Adrenal support is maintaining remission, Cortef

[Beth]

Oh, and fish oil.

[tex]

Reggie,

I suspect that the earlier opinion about most people receiving diagnoses in summer, was based on the fact that it used to take virtually forever to get a valid diagnosis for MC. A few years ago, a lot of GI docs didn't usually cut to the chase, and take biopsy samples, during a colonoscopy.

In my own case, for example, my onset was slow. I really don't remember when I first began having occasional episodes of bloating, gas, D, etc., but I started noticing a pattern, in the fall of the year, and by the end of the year, I was getting sick on a fairly regular basis, with the added symptoms of flu-like aches and pains, RA, and brain fog. The uncontrollable D started about April, and when it wouldn't stop, after a couple of weeks of trying PB, and a few other things, I finally broke down and went to a doctor. By the time they finished testing me, it was late June, and since the GI finished the test series with a colonoscopy, and didn't see anythig wrong, (no biopsies), he pronounced me fit as a fiddle, and turned me loose on my own recognizance, so to speak. It took me until mid-August, of the following year, before I finally began to figure out what was actually going on, and made the gluten connection.

Anyway, the point is, if he had come up with a diagnosis, (about six years ago), it would have been during the summer, even though my symptoms were demanding attention back in the late-winter, early-spring, timeframe. I suspect that I'm a celiac, (though they failed to test me for that, too), so it's never been confirmed, and it's way too late to confirm at this point. (I'm not inclined to take a gluten challenge - being that sick for roughly three years, was enough to satisfy me). Enterolab did confirm small intestinal damage, presumably from gluten, but this was three years after I had gone GF.

The average length of time, between the onset of symptoms, and a valid celiac diagnosis, is still considered to be over 11 years in this country. That's a pathetic record, and hopefully it will soon be improved, as more and more GI docs become aware of the magnitude of the problem of food intolerances in this country.

I agree that there seems to be a problem with symptoms being more likely to be present in, or following, the months with less sunshine exposure. However, there are a lot of members here, from Texas, (and various other sunny states), who shouldn't be having vitamin D deficiencies, because we normally still have a lot of good sunshine exposure in the wintertime, and the temps are often high enough to allow us to be out and about, much of the time.

Tex

[starfire]

Well, my diagnosis was also in summer (July), but I know (from hindsight) that my first BIG "spell" happened in April. I have no idea how long I might have been having milder symptoms before that. If something doesn't bother me too much, I ignore it.

Anyway, I know I had it in April although the diagnosis didn't happen until July.

Love, Shirley

[Reggie]

OK, Shirley and Wayne, if you put it that way!

Mine started in mid March, but my colonoscopy was in July also. I guess I do fit right in.

Note: my first blood test is back, and my TSH doesn't match the TSH from the saliva test at all. I'm just holding my breath until the cortisol test comes back. Otherwise, we have to bring down that BS flag and find a new emoticon, like egg on face.

[Reggie]

OMG, just got the cortisol blood test result from this morning's 7am draw. It's normal, 21.2 on a scale of 6-25 for 7-9am draws. In November it was 18.2 at 9am, so that makes sense.

The saliva TSH was over 600, off the charts. The blood TSH was .68 on a scale of .3-5.5.

Bob, help me out here. Do other people find this variance between blood and saliva tests?? My 7am saliva was 8 on a scale of 13-24, clearly depressed. I think I'll send an email to the doctor on the canary club site and see what he says.

I have just confirmed my doctor's opinion that I should stay off the internet.

[bobh]

Bob, help me out here. Do other people find this variance between blood and saliva tests?? My 7am saliva was 8 on a scale of 13-24, clearly depressed. I think I'll send an email to the doctor on the canary club site and see what he says.

I have no idea why there is a difference like that! And I can't really explain it. Good idea to query the labs.

If I had 2 completely different results like that, I would have to go with the one that matched how I was feeling. It's odd, because if you look at the earlier post that had images of the graphs, the only normal zone was around noon, when your wife said the "real" Reggie appeared.

This is a puzzle, and I really don't know what to tell you. If money was no object, I would re-do a saliva adrenal test THE SAME DAY as a blood one, and see if they aren't more consistent.

Per that last link that Mike provided, that is yet another opinion that the saliva tests are the way to go for Cortisol testing. If you have more faith in the blood one, then I guess you have to go with that.

I have blown tens of thousands on health issues and have no insurance, but if that happened to me I would personally order new kits, and I would personally send one to ZRT as well as Diagnostechs, and a blood draw. If it's within $500, I would gamble that to get to the bottom of it.

That is just really strange - like the blood test was from a different person. And the TSH too - what a difference.

my doctor's opinion that I should stay off the internet.

All I can say is that my Cortisol labs were stage 6 (terrible) and consistent with my symptoms, and the Cortef is making me feel more normal. I would stand on the side of the saliva lab, and query the accuracy of the blood work. (in fact, personally I wouldn't have even done blood cortisol labs, but I know your MD ordered it). This is a puzzle.

[bobh]

The saliva TSH was over 600, off the charts. The blood TSH was .68 on a scale of .3-5.5.

That is strange - again as I said above, I would be more interested in your Free T3 lab result than TSH, which is a pituitary hormone. Some MD's are very, very fixated on TSH as the gold standard in deciding if thyroid meds are needed, and I understand their theory. But personally I don't agree with it, because it never helped me.

My TSH was always OK, but my FT3 wasn't in the upper 1/3. I am feeling a lot better on the Armours. In fact, I was driving last night on a long drive, and started to feel like I was going numb, and sort of "shutting down". it is a thing they call "Air Hunger" http://www.stopthethyroidmadness.com/co ... php?t=6313

And the remedy is to take about 15 mg of Armours, see if you feel better within 15 minutes, if not, do it again. It worked by the 2nd dose, and I came back to normal. I wish I had that remedy when I was working Huricane Katrina, I had long drives to inspect houses, driving back at night to the hotel I kept feeling like the life was draining out of me.

That same thread explains why the adrenals can be taxed as you treat the thyroid. BTW, Val who is the moderator has lots of typo's because of a diabetes conditon she has had for decades.

Anyway, for me, I have grown to know my symptoms. And I can feel the under and over values on the adrenal and thyroid hormones. I have zero doubt about it, and I guess I was lucky, my labs matched my symptoms.

Yours do too, unless you flip the coin in favor of the blood values.

Then again, you have really only been in rough shape since April... I really can't answer for those blood values. Maybe they switched the samples... The saliva ones match your symptoms.

[Reggie]

I'm going to see how I feel in the mornings for a few more days. I do think that I felt a lot better than usual this morning. I just don't know why it would vary like that. I don't think there is much use testing when I feel good.

I don't know how to get blood tests except from my doc, and since insurance is paying for those, I don't think he's going to offer any more.

It still may be worth it to go the Fatigue and Fibro Center, where they may be more interested in figuring it out.

I'm guessing that I'm not the first person who double checked their saliva results, and if the saliva was totally bogus, you'd have heard about it before now.

It's just baffling.

[bobh]

I do think that I felt a lot better than usual this morning. I just don't know why it would vary like that. I don't think there is much use testing when I feel good.

How did you feel when you submitted your blood for the lab?
How did you feel when you did the saliva samples?

Dr Peatfield is still alive and practicing in England, a couple of his patients are on that thyroid forum. Peatfield has said that people who have stressful jobs should not provide the saliva samples during a relaxing weekend, as it doesn't reflect how they are most of the time. From that I derive that there can be day to day variances, and so it is possible to have labs be different on different days.

I would love to see you simply get better, without meds. That didn't happen for me.

[Reggie]

The doctor ordered total T3 instead of free. It came back 130 (70-170).

I felt horrible when I did saliva, and I'm noticeably better starting 2 days before I did blood. Reading the thyroid thread you linked about symptoms, I realize my vision is also clearer now.

So what if I had an autoimmune attack that started in mid January with the D relapse, and then moved a couple weeks later to either the brain or the pituitary, and I stopped making ACTH to tell the HPA axis to make cortisol.

I'm tempted to cut back on the cholestyramine and see if the D has backed off. What if the cholestyramine cleaned up my bile. What if it was toxic and caused the whole thing.

Or maybe it's just because I stopped taking my daily multi vitamin this week.
Or what if I knew what I was talking about? I wish I had your ability to research. What I make up sounds like bad science fiction.

Oh, I also started Neurontin 6 days ago and have ramped up to 900/day. I doubt if that's relevant.

[bobh]

The doctor ordered total T3 instead of free.

That is useless, because it includes the T3 that is "bound" with proteins etc and cannot be used to fuel the cells, fuel the metabolism. You have to check for the "frees" and whenever I do it, it's not on the form, and has to be written in. Go figure.

I felt horrible when I did saliva, and I'm noticeably better starting 2 days before I did blood.

Sounds like the labs measured what was happening that day.

I truly hope you can recover. A lot of people do - it isn't normal to be stuck in a rut of chronic fatigue.

But for those who do, there is "snake oil" on one side of the fence, and the body's metabolism engine on the other. It runs on Cortisol and FT3, either supplied by your body, or a bottle of pills (like me).

[mle_ii]

Saw a dr today, she brought up cortef even befoe I did. I'm going to get other testing done as well. Seems like I might be on the path to getting better. Did a quick urine test today, no sugar, or blood, but trace amounts of protein. Not good, but not terrible.

[bobh]

Saw a dr today, she brought up cortef even befoe I did. I'm going to get other testing done as well.

Nice, that is great.

Folks, keep in mind my adrenals were flatlining. Some people have looked at my labs and said they are borderline Addison's (no cortisol). And I may be on Cortef for life (better than the alternative). I am happy to do that. I have a little container with 4 compartments, I put my doses of Cortef and Armours every morning, and put there what my body needs, as it wasn't stepping up to the plate before. I was barely metabolizing, and that manifests in fatigue, anxiety, depression, cold extemities, etc, etc .

For you folks that may not be that bad off, keep in mind that you may be able to "get off the train" once you have given your adrenals a chance to rest up. If you explore the references noted previously, one can support the adrenals, then introduce Armours (assumng your FT3 is not in the upper 1/3) and work up to a replacement dose (3 grains, some people need more, like 4 grains). Hold that for several months, confirm the FT3 is in the upper 1/3 of normal per lab tests, then you can GRADUALLY wean off the Cortef and watch for symptoms.

Dr Peatfield says it best, as far as weaning off Cortef and no harm done:

Firstly, the history of the symptoms, the postural hypotension, the fainting attacks, the digestive upsets and other problems I mentioned in the last chapter, along with possible pointers from a blood test, are likely to make low adrenal reserve a strong possibility. Secondly, if there is any doubt, initial support must be given since there are real problems if it is needed and not given. Thirdly, prescribed in the way I am going to discuss in a few moments, there is no risk, since the amount of adrenal support is physiological (explained below). This means even if it isn't necessary, no damage is done, no risks are taken, and it can be withdrawn whenever thought appropriate.

Link: http://featherstone.bravehost.com/thyro ... renal.html

[Reggie]

Bob, I appreciate all your help. I expect my symptoms will exentually return, and I'll be back to my doc for blood tests for cortisol at 7am, and FREE t3 and t4. The links you provide are right on target for me.
Reggie

[bobh]

blood tests for cortisol at 7am

Well, I suppose that would be interesting in terms of trying to track down the differences - especially if you were submitting a saliva test the same day or something.

For what it's worth, the consensus of the 1,552 registered uses on the "thyroid madness" site is that the blood test for cortisol is useless. It doesn't show the rhythm through the day, and serves to leave most people with adrenal insufficiency undetected. I have no insurance, and would not personally spend the money in it, I'd put 1/2 a tank of gas in my van instead.

and FREE t3 and t4

Great idea, I do trust blood-work for FT3 (active thyroid hormone).
The FT4 is not as important, that is the "storage" version, you want it to be in the middle of normal. But I agree, I would check them both while I was making a trip into town.

I hope that you have pulled out of the nose-dive, and agree that it is totally possible. If you find yourself circling the drain anytime soon, you may want to revisit some of this stuff.

Note: this topic sort of continues on another subsequent thread: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=5841
======== Update of 2012, May 19 ===========>
Adrenal support alone did not maintain remission. Several months after my 2007 remission I was "as bad as ever" and decided to go back to Entocort (which handled it completely). I have been using Entocort "as needed" for about 5 or 6 years now with no known side effects or problems. I am thankful to have a remedy that works for me.