What could be wrong with me?

Miscellaneous and Personal Stuff I Must Share
1

I’ve been to several doctors and had several tests done.
Everything showed up normal with an exception of iron defiency anemia on one blood test (out of 4 or 5 blood tests w/in the last year and a half) and minor sinusitis on one CT scan (out of 3 CT scans). I am wondering if anyone is having similar problems or has had them.

In January 2002 are started having mild stinging pain in my lower right pelvic area. I was sent to the ER because my doc thought that I may have had appendicitis. The tests came out negative.
I had the mild stinging pain in that area on and off until April 2002.

In February 2002 I cought a pretty bad cold, not much coughing, but with severe sinus problems. I had a fever above 101 for about 2 or 3 days straight. The sinusitis eventually got better, but it never went away, they sinus headache would return whenever I got cold. Speaking of cold, since I had that sinus infection i’ve been very sensitive to cold.

In March I found a swollen lymph node (about 3 cm) in my submental (under the chin) area, it wasn’t sore, that concerned me.

In April 2002 I went to the gyno to get some tests done, to see if any female problems were causing my lower right pelvic pain. Nothing showed up on any tests, including the ultrasound. The gyno said the pain may be caused by undetected endometriosis or scar tissue.

In May 2002 i went to an ENT for sinus trouble and that swollen lymph node. He assumed it was allergies and prescribed me some meds. About the swollen lymph node, he said he wasn’t that concerned because of the characteristic (movable and <inch).

My sinusitis got pretty bad again around July 2002 despite the meds, however this time there was no fever. I notice two more swollen lymphodes in the same area (about 3 cm and 1.5 cm) these were sore, but never went down. My sinus problems went away in late july. However all three lymph nodes were still swollen.

Meanwhile with all of the sinus trouble and stress from unrelated events, I lost a lot of my appetite. I went from 105 lbs. to 95 lbs and i’m 5’3’’. I eventually regained my appetite about 80 to 90%. However, I am having lots of trouble gaining the weight back.

September 2002, I started losing my hair and have not stopped.
I do notice it does slow up a tad after eating a lot of meat. I started having joint pain around the same time. I would itch on occasion, but nothing severe at all. In fact if I would ignore it, it would go away.

In December 2002, I started getting weak when I have my period.

In Feburary 2003, I got another bad cold again, this time I had a bad cough that lasted a little over two weeks. I found another swollen node about 3 cm in both armpits. Since then whenever i get cold I get the coughing sensation or the urge to clear my throat, yet nothing severe, I don’t get coughing spells or anything.

Despite all of this, I am living a normal life, I am not on my death bed or anything. But I am very concerned about these problems. I did a lot of research on my symptoms, hodgkin’s disease is what scares me the most, however my doctors do not believe it is any kind of cancer because my nodes are movable and are no larger than an inch and showed up normal on the CT scans, also I don’t have fevers, night sweats, severe itching, nor any masses showed up on the chest CT scan nor my collarbone area.

What could this be?

2

There is no way you’re going to get a diagnosis here from a stranger on a message board.

3

This sounds real similar to what I’m going through. E-mail me and tell me if you have AIM or ICQ. Would like to chat with ya.

4

Themis, I’m certainly in no position to make a medical diagnosis, however, I can suggest that you talk to your doctor about the possibility of thyroid disease.

I have many of the same symptoms as you do (and a few more), all of which appeared gradually over time, all of which I attributed individually to other things (joint aches? – arthritis; brittle, dry hair? – been coloring it too long; sinus headaches? – deviated septum. The list goes on), just like you have.

Thyroid disease is one of the most underdiagnosed diseases out there for exactly that reason – all the symptoms mirror other (often minor) ailments and the thyroid as a common tie-in is often overlooked.

Your weight loss and inability to gain it back, hair loss and joint pain could mean you are hyperthyroid. However, some of the symptoms you have are also indicative of hypothyroidism, such as the sensitivity to cold (as are the hair loss and joint pain, as well). The lumps you feel in your throat area could by thyroid nodules. There’s a checklist here for hyperthyroidism which includes:

[quote]
[ul] [li]I am losing weight but my appetite has increased[/li][li]My muscles feel weak, particularly the upper arms and thighs[/li][li]My hair is coarse and dry, breaking, brittle, falling out [/li][li]I have pains, aches in joints, hands and feet [/ul] **I also have the following additional symptoms, which have been reported more frequently in people with hyperthyroidism: ** [ul]My hair is falling out[/li][li]I am getting more frequent infections, that last longer[/li][li]I have strange feelings in neck or throat[/li][li]I get recurrent sinus infections[/ul] [/li][/quote]
I’d recommend seeing an endocrinologist instead of an ENT or OB-GYN (been there/done that – I’m now seeing a specialist, myself). The American Thyroid Association has a search engine on their website to help you locate a specialist in your area (even if you live in any of about 50 other countries outside the U.S.!): http://www.thyroid.org/patients/specialists.php3. Ask for a full thyroid panel, including TSH, Free T3, Free T4, total T3 and T4 and uptakes.

I do know exactly how you feel, suffering seemingly unrelated symptoms, not knowing what’s causing them. I sure hope your doctor(s) can figure it out and you start feeling better soon!

5

I go along with the Thyroid theory, but I think you have a second, possibly unrelated, issue with anemia. The improvement after eating meat is a dead giveaway.

You should be eating red meat at least every 2-3 days as a minimum. You might consider iron tablets as a supplement, but read the label - you also have to be careful not to overdo it with iron.

6

If you have decent insurance, ask for a 5HIAA test (serotonin level) and maybe a CgA (Chromogranin A), to rule out that wonderful little number known as carcinoid.

There are some of your symptoms that sound familiar, but because carcinoid can be anywhere in the body, and can affect almost any system, it is something to look at in any non-diagnosable “what’s wrong with me” situation.

It’s a long shot, your doc will look at you like you’re crazy and ask if you flush or if you have …whatever symptoms he thinks are appropriate to ask about…but the facts are that there are some carcinoid patients that never show many of the symptoms and some show almost none.

www.carcinoid.org www.carcinoidinfo.info

If you begin to recognize anything…ask your doctor. It’s better found early than late, and you can live with it for years and years, properly treated.

7

I believe that I had thyroid tests done, I particularly remember them doing TSH check on me. However, the results came back as normal.

Could endometriosis be a possible problem? For those who experience it, did you have similar symptoms? I heard that endometriosis, can cause chronic pelvic and pain lowered immunity and maybe even inflamatory conditions.

8

(IANAD – wild speculations based on no medical background at all.)

Inquire about Lupus as well. Just to rule it out.

The symptoms you describe are shared by lots of different things (and lupus has some more obvious and common symptoms, but it can be different for each inidvidual).

There are more obvious signs of lupus:
butterfly-shaped rash on face
sensitivity to sunlight
skin ulcers (on tongue, inside mouth or nose - painless)

But other sign of lupus can inlcude:
swollen glands
achy and/or swollen joints (arthritis-like)
hair loss (mostly from scalp)
Raynaud’s phenomenon (your fingers and toes turn pale or purple when exposed to cold)
low blood count
kidney problems
digestive problems (that may include loss of appetite, weight loss, nausea and diarrhea)
fever
fatigue

In other words, the secondary symptoms are like the symptoms of lots of other stuff. But you might want to ask your doc if it’s worth screening for it to rule it out. Likely, he/she will just say:

“That doper, Crayons, is a total idiot! Don’t listen to that moron!”

9

Themis, TSH results being “normal” is one of the big debates in the world of thyroid disease sufferers. Doctors who rely on TSH alone to determine if a patient is suffering from a thyroid condition are – IMNSHO – either not good doctors or they aren’t educated enough in the diagnosis and treatment of thyroid disorders. That’s why I suggested seeing a specialist instead of a generalist.

The ranges of “normal” vary to such a degree, and have changed so much over time, that “normal” for one individual isn’t necessarily “normal” for the next. Some people function just fine in the “5-6” range and some people don’t feel well unless their TSH is at or below 1.

(Read that whole article – it’s loaded with great information.)

And TSH alone doesn’t tell the whole story…

Again, on the list of symptoms, all of which you say you’re suffering: [ul] [li]Lump, swelling, discomfort in the neck and throat area [/li][li]Feeling extremely cold or hot [/li][li]Weight changes [/li][li]Hair loss [/li][li]muscle/joint aches and pains[/li][li]Menstrual problems [/ul] Certainly you don’t have to take my advice – I could be way off base here, seeing as how I’m not only not a doctor, but I also don’t even know you in person. However, especially if you have insurance to cover the expense, a full panel thyroid test will at least rule out thyroid disease as a possibility. From one of the links above: “[The Colorado Thyroid Disease Prevalence Study] found that 13 million Americans may be unaware of and undiagnosed for their thyroid conditions and that more widespread thyroid testing is needed.”[/li]
I do wish you the best of luck and hope you can figure out what’s causing you so much pain. It sucks to be suffering and not know why – I know!

10

And seeing Eats_Crayons’ post, I’d also like to add…

See an endocrinologist. Based on the symptoms you describe, a specialist in this field will be much more likely to correctly diagnose your condition than an ENT or an OB-Gyn would.

11

So I’m not a total moron?

Cool.

12

There’s always the possibility that you are a hypocondriac.

13

Gee, what a kind way to respond.

That’s what they thought about me…and then OOOOPS!! A rare cancer, in a very advanced stage. Oh, well, so sad, too bad, you’ll die of it eventually. Almost every female diagnosed with carcinoid went through the same judgemental crap. A lack of diagnostic ability on the part of the medical profession does NOT make the patient a hypochondriac.

The various medical professions have enough PR problems for the stupid stuff they DO, and then people come along and SAY stupid stuff as well.:dubious:

14

And there’s always the possibility that you are a jerk.

15

I’m no medical expert either but since I’ve been sick (since 1996) with a very misunderstood, misdiagnosed, etc virus/or combo of viruses or is that virii???, whenever I hear of anyone who isn’t feeling well with a variety of symptoms, I recommend you ask your doctor to investigate the possibility of Chronic Fatigue Syndrome and/or Fibromyalgia.

There are many symptoms for each of these and often if you have one illness you develop the other as well. When I was first diagnosed in 1996, I just had CFS. Since then, I’ve also developed Fibromyalgia. There are tons of symptoms that can be part of CFS including the ones you have described. I’ve researched CFS more then Fibro so that’s what I’m likely to address more specificly. By the time I got the Fibro I read up on it, but was just to overwhelmed with it all to really delve into it.

A number of doctors don’t understand CFS and will dismiss it as being “all in your head” but it’s not. There isn’t one medical test to determine it so the process is to run tests for everything else with your symptoms and if everything else is ruled out that’s what’s left. It comes in varying degrees of severity between individuals as well as different times are more difficult for the person who has it/them.

There are lots of sites on the web about them… some are more accurate then others. Like I said, it’s all very misunderstood. I’ll list some of the ones I’ve found to be fairly good. If you have any other questions, please let me know. I’ll check back here and you can email if you want.

I hope to hell this isn’t what is going on with you!!! There are times I wish I were dead rather then have this virus and today seems to be one of them. If I felt better today, I’d go into a more detailed outline addressing each of the symptoms indicated but I just can’t today. Maybe tomorrow.

Oh, I almost forgot. I’ve had doctors I’ve had to educate about this thing too. But if they can’t figure out what else is going on, I suggest you check into this.

[ul]
FIBROMYALGIA BASICS

Lists of Symptoms of CFIDS (CFS = Chronic Fatigue Syndrome; CFIDS = chronic fatigue and immune dysfunction syndrome; ME = Myalgic Encephalomyelitis ------- all the same illness)

What is ME or CFS?

Chronic Fatigue Syndrome [/ul]
My computer isn’t online yet. I’m on Rico’s and he doesn’t seem to have all the sites bookmarked I do. I’ve been looking for the good ones but can’t seem to find and more right now. Sorry

Good luck to you and take care. If you truly believe it’s something, don’t give up until you find out what it is. But as has been mentioned, sometimes people are hypocondriacs. I certainly am acussed of being one often enough.

16

I’m no medical expert either but since I’ve been sick with a very misunderstood, misdiagnosed, etc virus/or combo of viruses or is that virii???, whenever I hear of anyone who isn’t feeling well with a variety of symptoms, I recommend you ask your doctor to investigate the possibility of Chronic Fatigue Syndrome and/or Fibromyalgia.

There are many symptoms for each of these and often if you have one illness you develop the other as well. When I was first diagnosed in 1996, I just had CFS. Since then, I’ve also developed Fibromyalgia. There are tons of symptoms that can be part of CFS including the ones you have described. I’ve researched CFS more then Fibro so that’s what I’m likely to address more specificly. By the time I got the Fibro I read up on it, but was just to overwhelmed with it all to really delve into it.

A number of doctors don’t understand CFS and will dismiss it as being “all in your head” but it’s not. And I’m guessing whatever is going on with your body, it’s not in your head either. There isn’t one medical test to determine it so the process is to run tests for everything else with your symptoms and if everything else is ruled out that’s what’s left. It comes in varying degrees of severity between individuals as well as different times are more difficult for the person who has it/them.

There are lots of sites on the web about them… some are more accurate then others. Like I said, it’s all very misunderstood. I’ll list some of the ones I’ve found to be fairly good. If you have any other questions, please let me know. I’ll check back here and you can email if you want.

I hope to hell this isn’t what is going on with you!!! There are times I wish I were dead rather then have this virus and today seems to be one of them. If I felt better today, I’d go into a more detailed outline addressing each of the symptoms indicated but I just can’t today. Maybe tomorrow.

Oh, I almost forgot. I’ve had doctors I’ve had to educate about this thing too. But if they can’t figure out what else is going on, I suggest you check into this.

[ul]
FIBROMYALGIA BASICS

Lists of Symptoms of CFIDS (CFS = Chronic Fatigue Syndrome; CFIDS = chronic fatigue and immune dysfunction syndrome; ME = Myalgic Encephalomyelitis ------- all the same illness)

What is ME or CFS?

Chronic Fatigue Syndrome [/ul]
My computer isn’t online yet. I’m on Rico’s and he doesn’t seem to have all the sites bookmarked I do. I’ve been looking for the good ones but can’t seem to find any more right now. Sorry

Good luck to you and take care. If you truly believe it’s something, don’t give up until you find out what it is.

As has been mentioned, sometimes people are hypocondriacs. I certainly am acussed of being one often enough. I agree with Shayna and thatDDperson’s comments on that idea…and have some other ideas that would probably not be appropriate for this forum and since I don’t “do the pit”, I’ll shut up now.

17

damn! i’m not sure what I did, but musta hit the submit instead of preview. sorry!!!

Kathy

18

You all have made me pick up the phone and call my old internist/endocrinologist to schedule an appointment. I have thyroid nodules, and was on Synthroid for several years, until my thyroid magically “stabilized” itself. Last Fall/Winter I was tired & cold all the time, had incredibly dry skin and lost a bunch of hair. Things that I suppose could be attributed to the season, but I was concerned and went for testing with my current doctor. Everything came back within “normal” levels, but now I want to go back to the guy who took care of me in the first place, and compare those results with what he established as my “normal.”

My blathering aside, I hope you’re able to get some answers, Themis. The not knowing is hard. “Go and be healed,” as my voice teacher used to say.

19

Just wanted to point out to Themis that Chronic Fatigue Syndrome (CFR) and Fibromyalgia (FMS) are also closely related to thyroid problems and can be another type of autoimmune disease that results from a malfunctioning thryoid (as you also know, since you’re taking the same Synthroid for your disease(s) as I am for my hypothyroidism) …

It’s also interesting to note that on one of the links you provided, Kathy, that in addition to many of the other shared symptoms, endometriosis is listed as a symptom of chronic fatigue syndrome…

[quote]
http://wwcoco.com/cfids/bernesx.html [ul]
[li]Muscle and/or joint pain, neck pain: 65-95% [/li][li]Heat/cold intolerance: 75-80% [/li][li]Painful and/or swollen lymph nodes: 50-80% [/li][li]Subnormal body temperature: 65%** [/li][li]Hair loss: 20-35% [/li][li]Weight loss: 20-30% [/li][li]Other general symptoms reported: Endometriosis [/ul] [/li][/quote]
On preview: malkabat, I’m so glad to read that you’re going back to be tested – this time armed with the truth that “normal range” isn’t necessarily “normal” for you. Good luck and I hope they can get you stabilized again! I’m still working on it, but at least most of my symptoms have diminished or disappeared (no more dry skin or debilitating headaches- yay!). I’m still in constant pain (aching hips, knees and elbows) and suffer a few other symptoms, but they’re mostly mild compared to before. Here’s hoping everyone gets well soon!

20

Thank you for pointing that out Jill. My brain, as you can tell is one of my major problems with CFS, isn’t working worth a darn today. If it had of been, I think I would have thought to make that connection.

I had endrometrosis, in fact, it was so bad, I had to have all my parts removed. When I was going through all my testing, they discovered my thyroid was off so I’m on synthroid too. But fixing that didn’t fix the problems. I’m also on estrogen since the overies had to go too, but that didn’t take care of it. They discovered I have asthma, but treating that didn’t fix it. I can’t remember what else…if there was anything else.

In short, by the end of my late 30s I was sure I was totally falling apart and I went straight into denial when told I had an autoimmune system virus and kept insisting I’d be fine; I’d be able to fight it; I’d go back to work, etc. etc. etc. Took me years to learn to work with it instead of against it. Hell, I was one of the people telling myself I was a hypocondriac!

However, the stress of Rico changing jobs and moving and 5-6 weeks of physically trying to do more then I should, etc. has left me in much more pain then usual and a ton of other symptoms flairing up.

Whine! I’m sorry! I think I need a swift kick in the hiney today!

There is so much unpacking to do and I just can’t see it ever ending. Anyone want to come home? I’m not above accepting help at this point. I’m not proud enough any more to not ask for it even.

Kathy