Medical Forum / Diseases and Disorders / Lupus / October 2003
Mair update
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Mair - 26 Oct 2003 00:21 GMT Hi all,
I am so tired, so just the basics. I got my lab results in the mail today. I don't see anything indicative of CNS lupus (but probably wouldn't recognize it if it were there), but I sure could see raging evidence of thyroid disease and inflammation.
The things I don't understand are C3 and C-reactive protein. What are those tests mean when they are abnormal. Kcat help?
Here, Kcat!
Mary
J - 26 Oct 2003 00:57 GMT > I am so tired, so just the basics. > I got my lab results in the mail today. I don't see anything indicative of > CNS lupus (but probably wouldn't recognize it if it were there), I don't think that's seen on bloodwork, maybe imaging or ruling other things out, like reactions to medications.
> but I sure > could see raging evidence of thyroid disease and inflammation. > > The things I don't understand are C3 and C-reactive protein. What are those > tests mean when they are abnormal. C-reactive protein is a test that measures the concentration of a protein in serum that indicates acute inflammation http://www.nlm.nih.gov/medlineplus/ency/article/003356.htm
This is a blood test that measures one component of the complement cascade. Complement is a group of blood proteins that cause immune responses and inflammation. The complement cascade is a series of reactions that take place in the blood. There are 9 major complement components, labeled C1 through C9. This test measures C3. http://www.nlm.nih.gov/medlineplus/ency/article/003539.htm
HTH J
Mair - 26 Oct 2003 01:43 GMT Yah, J, now I remember something. C3 and C4 are related to lupus. My result was actually slightly elevated. I read the link you have listed... I will probably have a dream tonight that I have cancer (actually used to dream about that a lot, so nothing new!)... or perhaps I'm just too tired to dream about anything. Just sit here with Pigmet watching movies. We're havin a John Cusack film festival so no fear of running out of movies. I wish Pigmet had a drivers license. He could go get the movies "hisself."
thanks for your help, J
Mair
> > I am so tired, so just the basics. > > I got my lab results in the mail today. I don't see anything indicative of [quoted text clipped - 22 lines] > HTH > J Sharon - 26 Oct 2003 02:59 GMT > Hi all, > [quoted text clipped - 9 lines] > > Mary CRP (C-Reactive Protein) is like ESR, when it's elevated, you have non-specific inflammation. C3 is a complement:
http://health.yahoo.com/health/encyclopedia/003539/0.html
"Why is the test done Complement activity (CH50, CH100, terminal complement component, or individual complement proteins) is measured to determine if complement is involved in the development of a number of diseases. Complement activity is also measured to monitor severity of a disease or determine efficiency of treatment. For example, patients with active lupus erythematosus may have depressed levels of C3 and C4, and these component levels may be followed as a rough index of disease activity.
Patients with gram negative septicemia and shock are often depleted of C3 and components of the alternative pathway. C3 is often also depressed in fungal infections and some parasitic infections such as malaria.
Red blood cells from patients with paroxysmal nocturnal hemoglobinuria (PNH) bind more C3 than normal cells. This acquired defect is associated with chronichemolysis inside blood vessels caused by activation of the alternative pathway."
Hope you start feeling better soon!!
Hugs for you, -Sharon
 Signature "Don't make me come down there..." -God
J - 26 Oct 2003 11:50 GMT > I am so tired, so just the basics. > I got my lab results in the mail today. I don't see anything indicative of > CNS lupus (but probably wouldn't recognize it if it were there), but I sure > could see raging evidence of thyroid disease and inflammation. I sure wish I could understand this... you and Bruce mention thyroid All I can find is Graves and Thyroiditis. http://www.thyroid.ca/English/Publications.html Both easily treatable...controllable..
Now if I were to be told that during a flare, a person does not have strong enough med to control thyroiditis, then one would think that the first thing to do with a flare is increase the medication for inflammation and change the thyroid dosing.. (all planned and preapproved with the endo and/or rheumy, of course). Maybe I'm just not understanding... J
Mair - 26 Oct 2003 17:27 GMT Hi J
One would think... When I talk to my doc about what he is doing, he always has a brilliant strategy behind what he is doing. Since my previous job was to "get inside the doctor's head" (I was a medical transcriptionist), I am pretty sure what he would say according to the results.
The TSH is not elevated at all. That means my thyroid gland is putting out its stuff, even though it is inflamed. The signs of inflammation are there, but since I was feeling better, well enough to drive to San Francisco, the levels are probably falling, not rising.
Raising the level of thyroid supplement is not a simple matter in my case. I have congenital tachycardia, already worsened by an antidepressant. And I have an anxiety disorder which is also triggered by the thyroid supplement, so I have to stay on the bare minimum to do the job.
So the best thing to do is to attack the antibodies. I am taking everything the traffic will allow, (lodine, plaquenil, tramadol, and Tylenol on top of that. Other anti-inflammatory agents dont seem to be effective on me) and he doesn't want me to be on higher doses of pred. The next step is the chemotherapy, to get these buggers out of my system. I am glad that I am at least *showing* signs of disease activity. Used to be I felt as bad as I do now, and all my labs were normal. The doc just had to look at me and treat the symptoms. And he did a good job.
Mair
PS: Thyroiditis, or Hashimoto's disease qv. is the same disorder I have. It is autoimmune thyroiditis. I am not sure about Graves, or Thyroid Storm; I would have to look these up and really don't feel up to it this morning.
> > I am so tired, so just the basics. > > I got my lab results in the mail today. I don't see anything indicative of [quoted text clipped - 14 lines] > Maybe I'm just not understanding... > J J - 27 Oct 2003 15:21 GMT Hi hun, Sorr yto disagree, but I've got Hashi's also. What happens is the correct dose of levothyroxine (Synthroid or other brand), over the long term makes the thyroid euthyroid (ie non functioning and we become hypothyroid). It's not the thyroid med that makes one anxious. The (un/under-treated) thyroid causes the tachycardia. Sure, you may have an underlying condition but the thyroid makes it worse.
http://www.thyroid.ca/Articles/EngE6A.html Increased levels of thyroxine released from the thyroid gland stimulate the heart to beat more quickly and more strongly. Initially this may produce a fast heart rate which is called a tachycardia. Thyroid disease may directly effect the heart especially whenever the thyroid gland is overactive. This may produce symptoms of palpitations, heart pain, or heart failure. Similar symptoms may occur with an underactive thyroid if it is treated too rapidly with thyroid replacement therapy. Symptoms of heart disease are much more likely to occur in patients who have underlying heart disease from another cause. Permanent changes in the heart are unusual in patients with normal healthy hearts, unless the thyroid disease is particularly severe and left untreated for very long periods of time.
So Lodine is an anti-inflammatory, (no warnings about thyroid/endocrine) Tramadol Pain med - (Ultram/Ultracet)..it can cause anxiety.. (no warnings about thyroid/endocrine) Plaquenil hydroxychloroquine sulfate (nervousness is mentioned) - (no warnings about thyroid/endocrine) Levothyroxine - thyroid hormone replacement - no warnings about anxiety there Where' m I getting this from...my brain and http://www.rxlist.com/cgi/generic/levothy_wcp.htm
Which leaves : if you are taking your thyroid med , every day and at the same time every day, a possible conflict between your "depression" (or is that manic) medication AND/OR simply an erratic thyroid.
The way it was explained to me by my endocrinologist, is if the thyroid is not kept under control by thyroid medications, it shoots out various hormones that affect the rest of the body and the person's wellbeing. So if your anti-inflammatory combined with your thyroid med is not controlling the thyroid, I'd be talking to an endocrinologst about either removing the goitre (or the whole thyroid gland) and then onto a steady dose of thyroid replacement for life.
Hugs J - not a doctor
> Hi J > [quoted text clipped - 28 lines] > It is autoimmune thyroiditis. I am not sure about Graves, or Thyroid Storm; > I would have to look these up and really don't feel up to it this morning. Mair - 27 Oct 2003 21:54 GMT Are you saying that the thyroid gland quits working when I take my thyroid supplement, like the adrenals do with prednisone? I have always been rather confused about the thyroid, all I know is my doc says it takes about three weeks to see the change?
Wow, you said some pretty heavy stuff in this post... remove my thyroid gland? I don't even think it's enlarged.
Anyway, thanks for the info.
Mair
> Hi hun, > Sorr yto disagree, but I've got Hashi's also. [quoted text clipped - 74 lines] > > It is autoimmune thyroiditis. I am not sure about Graves, or Thyroid Storm; > > I would have to look these up and really don't feel up to it this morning. BJ - 27 Oct 2003 22:34 GMT Hi Mary, I agree with J's point of view on this. The thyroid gland can be removed or killed by radiation therapy (prefered method now, I believe) if you are hyper thyroid. (Grave's disease) The thyroid hormone level is then kept regulated with thyroid replacement therapy. The hormone is also given if you are hypothyroid. The thyroid med will inhibit pituitary TSH secretion, so the TSH will not go abnormally high. A high TSH is indication that the pituitary is trying to increase the amount of thyroid hormone in the blood because the thyroid gland is not functioning up to par. BJ-Sk. Canada
> Are you saying that the thyroid gland quits working when I take my thyroid > supplement, like the adrenals do with prednisone? I have always been rather [quoted text clipped - 124 lines] > > > I would have to look these up and really don't feel up to it this > morning. J - 28 Oct 2003 00:57 GMT > Are you saying that the thyroid gland quits working when I take my thyroid > supplement, Yes, over a period of time. That's the whole purpose of taking thyroid hormone, to stop the thyroid from telling the pituitary to release thyroid hormones, because the thyroid (in Hashi's ) is malfunctionnig and acting erratically (ie relieasing hormones erractically), so the thyroid replacement turns it off, and replaces the necessary thyroid hormones stable planned level in the blood stream.
> like the adrenals do with prednisone? I have always been rather > confused about the thyroid, all I know is my doc says it takes about three > weeks to see the change? Upon diagnosis, it took me about a year on thyroid replacement before I had fully recovered from the chaos of Hashi's. If you mean a change in the dose of thyroid medication, yes, about 3 or 4 weeks to notice if there's any changes. Most doctors recheck every 3 months. (ie do not make changes of medication changes at earlier intervals.
I've been on thyroid replacement for over 30 years. I asked the endo what would happen if I quit, and he said I'd get very sick, because now my thyroid is euthyroid and atropied. (use it or lose it)..but it wasn't working right, so I wanted to lose it. It's there but probably shrivelled from disuse.
> Wow, you said some pretty heavy stuff in this post... remove my thyroid > gland? I don't even think it's enlarged. Enlarged or not, if it's erratic and can't be properly controlled with replacement thyroid hormone, it's best to get rid of it surgically, I think. (or maybe radiation therapy to nuke it, I don't know if they do that for Hashi's or not).
http://medlib.med.utah.edu/WebPath/ENDOHTML/ENDO016.html <picture alert> This symmetrically small thyroid gland demonstrates atrophy. This patient was hypothyroid. This is the end result of Hashimoto's thyroiditis. Initially, the thyroid is enlarged and there may be transient hyperthyroidism, followed by a euthyroid state and then hypothyroidism with eventual atrophy years later. Hashimoto's thyroiditis results from abnormal T cell activation and subsequent B cell stimulation to secrete a variety of autoantibodies.
To be clear, with most of us, if the medication controls and stops the thyroid was acting crazy, then we don't need surgery. It would only IMO be for someone whose thyroid cannot be controlled by the levothyroxine. and that's my understanding of what's happening with you. Hugs J
NW - 26 Oct 2003 13:22 GMT CRP is a very common way of measuring inflammation. It changes quicker than the sed rate. Don't know much about C3, since that isn't monitored in me. It has something to do with immune stuff. Here's a CRP link:
http://uwcme.org/courses/rheumatology/rheumlab/crp.html
Nina
> Hi all, > [quoted text clipped - 9 lines] > > Mary Mair - 26 Oct 2003 17:33 GMT Hi Nina,
That sure is a great CRP link. Told me everything I wanted to know. Never had CRP or C3 or C4 out of line before. I am glad to say that my joints are doing well through all of this. Miraculously, I gained use of my thumbs, after 10 years of such painful arthralgia that I just could not use my thumbs.
Take a moment to appreciate your thumbs, folks. Not having use of them really sucks!
Mair
> CRP is a very common way of measuring inflammation. It changes quicker than the > sed rate. Don't know much about C3, since that isn't monitored in me. It has [quoted text clipped - 17 lines] > > > > Mary Marg Watson - 26 Oct 2003 18:50 GMT Hi Mair!
You know what I'm curious about? Do you think it will ever be possible to check one's Thyroid function like diabetics check their blood sugar?
I can see that happening in the future. Having an implanted pump, much like diabetics have now.
Maggie: Putting faces on her thumbs & giving dogs a puppet show at Mair's request. : )
Hugs, Maggie
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