Off Synthroid...: Hello, I’ve been following this... - Thyroid UK

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Off Synthroid...

Maikelbruce profile image
5 Replies

Hello, I’ve been following this site for quite some time and it’s very very helpful for people like me. I’ve been hypothyroid since I was 19...now I’m 39 and it’s been a roller coaster. Going to doctors that treat you like an exam paper. If the results come back normal, "oh you are fine” but that’s not the case...there were some days that I couldn’t get out of bed. I felt incredibly tired and every bone in my body hurt. This symptom would go on and off for months and then I would feel fine again...it was just weird.

One day I noticed that this feelings I was having would only get worse when I took my medication which was kind of big dose which is 200mcg. I’m a tall person 6’4 205lbs. I had just come back from the doctor and again all my blood work were fine and in range. So I tried something...I said to myself: I have nothing to lose. So I stopped taking my medication...and by the third day I started noticing some changes and feeling different. I was waking up earlier, my body was not aching, my mind was clear and not foggy I felt I had a lot of energy. Then I also supplemented with atioxidants...like this website recommended: vitamins A, C, E and Selenium along with B13 and vitamin D as well.

But just like everything...it doesn’t last forever. This was great for about 3 weeks and then I started getting my hypothiroid symptoms back. I went back on my medication and I felt just fine. What I learned from this experience was...that I think the medication was over metabolizing in my body but what I find very estrange is that it was not showing on my THS report.

What I’ve learned or really what I found and works for me is that...when I get those symptoms again I stopped my medication and I cycle it off and on. I really don’t have any kind of explanation for this it just worked for me.

I took this time to write this...because I know what is like to feel this way and it’s not fun. It can be very disruptive to your daily work and family time. Please remember, I’m NOT a doctor. I’m just a regular individual that happens to have this condition.

Thank you

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Maikelbruce
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5 Replies
shaws profile image
shawsAdministrator

I am glad you are feeling better and found a circuitus route to improving your health.

The 'old-fashioned' method is best i.e. take note of clinical symptoms and tick off as they are resolved and slowly increase dose of hormones every two weeks.

thyroiduk.org.uk/tuk/about_...

Usually FT4 and FT3 have to be in the upper part of the range. Also, of course, all vitamins and minerals have to be optimal.

One of our deceased Advisers only took a blood test for the initial diagnosis and thereafter it was all about relief of symptoms.

web.archive.org/web/2010103...

Maikelbruce profile image
Maikelbruce

Thank you. I will try that! 👍

greygoose profile image
greygoose

But if you continually stop and start your levo, you are never going to find your optimal dose.

Yes, you felt well when you stopped it. Everybody does. It's a well-known phenomena. But, as you found out, it doesn't last. That's not going to make you well in the long run, because whilst you're still on this sub-optimal dose, damage can be done to your internal organs due to lack of T3.

It could be that you aren't converting your T3 properly, But, if you don't actually post your actual results, we'll never know! It's a given that your doctor is going to say everything's fine if everything is in range. But, just being in-range is not good enough. it's where in the range the results fall. You could still be under-medicated, even with your results in-range, but your GP won't have the faintest idea unless you stand up to him.

Or, it could be that levo doesn't suit you - it didn't suit me. I tried adding T3 - better but not perfect - tried NDT - worse than levo only! And finally settled on T3 only. It's all trial and error, but if you're too busy stopping and starting your levo, and confusing your body, you're not going to be doing any trialling, are you. Sorry, but I think your solutions is a bad idea, and could be dangerous.

Maikelbruce profile image
Maikelbruce in reply to greygoose

Hello and thank you for replying. I really tried all that in all types of configurations and did not work. The only way I really feel most optimal is by cycling the Levo on and off. BTW I don’t let it get too far off. What I mean is: I really listen to my body on the symptoms. I really don’t know how to explain it and why this happens...it just works for me. I was just putting this information out there maybe somebody is going through what I went thru and has gone to many doctors like I did with no answers. Again, the key is...we must pay close attention to our bodies.

Tranquilseas profile image
Tranquilseas

I think I will try cycling off. I feel like he'll right now.

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