I had wrongly been placed on Levothyroxine when TSH testing indicated I needed it .

Cathy, forgive me but I want to challenge you, in the interests of clarity only.

You assert that you have/had a healthy thyroid. How do you know? Would your doctor agree?

You say you were feeling really well at the outset, so what caused you to have a TSH test in the first place?

How can you be sure it was the medication that made you feel bad?

Why did you expect to feel better when you were back home from wherever you had gone?

Not everyone feels better on thyroid replacement, that's true. Have you continued to get TSH tests? Now that you have stopped taking meds has it changed? Please keep getting tested. As I'm sure you've been told, the body typically takes weeks to adjust. 

Finally, opinions differ as to whether the meds do permanent damage. Some say yes but that's not definitively proven.

Good luck, and if you feel like continuing the dialogue, people here will absolutely respond.

No I don't mind being challenged at all. The TSH is in the panel of routines that are done. I can't say my thyroid was in perfect shape, but  I had no signs there was anything was wrong, not all lab work is absolutely accurate and TSH can be elevated in your body when your body has an iodine shortage and your body is doing everything it can to source it within your body. It could be a matter your body is not converting T3 to T4. Changes in TSH means there is a problem, but not always need for replacement. I am not avoiding being tested at all I just want to take a better look at what is really going on because the myriad of symptoms I showed up with are in line with side effects. I blamed some of side effects  on stress perhaps because I trusted my doctor, but when the stress was gone I expected to fell a bit better. I had been taking all my medications exactly as prescribed . I am the kind of person who is a doctor's dream patient. With in a year of being on Levothyroxine I had low grade high BP and my pressure was always real real good. Zero family history of hypertension. I don't eat crap, rarely eat out. None of what was happening was making any sense., but when I researched the Lisinopril and Amlodipine hell I was a poster child for  their side effects. It got me to thinking when I first started feeling crappy and it was when I was started on Levothyroxine. From the first dose I felt like a race horse in side  - like literature describes the effects of "speed", so I thought what the hell and I looked up the drug and hot damn Levothyroxine can cause hypertension and that was the Mayo Clinic! I haven't stopped all the medications because I do know the dangers, but the Levothyroxine I did. Some of the side effects are  easy up and some gone entirely. I know there are a lot of people on threads complaining how they need thyroid replacement and condemning when you even question your  not needing  thyroid replacement and I ignore that crap. I have been blessed good health all my life until a Levothyroxine  robbed me of that health and more than likely gave me low grade hypertension. I enjoy the sharing of others because quite honestly what is out there in PDR and the like is quite short of honest. I know my doctor was doing what his protocols tell him. I have known him since he was an intern, but this is my life , my health, all God given.

Hi Cathy, you’ve been on this medication four years!! Yikes. You clearly know it’s causing you problems and you’ve read about the side effects, which yes, include hypothyroid disease. 

Every time I thought I had detoxed this stuff, there was more. However, the first three month since were the worst. After six months I felt like I’d detoxed most of it. Now it’s been a year a half an I still notice detox effects. Seriously, I can smell it in the urin.

You May still have thyroid issues, as TSH can spike and fall during early thyroid disease. There are a lot of supplements and dietary change supplements you can make that help a lot. The most important I’ve found, are essential amino acids. Not sure this information isn’t all over the Internet, as they work and have a very strong scientific basis. Paleo style strict gluten free diet also helps. As does detoxing.

Good luck to you!

Hi Friend,

            you and I communicated when I first started over a month ago now. I valued you so much. My problem I initially thought was the BP stuff and there was plenty there. I have been off the Amlodipine now nearly 5 weeks and Levothyroxine a month now( when I discovered on the Mayo Clinic  site the Levothyroxine can cause hypertension) and nearly 1 1/2 weeks I have reduced the Lisinopril from 5 mg to 2.5mg. See I didn't have any sx of thyroid problems when a TSH caused the doctor to put me on thyroid replacement nearly 5 years ago now. That is when all my hell broke loose and a year later I had low grade high BP and of course you know what hell the BP meds can do. . Hell I had side effects that I didn't fully realize. I had extreme muscle  and joint ache and fatigue, blurred vision, fleeting lightheadedness. I didn't have any of that before Levothyroxine! Hell I was walking 2 miles a day / 3 days a week. Slowly but surely I started falling apart. Then at my next PE I had low grade high BP and was placed on Lisinopril and Amlodipine, from the best I can figure  that is where I picked up phlegmy throat so thick at times it would interfer with eating, I had transient nausea. my muscle weakness and fatigue was worse and neuropathy. Hell I got to thinking I must be developing some type neurological syndrome. I was also noticing I had become short of breathe and experiencing hot flushes. Hell  I didn't have hot flashes during menopause! It was damn frustrating cause I had so much ambition, but I had so much muscle and joint discomfort and spasms I blamed on maybe arthritis from a rotator cuff injury that wasn't well treated and I thought I was over using other parts to compensate, but that is another story. If you remember I told you I had found the BP drug stuff on consumersreports site before finding this site. I have  have taken the Vit D3 for about 5 years, added Magnesium which is a natural calcium channel blocker, so I felt safer coming off the amalodpine. I also use nettle cause it is a natural diuretic and I hoped it would help the low grade hypertension. I stayed on the Lisinopril being it was a beta blocker and could have a rebound, but a week ago I decreased the Lisinopril from 5 mg to 2.5mg. I have been monitoring my BP closely. It is amazing how many side effects have cleared over the past 5 weeks. The muscle and joint pain and mostly muscle weakness  is still nagging, but I think it maybe improving . The truth is I have been so disabled I think some of it at this point could be a matter of disuse and I have to keep pushing to rehab myself. My post today is to see what others have experienced coming off the Levothroxine was  and if people find that their thyroids have been permanently harmed. It is a hot button question I am finding. It seems in the medical community if your thyroid TSH is off dispite how you feel you need thyroid replacement. No one seems to take into account there are reasons people's thyroid numbers are off like you are not converting T3 to T4 and why your body might be continuing to have elevated TSH like a missing nutrient. getting use to push back, but hell I feel so much better. Besides research I have been in prayer about this all the way. I am doing better, but I take nothing for granted and appreciate how generously people share their experiences like your self. You like me also delt with your mother's health issues, so I know I am sharing with a kindred soul. Excuse my million misspellings I am just in a hurry to get this reply off. Again thank you for your generous spirit

You are completely right in the fact that you may have never needed T4 replacement to begin with.  Your correct in that the TSH level can go higher or lower, depending on the time of day, foods we eat and even stress.  Some doctors are quick to jump the gun and put someone on T4 replacement without further testing.  This is why most research indicates that unless someone is very symptomatic, not to use T4 replacement until the TSH is at 10.00 or higher and T4 in the low range.  It's so mistakes like this don't happen.  I would also like to mention that all of the side effects for Levothyroixine, comes from being over medicated.  It sounds to me as though you are right, that you may have never even needed Levothyroxine in the first place and now your experiencing symptoms of hyperthyroidism.   It is rare for someone to not be able to convert T3 into T4, but it's always possible that you could have been deficient in iodine for a bit.  It's also possible that you can have Hashimoto's and your thyroid just clonked out for a bit, but is back on track now.  Lots of people can have Hashimoto's and never develop hypothyroidism.   To find out if you even have Hashimoto's, which is the leading cause of hypothyroidism in developed countries, ask your doctor for a Tgab and Tpo antibody tests.   Now.. as for your question on if your thyroid will be damaged forever?  I'm not sure.  There are a few people on this site that actually have been misdiagnosed also and by their comments, it seems as though they were struggling.  I have not heard much from them lately.. that may be good or bad?  Not sure.  Do you happen to know what your TSH level was, when you were put on Levo?  How about while on Levo?

No I don't know I trusted. We had so much going on  dealing with a farm and losing the farm that I trusted my doc that I have known since he was an intern. I don't think he was trying to harm me. Sadly doctors have gotten out of the practice of actually practicing medicine DX, they follow protocols and sadly much of the protocols are based on lab work and sadly lab work is only one piece of the puzzle not the dx. "Healthcare" is more "Health Captive". Far too many people treat a dx as an accomplishment and each script as an award! I will ask him in December when I have my PE. I will be respectful, but firm. The BP stuff I hope to have mastered by being off the thyroid and following a stricter diet. I contacted a diet specialist by the name of Merritt who works with conquering hypertension if my BP is low again there will be no rationale. Thank you for your input I appreciate the knowledge you have shared and I will be back on when I have something to share. Again thank you