doctor's play book" and then write scripts. They get rich and we get sick. Initially I was angered and disillusioned. Now after 7 months I am determined to get the word out and encourage people who are suffering and pray for their healing. Society went wrong when we put doctors on pedestals. Few deserve the praise we have given them over the years. I am making slow improvement off Levothyroxine now for 7 months, but I think I was misdiagonised, so I am slowly getting over effects of Levothyroxine. Recently added Selenium and I believe I see some more subtle improvement. Time will tell. If the selenium makes a difference it means my body wasn't converting T4 to T3. Looks like I am stuck with low grade hypertenion.

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