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Fri Aug 1, 2014, 04:37 PM

 

Shaking My Head Over Doctors

I have had daily hives since January. Went to primary care doc they gave me a course of prednisone and when they came back after dose sent me to an allergist. Allergist looked to be about 85, and still using type writer and carbon paper, I kid you not. First thing he does is hand me a stack of copied newspaper clippings saying they often don't find the cause. Ran some tests. My immunoglobulin levels for A E and M were low and my CH50 was high. He just sent me a copy of lab work with note saying he didn't know what to make of this because he expected high immunoglobulin levels and low CH50.

No advice for follow up nothing. So I googled. Turns out not only can my low immunoglobulin levels and high CH50 cause hives but can be signs of more serious things. I call back prime cares office. Got "well we aren't immunologist we don't know what they mean either. So I said so refer me to an immunologist then.

They took forever but finally did. I go on Tuesday. Well the Immunologist's office tells me to stop taking all antihistamines for a week before appointment. I do. This a.m. I wake up, hives all over the place and swollen lip, all of which has been going on all along when I don't take the antihistamines. Doctor knew it, allergist knew it. All acted like oh it's no big deal. That I should just keep talking Zantac ( has antihistamine qualities and it's working) and learn to live with it.

So I call Immunologist's office, got voice mail and I say the hives are all over me again my lips swollen, I know yo don't want me to take antihistamines because they may throw tests off. Is there something else I can take to stop this itching? That's all. Then I left for meeting and had my cellphone off.

I was riding with a friend. She pulls in my driveway and a Sheriff pulls in right behind me. The immunologist had called my doctors office, my emergency contacts and 911 because they were afraid I would go into anaphylactic shock.

Nice they care and now I feel guilty for panicking everyone but I didn't think anything serious was going on. I just wanted relief from the itching.I wasn't saying it was serious because the primary care knows I have been having these symptoms for months and acting like hey it's no big deal. The kicker is there's two calls from them saying to take the antihistamines right away and that I might want to go to the ER. I guess they don't want me to just live with it now a big city doc told them it might be serious.

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Arrow 33 replies Author Time Post
Reply Shaking My Head Over Doctors (Original post)
Liberalynn Aug 2014 OP
Shrike47 Aug 2014 #1
Liberalynn Aug 2014 #2
Laffy Kat Aug 2014 #3
Liberalynn Aug 2014 #10
slipslidingaway Aug 2014 #4
Liberalynn Aug 2014 #11
slipslidingaway Aug 2014 #23
Warpy Aug 2014 #5
Liberalynn Aug 2014 #12
MindPilot Aug 2014 #6
Liberalynn Aug 2014 #13
trof Aug 2014 #7
scarletwoman Aug 2014 #8
Liberalynn Aug 2014 #15
scarletwoman Aug 2014 #19
Liberalynn Aug 2014 #14
trof Aug 2014 #20
Lars39 Aug 2014 #9
Liberalynn Aug 2014 #16
Punkingal Aug 2014 #17
Liberalynn Aug 2014 #18
Tsiyu Aug 2014 #22
Aristus Aug 2014 #21
Liberalynn Aug 2014 #24
Liberalynn Aug 2014 #25
zazen Aug 2014 #26
Liberalynn Aug 2014 #30
lunasun Aug 2014 #27
Liberalynn Aug 2014 #31
kickitup Aug 2014 #28
Liberalynn Aug 2014 #32
rwork Aug 2014 #29
Liberalynn Aug 2014 #33

Response to Liberalynn (Original post)

Fri Aug 1, 2014, 04:49 PM

1. Sorry to hear of your problems; good luck. But sometimes it seems like they don't ever read

the chart. You have to explain the same history and symptoms over and over. Frustrating!

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Response to Shrike47 (Reply #1)

Fri Aug 1, 2014, 05:24 PM

2. Thanks.

 

Hopefully this immunologist knows his stuff. They already seem to be taking it far more seriously than the primary care doctor.

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Response to Liberalynn (Original post)

Fri Aug 1, 2014, 05:45 PM

3. Keep us posted, Liberalynn.

I feel terrible for you. Hopefully they'll get to the root.

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Response to Laffy Kat (Reply #3)

Mon Aug 4, 2014, 04:43 PM

10. Thanks! I will.

 

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Response to Liberalynn (Original post)

Fri Aug 1, 2014, 06:08 PM

4. Best of luck and glad you followed up ...

hopefully the immunologist will get to the bottom of things, please let us know.

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Response to slipslidingaway (Reply #4)

Mon Aug 4, 2014, 04:47 PM

11. Thank You.

 

The immunologist's bio on the clinic's website said chronic hives and auto immune disorders are his main areas of research interest so I am crossing my fingers that if anyone can figure it out he can.

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Response to Liberalynn (Reply #11)

Mon Aug 4, 2014, 11:10 PM

23. You're welcome ...

the fact that his office followed up on your condition would give me some assurance. Our daughter just finished her residency in internal medicine and of course I relate stories that I think she should know As I've told her, one must always do their homework, whether it is someone hired to do work or any other professional ... including doctors.

Wishing you the best!



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Response to Liberalynn (Original post)

Fri Aug 1, 2014, 06:12 PM

5. Any itching, tingling or swelling anywhere around the mouth is serious business

and you should have gone to the ER. If it happens again, drop everything and go, please, we need you alive.

Unfortunately, docs tend to have a lot of tunnel vision once they specialize. If I had a dollar for every time I had to refresh a highly specialized doc's memory about an additional disease process in order to get the right consult and emergency drugs, I'd be richer than they are.

The CH50 is a very general test for any inflammatory process going on in your body. It can be elevated in a lot of different conditions, rheumatoid arthritis, heart disease, and the flu being only a few of them. It just tells the docs that something is wrong and your body is trying to defend against it. It's most useful when the underlying disease process is known.

Now that your immunologist knows this is serious business, maybe you'll get seen and get something done about it. Worst part of hives is when they break out between your toes and fingers. Itching is magnified and it hurts to scratch.

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Response to Warpy (Reply #5)

Mon Aug 4, 2014, 05:01 PM

12. Thank You!

 

That helps to know about the CH 50 levels and I will definitely go to the ER if the lip swelling happens again.

So far the hives have mainly been on my stomach, my arms, my chest, my back, my bottom, and my legs above the knee.

I can only imagine how painful and itchy they must be between fingers and toes.

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Response to Liberalynn (Original post)

Fri Aug 1, 2014, 06:20 PM

6. Most of the time doctors can't do much.

 

If you have something visibly broken or leaking, they're great at making repairs.

If what's wrong is not immediately obvious, then chances of an actual diagnosis are virtually nil.

And as any doctor will tell you, absolutely every medical condition can be corrected by stopping whatever it is you enjoy.

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Response to MindPilot (Reply #6)

Mon Aug 4, 2014, 05:05 PM

13. The stopping what I enjoy part is what I am most worried about.

 

I don't think it's a sudden allergy to my dog and the feral cats I feed, but I almost don't want to know if I'm wrong.

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Response to Liberalynn (Original post)

Fri Aug 1, 2014, 06:25 PM

7. Typewriter and carbon paper? whew

I guess we suspect he might not be up on the latest methods.
Wow.

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Response to trof (Reply #7)

Fri Aug 1, 2014, 06:58 PM

8. On the plus side, at least he didn't try to treat her with leeches.

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Response to scarletwoman (Reply #8)

Mon Aug 4, 2014, 05:08 PM

15. That made me laugh!Thanks!

 

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Response to Liberalynn (Reply #15)

Mon Aug 4, 2014, 07:21 PM

19. Oh, I'm glad! I do hope you'll get some useful information out of the immunologist!

I've had some crappy run-ins with doctors myself over the years. Especially older male doctors - I think they came up through medical school at a time when "women's problems" were generally assumed to be due to hypochondria, and that women were basically idiots.

Good luck!

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Response to trof (Reply #7)

Mon Aug 4, 2014, 05:08 PM

14. That was my concern and one of several reasons why I asked for referral to an immunologist/allergist

 

for additional consult.

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Response to Liberalynn (Reply #14)

Mon Aug 4, 2014, 07:27 PM

20. I was very impressed by my first visit with an endocrinoligst a couple of years ago

when he walked into the examining room with a laptop computer.

All my medical history and current symptoms which I had filled out in the waiting room a few minutes before were already in it.
OK, I thought. This guy is 'with it'.
And he was.

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Response to Liberalynn (Original post)

Fri Aug 1, 2014, 06:59 PM

9. With your lips swollen, they probably thought your airway was compromised

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Response to Lars39 (Reply #9)

Mon Aug 4, 2014, 05:09 PM

16. That's what the primary care said when I got in touch with them after.

 

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Response to Liberalynn (Original post)

Mon Aug 4, 2014, 05:37 PM

17. here's a nice doctor horror story for you....

I noticed my left big toe and the one next to it was turning dark from time to time, as if t was not getting circulation. I showed it to the doctor when I was at the clinic for something else, and she said, "Well that's poor circulation." I said, "What can you do about it?" She said "Nothing." About 3 weeks later, I began having serious pain when I took a deep breath, went to the emergency room, and had multiple pulmonary emboli. Guess where they came from? A big-ass deep vein thrombosis in my left leg, which is what caused my toes to be turning black, too. Isn't that something? I'm lucky to be alive. Those things kill people.

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Response to Punkingal (Reply #17)

Mon Aug 4, 2014, 05:47 PM

18. That is scary!

 

I am glad you survived! There were a few situations when my Mom was still alive where we had to rush her to the E.R. at night. The doctors there would say "well why didn't you take her to the primary care doctor earlier in the day" and we would tell them, "we did but they said their wasn't anything serious going on." One of those times she almost died because all her electrolytes were crashing.

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Response to Liberalynn (Reply #18)

Mon Aug 4, 2014, 07:40 PM

22. Best health care system in the world



Hope you get this resolved. I get hives sometimes from additives in medicine or from some kinds of food coloring and it's awful but only lasts a few hours. I can't imagine how you have dealt with this so long and not gone nuts. You are one tough cookie.

And it's really good to know you did have some folks who cared about you, though the Sheriff in the driveway had to have been a shock!

Reminds me of the time my daughter got contacts that were scratching her eyes. She called the ophthalmologist office and the secretary makes her an appointment that afternoon and tells her to put the lenses back in her eyes before the visit. Uh, no way, Jose.

She got better care from the Walmart optician than from these stooges.

Hope they figure this out at the immunologist and you get rid of those nasty hives for good.

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Response to Liberalynn (Original post)

Mon Aug 4, 2014, 07:31 PM

21. That allergist needs to retire.

Or at least go to continuing medical education seminars once in a while. The science of allergies and immunology is changing all the time.

If he can no longer keep up on his medical knowledge, he needs to hang up his lab coat...

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Response to Aristus (Reply #21)

Fri Aug 22, 2014, 10:11 AM

24. +1

 

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Response to Liberalynn (Original post)

Fri Aug 22, 2014, 10:30 AM

25. Update

 

Had a panic this morning! Lip was swollen three times it's regular size. So I took my antihistamines and called my sister. She told me to keep the phone with me but just calm down and wait to see if I started any other symptoms. But then I started to panic thinking of how concerned the doctors got the last time and thought what if my airways start to swell too and I pass out. So I called 911. The ambulance came and took me to the emergency room and the doctor said I"m fine and I did the right thing. The paramedics though came right out and said it was just because of my anxiety and depression that I was getting over excited about my lip swelling despite the paper work from the Immunologist. Plus I got charged the non emergency co pay and my sister said they will charge me full for the ambulance ride.

I am not saying the anxiety disorder didn't come into play but it didn't make my lip swell, it's not causing the hives, and I wouldn't have panicked over the swollen lip today if the immunologist's office didn't act like it was such a big deal the last time.

How am I supposed to know when it's serious and could get worse and be too late to call or not? At least my sister isn't mad at me but now I feel stupid and dismissed as just a "nutcase".

The immunologist by the way said he is 90 percent sure it's not an external allergy but an Immunological malfunction. He's ordered more blood work and I'm waiting for results. He too said the odds of finding the cause are extremely low.

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Response to Liberalynn (Reply #25)

Fri Aug 22, 2014, 10:51 AM

26. that's BS! women in particular are prone to be dismissed with "anxiety" misdiagnosis

I have a notoriously un- and misdiagnosed genetic connective tissue disorder in which patients have been told for years that it's all in our heads (sort of like MS 50 years ago). Since the most common type manifests most aggressively in females, we get that double whammy. I cannot begin to tell you all of the crazy doctor stories we have--we've got a national listserv and it would just turn your stomach to read all the stories of how we've been shamed, invalidated, insulted, blamed, etc., etc--like my dislocations and bruises and faintness are all in my head. Thank God there's growing understanding of it but it wasn't that way for years.

Through that, I've learned to be my own advocate and also how ignorant, stubborn, and dismissive many doctors can be, and how they want to slap any diagnosis on when they don't understand--and a psychiatric disorder is the failsafe when there's nothing else.

I'm no "doctor," but anxiety and depression do not cause lip swelling. And if you go into shock they'll be the first to claim you were under-reacting and don't care about your health. Above all, most of these jerks want to be the authority--so whatever you do is wrong. If you know too much, you're "anxious" and a malingerer--if you don't know enough, you're irresponsible. I do want to emphasize that this doesn't apply to all of them--I have had some terrific doctors and other medical staff, but they're a minority.

I hope you get the help you need. Have no idea if this is relevant, but I have learned through my own medical issues about something called mast cell activation disorder, which has also been under and misdiagnosed. If you google that you may at least find conversations of other people who have strange allergic symptoms and are searching for diagnoses--I often find names of doctors in my state from reading reputable patient blogs with accounts of who's knowledgeable and who isn't. Allergic reactions can sometimes be crazy difficult to pin down. Best of luck and hope you return to good health soon.

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Response to zazen (Reply #26)

Sun Aug 24, 2014, 09:14 PM

30. Thank you about the information on mast cell activation.

 

I checked to see if my lab results were in online. They all looked normal but two levels were low and upon googling what it means to have low levels, one did say it could lead to mast cell activation. My sister is going to try and set up a conference call with the immunologist tomorrow to see if those are all the tests back, what his interpretation of the results are and what I do next? Also I want him to know the lip swelling happened despite my taking the antihistamines.

I am sorry to hear about your disorder as well and the trouble you have had getting help as well.

The idea about reading patient blog's etc is a good one. I am reassured that the ER doctor said the immunologist that I am now working with is one of the top ones in the Rochester N.Y. area. At least I don't have to depend on that first allergist. I do need to find a new primary care though because they have been little help.

Thanks again!

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Response to Liberalynn (Reply #25)

Fri Aug 22, 2014, 11:00 AM

27. Docs can't follow you around 24/7 unfortunately are you keeping on log of your own on flare ups?

Any patterns ? It will help if it is still unsolved for the doctors to have any pattern info you have noticed
Stress anxiety food additives location new meds? Have any of these come up as pattern? Vascular or lupus ruled out ?
Good luck and yes beware of your throat swelling

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Response to lunasun (Reply #27)

Sun Aug 24, 2014, 09:26 PM

31. I am going to start keeping a journal.

 

The immunologist said he is ruling out the meds because there haven't been any new ones introduced and no change in their manufacturers. He also said he's doubtful it's food or location based. I visit sister a lot and I break out at her house and mine. I also tried using non allergenic detergents and soaps, deodorants, etc. The hives just kept showing up.

He said by the way they have showed up pretty much everyday since January that it's highly likely that it is not an external allergy but a malfunctioning immune system, but that we may never find out what the cause of the malfunction is.

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Response to Liberalynn (Reply #25)

Fri Aug 22, 2014, 11:20 AM

28. The E.R. doc knows what he's talking about and if he said you did the right thing, you did.

Anaphylactic shock is a scary thing and I'm sure he's seen it plenty of times. I am allergic to wasp stings. The first time it happened I was pregnant and had no idea what was happening to me. My husband drove me to the doctor's office and I will never forget my doc saying "Don't ever, ever, wait around with this." A shot of Benadryl fixed me that day, but he gave me an epi-pen that thankfully I've never had to use.

The thing is, with anaphylactic shock one can have a feeling of impending doom, so to brush off your anxiety about it to me is irresponsible. Your anxiety [could] have been a symptom of an allergic reaction.


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Response to kickitup (Reply #28)

Sun Aug 24, 2014, 09:37 PM

32. That had to be very frightening for you and your husband.

 

I am glad that it all worked out. I am glad you have the epi-pen just in case. It's good you haven't had to use it so far.

I didn't realize that the sense of impending doom was a symptom of anaphylactic shock. That is good to know.

I think the minute the paramedics saw that I was on an antidepressant they were convinced I was over reacting.

It made me feel better that the doctor told me I did the right thing and that he took time to reassure me that I have an in his words "excellent immunologist".

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Response to Liberalynn (Original post)

Fri Aug 22, 2014, 11:29 AM

29. Liberalynn

Hope you are better.. That must be very worrisome... I had hives one time in my life.. Coming home from work, swing shift, my face began to swell and itching all over... It was from the tip of my toes to the top of my head, very scary..

The next morn it was amazingly gone..

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Response to rwork (Reply #29)

Sun Aug 24, 2014, 09:45 PM

33. That did have to be really scary especially with the

 

face swelling. My hives are mostly on my arms and legs. They are itchy and make a couple appearances every day. The lip swelling isn't as frequent. It's only happened a few times.

I am feeling better tonight. I had a few hives today but not as many as usual.

Thank You

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