Thyroid treatment kicking off withdrawal - Thyroid UK

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Thyroid treatment kicking off withdrawal

Rachel1958 profile image
5 Replies

I am so much better since starting self treatment with T3. This question is about detox, though.

Very long story and i won't bore you with it.

Basically i've had a dreadful time getting off amitriptyline, as i proved to be terribly sensitive to it.

It took 5 years, i kid you not, including some truly awful bouts of withdrawal.

I finally managed to get off it last year, but had still been getting a day or so a week when i have withdrawal symptoms/dotox (whatever the best thing to call it is!), which make me feel dreadful.

However since i started the T3, although my sleep, temperature, energy levels, etc have improved, i am getting the withdrawal symptoms every other day.

Which is making me miserable.

Its almost as if my metabolism kicking into action has set off withdrawal again. Lovely!

Have you ever heard of this before?

I realise, of course, that it may be a coincidence!

Thanks for reading.

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Rachel1958 profile image
Rachel1958
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5 Replies
JenSetz profile image
JenSetz

Hi Rachel, how would you describe the withdrawal symptoms? I've been on 200mgs a day for several years and the doctors are giving me a hard time for being on such a large amount (the highest recommended dose is 150mgs but my old GP put me on the high dose and now I'm feeling like it's my fault). The reason I'm on it is for insomnia.

I really hope you can feel better soon.

Rachel1958 profile image
Rachel1958 in reply to JenSetz

Oh god - they are nightmarish. But everyone is different so you may have no trouble at all. Basically, every side effect can be a withdrawal symptom. I get just about the full house!

JumpJiving profile image
JumpJiving

I completely understand. Short version - I started weaning myself off amitriptyline recently and gave up for the time being, as it was one too many things being changed at the same time. I figured amitriptyline needed its own weaning-off phase, without juggling other things at the same time. It's not an easy one to do. Giving up caffeine, or changing thyroid meds, for me at least, have been far easier.

Longer version - I started trying to wean myself off amitriptyline whilst also changing my thyroid meds (from levo to NDT) and giving up caffeine (along with other changes too). I take amitriptyline in syrup form due to a lactose allergy. I only take 7.5ml per day. I thought reducing to 5ml and then 2.5ml and then 0 couldn't be that bad. After all, I gave up caffeine easily enough after decades of addiction. But after a couple of weeks on 5ml of amitriptyline, I caved. I've gone back to my full dose of 7.5ml until everything else has stabilised. I am on day 95 counting from the day I stopped taking levo and started taking NDT. I've changed dose twice in that time, so am waiting until 6 weeks from the last dosage change before getting blood tests done again. I am definitely starting to feel more human. Not energised, but also not as fatigued as I was. I walk lots (big dog) which was getting to be a struggle, but that's now getting easier again. I've also started a demanding parallettes exercise program, which I couldn't have contemplated even a few months ago. If when the 6 weeks is up, I am feeling good, my sleep is better, and my bloods look ok, then I will have another go at reducing the amitriptyline. If still not quite right then I'll wait another 6 weeks and try again. For me, it was one too many things to change at the same time. Without amitriptyline I have dreadful insomnia, as well as migraines (which is the reason for me taking amitriptyline, although I'm not sure it ever actually made much difference). I took my dose tonight about 10:30pm. It's now 00:40am and I'm still awake. Will probably be asleep by about 02:00am. Without amitriptyline I'd still be awake at 04:00am. I am hoping that sorting out my thyroid meds, as well as having given up caffeine, will help with the insomnia, possibly help with the migraines, and leave me in a state where I can contemplate coming off amitriptyline. I don't think it will be easy.

Rachel1958 profile image
Rachel1958 in reply to JumpJiving

Oh you poor thing. I totally empathise. In the end i had to do a super slow taper over 2 years to get from 5mg to .1mg. I'm still suffering even though i took the last dose 16 months ago! Some of us are super sensitive.

I posted about this on another forum and got this amazing reply. Soooo helpful!

" I used to be part of a group to help people taper from ADs. What you are experiencing is not unusual. I don’t know how you tapered but I, myself, had had a hard time to come off of ADs. I still suffer 3 years later of the side effects of a too fast tapering. Too fast mean tapering more than 5 to 10% at a time from the drug. There are very good books that explain the issues, like peter breggin: your drug may be your problem. My main issues involve my cns and lots of sensitivities. I was diagnosed with fibromyalgia, which is most likely a result from being on ADs too long and tapering too fast. T3 has helped me to recover but recovering from ADs involved going through windows where you feel good and then feeling crappy again. What you are experiencing is called PAWs. It will fade with time but is a long process. One of my longest issue has been muscle pain and tinnitus. Some other issues come and goes but bottom line, detoxing has to be done very gently and introducing supplements to detox are tricky as it can make the withdrawal feel worse."

Here is the link - the whole thread is very interesting. You'll need to join the group (another thyroid group) to have a look.

facebook.com/rachel.mccarth...

Greekchick profile image
Greekchick

To Rachel, Jen and Jump,

Wow- your docs have you on really high doses of amitryptiline! That stuff is sedating at 12 mg or less! I’m amazed you all could actually function - I take 5 mg occasionally for back pain when it gets really bad and that knocks me out at night. My doc started me on 12 mg and I developed migraine headaches - and it’s actually used to treat migraine headaches - so people have strange reactions to it. At the low dose, it doesn’t bother me and I only take it when I really need it - less than once a month.

I hope you all do better and I would recommend weaning off one thing at a time - it’s too hard to do it all at one time.

One thing that has worked for me with other drugs is to try to fool your body - so I actually shave off some on each tablet and just do that one time a week. Each week I shave off a little more - it takes about 6 months to do this but you may find that the small amount you reduce makes it tolerable.

Wishing you all the best.

I can understand why you are having such a hard time getting off it - it affects the brain in a profound way.

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