Thyroid Replacement, Levo specifically

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I joined this group a couple of months ago after 3 3/4 years of suffering on a medication that I was told I needed due to a TSH test. I trusted and was compliant, but I was made sick and doctor never acknowledged the medication could be the cause. I was patient and I was compliant and the literature was not honest about all the side effects that were possible. I learned I wasn't the only one when I checked out sites like class action sites ( where people go who have no recourse cause doctors haven't been listening or have been listening and ignoring (late this Summer). People prevail there cause their complaints are real) and sites like this one are  another place people go not to complain, but wanting to know if someone is experiencing what they are. People who need to be heard who are looking for suggestions of what has worked for others, but certainly not JUDGED. Most people are honestly trying to be helpful, but of late there have been a couple of people who are so devoted to Levo that any suggestion it can hurt or do harm sends off judgement rants. Not at all helpful. Levo is loaded with side effects not listed in the drug protocols, but can be found in true scientific literature literature uncovered by attorneys when preparing suits where they are successful. Some thing is off with the labs also because if they were dependable there wouldn't be so many people with a variety of numbers who have dramatically different symptoms. The responses are getting are not standardized like the approved values. I have generously shared and I always urged people to listen to their bodies, read, think, and not be swayed by a single opinion. I have decided to stop contributing at this point because it is not helpful  and confusing to people who need help to be slammed by people who promote Levo solely and tell people to ignore their side effects and their side effects are their fault cause you haven't been  patient INDEFINITELY .  I have been off Levo now since 9/9/2017 and although many of the side effects I suffered have subsided, but not totally. Is anyone aware of permanent damage of Levo?

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  • Posted

    Hi Cathy,

    I can't comment about damage from Levo but I can tell you it didn't work for me.  Made me feel horrible/sick, etc.

    My endo was out and the top endo in the office looked at my case.  He told me there are people who don't do well with Levo due to the dye that is put in the pill and changed me to synthroid (50) which is an all white pill.  At first I was on 100 ug per day but my first blood test showed I was just a little hyper so it could changed to 88, I take 2 50 pills 5 days a week, then 1 50 pill twice a week.  My last 2 blood tests show both my T4 and TSH in perfect range.  I've learned there are good endos and then there are those who think the textbook has the only rules that can be followed.  If you can look for another doctor or ask your PC doctor etc. for guidance.  I'm a little off topic from answering the damage question but i wanted to share my Levo/Synthroid experience.

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    • Posted

      I wish I had the money to have better healthcare, but my HMO has protocols and although I like my Doc as a person I have learned he is in the business of staying employed. I felt really very well until a TSH indicated to him I needed replacement. To be honest I thought it was all straight forward and never guessed I would have been in the nightmare I have gotten into. With in a year I had low grade hypertension when I had had all my life lower, but healthy BP. I learned on the Mayo Clinic that levo can cause hypertension. By the time I learned all this I had been on 2 BP medications that really added to my misery. Thank you for your info. I will share with my Doc at my next physical. 
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  • Posted

    You are not alone in your sentiments about Levo Cathy.  I hear many patients say the same thing.  My cousin had to have her thyroid removed because of thyroid cancer and she never feels good on levo no matter what her labs say.  I know for myself, I was put on a very low dose of Cytomel (T3) for reasons other than thyroid and I felt good on it.  One day my gynecologist thought I should take a product that had T3 and T4 but I really noticed the difference (not good) when T4 (levo)  was added.  I think that is the main problem with levothyroxine - it may not convert to T3 as a person's natural hormones do.  You might want to ask your doc about adding Cytomel or another T3/T4 combination.  You can also get this made up in a compounding pharmacy.

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    • Posted

      Thank you that sounds like a good idea. I thought thyroid replacement was thyroid replacement. I belong to an HMO and they have prescribed testing set in their protocols. I will bring up what you discussed with my doctor at my PE
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  • Posted

    If you are doing fine without thyroxine supplements then it might be that you did not need them in the first place. At a minimum, your doctors should have checked your FT4 and/or FT3 levels as well to confirm with certainty that you are in fact hypothyroid. 

    It would help others who have been misdiagnosed and treated with thyroxine supplements if you could mention the side effects that you experienced and the brand of thyroxine tablets that you have tried.  

    For patients who are overlty hypothyroid or had a thyroidectomy, thyroid hormone supplements are a daily necessity (just like insulin for diabetes patients).  

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    • Posted

      I am on a health plan that has a prescribed test TSH, sadly I didn't know  what a poor test this is alone. I felt perfectly well until being put on Levothyroxine. I agree I don't think I needed to be medicated, but like a lot of people I trusted my doctor's judgement and it put me at a huge disadvantage cause with in a year I had low grade hypertension which I did learn from the  Mayo site can cause hypertension and prior to that I had super healthy lower BP. Still being unaware I was placed on 2 other medications that complicated the picture. With in 3 3/4 years I was a mess and couldn't figure out why since I was following my doctors instructions. I agree for people who don't have any thyroid function  a replacement is necessary. Thank you for your suggestions and non judgement

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    • Posted

      Dan, I don't know the brand it is supplied by CVS Pharmacy. It is a generic I am sure since all healthcare plans usually only approve generic. My provider is Tufts

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  • Posted

    Hi Cathy, sorry you had to suffer due the substandard care of your doctors and it is great that you are doing better now. 

    It seems that very often physicians are not willing to spend the time to explain to a patient what is wrong and what is going to happen, what are the alternatives or possible side effects. And many times they do not take the time to listen carefully to the feedback from the patient. The approach is too often: Try this medication and you will be fine.

    In my case, I had to research about thyroid disorders, read research papers, try to understand my own blood tests,  just to get a sense of what is wrong with me.

    To a certain degree, I understand that health services are often operated at maximum capacity and there is little time per appointment. But I was certainly happy to stumble upon this site and cannot even imagine how I would have managed without the internet as a source of information. 

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    • Posted

      Hi, can I ask a question to something I really don't know.  What does the T3 test measure?

      My TSH and T4 are good (I had a total thyroidectomy) so I don't think about T3.  Should I be??? Thanks for any info you can share.

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    • Posted

      Hi, T4 (L-Thyroxine) is the precursor of the thyroid hormone T3 (L-Triiodothyronine). A normal functional thyroid typically produces 80% T4 and 20% T3.  The rest of the T4 is de-iodised to T3 peripherally (that is outside the thyroid) by your body as needed.

      If you are feeling well, then there is no reason to be concerned. A fraction of patients on T4 supplements have problems converting enough T4 to T3. These patients might require supplementing their thyroid hormone with a combination of T4 and T3.   

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    • Posted

      Dan I agree about this site. I am not ready to give healthcare a pass. I left nursing 11 years ago due to an injury and I have to say the only thing I missed was being able to be employed. I was that person who took the time and respected people, but I can't say the same for healthcare generally. I got snookered by someone I trusted. He might be a "nice guy", but he practices "Employment", not healthcare. My understanding of thyroid care was overly simplistic and wrong. I assumed what I was told and read in healthcare literature was the truth. We need insurance out of healthcare and doctors to stand alone and be responsible for their practices including the prescriptions they write and get the "deep pocket " healthcare groups out of the picture cause they are protecting poor dx and practice and "killing " people. Still hoping to learn if there are any long term permanent  side effects from the Levo, Lisinopril and Amalodipine I was on or if I can expect to resume my normally good health any time soon. I am grateful for what I have learned, but am left with the impression healthcare poisoned me and I am not alone. Thank you

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