Finally asking for some help
 

For several months now, I've had some serious problems that are not being resolved. So I thought I'd post and see if anyone has any suggestions for what I might do. You may remember that I developed stress fractures, multiples including one in my left ankle, foot, thoracic spine and finally two in my sacrum. The culmination of the fractures was that I wound up in the hospital for two weeks.

The rheumatologist and otho told me I'd need 10-12 weeks to recover from the initial effect of the fractures and then they would put me in physical therapy. About two weeks before the physical therapy, my ankles started swelling. They were intermittant at first, some days more swollen than other days. Now for almost a week they remain swollen all the time. The left more so than the right. Now my ankles, feet, legs up thru the knees, hands, and today my eyes are swollen. I cannot exercise for very long in the physical therapy before I have this feeling of needing to urinate. And I am finding that I need to stay close to a bathroom because of this reason. I just feel toxic. Odd way to describe it, but it is the way I feel. I'm falling sleep sitting up sometimes too.

The rheumatologist looked at my general bloodwork and says it is just the hot summer. But hot summers haven't affected me this way before. I'm vibrating more than usual too. And I constantly have this feeling of the world sorta swimming around. Also I have periods of confusion. I am shaking violently after exercise. I can't hold on to a glass without using both hands and am afraid of missing my mouth when trying to put anything to it.

I am also losing the toenails on both big toes. The podiatrist said I had a trauma to them. I haven't dropped anything on my toes, run them into anything and wear sandals around the house. No trauma that I know of.

On my last blood work, the RF factor was out of range at 36,
the Microscopic Exam of urine had mucus threads present which was considered out of range,
my serum glucose was out of range at 115
And on the CBC the RBC was out of range at 3.45, Hemoglobin was out of range at 10.9, Hematocrit was out of range at 31.6, and the RDW was out of range at 15.7%

And if you are still with me at this point, I thank you so much. I know this is long, but I've waited a long time to post it and wanted to try not to leave out anything that might help someone who might be able to help me.

Anyone have any suggestions about what is going on? I seem to have a doctor who doesn't seem to have a clue. Thanks in advance for any answers.

Billye

:hug: sent you a pm billye. i hope it helps.

do you know what the rest of your blood test showed? sodium levels, potassium, calcium? liver enzymes?

i'm toxic and have edema right now too. working on it. today much better than during the week. staying out of the heat today must be helping.

Tks
 

Hi Curious,
I got your PM and answered you.

The postassium looks normal at 4.0 in a ratio of 3.5-5.5

The calcium looks a little on the low side at 9.0 on a ratio of 8.5-10.6

I'm not sure what the liver enzymes are called.

Billye

What are normal levels of AST and ALT?

The normal range of values for AST (SGOT) is from 5 to 40 units per liter of serum (the liquid part of the blood).
The normal range of values for ALT (SGPT) is from 7 to 56 units per liter of serum.
What do elevated AST and ALT mean?

AST (SGOT) and ALT (SGPT) are sensitive indicators of liver damage from different types of disease. But it must be emphasized that higher-than-normal levels of these liver enzymes should not be automatically equated with liver disease. They may mean liver problems or they may not. The interpretation of elevated AST and ALT levels depends upon the whole clinical picture and so it is best done by doctors experienced in evaluating liver disease.

http://www.medicinenet.com/liver_blood_tests/page2.htm


does this help? the link has a lot more infomation.

i had an abdominal injury years ago. then my liver messed up during an emergancy c-section with my son.

yes, found it
 

It looks like I'm still in range altho a little on the high side.

The AST (SGOT) is 37 in a range of 0-40
and the ALT (SGPT) is 30 in a range of 0-40

I expected high because of the Humira and methotrexate. I do know the doctor watches this number.

Billye

It does seem--
 

-as if you are at least somewhat anemic, especially with that red blood cell count. That alone may be a major contributing factor for fatigue. (I see you've been researching that in your other post.)

I also wonder how much this may have to do with drug effects and interaction.

Remember, too, that Sjogren's is still a vasculitic autoimmune disease, as well as one of the moisture/mucuous membranes, and you may be having effects in that realm. That could certainly account for the edema/swelling through vascular insufficiency. There are also associations with hypothyroidism and adrenal insufficiency--a whole other battery of tests to have.

I know you and Chemar have communicated, and that Mrs. D will likely respond here too--do you feel like listing more test results from your most recent batteries?

Lost it
 

Somehow I lost the message I posted last night to answer Glenn. I will be having more bloodwork in about two weeks that can be compared to the bloodwork I just posted here. And I've got bloodwork that was done by the endocrinologist last week that still is to come in. I'll wait to post until then. I have been remiss in not using Liza Jane's charts. I'll start those and then post them and see if you and I can see a trend.

I've not changed any medication since I went to Mayo. They made a slight change in my Lyrica right after I got back and nothing has been changed since.

I'm slightly anemic I know as Glenn has noted. But the rheumatologist ran additional bloodwork to check on that and I don't have my copy yet. (I forgot that had been done.) His dippy nurse told me that it was just the anemia that goes along with chronic illness and he wasn't going to do anything about it yet.

I'll end this thread here for the time being with many thanks to all my good friends. And I'll refresh it when I have the new bloodwork.

Billye

HI Billye!
OMG you have been going through the mill! I'm SO sorry to hear you are having such problems.
It sure does sound like you are toxic or having some medication reaction. I hope they get it figured out soon! We all have such rotten issues to deal with!

Edema & low blood volume
 

Hi Billye,

I haven't posted in a couple of years and saw your post regarding low HGB. I do check this site from time to time though. My husband John is the one who ended up with PN from his treatment for Severe Aplastic Anemia. One of the side effects from having low red cells/hemaglobin is that your body likes to maintain a certain level of fluid volume in your circulatory system. So when you're down a couple of pints like you are, your body compensates by holding on to more fluids to fill the void. This can result in water retention throughout your system. John's HGB is at 10.9 also and he too is carrying extra fluid.

If you have your CBC records, look for where you're counts were when you did not present with the fatigue and fluid retention. This will give you an indication as to what level your body would like to be at. So if you normally had a HGB of 14, then dropping to 10.9, you will feel it even though the docs say it's mild anemia.

There are a couple of thing we keep an eye on. We focus on trends...looking at the CBC over time. The key components we track are White Blood count, Absolute Neutrophil count (also known as granulocytes), Hemaglobin, Hematocrit and platelets. You want to monitor all of these to see if other lines, that are still in a normal range, are trending down/up. When it comes to your red cell line, you should ask them what your Absolute Reticulocyte count is. This is the actual number of new red blood cell circulating in your blood. It's not unusual for the RWD to be high when you are anemic. Large red blood cells are usually a result of many new red blood cells being produced to make for the deficit.

There is a hormone, EPO, ((erythopoein (sp)) produced by the kidneys which stimulates the production of red cells. You may want to ask them to check your EPO levels at some time.

This about all that comes to mind right now. Hope it's helpful. I will look for a link that explains blood production and post it later. I think it will be helpful in understanding how blood is produced.

Wishing you the best,
Marlene

Info on Blood
 

Here's link on blood. I hope you find it useful...Marlene

http://users.rcn.com/jkimball.ma.ult...s/B/Blood.html