Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 I am 3rd generation of NF2. My grandfather had it, passed it to my mom, my mom passed it to me. Coincidently, we are all the first born in our family. Wow, that's strange...I am the only person in my family that has NF2. I was also the first born in my family. Strange... June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2004 Report Share Posted May 16, 2004 The antibodies testing is reliable. How long has it been since you were tested for your cortisol? I have a sneaking suspicion that it might be your own cortisol kicking back in, instead of your Armour, reason being that your pulse is going back down before bedtime. That would be around about the time that cortisol should go down, and the early morning would be when it kicks up again. Just guessing trying to help here. If you go off of the adrenal supps, do taper them very slowly, but get tested first, before you do this. I don't know how long it's been since your first testing for this, but I would check into it. Of course, it could be the opposite----every time you try to raise your Armour, you COULD be having difficulty with it because of ongoing adrenal exhaustion. This is ONE place where I DO believe in testing (cortisol). question To All: On April 17 I increased my Armour to 5 grains. I was also in the process of decreasing my Cortef from 10mg per day to 5mg per day. I went to the doctor on April 20 and my pulse was 102, I was feeling fine. Went back to the doctor on April 28 because I was having headaches and my hands were tremoring slightly. No anxiety, heart palps, panic attacks, etc. My pulse was 112 but I didn't know it or feel it. So I decided to back down to 4 grains. That helped some but I am still having the hand tremors and my pulse will be anywhere from 96 down to normal of 82. Usually the normal is at night before bed. It was 94 this morning before getting out of bed. I have gone a day or two without any Armour with little effect on my pulse. I thought it might be from adrenals still being fatigued. So I continued with the 5 mg even though I should have been off Cortef by now. I also added 3 Nutri-meds per day to the regime. There is little effect on my pulse. I was wondering this morning if I could possibly have Hashis. I have had one antibodies test - the peridoxase one and it came back normal. I have read about the tests not being reliable so am not sure what to think. Any thoughts would be appreciated. Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2004 Report Share Posted May 16, 2004 , Am I losing my ever loving mind? I thought you sent an article around about the antibody testing. Guess my hypo mind didn't get it. I am thinking that my adrenals are still not up to snuff. I had a saliva cortisol done in Jan. and I was low low normal on all 4 time periods. I have only been taking 10mg per day of Cortef for two months and then my doc and I agreed for me to taper off. I was in that tapering off period when I was trying to increase to 5 grains and got the headaches again, happened when I tried to increase to 3 grains before getting on Cortef. Headaches went away as soon as I started the Cortef. My temps are still holding around 97.2 and still have symptoms at 4 grains. According to the email you sent around earlier today that is not a very high dose. I am thinking like Topper that I will have to support adrenals a good two years and top out at a much higher dose than 4 grains. Deborah question To All: On April 17 I increased my Armour to 5 grains. I was also in the process of decreasing my Cortef from 10mg per day to 5mg per day. I went to the doctor on April 20 and my pulse was 102, I was feeling fine. Went back to the doctor on April 28 because I was having headaches and my hands were tremoring slightly. No anxiety, heart palps, panic attacks, etc. My pulse was 112 but I didn't know it or feel it. So I decided to back down to 4 grains. That helped some but I am still having the hand tremors and my pulse will be anywhere from 96 down to normal of 82. Usually the normal is at night before bed. It was 94 this morning before getting out of bed. I have gone a day or two without any Armour with little effect on my pulse. I thought it might be from adrenals still being fatigued. So I continued with the 5 mg even though I should have been off Cortef by now. I also added 3 Nutri-meds per day to the regime. There is little effect on my pulse. I was wondering this morning if I could possibly have Hashis. I have had one antibodies test - the peridoxase one and it came back normal. I have read about the tests not being reliable so am not sure what to think. Any thoughts would be appreciated. Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2004 Report Share Posted May 16, 2004 Thanks Janie. I think I will try to stay off it for a couple of days and then stay at a fairly low dose for several more. My T4 has always tested pretty square in the middle but T3 has always been over the top. I am wondering if some of the T3 isn't reverse T3. What is a good pulse, low 80's? How about bp? Deborah Re: question Hi Deborah! It does sound like you were overdosed, especially by that high pulse! I can understand why you cut back. I have learned and observed that when folks get over 3 grains, and still feel the need to increase, it's wise not to increase one grain at a time because it simply may be too much. Some folks can do it, but you just never know how close you are to you optimal dose before the increase! It may take more than a few days to rid yourself of those tremors and high pulse. The T3 drops fairly quick, but you have put a lot of T4 in your body, and that takes time to drop. You just hang in there. Maybe you could drop to 3 grains for a few days, then go back up to 4?? Just a thought. I'm sure your intuition will tell you what to do. Janie ) > On April 17 I increased my Armour to 5 grains. I was also in the process of decreasing my Cortef from 10mg per day to 5mg per day. I went to the doctor on April 20 and my pulse was 102, I was feeling fine. Went back to the doctor on April 28 because I was having headaches and my hands were tremoring slightly. No anxiety, heart palps, panic attacks, etc. My pulse was 112 but I didn't know it or feel it. > > So I decided to back down to 4 grains. That helped some but I am still having the hand tremors and my pulse will be anywhere from 96 down to normal of 82. Usually the normal is at night before bed. It was 94 this morning before getting out of bed. I have gone a day or two without any Armour with little effect on my pulse. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2004 Report Share Posted May 16, 2004 Average normal pulse is at or around 72, though an 80 might be normal for some people. The pulse naturally goes up with fright, etc...but shouldn't always be hanging out above 80 or so. A chronic pulse of around or below 60-65 is also too slow and can cause palpitations as much as a high rapid pulse can because below 60, the heart is not getting enough oxygen in to redistribute to the body (the circle of life). Normal BP is becoming some exaggerated issue in the medical field. They're trying to tell us to get it down to around 120 or so over what?---60 to 70 or so? But I NEVER feel good with a low output of blood from the heart (upper figure--systolic). In my age range (50s), we're probably doing good to keep it down to around 130 over 70-80. Your lower figure (diastolic) should never consistently run up to 90 or over, or you're getting too much pressure on the inner walls of your blood vessels, after ejection of blood from the heart valves. Again, a too-high systolic represents an awful lot of muscular work by the heart to " spit out " the blood. I feel horrible on standing with a systolic in the range of 110-120 because my nervous system has lost that ability to contract the blood vessels in the lower part of the body on standing, so that the blood can be pushed up to the upper regions of the body. Many of the people on these boards are saying that this is an adrenal exhaustion problem. I'm just giving you my example, in case you have any of these issues. Re: Re: question Thanks Janie. I think I will try to stay off it for a couple of days and then stay at a fairly low dose for several more. My T4 has always tested pretty square in the middle but T3 has always been over the top. I am wondering if some of the T3 isn't reverse T3. What is a good pulse, low 80's? How about bp? Deborah Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.