Maybe and maybe not Lupus: I am very... - LUpus Patients Un...

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Maybe and maybe not Lupus

Savonna profile image
10 Replies

I am very confused and getting angry. I have so many "abnormal" blood tests I don't know even what community to post in. I have dsdna of 9, ss-a 1, mpo 27.8, p-anca 1:80, ch-50 >60, c-reactive 1.5, thyroid peroxidase >900, histamine release 94, eosonophils 10, rheumatoid factor 17, vitamin d 18. Hashimoto's I know. I don't think they know were to go with this. My ANA which was always a high tither is right now NOT. Say what? Now I can't breathe, my feet and hands are killing me. My tongue is raw, my saliva glands swell up and go back down. Just had my gall bladder out. So far no medications to actually help and just more and more blood tests. Any one else have crazy blood work like this that someone actually figured it out?

10 Replies
Fighting profile image

I usually run perfectly normal labs when I take the "correct lupus medications". Because of this no hospital physician considered anything related to lupus, when I was hospitalized in 2 different hospitals during 2014. The first one was in a University community, the Ann Arbor, MI area. The second one was a Catholic hospital in IN, USA. I could go on about what happened. Suffice it to say that it took a former Rheumy to figure it out. I need to see him next week and hope to begin to get the prednisolone lowered to the pre-episode levels. In the US, more recently, we do not get to see the labs. They are in the electronic chart and the physician quickly reads down the list noting slightly high, slightly low, normal. I really do not know what labs are being run these past 3 years. Before electronic charts, I was handed a copy to do with what I wished.

Savonna profile image
Savonna in reply to Fighting

I request copies of everything. They have to give them to you. When I found out I've had Hashimoto's since at least 2003 and no one told me because "there is nothing I can do about it" I'll never fall for that one again. It could of saved me a lot of mental anguish thinking I was nuts and it explained some symptoms. The endoscope down my throat was useless since I have a goiter and they kept telling me my thyroid was fine. Seeing my Rheumy tomorrow but I can bet this is going to take some time. The money involved is astronomical, I can't keep it up. Hence the angry part I guess. I can't keep this up even with insurance. I have low cortisol and just realized I'm being tested for Cushings. :| That's an extra added cost when she knows I don't have it. Even the symptoms don't add up to that. I've gained some weight but not that much.

I'm showing moderately high on a lot of things but not so high as to point directly to something. I have a slight butterfly rash but not as bad as most and that's not a definite. Thanks for answering. I guess I just want to vent some.

Fighting profile image
Fighting in reply to Savonna

I believe I will return to getting copies of every lab and filing my copy in a file folder. The physicians here have begun insisting that another department did the labs and the copy needs to come from that department. I then get charged for paper copy of a lab that is electronically stored. Medicine has become big business and unfriendly.

Savonna profile image
Savonna in reply to Fighting

Fighting...when I go to quest diagnostics to get blood work I say "I'd like a copy please". They give me a form to sign and it comes in the mail. When I get results at the doctors office I ask for a copy then and there. It's pretty easy to get that copy when I'm in the office. If I forget to get it right then it's a big fat hassle and they sometimes charge me. According to quest diagnostics you can request a copy anytime you do blood work at any facility. (they get snippy if you don't ask before they do the work) It's the law. To get a full on medical report it costs either by page or a flat rate at each and every doc you see.

I've even demanded my xrays in my hand. They buffed up at me but they belong to me. I don't have bad doc's like that now but in the 90's I lived in a very small town and got put in the "fibro" catagory and had to battle my way out of it. Toothache? Fibro, sore toe? fibro, back pain? fibro, hair falling out? fibro. It was an ugly cycle. When I moved to a new city I just started over from scratch. And here I am now.

Atibrat profile image

Sounds like mixed connective tissue disease it just may take a long time to figure out which ones. Of coarse having one autoimmune disease puts you in higher risk of having another. I went to the Emergency room the other night for kidney and chest pain. The ER doctor said for the most if you have lupus it is a connective tissue disease. I think for your rheumatologist it is important to follow your auto immune disease but I just go with the fact my blood work is often changing and unfortunately along the way new symptoms pop up. It seems there are so many ways our immune systems can go it is hard to always put it in one category. My ANA finally went to normal after 3 to 4 years on Plaquinel but it took a long time. I also have the pain you do and so often the raw tongue and sometimes raw mouth. My eyes feel like sand paper but I always test negative for sjorgns. Who knows

Savonna profile image
Savonna in reply to Atibrat

I start Plaquinel today. I guess this is standard procedure when trying to figure it out. Still no name to put on it but I can see this will take a good amount of time to figure it out. Eye doctor and GI doc next. Guess this is life now and got to get used to it.

Get copies of everything. It's for your own peace of mind as well as just having it.

Atibrat profile image

That is how I started Plaquinel will probably help more then you will feel for a long time. I went off mine 2 years ago because I thought it wasn't doing anything. Don't ever do that without talking to your doctor. I ended up so sick. Now I know how serious this can get and have sworn to all my doctors I will never do that again.

I also have a lot of specialists. Not fun but you and your doctor can help manage it the best you can.

Savonna profile image

2 last question if you don't mind. I'm to be taking 400 mg of Plaquinel daily and I have to go get a base line eye exam. Do you know what is involved for just the baseline test? I am getting conflicting reports when I look it up online and I'm tight on money. All these doctors and blood tests have pinched the pocketbook. I know I need one within the first year of using Plaquinel but I actually need an eye exam anyway. I can't drive without sunglasses even on a cloudy, rainy day and it has starting to concern me. 3 years ago I went to a water park (big mistake) and burned my eyes in the sun. Haven't been right since.

Last question is do doc's really care if I get an exact diagnosis? My doc says I don't fit in a neat little box and seems to be unconcerned about saying "you have ____". When to me this is important. I could study something, talk to other people, be validated as to not being crazy and so much more.

lupus-support1 profile image

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

I am sorry for not replying sooner but unfortunately I have not been able to reply.

My first question would be whether you are seeing an expert in autoimmune diseases? Not all rheumatologists are expert in SLE. Since you already have one autoimmune disease, it would be necessary to find out whether there is more going on. Unfortunately, some families have more than their fair share of autoimmune conditions.

Not all rheumatologists are expert in lupus which is also called a "Disease of 1000 Faces" because it can mimic almost every disease.

I think it would be helpful to write down ALL illnesses since childhood, no matter how irrelevant they seem. Include any changes in mood such as anxiety,phobias, depression and to note dates. List all recent symptoms with dates and keep copies of blood tests. If you are not happy with your doctor, try to find out whether there are other doctors - the US has many lupus specialists but this depends where you live.

It is OK to be angry, sad, anxious or depressed or to have any other feelings. If you did not, this would not be "normal"! It seems to me you also need a place to talk about your you feel.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

Finally, re: Plaquenil or hydroxychloroquine. Based on large numbers of patients, a 7 year study at St Thomas' Hospital, London showed that this was a safe drug to take for lupus. However, a base eye examination with an ophthalmologist (specialist eye doctor) is necessary. The study did confirm that for some patients, there were some eye symptoms which were frightening. This only came about when the dose was started at 400 mgs a day. The symptoms disappeared without any damage by stopping Plaquenil, an antimalarial. It is recommended, therefore, that patients begin treated with 200 mgs a day and then increase to 400 mgs a day. No symptoms are reported when starting at the low dose.

With good wishes!


Savonna profile image

TY for the plaquenil info. I had not seen that about starting out on a low dose. I did find it after doing a search after reading your post. I was about to start taking 2 since bottle said 1 or 2. I very much thank you for that. I'm hesitant to join another lupus board in case that's not what I have.

He totally blew off the p-anca tithers and mpo antibodies. Since I was ONLY a 9 on ds-dna, 17 rh factor and ss-a positive of 1 he says, "could be coming from Hashi's". True BUT. 16 years ago I pierced my tongue on a whim for 5 days and you can tell. I showed him the cracks, the red rawness and swollen buds. I know he thought I was full of it :/ nor would even read my er lab or ct scan of swollen saliva gland or low cortisol. I had a giant goiter and I swear to you my pc kept feeling around my adams apple telling me I'm fine. My faith in doctors is waning. He did acknowledge the sed rate, c-reactive and ch-50 highs. I do believe that's the only reason he put me on plaquenil. He did glance at my elbows and never had me take my shoes off to show him my feet were blood red and on fire. I have one leg covered in tattoos and boy was he not amused. Wouldn't you know it, that's the leg that feels like it's going to split open. I can't change docs, my insurance likes referrals. If you show anger or irritability at them you get an "anxiety state unspecified" mark on your report card.

TY again for letting me vent. It's nice to know someone knows what I'm talking about. I'm all done now LOL

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