I don't post very often but read this board daily and try to help when I can. I'm facing new autoimmune issues and would appreciate any feed back.
First, a little background. I was diagnosed 2 years ago with MC-CC. After coming upon this forum, I immediately eliminated gluten from my diet and did see some positive results regarding frequency of bm's, bloating, gas, etc. Last year, I did panels A&C through Enterolab. IGA score for gluten was around 5 but everything else scored a 1. Still don't know if I have an IGA deficiency but the serum IGA was normal. I seemed to be slowly crawling out of the MC abyss but never reached remission. Then last April, my thyroid started going haywire! From extreme hypo to extreme hyper. My GP had me cut back on thyroid meds to only a fraction of the dose I was taking but the heart palpitations I had we're intolerable! I ended up going off my levothyroxine completely for 2 months then had another blood draw and met with my GP. I was buried into hypo territory again so this time the doctor put me on Armour (30mg) and wanted me to follow up with an endo as he was pretty sure I had Hashimoto's. after 2 months i met with the endo doctor and she wanted me to start another drug called Tirosint, and drew blood to see where I was at. The Armour had helped and I didn't seem to have any negative reaction to this drug but it just seemed like I wasn't taking enough. This Tirosent is supposed to be hypoallergenic, however it only contains T4. Anyhow, throughout all of this Thyroid madness I could no longer function at work. I won't go into all the details but suffice to say I no longer am employed. It was my choice to leave and I did leave on very good terms.
I received the results of my blood test yesterday and am now concerned more than ever.
The results were :
TSH - 5.88
FT4 - .88
FT3 - 3.6
Anti TPO - 4243.6. No, this is not a mistype!
Thyroglobulin Ab - 15
Sometimes I feel like I'm completely falling apart and dying a slow death. I've been home now for almost three months and feeling like I'm free falling into the black hole of depression. I always get up in the morning with some goal to accomplish as sitting around doing nothing makes me feel worse emotionally, but around noon I find I'm finished for the day. Too tired, joints hurt too much and always feeling emotionally drained. I've reluctantly started this new medication but am fearful that things are going to get worse as I am not taking any T3 and due to the high antibodies thinking my thyroid wont be converting the amounts I need. I am supposed to have another blood draw in 6 weeks to see where I am at but with numbers as they are I'm afraid I am not on the correct course of treatment. I would appreciate any feedback this family can give. I've even thought about going back to my GP and ask him to prescribe LDN therapy as I have read of many positive results with this drug.
Thanks for listening to my ramblings,
Linda
Downward Spiral
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Hi Linda,
Yep, that's a high antibody level, so you definitely have autoimmune thyroid disease. I'm sorry you're having so many thyroid problems, which of course cause secondary problems in many parts of the body.
This is just my opinion, but of course it's supported by thyroid authorities who are aware that most doctors don't know how to properly treat thyroid issues that are anything more than very simple, straightforward hypo or hyper conditions. Based on your current results, you probably need to be taking more Armour (but not if you are having heart palpitations, of course). 30 mg is a minimum dose, and virtually anyone on the street can take that dose without any significant effects, regardless of whether or not they might be hypothyroid.
Most doctors will argue that your TSH result is not a problem, but they are wrong, because anyone who is being treated for hypothyroidism should be treated by a different range of "normal" values than someone who does not have thyroid issues. "Normal" ranges are only valid for people who have normal thyroid function, and they specifically do not apply to someone who is being treated for hypothyroidism. (Again, that's my opinion, and it's not the opinion of most medical professionals). If I were in your situation, I would try to convince my doctor to increase my Armour dosage until either my Free T4 was mid-range, or my TSH was below 1.0, and in case of a controversy, the Free T4 should take priority.
Obviously the foregoing information would not apply if your thyroid flips into hyper mode, it only applies to hypo mode.
We have at least one or two other members whose thyroid is/was prone to alternating between hyper and hypo mode, and they also have had a very tough time dealing with the problem. One of the problems is that doctors don't know what to do, and they are way too slow — that is to say, they're not responsive enough to be able to deal with the problem in real time — they're always trying to play catchup, and they don't seem to do a very good job of that.
If you should feel the need for additional natural desicated thyroid (NDT), as far as I'm aware, Armour is available by prescription only, but you can buy other forms of NDT on Amazon, and I can assure you that the one I tried worked just as well as Armour, as far as I could tell. I'm not recommending this, because self-treating requires becoming qualified to judge your response and observe certain precautions, but it's not rocket science, and at one time, virtually all doctors knew how to regulate thyroid supplements without having to rely on TSH test results. IMO, the adoption of the TSH test for determining thyroid status was one of the worst things to ever happen to patients who have thyroid issues, because it allowed doctors to dumb down and stop thinking about how to actually treat thyroid problems.
I hope that your thyroid settles down, and stabilizes, so that you can treat it with a consistent dose.
Tex
Yep, that's a high antibody level, so you definitely have autoimmune thyroid disease. I'm sorry you're having so many thyroid problems, which of course cause secondary problems in many parts of the body.
This is just my opinion, but of course it's supported by thyroid authorities who are aware that most doctors don't know how to properly treat thyroid issues that are anything more than very simple, straightforward hypo or hyper conditions. Based on your current results, you probably need to be taking more Armour (but not if you are having heart palpitations, of course). 30 mg is a minimum dose, and virtually anyone on the street can take that dose without any significant effects, regardless of whether or not they might be hypothyroid.
Most doctors will argue that your TSH result is not a problem, but they are wrong, because anyone who is being treated for hypothyroidism should be treated by a different range of "normal" values than someone who does not have thyroid issues. "Normal" ranges are only valid for people who have normal thyroid function, and they specifically do not apply to someone who is being treated for hypothyroidism. (Again, that's my opinion, and it's not the opinion of most medical professionals). If I were in your situation, I would try to convince my doctor to increase my Armour dosage until either my Free T4 was mid-range, or my TSH was below 1.0, and in case of a controversy, the Free T4 should take priority.
Obviously the foregoing information would not apply if your thyroid flips into hyper mode, it only applies to hypo mode.
We have at least one or two other members whose thyroid is/was prone to alternating between hyper and hypo mode, and they also have had a very tough time dealing with the problem. One of the problems is that doctors don't know what to do, and they are way too slow — that is to say, they're not responsive enough to be able to deal with the problem in real time — they're always trying to play catchup, and they don't seem to do a very good job of that.
If you should feel the need for additional natural desicated thyroid (NDT), as far as I'm aware, Armour is available by prescription only, but you can buy other forms of NDT on Amazon, and I can assure you that the one I tried worked just as well as Armour, as far as I could tell. I'm not recommending this, because self-treating requires becoming qualified to judge your response and observe certain precautions, but it's not rocket science, and at one time, virtually all doctors knew how to regulate thyroid supplements without having to rely on TSH test results. IMO, the adoption of the TSH test for determining thyroid status was one of the worst things to ever happen to patients who have thyroid issues, because it allowed doctors to dumb down and stop thinking about how to actually treat thyroid problems.
I hope that your thyroid settles down, and stabilizes, so that you can treat it with a consistent dose.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I have a full prescription of Armour along with 2 remaining refills. I really think I was improving on Armour just didn't have the dosage right. I had never been to an endo doc before and am preparing a list of questions regarding her methodology of treating this disease. If she goes by labs alone, I think I will probably say thank you for your time and have a nice day and search for another. That was a positive when my GP was treating my hypothyroid. He adjusted dosage to my symptoms. He just never ordered complete labs to diagnose me correctly. So many of my symptoms now make sense with a Hashi diagnosis. I'm now wondering what came first, the cc or thyroid problem. One observation I have had is when I flipped from hypo to hyper, I had 3 wonderful days of Norman visiting me. Sadly, that was out of the past 2 years. I have hope that if I can get my levels where they should be, he will come and visit me again. Hashimotos induced microscopic colitis. Still wondering if anyone has tried low dose Naltrexone. I am quite worried with my anti TPO numbers being so high, what can I do to lower this number.
Thanks for your reply Tex, as always, your insight is welcome and very helpful.
Linda
Thanks for your reply Tex, as always, your insight is welcome and very helpful.
Linda
You poor thing!
Your Enterolab results are quite "fishy". They sound like mine. All my antibody levels were tested and it turned out that I am IgA deficient and also low on two of my IgGs. When i asked what this meant for my health, the doctor said that it usually shows up in one of two ways. "You either will get many upper respiratory infections that get more and more difficult to treat, OR you will get autoimmune conditions". I am currently on my third. The hypothyroid was the first, autoimmune vaginitis the second, and now MC.
I hope you get the help you need to straighten out your thyroid. I also believe that I am not being treated correctly for mine, but it's a work in progress and I certainly don't feel as poorly as you do.
All I can say, is keep pushing until you get a doctor who can really help you
Good luck
Leah
Your Enterolab results are quite "fishy". They sound like mine. All my antibody levels were tested and it turned out that I am IgA deficient and also low on two of my IgGs. When i asked what this meant for my health, the doctor said that it usually shows up in one of two ways. "You either will get many upper respiratory infections that get more and more difficult to treat, OR you will get autoimmune conditions". I am currently on my third. The hypothyroid was the first, autoimmune vaginitis the second, and now MC.
I hope you get the help you need to straighten out your thyroid. I also believe that I am not being treated correctly for mine, but it's a work in progress and I certainly don't feel as poorly as you do.
All I can say, is keep pushing until you get a doctor who can really help you
Good luck
Leah
Thanks for the kind words Leah. I have always been a positive person (hey, my glass is always half full) but this afternoon I had myself a full fledged pity party. Everyone here was at work so there were no witnesses. I know I'm depressed but I don't want to add another med that will do nothing to fix the root of the problems. It's funny you mentioned upper respiratory problems as there was a period of time that I would get severe infections every year. Not sure why but they pretty much stopped 5 years ago. I'm pretty sure I also have RA and will be seeing a Rhumatologist eventually but I have to take this one treatment at a time as one of the problems I have had in the past is introducing multiple new meds and not knowing which caused a flare of the colitis. I think my mom had your route of AI diseases including the vaginitis but was never diagnosed correctly. She sure suffered with it...... You certainly have my sympathies there! Out of curiosity Leah, what kind of doctor did you go to for the Iga issues?
Linda,
According to an informal poll of members here, we are approximately times as likely to have thyroid problems as someone in the general population. That's obviously an extremely high correlation.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=7783
Regarding low dose naltrexone, the threads at the links below describe one members experiences with that treatment. Note that altogether these threads span a total period of almost a year (about 10 months).
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
Tex
According to an informal poll of members here, we are approximately times as likely to have thyroid problems as someone in the general population. That's obviously an extremely high correlation.
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=7783
Regarding low dose naltrexone, the threads at the links below describe one members experiences with that treatment. Note that altogether these threads span a total period of almost a year (about 10 months).
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
http://www.perskyfarms.com/phpBB2/viewt ... naltrexone
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.