heiseygirl Posted October 11, 2011 Report Share Posted October 11, 2011 After being sick with pots for 10 years I am considered in remission. I am not back to where I was but so much better. It came when I changed my thyroid med from synthroid to armour thyroid. I begged Drs for years to let me change my med but none would. Will not even get into how i got the other med but to say I had to go to Great Britian for it. My question is. Is this remission temporary or permanent. Steph Quote Link to comment Share on other sites More sharing options...
sue1234 Posted October 11, 2011 Report Share Posted October 11, 2011 That's great that you feel "normal"!! I would take one day at a time and assume everything will be fine if you can see the direct benefit from Armour.I have tried Armour in the past, and it always made me too hyper. My body could not handle the T3 in it. I don't know what area you are from, but I was easily able to get it prescribed from any holistic MDs. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted October 11, 2011 Report Share Posted October 11, 2011 how long have you been in reemission so far? I actually reconnected with a friend on facebook who had POTs for 10 yrs and has been symptom and med free for two years. I guess anything is possible with this crazy illness. Good luck, would love to hear more about your experience Quote Link to comment Share on other sites More sharing options...
lieze Posted October 11, 2011 Report Share Posted October 11, 2011 I agree tell us more-it gives us hope.Update when you can.Are you tolerating being fairly active?I can be somewhat active but I have to watch it or the heat comes on and my heart gets worked up and then I have to take time out in meditation to get calmed down again.Not meaning to complain I'm happy for any normal here.And also I have NO plans to go back into healthcare even though it was my only career.I think with my sensitivities and frailty-it just isn't the place for me any more. Quote Link to comment Share on other sites More sharing options...
derekliz Posted October 11, 2011 Report Share Posted October 11, 2011 I am so happy for you and pray that you continue to do well! Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted October 11, 2011 Report Share Posted October 11, 2011 It's so good to hear you're feeling better.......... I've had two remissions, each lasting about 6 months. The first time in 1987 I came back to about 75% of my self, the second in 1999 I came back to about 50%. Neither time did I change anything.......it just happened. Enjoy every minute of feeling well, don't look back. I dream everyday that I'll get another...... Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted October 11, 2011 Report Share Posted October 11, 2011 I don't think there's any formal data on remission rate, or how long they last... I can tell you I know a few people who got better and symptoms never came back... and still others for whom the symptoms go away for a few months at a time and then come back. I've personally never really experienced a remission, but I have had cycles of feeling somewhat better and other cycles of somewhat worse or much worse. My cycles last a few months at a time, with the exception of one really bad year about 15 years ago, where I was probably experiencing a Mastocytosis flare--I developed so many allergies I couldn't keep up with the list, and I was hospitlaized multiple times for asthma, allergies, pneumonia, sinus and ear infections.Nina Quote Link to comment Share on other sites More sharing options...
songcanary Posted October 11, 2011 Report Share Posted October 11, 2011 I try not to make gross exaggerations but I can honestly say that Armour thyroid has saved my life. My current GP told me that some people just don't convert T4 to T3 well, and I am probably one of those people. It took about a month to notice a difference and I continued to feel better each day for about six months. I have been taking it for 1 1/2 years. I would consider myself in remission at this point. I must add that two months ago I started Florinef and LDN, and now I feel totally normal. So I think the triple combo is good for me. I just wake up each day and cross my fingers!I get the Armour from my allergist who is an MD, but my GP told me he would also prescribe it. It took me years to find a GP like that. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted October 11, 2011 Report Share Posted October 11, 2011 I have had one "remission" of about 75% of my health, that lasted for about three or four months. As I said on another thread, though, I am blessed beyond belief because it led me to be able to briefly return to work. While back at work, I met Marty, who not only is the love of my life and the best support a girl could ever possibly hope for, but will also be my husband in just over a year. (Health permitting, we are planning a "pre-anniversary" celebration tomorrow to celebrate the fact the we are getting married in exactly one year. With all my health issues, we really try very hard to celebrate any and everything we possibly can!) My medical team has given me to understand with my current complicating factors, further "remissions" are unlikely. Some days are better than others, but there is no expectation I will ever work again, and am becoming increasingly disabled. But I celebrate the fact that I am officially off the hook for having to do the dishes, permanently! I find I cope a lot better by focusing on those things that make me happy, the people I love, and the blessings that God abundantly bestows upon me. My understanding is that for many others, though, remission is certainly a very large possibility, so PLEASE do not despair based upon my experience. If anything, take great hope in the fact that my life, despite its pain and other challenges like increasing disability, is so very, very joyous!Sandy Quote Link to comment Share on other sites More sharing options...
WyomingGal Posted October 13, 2011 Report Share Posted October 13, 2011 I have been on armour for about two weeks. I just seemed to plateau with my POTS recovery. I am already noticing a huge improvement. I have more energy and recover a little bit faster than I did before, plus my sleep is better. It is weird to adjust to the med, because sometimes I get some palpitations and I have to remind myself that my body is adjusting and trying to use something it has been deprived of for awhile now. I hope to see more improvement in the coming weeks! Quote Link to comment Share on other sites More sharing options...
sandymbme Posted October 14, 2011 Report Share Posted October 14, 2011 I am so excited for those of you who are experiencing remissions, and having such much needed relief! Hooray!Sandy Quote Link to comment Share on other sites More sharing options...
andersondebra Posted October 14, 2011 Report Share Posted October 14, 2011 I am so happy for you! I too went into a remission for about a year and a half, and just this past summer got hit again. My remission was around 80% and I loved it, I thought I would never deal with this again, but here I am. This time it seems to have hit me a lot harder and I am for the first time having more trouble trying to find a drug or combination of drugs that work for me, so I am feeling a little hopeless right now, but I have to keep reminding myself that I got better last time and it will happen again. I too like others on here can not tell you how I went into remission or how I have come back out of it, but it did happen.My advice to you is stay positive and just keep thinking that will last forever. However, listen to your body, when you feel tired or like you are pushing yourself to hard to fast back off and rest. But most of all enjoy each blessed day that you are free of this illness.congratulations!Debra Quote Link to comment Share on other sites More sharing options...
kayjay Posted October 14, 2011 Report Share Posted October 14, 2011 Thanks for sharing! I am so very happy for you. For me the onset of POT was slow and I keep telling myself that recovery will be slow.... it's been more then 13 years for me but I am doing better.have fun and stay hydrated!... if you can play tennis.. play a game for me. I miss it Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 18, 2011 Report Share Posted October 18, 2011 So far (and hopefully always) I have episodic POTS. the last time was horrible. Fainting, anxiety in the stomach as soon as I got vertical in any way, etc.I've had Hepatitis and I have ankjylosing Spondylitis and I'd take the later three times worse for life over a month with POTS ever! Currently I guess I am in remission. I have occasional bad days, but otherwise I function all be it with less energy. Still dont deal with stress like i did before POTS and AS. But I can exercise, socialise, work, etc. I can run 5 kms and mow a 1/2 acre block LOL Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 18, 2011 Report Share Posted October 18, 2011 I think that I have had two remissions in the past three to four years. The first one lasted for about 4 months, and I was able to work and stay up longer than usual. The second one was about the same, occurring about a year later. I would love to have another one! I'll have to look up "Armour" since I can't tolerate either Florinef or Midodrine.Great news for those of you getting relief from Armour and having remissions!Cheers,Jana Quote Link to comment Share on other sites More sharing options...
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