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jolynnhughes
07-06-2012, 03:19 PM
I returned to the rheumy to get the results of the extensive blood work and xrays. While my ANA was still positive, the rest of the blood work was negative. The xray report from the radiologist showed "minor erosions" on three fingers of each hand. When she told me that, she said, "but I doubt that. That would indicate autoimmune, and I don't see anything in the blood work or on examination to support that." It struck me as odd that she would doubt a radiologist, so I asked her if she had seen the xrays and she said no that they don't send them to her. Well, while I certainly do not WANT to have any other autoimmune problems (already have Hashimoto's), it bothers me that she is ignoring the radiology report. I have so much pain in my fingers --haven't been able to wear my wedding rings in months. Some days, I can hardly open a jar or grip anything. I won't even go into any of the other symptoms. So when I pressed her as to the cause of the joint pain and the other symptoms, she said she felt like it was all from the Hashimoto's. I asked her if that could cause erosions, and she said no. She told me I didn't need to come back to her unless I got sores in my mouth or my joints got red, hot, and visibly swollen, or I got a rash. She claims the dermagraphia I have doesn't count as a rash and that she thinks it's also from the Hashimoto's.

With that, I asked her why, since Hashimoto's is an autoimmune disease, they don't do anything to supress the autoimmune response. She said, "I have no idea. My guess is because it won't work." I don't get it! If it's autoimmune, like all the other 63 some-odd autoimmunes, why don't they treat as such? If it can cause so many of the same symptoms, why? She told me to take Advil or Aleve. Well, duh! I've been eating Advil and Aleve like skittles! Sometimes it takes the edge off, but when the joint pain is bad, it doesn't even put a dent in it.

I'm sick and tired of being sick and tired! I NEED SOME DEFINITE ANSWERS -- I can't take this, "Well, I think it's from..." any more! What the heck?

Manderson
07-06-2012, 06:49 PM
A year later and I still don't have any answers - other than possible Psoriatic Arthritis. I've had everything else ruled out, yet symptoms persist.

Jolynn - I am intrigued by Hashi's. I am hypothyroid and taking L-thyroxine 75 mcg. What symptoms did you have that made doc suspect Hashi's? I need to have a retest of thyroid this summer and I think I am going to ask about Hashi's since it seems like things have not progressed for me but seem to be sliding backwards as far as my symptoms go.

steve.b
07-06-2012, 10:06 PM
if the xrays were not sent to the doctor.......
maybe you should ask for them to be sent to you.

that way you will be able to show them to the doctor, and anyone else required later on.

i always keep my xrays. just in case.

jolynnhughes
07-07-2012, 07:38 AM
Manderson,

Where shall I begin? It all started with unexplained seizure-like events...at least that is what began the string of doctor's appointments and ridiculous misdiagnosis (that is an extreme symptom, however, which is what stumped most doctors). Looking back, I had a variety of symptoms off and on that I excused or that didn't warrant investigation at the time. Hashimoto's symptoms wax and wane, depending on the immune response, just like other AI diseases. At first, the seizure-like events were diagnosed as panic attacks, as they seemed to occur only during extremely stressful situations (after my daughter miscarried, etc.). When they became regular and involved more neurological signs, we realized they were not panic attacks. So, six doctor's later, two hospitalizations, and four months off work on disability, my symptoms began to multiply. I had extreme cold spells that I could only relieve with hot baths (which often triggered seizures). I had tingling in my arms and legs, muscle twitching, off balance, buzzing in my ears, confusion, memory loss, joint pain, extreme exhaustion, etc. I searched for answers for over a year. Being that I am 50ish, and that my symptoms were often worse during my menstrual period, in desperation, I tried the bioidentical hormone route. The doctor I went to for that tested my thyroid antibodies (previous endocrinologist did not). Up until that point, doctor's had only tested my TSH, T3, and T4. At that time, those were all normal. The antibodies, however, were sky high, indicating Hashimoto's. And then the next journey began. That doctor sent me for a thyroid scan. I had a small nodule on my thyroid gland, but by the time I got to the endocrinologist she referred me to, that was gone. I was still having all the symptoms, but she didn't believe in treating the Hashimoto's until my TSH, T3/T4 were off. Unbeknownst to me, that was an outdated practice. I finally found someone who treated it in keeping with the latest research, and once I began taking Synthroid and Cytomel, the seizures all but stopped, and many of my symptoms have gotten tremendously better. I still suffer with the joint pain, tinnitis, and spells of extreme exhaustion. My hands and feet hurt/burn, like they've been slapped, but the seizures have nearly disappeared. I have had only two since February when I began the treatment. I can tell now when my levels get low, and my doc ups my dosage and I improve. I'm hoping, now that I know what to watch for, I won't have any more seizures. Slowly, the Hashi is destroying my thyroid gland. I will have to always monitor my levels every six weeks, as the levels go up and down depending on the immune response. My dosages have to be changed accordingly. So far, I have not had to reduce the dosage, but that is always a possibility. I have learned to tell whether I am low or not, and supposedly, being high is easier to tell. Unfortunately, I can't seem to find anyone who will treat the immune system problem. They just treat the resulting complication. Uugh! Frustrating. It's just my theory, but I suspect it's only because no one has tried it. Endocrinologists treat Hashimoto's, not rheumatologists. Endo's appear to know very little about autoimmune diseases.

Make sure your doctor is practicing current, research-based treatment for Hashi's. Because thyroid hormone levels go up and down with this disease, the most current practice is to treat according to symptoms. While my doctor still closely monitors my levels, she claims that the normal range for a Hashi patient is much different than for someone just hypo or hyper. Good luck to you! It appears you and I are in the same boat.

Manderson
07-07-2012, 10:10 AM
Goodness Jolynn! The seizures alone would have had me screaming. Mine only tests for TSH, T3, and T4 not antibodies. She is my PCP rather than an endo. I am in a new HMO and I have visited almost every speciality trying to get a dx, but so far endo has not been one of them. Other than seizures, I think I have many of the same symptoms as you. I have the burning joints, as well as burning feet. Muscle cramps wake me up every morning. My internal thermometer has apparently been broken as I have totally abnormal responses to hot and cold, esp. cold. My husband thinks I am a reptile since I seem to have cold blood running through me. The symptom that has made me think thyroid levels need to be looked at again is my hair falling out in large quantities. I am having a flare of psoriasis on my scalp but I have never lost this amount of hair before during it.

Thanks for the info!

magistramarla
07-07-2012, 01:16 PM
Jolynn,
Is it possible for you to get a second opinion from another rheumy? The trick always seems to be to find one who will treat the symptoms rather than only relying on lab tests.
Hugs,
Marla

jmail
07-07-2012, 02:10 PM
I vote for new rheumatologist *AND* a new endocrynologist. 'Scuse me and my spelling if I'm wrong on the titles/terms, my head ain't all here again. Anyway, did they test your vitamin D, calcium, magneseum, etc? You almost *HAVE* to do vitamin D3 supplements when dealing with Hashimoto's. You are either already, or will develop into sun-sensitive at the least. You can literally go "crazy" from low thyroid. Your whole body is regulated by the thyroid, and it can and does affect everything about your system, including your mineral levels. If you were hypothyroid for a while, your calcium may be way off, and your body may have been stealing calcium from your bones. Your neuro symptoms suggest such. Have you ever had a bone scan done? After blood work confirms certain levels (I can't remember the tests or the levels), a scan is easy enough to do (though expensive) and it can tell you if you're doing the thin bones thang (the term is not coming into the empty recesses of the cranial cavity... hmmm). It took me a few years to recover from a lot of my symptoms. Also, what'd they do about the nodules? Have they checked the parathyroid glands? Not related to the actual thyroid, just named for being "in the rear of the thyroid". They regulate calcium (among other stuffs). Sometimes, when a thryroid gland is operated on, damage is done to the parathyroids, and issues show up from that... Best of luck and prayers for your situation. It ain't easy constantly gettin' that all too familiar "Well, you don't have xxx disease, but I don't know *what* you have."...

jolynnhughes
07-08-2012, 07:12 AM
Jmail,

I did have low vitamin D, and after three months of prescription doses, I now take 2000 units a day to keep that level normal. I also take calcium supplements. As for the nodule, it was gone on the second scan. I am supposed to have another one in a couple of weeks. I have also had a bone density test. That was a year ago, but it was normal. Not sure about the parathyroid, but I have not had any surgery on the thyroid gland, so IDK. I'm going to my PCP this week, and I'm going to get her to request the xrays. She sent me to the rheumy I went to, but I suspect she will send me somewhere else if those xrays do, in fact, show erosions.

Thanks for all your advice. No one talks much about Hashi's on here, so I'm glad to know (not for you, of course) that there is someone else here.

Jo

Derrie
07-08-2012, 07:55 AM
Just to chime in, I have had Hashimoto's thyroiditis for six or so years now. My hormone levels do occasionally fluctuate (I've been on doses of Synthroid ranging from 50mcg to 150 mcg at different times since my diagnosis), but overall, Synthroid has managed my disease very well. I've never seen an endocrinologist for it. I was diagnosed by a family practitioner, and my thyroid levels have been managed by my various PCPs ever since.

I was not diagnosed based on symptoms. I never thought I felt bad. I went to the doctor because my thyroid swelled up to size of a tennis ball! I went to the doctor, and she tested my thyroid antibodies (sky high) and hormone levels (T3/T4 almost gone; TSH really high), and she couldn't believe I wasn't bed-ridden. Go figure. Thyroid fluctuations have never seemed to bother me, even when my levels were really, really off.

Oh, and I, too, had low Vitamin D, and I supplement for it.

So, I don't know if I have anything useful to add, but I just wanted to chime in that I have Hashimoto's, too-- you're not alone!

jmail
07-08-2012, 08:04 AM
I'd be willing to bet that a high percentage of SLE folks also have Hashimoto's... If you've had a bone scan, and it was fine, that's good. I can't remember for certain all about them, but the nodules are another symptom of Hashimoto's. Some nodules can be "hot spots" where extra hormone is made, which can really throw off the blood work you get done. My current gp is much too polite toward my previous doctor, in that she says he was probably just testing when I had "hot" nodules, which made it look like my blood levels were fine. In my mind's eye, the old doc didn't really *care* to find the issue, and was only doing half of the blood work "required"... but that's another story. Anyway, do you know your iodine levels in your blood, Jo? That will influence function. I was on Iodine+ for a while, but it's rather expensive... I've got other issues besides the thyroid that influences my Vitamin D and I'm way low, so I'm currently on 12,000 a day in another attempt to get my levels up from my last flare, which involved all sorts of fun stuff. I'd normally be on 4,000. You really have to watch the levels, since too little and you don't absorb most nutrients and meds as well as needed, and too much can get all sorts of other mineral levels out of whack, and damage the kidneys.

btw, from your first post, what's a "normal" blood test? I found out after-the-fact from my current gp, that most of my blood work from my old doc was actually "borderline", and *not* "normal" (besides the fact that most thyroid and B12 "normal" levels are actually set too low). That's one of the reasons that by the time I changed doctors and got proper treatment for my Hashimoto's, we ended up with a 175mg level... Likewise with all my blood work for when the docs would say "I don't know what you have...", my current rheumy said "SLE" in a matter of moments, after looking at my *OLD* blood work & urinalysis tests and then doing a physical examination and asking questions. Wonder of wonders, he'd actually *READ* my file *before* he came into the exam room... It's more an overall picture of what your body is doing he says, way more so than what any single series of tests can show... Makes sense to me.

Danica01
07-09-2012, 12:56 PM
Hi! I have been dealing with SLE for years and it took many years and many doctors to get to the point. I think we are giving an extra set of nerves for doctors to jump on over the years! Ge a second opinion and a third and fourth until you find someone who truly listens to you are your symptoms. Someone will hear you and someone will help you. It may take time but do not give up. You are your own advocate and just keep pushing!!!!!