[pamela b]

Hi
I am fairly certian that I have Lupus and am waiting to see a rheumatologist.
MY Gp says my red blood cells are low in volume but my iron is okay. She says after 14 weeks she has not had an explnation from the lab about this but I am not anaemic. Does anyone ahev any ideas.
I am currently recovering from a 3rd bout of pericarditis in less than a year which is not virus related

Pam

 

[Lily]

Hi Pam and :welcome:

I had a similar thing early on in my disease. Low Red Cell Count because of the disease, my iron and folate were fine. It was just one part of the puzzle and not uncommon in Lupus. I also had a low white cell count, a very common finding in us. Once I went on medication for the Lupus my counts came up

Do you have other symptoms besides the Pericarditis that point to Lupus. If you have a look at the Not Diagnosed forum there are some pinned posts outlining some of the things that we present with. Of course not everyone presents the same but having this information ready for your appt will help the doc sort it all out. Sometimes we think some things are insignificant but they all form part of the puzzle of this thing called Lupus.

Do they have you on Prednisone for the Pericarditis? If you are taking it at the time of your specialist appt. it will interfere with some blood tests. As long as the doc knows that though he will take it all into account.

Pericarditis is NOT fun (hugs) I've had it a few times myself. Thankfully now I haven't had it in years.

Good luck with the Rheumatologist, let us know how you get along

love
Lily

 

[Katharine]

Hello Pam and welcome

I hope the trip to the rheumy's goes well. If you have any questions before you go, we'll do our best to help out.

Katharine

 

[LoopyLoo]

Hi and welcome from one Pam to another

I have exactly the same problem at the moment which came out the blue for me. I was very very pale and had extreme tiredness which I just put down to the lupus messing about. Turns out my red blood cells have been really low but my iron levels are fine.

I have menopausal symptoms and we thought it may be caused by heavy bleeding. Who knows? I'm now on medication and get regular checks but I can tell within myself when my red cell count is low.

Sorry to hear about your pericarditis and hope you get some answers soon.

Hugz,

Pam xxx

 

[pamela b]

Other symtoms

Hi
Do I have any other symtoms, where will I start ?
I have mouth ulcers, a red rash on the neck which never goes, the sun brings out a raised rash, I have valve problems with my heart that no one understands, high liver enzymes, a dry mouth, night sweats, flu almost every other week, white fingers in the cold, pain in wrists and ankles and am so tired I think I have lead instead of blood. I have a silly and embaressing cough.
Am finding life very hard and have a GP who thinks I am depressed and it is all in my head ! I have had to beg for this rheumy appointment. I also have very bad dizzy spells and collapsed while ut walking the dogs and managed to call my daughter who phoned the GP and told her she needed to listen to me as depression wouldnt do that. I refuse to take happy pillas as I am not depressed, just want to feel well so that I have a life.
I just want them to listen as I am not making it up.
The acute and very serious pericarditis last May came on out of the blue, I ahd felt as if I ahd flu and gone to bed and woke at 3 in the morning and had to be rushed to hospital for drain of fluid and kept on coronary care for a week. I have had milder attacks since, all with flue like symptoms. I dont feel quite so alone on here
Pam

 

[Clare.T]

Welcome to the forum Pamela

I am sorry to hear how unwell you are and about this GP who does sound uncaring. You and your daughter have done well to insist. It wouldn't surprise me if you did have lupus or something very similar but certainly further investigation is warranted.

About not being anemic, my understandings of anemia are pretty basic as I find it confusing and think it probably is complicated. However, anemia is a decrease in the oxygen carrying capacity of the blood either because there are not the right number of cells or the cells are not the right shape. So if hemoglobin is low surely there is some sort of anemia even if iron levels are normal. There are many different sorts including what's known as anemia of chronic disease, although I think serum iron levels are low in that, and there are autoimmune anemia conditions. Untreated anemia is potentially very serious and even when not severe has numerous unpleasant effects on general health.

Anyway, anemia needs invesigating to find the cause and 14 weeks wait for lab results might be reasonable if you lived down the Zambesi !

Change your GP if you possibly can. Did he never offer to do an ANA test.

I suggest you do not baldly say to the rheumy that you think you have lupus as first of all you might not; second, it might not be lupus per se and most important it introduces unhelpful dynamic to the consultation.
Some doctors might actively resent it as they do not like patients who seem to have diagnosed themselves. You can always say that a friend suggested that lupus or some similar disease could account for all your symptoms.
Make a list of all your health concerns leaving nothing out as almost anything can be relevant to lupus. Also list your health history, again leaving nothing out. A note of the chronic health problems of close blood realtives can also come in handy. Then inform yourself about diagnosis symptoms and testing from the excellent articles on http://www.uklupus.co.uk/, the information section of this site. The ACR Criteria are listed at the top of Not Yet Diagnosed section of the forum and it is worth looking at the list of 'alternative' or additional criteria to see what you can relate to there as well.

Please let us know how you get on. We'll help you all we can to better health.
I hope you don't have to wait too long for the appointment

Bye for now
Clare

 

[pamela b]

Gps

Thanks Clare
I dont intend to go and tell this man what is wrong with me and am trying to keep a diary and list of things and wills ay to him that I know myself well and think there is something wrong.
In reality I did find out about Lupus from a friend who is a health consulant who asked me if I ahd ever been tested. Then I found the site and things dod seem to fit quite well. My cardiologist thinks there is " something else going on that needs looking into " but my GP says " You are bascially very healthy and are likely depressed ".
I dont think that I can change as I am expensive to keep so to speak.
MY Alk Phos in my liver is 3x normal levels and all other liver functions at the very top of the scale. and I was checked for cancers including biospy and thankfully I didnt have cancer but was told nothing else had been checked.
This was 3 years ago and now they check it every 3 months which is how they found small volume red cells.
Maybe they are right and I am fine and depressed ?
I see the rheumy next Friday (14th )
Thanks for your help
PAm

 

[ROSJAC]

Hi Pam, So sorry you are having so many Health issues...glad you have an appointment with a Rhumy. I have Raynauds, and with your symptoms of cold, white hands, you may also. Lupus causes great fatigue and often depression is a factor. I am happy you found this site as it is a place that will give you great support and information. Keep us updated. Good Luck, Rosie

 

[pamela b]

Thanks

Thanks Rosie for your support
maybe next weeks appointment will bring some relief
Thansk to everyone else for their support to a "newbie "
Pam

 

[lazylegs]

Hi Pam,

Welcome to the site.

It is so frustrating when doctors say it is all in your head. You know your own body and can tell when something is wrong. It was a doctor like that that landed me in the hospital because he refused to look further and I went into a super flare.

I wish you luck with your appointment next week. Hopefully the rheumy will listen and do the necessary tests to rule in or out all the possibilities. Let us know how the appointment turns out.

Take care,
Lazylegs

 

[keebler]

Hi Pam,
The only thing I can add is take pictures of your rashes and take them with you when you see the rhumey.
Don't be surprise if he wants to keep them.

Take care,
Lyn

 

[pamela b]

Thanks

Thank you fro your good wishes but not optomistic
Having a very bad day today, actually passed out at work in the toilet, very embaressing so they sent me home at 9.30am.
I tell you this depression and imagination does some very odd things to you doesnt it ?

I am now laid in bed with a jug of water and my laptop
Tomorrow must be better
Pam

 

[Sam M]

Hi

Hi Pam youve found a great site for info and support ! When i first got ill i was also told i was suffering with depression and panic disorder ! I was panicing and depressed................. BECAUSE OF MY SYMPTOMS !!!

Please pursue it you know your body and you know what is wrong i had my first rhuemy appointment today and took a list of symptoms which was great because as soon as i got in there i went blank lol . The doctor put my list on the table and we disscussed them one by one it really was great !

I hope you feel better soon and have some peace of mind and we are all here for you should you need to ask anything !

Sam xx

 

[Katharine]

hello again Pam and ((((((hugs))))))

If you only knew how many of us went through years of being told that we were depressed, overworked, stressed (even insinuations of hyphochondria)... honestly we do understand and there is NO WAY you can imagine all that.

By the time I went to see my rheumy I had been ill for eight years (thankfully with a wonderful two year remission which served to remind me that "no this is not normal at my age"). When I walked into her office I was pretty blunt - I was pretty fed up by then too - and said to her that I didn't expect her to perform any miracles but wanted her to be straight with me, to listen to me and to DIG because I knew there was something very wrong and there was no way it was depression, overwork or stress.

It still took me a while to get my diagnosis because I am one of the few that has negative ANA but we eventually got there and my rheumy kept her word and listened!

Hang in there and believe in yourself - it is the first step to others believing in you :hug:

Katharine

 

[pamela b]

Thanks

Thanks so much for your support.

had a very bad day today. bad night waking with sweats and couldnt sleep for aches.
Had the embaressment of passing out on the toilet at work this morning and getting sent home. Phoned the GP as felt so bad and it was a different one and he was so nice. He says he also would like to test for pituray tumour and addisons ( which my cousin and aunthave ) although I was tested 5 years ago for this at ST James Hospital when I was sent for my thryoid problems and the result never came through
He said that he wants to run this along with the rhemy as if that turns up nothing they must find the answer as this cant go on. ( 2nd time in a month I have passed out )
He has also told me that my as well as low volume red cells at times over the past 2 years ( they test blood because of high liver enzymes results so that they are not soaring higher then 2x normal rates ) my RBC has also been low.
Hooray, someone who doesnt think I am making it up !
Pam

 

[Katharine]

Sounds like you should be actually asking to see THAT GP again

hugs :hug:

Katharine

 

[onetay]

Pam,
Hi and welcome to the site. I hope you have had a chance to read some of the posts in the symptoms area. You might find someone that is just like you.

I know it is hard to understand all that is going on right now, it does seem like you should be looking at seeing a specialist that has a narrow field to find out why this is happening. When you hear low blood count the first thing that comes to mind is that, since it has been ruled out and i am sure she has checked a few other things out too, she is doing the best thing for you.

I hope that you have good news soon and feel better soon also. Keep us updated on what is happening with you please.

 

[Clare.T]

My goodness Pamela
In a bizarre way your passing out yet again might be the turning point in getting you adequate care at long last because you are now in touch with this other GP. I hope he is permanently in the practice and not just passing through and suggest you change to him as your treating GP.
So far it sounds as if your current GP has treated you very badly to the point of negligence.

Many hugs and hoping you will get some answers and effective help very soon

All the best
Clare

 

[KarolH]

I was going to suggest what Keebler told you and take pictures of the rash.

I am sorry your going through so much and sure hope you get situated soon with doctors who care, listen and understand.

The behavior and attitude of your GP is less then desirable.

Let us know how you make out moving forward.:wink2:

 

[Pink Pearl]

Hi Pam and welcome to the board. I will add my vote on there being people here who are "sane" yet have been accused of depressed, psychotic - driven to that one by some docs, anxious, all in your head, garbage.

Like Katharine, I have never had a positive ana. I have been dx with sle for 20 years, but because of the neg ana I should have been dx for a dozen or more years before.

I second the group assement that you keep this newer rheumy. You are on the right path with the rheumy appt and taking photos and keeping a journal of what is going on. Running fevers, onging tired, and now the passing out are symptoms which must be pursued. You may need to see a neurologist for that last one, so don't be surprised if it is one more thing to check out.
Sally