I was diagnosed under active 4 years ago. I took levothyroxine in incremental dosages up to 100mg.
I struggled so much as after 3-6 months I started noticing the side effects, profuse night sweats, itching, increased blood pressure/hypertension which required me to be put on Ramipril medication, brain fog and the inability to concentrate and work effectively, anger issues, anxiety and severe bouts of depression. Also swollen and painful joints.
I stopped taking levothyroxine 1 year ago and almost immediately the brain fog lifted allowing me to concentrate better. With this as my starting point I started to exercise low impact just walking about 3-5 miles per day. I was still having issues with sore joints and had to push through the pain barriers and really fight for motivation to get out of bed and do it. However the blood pressure came down and I stopped Ramipril shortly after I stopped levothyroxine. Everyone said I couldn't just stop, but I did and it's been one year, I'm still not dead yet!
I focused on breathing exercise Qi Gong and it's really helped. I still get bouts of depression and aching joints but it's steadily improving. I also recently read about sun gazing and stimulating the hypothalamus. I'm only starting at it but already feeling an improvement.
I am not taking any supplements and just eat healthy organic if I can afford it. I use proper butter, drink full fat milk eat meat fish and chicken- just really normal sort of living. Drinking more water also, I found I was starving my body of water.
I believe the combination of good food, extra water, exercise, breathing techniques, and sun gazing have all helped my condition. I have just requested my results from the doctors for the past 3-4 years and I have not been to the doctors for over 9 months, my last interaction with an endocrinologist was for an adrenal gland test which I insisted on, it proved normal. I intend to make an appointment to get tests done and interested to see the difference if my results from now to when I was on the levo.
Has anyone else come off levo? I'd be interested in people's thoughts and experiences?
I will post any results I get just waiting on the surgery sending my results.
Thank you for your interest, I look forward to your replies.
I'm sorry you've had no replies. Not many people come off Levothyroxine unless they switch to an alternate thyroid replacement like Liothyronine or NDT. I hope you continue to feel well.
Many thanks, I was hoping to get more replies to compare my symptoms now that I am off the levothyroxine but still obviously under-active.
I have by no means cured my condition but alleviated some horrendous side effects of what I believe is a horrible synthetic substance that our doctors are prescribing!
Yes I still feel tired and run down, my digestion isn't great (probably stress) and yes I still have some swelling in my feet and ankles, although I am trying to disseminate between wear and tear and under-active thyroid symptoms. I am 47 and I have led an active life with fell running amongst other things so some tendonitis and aching joints may be what I should expect at this age.
I can certainly say with confidence I would rather suffer the effects of the under-active thyroid than the side effects of levothyroxine.
I believe when I can get my results and start to study a bit more it could be I need liothyronine or NDT. I do definitely feel like I wasn't prescribed properly and was fobbed off with Levothyroxine.
However at almost a year free of Levothyroxine I can honestly say that all the horror stories you hear about 'you must not come off it' may not all be true.
How many different makes of Levothyroxine did you try? There are 4 makes available in the UK and it can be worth seeing whether you do better on one than another.
If you can't tolerate any of the Levothyroxine makes then there is Liothyronine (T3) or natural dessicated thyroid (NDT) but you are unlikely to get those prescribed and will have to purchase your own online and self medicate.
Hi, I stopped Levothyroxine 5 weeks ago after being on .05mg for about 14 years. I have been searching the web to find others who have done this too and finally come across your post!
I spent years with joint and muscle pain, extreme exhaustion, depression to name a few (horrendous) symptoms and that was ON the medication. Since stopping the Levo (Eltroxin) I haven't felt better. I told my husband that the last time I felt this good was before I had children. Granted I am now seeing a deep tissue massage therapist and physiotherapist so that adds to the pain relief, but for the first time in 14 years I can get out of bed without any pain in the morning and I get a full night's sleep. I was always slim before being diagnosed as hypothyroid and have become 30kg overweight in spite of following a healthy diet and exercising. Since stopping the meds I have been losing 1kg a week without changing anything. I no longer have brain fog or unpredictable mood swings. No more napping during the day either. All in all I am very happy with the way I feel. I will see my Dr next week to have blood tests to see how my thyroid is doing. Honestly, I'm beginning to think I should never have been prescribed thyroid medication in the first place!
I look forward to following your progress and comparing it to my own.
Great to hear your feeling better, the side affects of levo are horrible I hate it so much and like you somewhat bitter I was ever prescribed it in the first place. I recall my doctor at the time saying one appointment for each issue, he wouldn’t allow me to explain the myriad of issues I was having and suggested they were unrelated- he just banged me in levo and job done in his eyes...what an idiot! Glad I changed surgeries, I now have better advice albeit I still don’t agree with all of it.
Recently I have been experimenting with extra B12, Selenium, Rhodiola and Ginsing. I have found best results with ginsing and I believe the B12 is helping a lot too. More than anything though forcing myself to get up and go for a good power walk is the best thing I’ve done, I’m lucky to live near a forest. Pushing myself to improve fitness is helping.
I still get ups and downs and bouts of depression but nothing compared to being on levo. Life is definitely better!
Good luck with your progress and please share anything you discover.
I feel just as negative about seeing doctors. It is difficult to find someone who will listen and wait before prescribing medication to "try".
Even though I was very nervous about "natural" medicine I began taking a shake designed for women that contains the same ingredients you mention. I did a lot of research before I decided to quit my meds and have learnt about the various things that we need for healthy thyroid function and would rather incorporate them into a healthy diet than pop pills. There are certain herbs that can be taken by women but have different (possibly adverse) reactions in men and visa versa, Maca for instance which is an adaptogen but has variations (red, black, yellow) which need to be taken into consideration. My shake also includes Tulsi, Hemp, Fo-Ti and Reishi mushroom. Gluten, dairy and sugar have been eliminated from my diet and I limit my caffeine intake to a cup of coffee every other day.
I get to walk a fair amount as I participate in archery almost daily and yes a good brisk walk each morning definitely motivates the body and mind!
This is very encouraging to see, as I am contemplating stopping also. Vainly, the weight gain since going on this drug is out of control. It is affecting my life more than the low thyroid symptoms ever did. Congratulations on taking control.
Lisac122, thanks for your support. I took the decision by comparing how I felt pre diagnosis and how I felt after being on Levothyroxine, after trying different brands and trying different dosage levels it was evident levo and I just didn't get along. The difference is clear without Levo I still have symptoms but at least feel like I am in more control and I can think straight and maintain my weight control, blood pressure, anxiety, depression etc. I firmly believe this drug is something people should not be ingesting.
I am 7 days without it now, and have lost 5.2 pounds. I have done everything the same so that I could see if it was levo causing me to somehow keep piling weight on. Another huge thing is that I started my period today, something that has been gone over a year. I think my body is saying "thank you" , and let's get this figured out. If levo was suppressing a period, I'm thinking it's not exactly the same hormone as we produce naturally. It feels good to take some control back. I
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Stopping levothyroxine
Stopping levothyroxine 
Stopping levothyroxine
Stopping Levothyroxine
