Going off thyroid meds

[ratoncita]

Has anyone looked into going off thyroid medication? I’m on desiccated thyroid.

[waveylines]

Why would you?

[Jazzw]

Are you still only on 30mg (half a grain)? Your blood tests didn’t look too bad when you posted them before. Half a grain isn’t that much. I wonder whether the LDN you’ve been taking has had some kind of effect (I’m out of my depth on how LDN might help, only that it theoretically could).

What’s your thinking around stopping?

[ratoncita in reply to Jazzw]

My ND suggested that at some point I won’t need it anymore? Hypothyroidism gets better? 🤔

[Midnight_Voice]

If I’m off my meds (75mcg of levothyroxine per day) I’m slow, but it doesn’t seem to me that I’m slow, just that time is passing more quickly.

So, subjectively, coming off the meds would shorten my life as I experience it.

But perhaps I am lucky that I have no side effects from the levo that would be a balancing consideration?

[Margareta3 in reply to Midnight_Voice]

How did you go off, gradually or cold turkey? For how long were you on levothyroxine? Have your blood test results changed (T3, T4, TSH and antibodies)? Has anything changed about your symptoms? Please, let me know.

[Lalatoot in reply to Margareta3]

I reduced my levothyroxine gradually over 4 months. Came down from 100mcg to 25mcg. Felt fantastic! Then after another month I felt really awful. Thyroid bloods at very bottom of range - symptoms high anxiety, brain fog, aches all over, barely able to function, bloated with fluid. Spent the next year all but bed bound.Would definitely not try it again.

[Margareta3 in reply to Lalatoot]

Thanks! Does not sound encouraging...

[pennyannie]

Hey there again ;

We spoke last time about your dose of NDT being quite low - have you increased from 1/2 a grain and has your T3 improved from when on T4 only ?

I see you asking about LDN - sorry i haven't any answers on that.

I also see you asking about Hashimoto's AI thyroid Disease - have you had this diagnosed as this can present with erratic thyroid hormone production and leaving you more confused as to what you are actually dealing with.

If your were diagnosed as needing thyroid hormone replacement I don't think it wise to just stop and any immediate feelings of better health short lived.

[geffers]

I’ve done this back in 2013 from June until December and I wouldn’t recommend it.I had terrible symptoms felt unwell after about 2 months even thought I was going to pass out a couple of times and I do get migraines occasionally but I was getting three a day at one point.

You will be wondering why I did this well my Endo said it would be ideal if I stopped taking Levothyroxine in order to get test results tsh, t4 t3 to gage correct meds level

required to improve my wellbeing.

I am on 75 mcg a day was on 50 mcg and seems my fatigue foggy brain , lack of concentration generally feeling unwell has improved.

Would I do this again rather than the usual trial and error adjustment of meds -absolutely NOT.

Geffers

[jsy_girl in reply to geffers]

Why on EARTH would your endo suggest that?!!!!!! Is he actually a qualified medical doctor ?!! Beggars belief.

[geffers in reply to jsy_girl]

Well you go by what the Endo consultant advises and this is what she advised and as is normal it takes quite a number of weeks to get Levo out of your system.I will also add that her boss at the hospital when I spoke with him on another occasion regarding mainly my fatigue, but also other symptoms, and after looking at my test results made the comment that “I would just have to put up with it” regarding my symptoms.

My belief is Endo consultants largely are not interested in resolving patients ongoing health problems after initial treatment (I had three lots of radio iodine )as so many people ask if people know of Endos who can help them because they get no where with their current one and it’s probably a NHS directive for Endos to limit there time with each patient due to the cost it would involve.

[Wolfiesmom08]

I have posted on this forum multiple times my experience with reducing my medication because I thought it was giving me headaches. In actuality I just needed more medication but my experience was that I became unable to eat extremely nauseous dizzy, Extreme shakiness weakness. At first I felt great and then about two weeks and I spiraled into terrible anxiety. It was one of the worst decisions of my life. It took months to recover. Now I am on almost 5 times amount of that medication life is good and I feel great.

[shaws Administrator in reply to Wolfiesmom08]

Sometimes we do have to experiment (slowly) and if we could source the thyroid hormones ourself, we'd be able to do so.

[Suzzzabelle]

I never feel energized anymore. Always struggling with dry skin, aches, brain fog etc

I am now fairly certain now after speaking with various doctors that I should have never been out on it. A hormone, anti-aging doctor put me on it, I believe now, as a standard formula he uses on ALL women in menopause. Now my thyroid no longer produces what it needs.

I intend to titrate very, very slowly off my thyroid med ARMOUR. I’ve been on compounded, traditional T3/T4 in the past. None of these work for me.

[mistydog in reply to Suzzzabelle]

If you were a diabetic, would you reduce your insulin and stop it? The thyroid won't start working, and thyroid hormones are used in every cell in the body.

[millymumpkin]

I would not recommend it. I am only on 25mcg thyroxine & decided to go without as it "seems" a low dose. Fine for a month or more, then....... terrible joint aches/muscle pain & weakness, really tired, sleeping all the time - I felt awful & a bit grumpy/miserable. Went back on it, but needed 50mcg for a while. Now back on 25mcg. Don't forget the half life of thyroxine is A WHOLE MONTH - that means you'll feel fine for a few weeks, but could feel as dire as I did a month or so after stopping. I am a big fan of checking my bloods regularly (3 monthly) & there was a huge difference - T4 went borderline low & TSH went up to hypo level. We are all trying to do the best for ourselves & it is normal to try things for yourself - beware you may feel rubbish.

[SeasideSusie Remembering in reply to millymumpkin]

Don't forget the half life of thyroxine is A WHOLE MONTH

The half life of levothyroxine is 7 days not one month.

[millymumpkin in reply to SeasideSusie]

My sincere apologies, typo -should read A Whole Week, therefore about a month until feel rubbish!

[radd in reply to millymumpkin]

millymumpkin,

I think you meant the half life of Levo is about a week, which means it takes about a month for the body to rid itself.

[millymumpkin in reply to radd]

Apologies - my typo

[magsyh]

I have been off levothyroxine for four months now. I didn't have much of a choice as doc said it was the cause of my anxiety and palpitations. First few months was terrible everytime I phoned the doc in panic I was told to get lost it was just my body adjusting. I was so scared of how I felt I started taking 150mcg iodine and 90 mcg selenium. My blood results are now better than they have ever been. With T4 and T3 near optimal but raised TSH. I still have the anxiety and palpitations so the doc was wrong. Thing is now I don't know where to go from here, maybe I was just iodine deficient? I don't have hashimotos but GP is not interested. No idea what the future holds.

[mistydog]

If you were a diabetic, would you reduce your insulin and stop it? The thyroid won't start working, and thyroid hormones are used in every cell in the body.

[ratoncita in reply to mistydog]

Makes sense.