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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Shocked again lastnight http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1305154502 Message started by Riverwn on 05/11/11 at 11:55:02

Title: Shocked again lastnight
Post by Riverwn on 05/11/11 at 11:55:02

I knew I was trying to shock because I was reacting slightly each day, and bleeding under the skin on my arms. It was the 4th day after ending my predisone. I started itching like crazy, so I took 50 mg of benadryl. It didnt stop. I was nauseaous and threw up a few times, tasted like supper beef--was bad, acid so I think it may have had too many histamines in it. I took 40 mg of prednisone, It slowed down but didnt stop. Next time I dont fool around , I will take 60mg to 80 mg. My life is t worth the worry :)

My daughters boyfriend took me to meet the ambulance in the usual place. They were funny, neither one had been with me before so I was giving the one caring for me a quick lesson on what to do. I told him what I took and said, "I will need an IV quickly and solumedrol." He did it. Then I told him my BO would sky rocket then drop like a stone , dont let it throw you. He was amazed when my BP went from 140/90 to 231/133 to 90/70 all in 2 minutes.. He said, "You sure know your disease!".

The hospital took good care of me but the DR was one of those "I know better than you." type. He refused to do a Tryptase and gave me Pepcid when I asked for Zantac LOL.. I did get better though.

The bad part of my day is, not one family member showed up or even called the hospital. They have a lot of excuses but I still hurt over it. Empty lobby when I was released, Empty parking lot..I called all of them and got many excuses of why someone else will come pick me up. I saw an inconvenience. Next time I will take my own car, no matter what. I sat for 3 hours until someone came to pick me up... Really hurt my feelings. Now they are angry that I dare to get upset with them over it, "after all they have done for me."

The good thing is, I had some resaly important testing done when I was in the hospital 2 weeks ago but I didnt have the results,. I have most of them now (got them this morning while waiting).

The 24 hour urine is still pending but I have some results that answer A LOT of questions. Lisa and Heather can you help me here> My brain is mush and you are both so brilliant. Can you shed some light on what this means for me??

Here are ONLY the abnormal lab values;

WBC-----------17.8--HIGH---normal is 3.0 to 10.1
HGB-----------15.6--HIGH---normal is 12.0 to 15.4
NA ------------133---LOW----normal is 143 to 145

PROTEIN TOTAL-CHANGES IN NUTRITION
ALB------------3.2--LOW----normal is 3.4 to 5.0
GLOB---------4.0---HIGH----normal is 2.3 to 3.5
A2 GLOB------1.2--HIGH----normal is o.4 to 0.9

"Hypoalbuminemia pattern, Consider protein deficiency or protein losing disease state."

BETA GLOB---1.5--HIGH----normal is 0.5 to 1.2
A/G RATIO----0.0----LOW---normal is 3.3 to 3.6
AST/SGOT----10-----LOW---normal is 15 to 37
ALT/SGOT----27-----LOW----normal is 37 to 55
TSH --------- .29-----LOW----normal is .38 to 6.15
PLT-----------379----HIGH----normal is 140 to 350
NEUT #------13.2----HIGH----normal is 1.0 to 6.6
MONO#------1.4-----HIGH----normal is 0.0 to 0.9

DIFF----
SEGs--------84-------HIGH----normal is 50 to 70
LYMPH------10-------LOW-----normal is 20.0 to 40.0

BAS0# -----0.0------LOW-----normal is 0.0 to 20

IGG subclasses;
IGG3<--- 17 ----LOW----normal is 41 to 129
"IgG3: Along with IgG1, the IgG3 subclass is most frequently present in the antibody response to protein antigens. IgG3 deficiency has been associated with a history of recurrent infectious, leading to chronic lung disease. Decreased IgG3 levels are frequently associated with IgG1 deficiency (63)."

But, MOST dramatic, is this lab result;
My IGE is 1330.0 normal is anything under 100.
My IGM is low 40.0

I got the results of my ECG which say I had an anterior infarct in May of last year. I guess it was during an episode. Abnormal ECG but normal sinus rhythm. chest xray shows no problems with heart or bone formation around it. My LDH and HDL are both very good.

ok, what do you think??
Love ya,
Ramona

Title: Re: Shocked again lastnight
Post by gnbailey on 05/11/11 at 14:24:24

Ramona,

I'm so sorry that you shocked last night! But it breaks my heart to think that you had to sit outside of the ER for 3 hours! I am so sorry!

I also and tapering off of Prednisone and on the first day at 10mg and had a really rough morning.

After going to the ER and getting the IV solumedrol, will you have to start back on the Prednisone at 30 or 40 mg again? This was a question that my ER doc had on Sunday and I was not sure what the answer should be. What did your ER doc say? And what a jerk he was - refusing to take a tryptase level?? Ridiculous!

Hope you have had a better day!
:) :)
Gaynell

Title: Re: Shocked again lastnight
Post by Susan on 05/11/11 at 14:45:25

So sorry your family was not supportive.
It is hard for people to understand illness that goes on and on. So sad that the lack of understanding left you sitting at the ER for all those hours.

I don't know all the labs, but usually a low TSH is good news. It means you are making enough thyroid hormone and don't need your thyroid further stimulated. That is presuming you do not have something like Graves disease, where you make too much thyroid. I don't know what the rest of the labs mean in light of mast cell issues, but it looks like your immune system is having trouble functioning up to par. Is this common with mast cell disease? Low IgG subclass 3 and low IgM can sometimes be associated with primary immune deficiency. Have you been checked yet for all of those kind of things?

Title: Re: Shocked again lastnight
Post by Starflower on 05/11/11 at 15:22:02

Hi Ramona,

When are you doing that BMB with Dr. Lottenberg? I think it's important not just to check for mast cells, but to check on the general health of your bone marrow. Was it your dad that has/had polycythemia vera? Your CBC is off on a lot of numbers... I don't think it's just an infection. (The IgG deficiency could explain your chronic problems with infections though!)

Your TSH is fine. Normal is 0.3 to 3.0... you're just barely below that. It's not worth treating with radioactive iodine. I would, however, ask to test for thyroid antibodies. I bet your numbers are high.

Your sodium was low, but not dramatically low. Was it measured during an attack? Did you have vomiting and diarrhea? It's easy to replace sodium with an IV of saline solution, but usually sodium and potassium stay in pretty tight balance with one another.

I'm sorry that your family was not there for you! :( My husband is kind of clueless about these things... I could see him doing something like that.

Heather

Title: Re: Shocked again lastnight
Post by Riverwn on 05/11/11 at 17:18:56

Gaynell,
Yes I did. They want me on 60 mg of prednisone for 5 days (i say 4 days, the solunedrol and emergency pred made 5 days, I dont want to have to taper, I want off of it quickly). I spend too much time on it and it irritates me--I gain weight instead of losing it and my blood sugar spikes up, so more insulin (im a diabetic).

So, the question of do you need a 4 or 5 day course after a reaction, really needs to be answered by you--and you need to ask yourself, was this a pretty general and small reaction or full blown shock? If it was full blown and severe, I personally think you need a break--mast cell wise and would take that 4 or 5 day offer. If it was a less severe episode, I would opt to just keep my emergency prednisone near me ... now you have to know your own body and choose wisely for YOU.

hugs
Ramona

Title: Re: Shocked again lastnight
Post by Riverwn on 05/11/11 at 17:22:44

PS, next time, for me--my emergency prednisone will be 60 or 80 mg , not 40.. that isnt working for me anymore and I like being able to stop the episode and stay home--but be VERY careful doing this. If you dont show improvement quickly, call 911 and do NOT risk your life.
Hugs
me

Title: Re: Shocked again lastnight
Post by Riverwn on 05/11/11 at 17:40:11

Hi Susan,
Well, the first DR to catch this, told me that my immune system was going crazy and the prednisone was forcing it to act normal.. but the side effects are so terrible for long term use, I try to get off of it quickly.

Ive been checked for many things, like ANA for lupus, fribromya;gia--which they did diagnosis me with but I think my pain is from the masto in my bones. They checked me for Mast Cell Leukemia, negative. And alot of other things that I dont quite understand just yet. Heather and Lisa are the true experts in biology and tests--so is Jilli :)

Im a nurse but this was never one of my experienes with a patient so it is not my area of expertise until I came down with it. You learn fast when it happens, you have to!

Yes, my family can be very loving and then very much in denial and a bit cruel. Tonight my Mom told me, to stop being a Baby, that Im 55 yrs old and do not need someone to hold my hand when I go into shock, that the world is not about me....next time, I will drive myself and not bother them... we will see how that turns out, but I dont need extra stress and trouble from them.
Hugs
Ramona

Title: Re: Shocked again lastnight
Post by Joan on 05/11/11 at 18:00:13

So sorry about your family! I wish I'd been there. I wouldn't have just picked you up, I'd have taken you to the ambulance, followed it to the hospital, sat there until you were better , and then taken you home!

It looks like you're a little more complicated than the average bear! It's hard to know, because you've had infections and been on prednisone so much for while. If there's an immune deficiency, e.g., you aren't producing antibodies to some bacteria, that can be corrected, but the diagnosis is important.

Heather's right. They need to check out everything on the bone marrow.

Has Lottenberg seen these? Keep me posted!

Title: Re: Shocked again lastnight
Post by Riverwn on 05/12/11 at 01:11:06

Ackkk! I wrote a long reply to Heather last night and I guess it got lost befpre I posted it... oh well, I will redo it as soon as I wake up LOL...

Thanks Joan, I bet you would :) and I would love it. so I will imagine it if I have to go again lol..
love u
me

Title: Re: Shocked again lastnight
Post by Riverwn on 05/12/11 at 01:33:48

Hey Heather :)
Thanks for answering me. I see Dr Lottenberg on Monday. I will tell him then to go ahead with the BMB and schedule it. Even the NIH is saying I should and it will give them more info on which study program I belong in. You think they need to test for eosinophils also then, with the BMB??

Yes my Father is the one who has Polycythemia Vera. His DR told him it was because he had Scarlet Fever as a child. I dont think thats correct but Im no expert there.

No, these values (blood samples) were drawn 2 weeks ago,when I had not reacted in 3 months (shock wise). I was reacting in small ways though.

I will ask to test for thyroid antibodies. Heather I know that you also test high for IGE, Doesnt that tell us that the Masto is auto immune? Doesnt it mean that I will also test positive for C Kit gene abnormality? Are there any other tests you should I should ask for on Monday?

Im sorry your husband is out of the loop emotionally. I know how that hurts. My ex sig other (the one who ran when I got sick) took me to meet the ambulance once, then said "Im going home to watch TV".. the female EMT was furious, she told him "You might want to go to the hospital and even call relatives, I cant say she will make it to the hospital alive." He did go but he was furious that she dared to say that to him and he humiliated me by voicing loudly in the ER. I was glad when he left. He has now called 3 times and wants to come back, I said ' NO WAY." LOL I keep you in my prayers, Hon.. I hope your Hubby starts understanding how we feel.
Love u,
Ramona

Title: Re: Shocked again lastnight
Post by Josie on 05/12/11 at 04:40:31

Hi Ramona ,

Ah yes family . I have had to distance myself from mine for my own health . I have more examples than I can say . A couple .

When I ahd my first shock , my mother when told by my sister said , oh how exciting .

When I finally used a wheelchair after a yr of agony when walking , my dad said I was giving up .

I won't go on . I will not upset myself anymore . I have used many excuses for them . I hope they understand one day without getting unwell themselves .

I completely agree with your comment about not fully understanding until you are in it yourself . Its what drives my teach nurses plan i spoke of before . For others . i want nurses and doctors to experience chronic pain for a period of time 24 hours . This could be achieved with a tens machine , and wouldn't do any damage . I know from being anurse I empathised . I was caring , but I didn't really understand . Interestingly I think my fibro diagnosis is bone pain . All my other symptoms have found other causes . I adapted my guide yesterday to this fact .

many hugs

Jose

Title: Re: Shocked again lastnight
Post by mikev on 05/12/11 at 06:04:04

Josie:
Sorry to hear about your shocking again & hope you get better. Am working on mine from the sulphites angle you gave me. Found out even the generic zrytec has cornstarch, so switched to the real more expensive zrytec that doesn't. Anyway I have the opposite family story. My Mom & she like I never shocked or showed any overt sign of problems, complained about being in pain & was misdiagnosed with fibro although her mom had RA & my daughter has RA. From when I could remember she was bare footed as much as possible. But she was the picture of health until a stroke got her a couple years back at 88. I always listened to her & basically put up with her complaining as she went from small town doc to another. I now wish she was still here so that I could tell her how sorry I am that I never believed her & thought as my whole family did that she was a hypochondriac. Because I sometimes get the same treatment. How can someone like me look & normal test so good on the outside be in such pain on the inside.
Hope you get better & thanks again for your help
MikeV

Title: Re: Shocked again lastnight
Post by Sandi on 05/12/11 at 18:31:32

Ramona, I'm so sorry, for both, shock and family! Maybe next time you can mention to the staff you don't have a ride and they could get you one. Either with a police officer already there dropping off a patient or possibly the ambulance on it's way back from dropping someone off? Of course on the "low down" :) I'm guessing a cab ride would be horribly expensive? I live in the boonies so it would be for me!

Title: Re: Shocked again lastnight
Post by Riverwn on 05/12/11 at 20:15:56

Thanks Sandi, thats my problem too, I live in the boonies about 38 miles from the nearest hospital. I have my own car, I'll use that :)
hugs
me

Title: Re: Shocked again lastnight
Post by Riverwn on 05/12/11 at 20:20:00

Josie,.Im so glad you are in a better living arrangement and using things to help make you more comfortable--I know how that is, dont let your ego get to you. Do what you need to do for YOU :) I cant wait to read your lesson to Nurses. All I can add to that is amen. lmao.
Hugs
Ramona

Title: Re: Shocked again lastnight
Post by Susan on 05/13/11 at 05:42:48

Hi Ramona,

I personally think fibromyalgia is mostly a wastebasket diagnosis, where they put the people they can't figure out. It does help some to have a name they can put to their pain, but there is not a lot they can do to relieve it, and for some, it prevents looking into what the real cause is.

I'm not a doctor or nurse, but I do work in a doctor's office doing medical research. We work primarily with people who are very sick, that no one can figure out. I've seen a variety of ways the immune system can go haywire, though I am just learning about what mast cells can do.

I hope they figure out what is going on for you, soon. It may be you have multiple things going on, which muddies the picture. I'm glad you are moving ahead with getting testing, even though it isn't quite what you were originally hoping for.

I know a number of people who have low IgG subclasses, and they almost all find IgG infusions are extremely helpful. There may be complications for you with the masto, but most of them are very reactive to all kinds of things as well. You would need to start at MUCH lower doses than usually given, as IgG infusions can trigger activation in your immune system. You may not end up going down that path, but if so, be sure to go SLOW.

So sad to hear the stories with families. I have a large family, and it is split. Part of them have told me I am just whining for attention, and to come back to see them when I grow up. This is what I was told when I was going into the hospital to have a PICC line inserted for IV antibiotics for the infection in my brain. It was very painful to find the same brothers and sisters that I have taken in to my own home when they were down and out, have turned their backs on me, because it makes THEM feel too bad to hear how I am doing. Eye opening, in a painful way. Like Josie, I have distanced myself from them to protect myself.

Title: Re: Shocked again lastnight
Post by Josie on 05/13/11 at 06:56:21

Hi Ramona ,

I wrote you a long response , and its gone . Ill do so again later .

I hope you are resting xxx many hugs
Jose

Title: Fibromyalgia
Post by Joan on 05/13/11 at 11:03:05

Hi Susan,

There is research that is showing that mast cells are involved in fibromyalgia. Still, you are right that it's often diagnosed when other answers can't be found. If you Google "fibromyalgia mast cells", there are some interesting articles.

Title: Re: Shocked again lastnight
Post by jbean on 05/14/11 at 03:47:16

Hey Ramona,

I am so SORRY!!!! Geez!!!!!

Yep, done the empty park lot thing at the hospital in the middle of the night several times. I usually go in by ambulance, then get released at 2AM or some other ridiculous time and have to get a taxi home. Nobody answers the phone at that time of the morning so I just gave up on that.
Sure is a lonely and isolated feeling isn't it?

As for the blood counts and other indicators being off, I would try to get a consult with a hematologist and a good internist. Perhaps you have several issues going on here, not just the masto. The question is why your blood counts are jumping around like that. True, the stress, meds, etc all plays in, but it is possible that there may be other thigns on here that have to be teased out. Did you, by any chance, have exposure to somebody who was sick? That might make you more prone to have a "blowout" of masto as well. Or, if you blood sugar was off. Do the steroids through off your blood sugar? Have you checked it lately? They messed up my mom, who is diabetic.

I am coming off my steroids now. Hope I don't have another blowout as soon as I quit those.

My best advice is to go see a hematologist. Get your lab results, especially your blood differentials from a few years back so the doc can see what your normal baseline was running.

FEEL BETTER SOON!!! Will keep you in my prayers. ;)

-Jilly

Title: Re: Shocked again lastnight
Post by Josie on 05/14/11 at 07:29:22

Hi Ramona ;-)

I hope you are recovering .

I ahd some thoughts about your bloods . I agree with Jilly that a heamotologist would be wise ;-)

I also think that an endocrinologist may be good as your low thyriod levels and sodium may indicate addisiions . They work together the adrenals and thyroid . A work up for hashimotos thyroiditis , ( low thyroid ) which is an autoimmune condition would explain the thyroid issues . tests - free T3 T4 and thyroid pyroxidase enzymes will show this .
Hashi's happens more commonly in patients with IA than in the general population . This is felt to be due to the increased compliment cascades ( inate immunity ) . Replacement with leveothyroxine will work when thyroid is failing . I will find out the TSH ( free T3 ) level under which treatment is advised.

A 9 am cortisol will establish what your adrenals are doing . They may be switched off at the moment due to the steriods . Then a test at 5mg is advised as the adrenals should be working again at this point .

Addisions ( low ) can be an autoimmune primary disease or secondery to long term steriod use . You pointed out to me that my adrenals are unlikely to be switched off due to steriods as it had not been long enough and Dr Grattan here agreed with you ;-) He tested me for autoimmune addisions - adrenal antibodies - which was negative . So I ahve another idiopathic condition ;-)
Most ppl have one or the other .

A short snacten test , with ACTH ( synthetic ) will stimulate the adrenals and see what they do ( bloods at 30 min intervals for 2 hrs ) . if you arenals respond , you know they will come back on line in time .

In the meantime , you will need 5-10mg of prednislaone a day . This is equivelent to your natural production . You will also need more 5-10mg in infection / other illness as you will ahve no stress response .You need cortisol dayly and in illness ;-)

Low IGG and hashi's and or adrenal insuffiency would explain your infections rate .

Your white cell count indicates an infection , maybe your recurrent UTI or ( I don't know if you ahve had an OGD - oesophegeal , gastric , dueodenal camera ) or have been tested for h pylori . H pylori is known as a risk factor in angiodeama ( Dr Grattan 2005 ) .

Your HB may be due to concentration with plasma loss into the tissues so a repeat will shed light there .

Your total protien and albulmin are not surprising either in the cont

ext of anaphylaxis as these are lost through the porus blood vessels - an effect of histamine in shock . Wether IV albumin would be a useful way forward would be a decision for a heamotologist . Steriods do not work for heridatory angiodeama , so the fact steriod work for you , essensially rules this out . The test is C1 esterase inhibitor , c3 and c4 ( compliments ) . This excludes type 1 and 2 . there is a 3rd oestrogen related type , but it would be expected to improve at menopause . There is an article on it in the mimicing section . I don't think its you ;-) I think your low albumin is secondery to your shocks .

I hope this helps ;-) many hugs
Jose

Title: Re: Shocked again lastnight
Post by Riverwn on 05/14/11 at 11:15:12

Thanks to both of you Jilli and Josie, I appreciate hearing your ideas.

Jilli, yep I live in the boonies outside a small town (population 654), so I have to travel to the nearest small town with a hospital for care. There is no taxi between towns :( Thats why I'll take my own car next time or be stuck. Besides, my family is now angry that I dare to be upset that no one came for 3 hours. They expect an apology and groveling or refuse to speak to me (except for my son).. It will be a very quiet summer LOL.

Yes, the steriods make my blood sugar jump quite high, I have coverage with regular insulin and Im being careful :) I see my Hematologist Monday early.

The good thing is, Ive been going to the same place for most labs so I can compare the results--and most of those abnormals have been at that point or higher since January. The hospital lab is also keeping track for me (Some say, "there is a pattern of")... nice to know.

Hon please make sure you have an emergency amount of steriods on you--just like the epi, just in case. I think it would make you feel better, I know it does me.

Josie, I have been borderline low tsh for years but DRs dont seem to want to try me on synthroid.. I'll see about it again on the next primary DR visit. I do have alot of the symptoms but also, some are not there--but because of other things I have going on (like the tachycardia with masto).

I dont think I have addisons.. but anything is possible, If he wants to test me for it, one test cant hurt. I dont want to stay on cortisone for any longer than neccessary, the side effects are horrendous--but it does save my life when needed.

In the US the standards now are, 5 days or less on cortisone and you dont need to taper off. More than that amount of time and you do. The usual rate is go down 5 mg at a time, stay on that for 3 days, then down again 5 mg, until you are weaned off. Right now Im on day 5 of the shock incident so today is my last day on prednisone--but I have a good emergency stash on me if needed :)

Youre right about the low IGG3 and low IGM explaining the re-occuring infections--but nothing to be done about that, just to be aware.. LISA--I did start on the NAC today, I trust your judgement and dont want to take anymore chances.

I also read an excellant article on immune diseases and the importance of zinc in the diet. It seems it has a lot to do with triggering some diseases (and more than that), so.. Im also taking one zinc a day from now on. I have a very strong gut feeling that it will help.

My HGB has been high since last sept.. maybe further back, I dont know. Im not sure what it relates to but I'll find out in time.

I think the low albumin isnt related to my shocks (I showed it low on lab tests during the 3 months with no shocking) and the lab patterns say it seems to be related to some sort of protein disease. I think its the malabsorption syndrome when I am off of prednisone.

Thanks to both of you and LOTS of love ;
Ramona

Title: Re: Shocked again lastnight
Post by Susan on 05/14/11 at 13:16:48

Hi Joan,

Interesting that mast cells may be associated with fibromyalgia. I work in a doctor's office where we see many people with fibro who actually have some specific cause for their pain and other symptoms, but the doctor who diagnosed them with fibromyalgia just couldn't be bothered to find the cause and treat it. That is why I call it a wastebasket diagnosis, something convenient for certain lazy doctors.

Once those patients come to our practice and have the cause determined, their pain can be treated, and sometimes eliminated. Not everyone, but many. It makes me sad to think about those who just live with their diagnosis, when they could be seeing improvement in their lives.

Title: Re: Shocked again lastnight
Post by Starflower on 05/14/11 at 13:24:13

Hey Ramona,

I just wanted to add a couple of things...

Hashimoto's is an autoimmune disorder that gradually destroys your thyroid. You might go many years with a normal TSH, but eventually it will creep above 3.0 (the normal limit). When I was diagnosed mine was 44.3... it was very clear that I needed Synthroid! Your TSH is actually on the low end, which indicates Graves disease (autoimmune hyperthyroidism). This is treated in a different way from Hashimoto's. If your TSH is not terribly low and you're not having any dangerous symptoms like anxiety, hypertension, arrhythmia, insomnia, weight loss, etc... then most doctors will just "wait and see." Otherwise, the treatment is to kill your thyroid with radioactive iodine... or remove it... and then replace the hormones with Synthroid. I know this is a bit confusing (especially when lay people use words like "low thyroid"), but TSH is what tells your thyroid to produce hormones. If it's low, then that means either that your pituitary gland is malfunctioning, or your thyroid is working over-time and your pituitary gland doesn't need to provide much additional stimulation. If your TSH is high, that means your pituitary gland is working hard to stimulate production, because your damaged thyroid can't keep up.

You're right that malabsorption could explain the abnormal albumin level. I absorb food a lot better now that I'm on Gastrocrom and a gluten-free diet. Sorry for the TMI, but my poop always used to float. Now it doesn't ;) Poop floats when it's full of undigested fat, which is lighter than water.

Anyway... I wouldn't worry about your adrenal glands at the moment. Press for answers about your bone marrow and CBC. I wouldn't even worry too much about your thyroid at the moment, but you might want to see if you can get an appointment with an endocrinologist. It might take a while... and it would be best if you can find a doctor who works with thyroid and adrenal disorders. Some focus just on diabetes.

Heather

Title: Re: Shocked again lastnight
Post by jbean on 05/15/11 at 04:06:26

Hi Ramona,
Just a couple of other thoughts. Long term steroid use has the potential to cause immunosuppression. During such times, people can pick up an infection, and be unable to clear it if they were on steroids for awhile. That might also be a possible consideration as to why your blood counts are a little messed up right now. That high neutrophil count is what caught my eye. Neutrophils are your first line defender against infection. You might be harboring a buga-a-boo/virus.

This is so easy to do when the weather is so up and down as it has been and people are getting sick. I think springtime colds are the worst for this reason! People go out in public, even when they are sick, because the weather is nice and they are tired of being inside, and as a result, spread the germs around more easily.

Also, steroids can mess with your other hormone levels and activity. They tend to amplfy drug effects too. Steroids are very powerful medications. Used for the right purpose at the right time, they can be a life-saver. However, they also have side effects, so they have to be used with caution, monitoring and control if used for longer periods of time.

I think it is a good place to start to see a hematologist. You can ask as well as to if you should have an endocrine consult. With your diabetes, it is probably a good thing to do now and then anyway. I think you need to find a medication regimine that works well for you and will keep things in balance.

A repeat blood analysis, once you are off your steroids for a bit, might give a clearer picture of your natural baseline. That is what they would want to see, how that has changed.

Title: Re: Shocked again lastnight
Post by Riverwn on 05/17/11 at 03:19:46

Thank you all so much for helping me brainstorm through all this :)

Well, yesterday my Hematologist cancelled my appt, His office says his asst was ill and his schedule was too full for it. I have to reschedule sometime soon. I dont see my primary DR until the first week of June.

I do have a lot of the symptoms of Graves disease but I think there are other reasons for those same symptoms, so it isnt diagnostic. I will have those antibody tests done to see where it stands.

Right now my bigger concern is, theyve changed me from Medicaid to a "share of cost" program and I have to submit all medical bills every month. (they didnt tell me this before). I found out as I was picking up my meds at the pharmacy--and they refused to give them to me, pay cash or forget it. The dept pf ed also has garnished my disability check and takes 170.00 monthly out of it--it just started this last month. Seems to be awfully big part of it and Im going to see if it can be lowered.

Im going to the Medicaid office this week to see if I can make some kind of progress.

Im off of prednisone too, 3 days now and keeping my fingers crossed I wont react.

I think I still have the UTI, but it isnt as bad(painful) as it was before--so Lisa, I think the NAC is helping me :)

Love you all BUNCHES!
me

Title: Re: Shocked again lastnight
Post by Sandi on 05/19/11 at 18:49:19

Mizz Ramona! You are not going to get that one past us!!! You cannot use your car, you are using the ambulance to get your gluteus to the hospital because you are in anaphalaxis... you cannot drive yourself! For your own safety and the safety of others, it'd be worse that drunk driving and if you crashed they'd have no idea you were in shock!! You will not drive yourself you hear woman!!! The hospital may have some way to get you home!

Title: Re: Shocked again lastnight
Post by Riverwn on 05/21/11 at 04:43:57

LOL Yes Ma'am, Susan. I promise I will be careful. If Im in bad shape, I will NOT drive ok? LOL

Just wanted to let you know I have solved a few issues. I talked with the dept of ed and they didnt know I am totally and permanently disabled--so they are lowing my garnishment to 50$ per month and sending me paperwork to waive it totally, proving I am disabled.

I also went to the Medicaid office, with medical bills in hand, proved I had over 960$ worth of medical bills in the last 30 days and they have approved me for 0 share of cost til November! (whew) I went to the pharmacy and refilled everything immediately.

I will reschedule with my hematologist soon and Im feeling quite pleased with myself :)

The family situation is still a bit upsetting. I have 2 sisters, my parents, my daughter and a grandson within half a mile from me, and it just isnt good. Their anger surpasses any concern about me and I havent heard from them in a week ( a long time for my big mouth family LOL).. Im shopping by myself and doing whatever needs to be done without help--but Im doing it. Now Im just concentrating on not feeling anger towards them--letting it all go.. and being with those who truly care--all of you :)

My love to ya and Ill be here (online) as long as this laptop doesnt overheat and cut me off! LOL..

Love you
me