Does anyone else have this problem?: Does anyone... - LUPUS UK

LUPUS UK

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Does anyone else have this problem?

BabyOleg profile image

Does anyone else have this problem? I had bloods done and the results went to my rheumy but instead of letting me know the results they just did nothing no contact with me at all. It took me to have to go through his secretary to find out the results all came back ok, only for him to send a reply saying I asked you to have these bloods done during a flare not just have them done. I did have them done on day one of a flare I was the one who had to tell my gp surgery that I can’t have them untill untill I’m symptomatic -

What’s really frustrating is

I currently have red rash on both eyelids and swollen eye lids. I walk up the stairs and I am stripped off all my energy and have to lay down, and I have a on and off temp up to 38oc

How can I have normal bloods I just can’t get my head around it. Its making me feel so low. Especially when my last bloods my kidney function was at 60% -

My gp said he’s 99.9% sure I have an autoimmune - all my symptoms point to lupus yet my bloods have all settled to normal apparently

74 Replies

Lots of people with AI disease don't or can't mount an immune response. My bloods are always normal during a flare yet I obviously have an infection and am very unwell.

The immune system is very complex. 200 different strand to the immune system that we know of. Still so much more to discover.

Joe Bloggs might have abnormal bloods but AI patients won't always. It can also depend what meds you are on. If you are on immune suppressants or steroids that can affect your results.

BabyOleg profile image
BabyOleg in reply to happytulip

Thanks for that response hun, it’s brightened up my day a bit. I hate that 2 years ago I was a completely different person health wise and I just can’t get my head around where this has all come from or why it keeps happening. Its too much sometimes

BabyOleg profile image
BabyOleg in reply to BabyOleg

Or maybe it’s been slowly progressing for years and I have just seen them all as isolated events.

in reply to BabyOleg

Im the same aswell. Been diagnosed recently slowly accepting it but cant get my head around how it happened.

BabyOleg profile image
BabyOleg in reply to

There so much too it it’s a lot to get your head around - I feel like a human pin cushion these last few months 😂

in reply to BabyOleg

Haha i know...its all learning curve. Im just going with the flow when did you get diagnosed?

BabyOleg profile image
BabyOleg in reply to

Iv been battling this for the last year and all I have so far is from the rheumy: we think your progressing to a AI , and from my gp: I’m 99.9% sure you have a AID , but because my bloods are not playing ball for them they won’t diagnose me. I have a photo album of everything that has happened since day 1 there’s over 200 photos of rashes, raynards, swollen hands, swollen joints, fixed dilated pupil. Hair thinning, Eyelid paralysis, temperate documentation. You name it Iv got evidence just to prove I’m not going insane ... they told me I am pretty much lupus but without the blood work they won’t allow me to meet criteria for a diagnosis... so I’m between the angel and the devil

in reply to BabyOleg

Ohh see this is why things get out if control because the like to turn a blind eye for so long. Im lucky i got diagnosed within a month. Even my bloods came back bad twice and i looked rough all my doctor used to say is.. "what do you want me to do about it" he then finaly admitted me because apparently i would keep doing his head in. 🤷🏽‍♀️

They just dont care which is sad...its shame they need something bad to happen in order to actually hear people.

BabyOleg profile image
BabyOleg in reply to

Omg that’s awful! I’m so glad you got a quick diagnosis! That’s brilliant. (In a strange way) yeh I feel like a lot of people ignore stuff untill it gets to a point where you can’t. I think I went back and forth to the doctors over the last 4 years with thinning hair and they never bothered once to even try and work out why - now I’m left with permanent thin hair right at the front of my scalp. I hate it. I don’t think I can deal with another year of this without something to help me. I spend my life applying steroid cream to rashes and taking meds to get through the day but I guess that’s somthing I better get used to - how are you at the moment? Xx

in reply to BabyOleg

Would you consuder going private?

My hairs thinned loads 😥 i was recommended to take biotin so started that. Fingers crossed.

Yeah its better knowing then not knowing i suppose. Being young and diagnosed is the worst ever. Ahh man its horrible as steriods only really mask things dont they. Im okay tryinf to be postive and get on with life just changed my diet so hooefully it will help. 🤞🤞

BabyOleg profile image
BabyOleg in reply to

I have considered it but tbh I just can’t afford it, it’s so expensive. How long have you been on biotin? Have you noticed any difference?

Yeh diet is important when your struggling with your health. I would like to think I eat quite well but then I also go through phases where I just want to eat rubbish food and I defo feel the effects of it after really isn’t doing me any favours. Iv been trying to loose a few pound recentlyas lockdown did me no favours 😂 and I swear it used to be so easy now it’s stubborn as dirt - it doesn’t want to go anywhere

in reply to BabyOleg

Literally 3 days so not yet but sill keep you updated after 2 weeks.

Im like that when i eat bad i feel it in my body next day. Amazing how it changes in a click of a finger. Loll walk it off thats what i did during lockdown maintained my weight.

BabyOleg profile image
BabyOleg in reply to

I used to be so up and down with my weight one minutes Iv gained a stone then next Iv lost it and it was like that for a couple of years since lockdown I just put the weigh on and can’t get it back off .. mind you I’m not nearly as active as a I was a few years back

in reply to BabyOleg

I became horrible thin when i was sick in march, hoping to put it on or steriods would help me but it doesnt help. Its hard putting it on to. I dont like myself this thin makes me look ill. Lol

BabyOleg profile image
BabyOleg in reply to

I’ll donate you some of my excess weight - I don’t have loads but your welcome to anything that I no longer required to keep me warm through the winter 😂😂

in reply to BabyOleg

Haha sounds like a good shout 😂

KayHimm profile image
KayHimm in reply to BabyOleg

Will it really make a difference if you see another rheumatologist? You will still look like lupus without positive labs. This is a real dilemma. Sometimes they will biopsy the kidney to get the diagnosis. Have they mentioned a biopsy of your rash?

The rheumatologist may have a plan when he sees you next. You could make money by selling your case to a medical school for teaching purposes. 😅

My friend had a patient like you - some thought ANA negative lupus, some thought not. Her kidney biopsy ultimately showed lupus nephritis and her labs, I think, became positive.

I do think they are going to be able to diagnose you. So sorry for the long time to get there. Remember it’s the illness, not you. And not your doctors.

MEGS53 profile image
MEGS53 in reply to KayHimm

How are you, Kay???

😘😘😘

KayHimm profile image
KayHimm in reply to MEGS53

Hi Meg!

I am doing surprisingly well. I have three more radiation treatments to go and thus far have only light burning. The GI issues can be unpredictable and it won’t be clear how much damage is done until the radiation is over.

Did you have radiation? Did you have a systemic reaction? I got low grade fevers, aches and nausea. The radiation oncologist thought it was inflammatory. I was a bad patient. I went against the oncologist who thought low dose steroids was too much of an infection risk and I took 5 mg prednisone. Counts were high, had just come off home infusion chemo. Those steroids - even at such a low level - made me feel so much better that I went out to dinner with my brother who was here taking care of me.

How did you do with treatment? How are you now? You probably had a lot more chemo.

The radiation oncologist said patients with autoimmune disease tend to have more side effects. They watch us very closely.

😘 Kay

MEGS53 profile image
MEGS53 in reply to KayHimm

Hi KayThanks for the update. I probably missed it, but I'm unsure what type of cancer you have. Whatever, you sound as though you're coping very well with the treatment and if low dose steroids make you feel better well, what the h*ck!!

A bit of light burning is to be expected, indeed the left side of my chest still gets suntanned more than the right even with minimal exposure to the sun!

Although the tumour in my left breast was caught early, it was growing very close to my ribs, which meant quite extensive radiotherapy was necessary. I didn't have to have chemo (thankfully!) but I have to take Letrozole for life as the cancer was oestrogen driven. I agree, radiotherapy also made me feel awful and completely drained for a long time. It reduced my already low white cell count and I got a very nasty infection in my jaw, which re-appeared several months later. Not good!

Anyway, it's upward and onward for you. I'm so happy you are getting appropriate treatment, but please keep us updated with your progress.

You are one very brave lady.

Take care, 🤗🤗🤗

KayHimm profile image
KayHimm in reply to MEGS53

Wow - you had some serious side effects. That jaw infection must have scared you and your doctors.

I have anal cancer - rare and related to HPV even though I never had an abnormal pap.

Thanks so much for the encouragement!

Many hugs and 💕

Kay

MEGS53 profile image
MEGS53 in reply to KayHimm

Oh my goodness, Kay, that must be very painful. Not to mention very rare. I do think that being immunosuppressed has more consequences than we realise.

Please take care and continue on your road to recovery. And do keep us updated.

Sending hugs and very best wishes,

🤗🤗🤗😘😘😘

KayHimm profile image
KayHimm in reply to MEGS53

🤗🤗❤️

I can’t speak to the follow up with labs. My doctors in the US like for me to call and give the number of days to expect results.

I was like you with signs of autoimmune disease and normal labs. The one thing I can say is they do seem determined to try to pin this down. I have actually never hear of a rheumatologist wanting bloods done during a flare. Sounds to me like he is concerned you have autoimmune disease but your labs aren’t cooperating and he hopes maybe they will be positive during disease activity. Keep tracking those temperatures. That documents that something is not right. I also had low grade fevers.

I used to wonder, too, how I could feel so awful and yet no one knew what was wrong. 😫. It is not uncommon.

Very much feeling for your predicament.

xk

BabyOleg profile image
BabyOleg in reply to KayHimm

Because I’m so new to this rheumy thing I don’t no what is normal or not which is why I get so frustrated when they don’t communicate with me -I asked my rheumy if he would call me to discuss the results today and his secretary messaged me back to say that he is going on annual leave now so I will have to wait for the face to face (that I never even knew I had) next Friday with the consultant. How long did you have normal bloods for before they started showing signs have you been diagnosed now xx

KayHimm profile image
KayHimm in reply to BabyOleg

Really does sound confusing. Maybe you will get a letter with the follow up appointment.

I had elevated ESR anemia early on. When I first saw the rheumatologist, the VDRL came back falsely positive. That is now the anti- cardiolipin test. I think it was about four years later - after Caribbean vacation when I got fever and rash - that the ANA was positive. So it makes sense the rheumatologist is trying to get blood work done when your illness is active.

It’s really nice to hear that they don’t usually do that as it makes me feel like maybe they do care a little 😂 that’s a first for me anyway. I spent the last 6 months feeling like a hypercondriact and thinking it was all in my head

Klutzy profile image
Klutzy in reply to BabyOleg

It’s not in your head and don’t let doctors make you feel that way. I’m sorry you had to endure so much, and some of it I can relate ti, especially your comment above about ignoring symptoms. I did thar fir so many years with my neurological symptoms. Once I finally went to a doctor and then a neurologist, they made me feel like I was crazy.

Months after I saw neurologist, I started getting intense joint pain , stiffness and swelling of knuckles. Before that my joint pain and stiffness was sporadic, so I ignored it. I had a slight deformed pinky and both doctor and neurologist had no clue what it was. But they didn’t care to figure it out.

Then since fall my autoimmune symptoms cave noticeable, red knuckles, hands constantly swelled at knuckles and more pain. I continued to ignore things, until my elbows become red, pain in my ankles and now swollen wrists. I’m waiting for Rheumy results. I did test elevated on ESR and CRP, and showed Rheumy, along with pictures. So I may not have all your symptoms, but I know how awful it is to be stuck in limbo. Hang in there!

BabyOleg profile image
BabyOleg in reply to Klutzy

Sounds like you have been through a tough time .. how are your joints now? X When do you get your results do you know? X

I hate the not knowing and I hate how hard it is to speak to anyone these days.

I know somthing isn’t right because last year I was full of life and beans and this year I struggle some days to get out of bed - it’s awful.

Klutzy profile image
Klutzy in reply to BabyOleg

You know your body better than anyone, so keep fighting to get answers. Yes, the not knowing is the worst and doctors are too quick to disregard if your symptoms aren’t textbook.

I’ve had weeks like you where the pain and fatigue was so debilitating I could barely move. I still have all the joint pain, swelling and stiffness. Plus my neurological issues of numbing hands, feet, weak on one side of body, losing fine motor skills, occasional blurry vision and unsteadiness on feet, etc is still progressing.

The odd thing is both the doctor and neuro saw I couldn’t stand on a leg, saw I couldn’t walk a straight line and saw diminished/absent reflexes on one side of body a s saw I had a tongue spasm. They disregard all that with my deformed finger. SMH still!

I had to go to chiropractor because my neck pain was excruciating ( just dealt with for years) and couldn’t take it anymore. She first thought I had MS and said my deformed finger was nothing. Even when I showed her my swelled/red knuckles, she disregarded and said my issues were neurological. Then she ordered ESR and CRP to help me eliminate things. When she saw they were elevated, she urged me me to see Rheumy.

I see Rheumy again next week. She wouldn’t elaborate on what autoimmune disease I had, if any. Yet she said he could tell there’s a problem w/ my joints and said my knuckles and elbows were definitely red. She ran 12 blood tests, 3 urine tests and did several X-rays. She also told me to see neurologist and said I should be tested for MS. Funny I now have 2 med professionals, both women, say the same thing. Yet the doctor and young neuro, both men, didn’t even do any tests. Like you, I’m frustrated, mad, tired , a d feel like my body has betrayed me.

Here’s how bad my swelling has gotten on the wrists. So it took 4 & 1/2 years for me to really pay attention to autoimmune stuff. Once a doctor is condescending and dismissive, it’s easy to lose hope and doubt ourself. Do not let them defeat you!!!!! Find a new doctor and rheumy if needed, but don’t do what Ibdid and give up.

Swollen wrists
BabyOleg profile image
BabyOleg in reply to Klutzy

Oh your poor wrists! :( have you had any results back yet? Or you have to wait for your appointment - yeh I document everything now even the smallest insignificant thing. I get neuro problems, fixed dilated pupil and paralysis of my left eye lid. but my doctor is trying to link it to a rare blood disease which I don’t have 🤣 he was trying so hard bless him just to find me a diagnosis but I got to be honest I don’t just want any old diagnosis haha! That won’t help!

Klutzy profile image
Klutzy in reply to BabyOleg

I have to wait til next week to see Rheumy. Hopefully I won’t have to keep seeing her to get answers. I’m with you that I don’t want any disease. But who really died?

KayHimm profile image
KayHimm in reply to Klutzy

Limbo is awful!!!

KayHimm profile image
KayHimm in reply to BabyOleg

Find me a person with autoimmune disease who hasn’t felt like a hypochondriac at some point in the diagnostic phase and I’ll introduce you to a robot whose rusty parts looked like rashes.

When a doctor says “likely autoimmune” that most definitely means they know there is a serious process going on. They just don’t do that, especially with a negative ANA.

It certainly sounds to me like your doctors care about you. You are a challenge, though, and they have to use the old brain to sort through this.

By the way, most people who come on here with a possibility of lupus, even with a low titre ANA, are told outright by the rheumatologist that it isn’t lupus if the picture doesn’t fit.

Doctors first look at the clinical picture. Your clinical picture sounds to them too much like lupus to not keep pursuing.

KayHimm profile image
KayHimm in reply to BabyOleg

And these are expensive tests! The NHS would not like a doctor running the lupus panel every three weeks. 😅 He knows he can justify it.

BabyOleg profile image
BabyOleg in reply to KayHimm

Very true! 😂 yearly budget spent on me in 3 months alone... hahahaha!! Joking..

Yeh I feel like they would have discharged me after initial visit if they didn’t have concerns so I need to remember that. I wonder what will be said at the face to face. Would they discharge me on the basis my bloods are fine but all symptoms are still happening? Or would they keep me under there watchful eye.

KayHimm profile image
KayHimm in reply to BabyOleg

Well, I can only guess but after telling you “likely autoimmune disease” and with a classic malar rash, I can’t imagine they won’t watch for new symptoms and re-test.

The rheumatologist may be comfortable treating your joint issues. If he sees inflammation, that makes a difference. You might mention that.

The dilemma is in giving you a drug with a high risk profile when they aren’t 100 percent sure. They often biopsy the kidneys in ANA negative lupus. I don’t know under what conditions they do this, though.

The rheumatologist will also talk to your GP so that they are on the same page. My GP was told to keep an eye on me. He did.

So, no, you will not be discharged. But they may both be monitoring you and waiting for symptoms. These illnesses evolve. They usually don’t appear in one day or even after years. 😫

BabyOleg profile image
BabyOleg in reply to KayHimm

Yeh my doctor sat on the phone umming and arring at my latest flare - said there all trying to desperately get me diagnosed but doesn’t no what else they can do. So I feel there pain too. It must be frustrating for them sometimes too. I wish there was a quick fix, but I am not blind to the fact I know this is a long road ahead of me. Just sucks. I’m sat in work now with my eyes flared and so so sore. I look like I have been beaten up 😂 but I can’t keep applying steroid cream because I will have no eye lids left soon so I’m stuck with dermal haha! ... the problem is I’m one of those people who are awful untill the day of any important appointment and then I am miraculously cured for that specific time frame booked in with the doctor or consultant 😂😂 EVERY SINGLE TIME! Haha!

Klutzy profile image
Klutzy in reply to KayHimm

At least you guys have universe health care. Our HC is outrageous in the US, and most, like me, can’t afford our high deductibles. I paid out of pocket seeing Rheumy, over $1100.

KayHimm profile image
KayHimm in reply to Klutzy

Just talking to my cousin about this issue. She really needs testing for Celiac but she would end up paying for the whole work up - looks like they want a colonoscopy if test is positive. It really is a nightmare.

I am from the US too. I don’t want to think about my out of pocket expenses over the years. It would be too depressing.

Xk

BabyOleg profile image
BabyOleg in reply to KayHimm

I’m greatful for our forever struggling nhs I don’t think I could cope having to pay out every time I needed a scan or a test or an appointment. I don’t no how you guys do it. I pay £400 a month out my wages to national insurance for the rest of my life, but I would definatly rather do that and not have to worry about paying for healthcare unless I wanted to go private. Whereas you guys in US don’t have the choice do you? Why don’t they just do the same across the border? Maybe I don’t no enough on this subject - Iv never really though about it ... interesting though

KayHimm profile image
KayHimm in reply to BabyOleg

Yes, you are fortunate. And because they are ruling out a serious illness you won’t be put on the last of the priority list.

The US health care system is a abominable. Actually most of our system is private. But costs are prohibitive and doctors don’t always take insurance. That means you pay out of pocket. My rheumatologist charged me $500 for a televisit. Will let you know how much I get back. 😟

Klutzy profile image
Klutzy in reply to BabyOleg

Many Americans, like me all wish we had some universal health. If you’re super low income or lower income w/dependents you can get Medicaid, with much covered and low copay. And if you’re 65, you get Medicare, which you pay for but it’s way less and much covered. If you’re middle class, you pay outrageous. And if you’re upper middle class and above, you can afford it.

Huge problem is health care is tied to employers here, unless you’re on Medicaid and Medicare. So if you switch jobs, you have to wait for health care to start or pay astronomical cobra prices. And many employers have bad coverage with deductibles that can cost thousands and then high copays.

Sorry for my rant but it’s so disturbing to me how my medical issues can leave me in massive debt. If I have RA or Lupus, I can’t afford the $1000/month medication.

Klutzy profile image
Klutzy in reply to KayHimm

Yes it’s a nightmare and depressing. I make too much for Medicaid, and I’m too young for Medicare. Many people I know are foregoing seeing doctors because it’s too expensive. Prior to 2008, I had phenomenal health insurance, low deductible and almost zero out of pocket. Only in the US can serious health problems bankrupt someone. I would move to Canada if I could.

KayHimm profile image
KayHimm in reply to Klutzy

I could cry when I hear these stories. I just read an article about a new trend toward paying a GP a monthly fee for total care. This is not concierge medicine. It made so much sense. The doctor eliminates the insurance company and gets good rates in labs and imaging. Where do you live? I am happy to see if they have these practices in your community.

Klutzy profile image
Klutzy in reply to KayHimm

I’m in WI. That’s kind of what I’m doing w Rheumy. I’m paying cash so get a discount because not going through insurance. I’m a little perturbed though that Rheumy ordered so many blood tests because of my bill. Before initial blood tests that chiropractor ordered, she was going to refer me to finally get MRI. I was quoted $4500 for it, not a hospital. Then my friend in another part of state found one for $900.

KayHimm profile image
KayHimm in reply to Klutzy

That is the problem with specialists’ fees. They tend to need more expensive diagnostic blood tests and sophisticated imaging. Oh, those rheumatology tests are wildly expensive. I wish I knew how to get those costs down.

With a serious chronic illness people will usually have high out of pocket costs because of the horrendously high deductibles.

I know drug companies will work with patients. If you get on a costly biologic, do not hesitate to ask for a lower cost.

This is just unacceptable. You should not have to be dealing with this.

Klutzy profile image
Klutzy in reply to KayHimm

Very true. And yes it’s outrageous a d me and millions of Americans shouldn’t have to pay so much just to see a specialist.

KayHimm profile image
KayHimm in reply to Klutzy

Take a look at Badger Care Plus.

Klutzy profile image
Klutzy in reply to KayHimm

Thanks but my income is too high for Badger Care. With no dependents, a person on it can’t make more than $800/month.

What bothers me is my friend has 2 kids under 18. For their entire life, they got Medicaid. She made more than me and got almost everything covered. Her kid broke his leg, and she only paid $20. She’s engaged to a guy who makes almost triple what I do. Yet even after her marriage, she said her kids will still get the Medicaid. WtH!!! They will have a combined income of more than $130,000. This is outrageous!!!!

KayHimm profile image
KayHimm in reply to Klutzy

Oh, that is too bad. You are in the bind people talk about. Yes, Medicaid can be great if you qualify. In NY it even covered taxis for children to get to and from the hospital. I was happy about that because it would be hard to see children with cancer riding the subways.

I’ll keep thinking. There may be a better solution for you. If you need biologics, I think the insurance company will work with you. My cousin’s daughter has MS and she gets discounts on her medications even though she has insurance.

xk

Klutzy profile image
Klutzy in reply to KayHimm

It’s not just me. It’s all of the middle class. The ACA screwed things up for the middle class, making health care now unaffordable for too many. Good on the taxis covered for people w kids who have things like cancer.

KayHimm profile image
KayHimm in reply to Klutzy

True. It’s anyone who doesn’t have good employer health insurance or isn’t rich enough to pay the $10,000 deductible with ease.

For most people insurance is now really catastrophic insurance, right? People can’t afford the routine care - and that is the care that can get the cancer diagnosed early, get the diabetes under control, treat the lupus.

It is unthinkable that the richest country in the world - the most technologically advanced - cannot get adequate health care for its people.

Yes, it was actually easier to work in a hospital that served mainly Medicaid patients. I felt good about the care these children got, and that the parents did not have to be burdened with bills like those with insurance did. They ended up getting donations to build a beautiful children’s facility, so at least there was some justice.

Klutzy profile image
Klutzy in reply to KayHimm

Aww that’s nice for those kids and parents. Our country’s problem is greed. I read something thatCEO’s are making 300 times more than workers. My income never bounced back from Great Recession. Yet the upper middle class, those making $100k abd more are flourishing. Their raising up prices for everything. Yet the middle class is being squeezed out. It’s discouraging a d depressing. I have an advanced degree (not in STEM area, but I worked in nonprofit, which doesn’t pay. I should’ve gotten my MRS degree instead of my MA.

KayHimm profile image
KayHimm in reply to Klutzy

Yes! And the wrong priorities ..

Hi. Sorry you are having a tough time. Is it worth you asking for a second opinion from your gp? It may instigate them to make further investigations which will hopefully get you referred to hospital? Fighting fatigue in this muggy weather is really tough. Bloods can come back normal if They are doing the basic fbc. You probably need additional blood tests. Keep persevering. I know we don't like to make a fuss but sometimes it is the only way. In the meantime be kind to yourself and listen to your body.

BabyOleg profile image
BabyOleg in reply to PositiveT

My partner said that, but I’m one of those people that I am scared to question anyone or ask for a second opinion as I don’t want to upset or annoy anyone. I know they are probably doing everything they can for me right now but I guess when I feel awful and throw myself a pity party I just feel like the world is against me

PositiveT profile image
PositiveT in reply to BabyOleg

Yes, sometimes it's hard to promote yourself as you feel you are "making a fuss". I understand.

All I can say is after years of caring for my late Mum I learnt the hard way and sometimes you do need to persevere.

Whatever you choose to do I hope your symptoms ease off a little bit soon. Chin up I'm sure your Doctor will come up trumps in the end. 🤞

🍀

Yes, did mine on a day my joints were awful, had gastritis and could have pushed Sleeping Beauty out of bed to make way for me. All bloods in the normal range and rheumy impressed with how things were going. Irony, bloods taken two weeks earlier when I was great - slightly raised. Joy of the mystery of Lupus. Get more annoyed when GP do bloods, liver counts raised and they don’t tell anyone as deemed unimportant.

BabyOleg profile image
BabyOleg in reply to Hamptons

It’s when you know what your levels are normally like and when they raise or suddenly drop mega - because there still in “normal persons” range and don’t flag up on an individual basis. They don’t pay any attention. That’s frustrating. I have a friend who’s normal body temperate is 35.9 so when she has a fever her high temp is classed as 37.3 but everyone ignores it because it’s classed as normal range. But for her she’s really sick with that temp.

Hi Baby 🤗 I hope u don't mind me just calling u baby? Makes me sound cool..like a seventies dude...hey baby!! 😹Blood results don't always give the right picture to a doctor that only looks at blood results!! I'm glad that you will be having a face to face with the rheumy coz he/she will give u a thorough examination in order to build up a picture of how u are affected. It's a long process for many of us (about seven years in my case) the average is six years so u are being looked after..it just might not feel like it right now.

There's also no 'cure' or quick fixes with autoimmune conditions..it's more of a long haul marathon than a sprint!!

Keep taking pics n reporting in your symptom diary..including things like what the weather's like..have u been in sunshine or another source of UV (indoor lighting really makes me ill too)..what have u eaten that day? That kinda thing so u can try to build up a picture of anything that might be making symptoms worse. You are not crazy but your immune system is..n it's a very complicated system!! It takes a long time to get a handle on it n u will be learning all the way. 🌈😽😽Xx

BabyOleg profile image
BabyOleg in reply to Krazykat26

Haha I read it like a cool dude from a film would say it .... “smooth” haha! Course I don’t mind :) x The only problem with photos is they never quite look like it does in real life does it haha! The amount of times Iv sent photos to my gp and used the caption, the photo doesn’t do it justice it’s so much more angry than it looks x

But I have my very own rheumatology album in my phone now. Iv never thought to document triggers but tbh I’m not entirely sure what triggers it. Maybe when I’m stressed or feeling run down... I can’t tolerate heat anymore - and I don’t no if this is a ‘thing’ but my skin can’t tolerate hot showers anymore it’s like it burns my skin.

So many wierd and wonderful things going on lately

Krazykat26 profile image
Krazykat26 in reply to BabyOleg

Know what u mean about the photos 😹 I've never been much of a photographer anyway but trying to take pics of my skin is so awfully hard as it doesn't portray the 'feeling' of the rash, splits in fingers n feet..especially when you're feeling ill!! My hands get really shaky so many of my photos come out blurred etc n I very often just give up!! My advice is to note everything even if u don't think it's relevant. I also have a very weird reaction to water n I can't shower anymore. With my symptoms it seems like I've turned into a Gremlin...bright lights n water turn me into something much less cute n cuddly!!

Stress is definitely a trigger as is heat n UV. No matter how mad it sounds jot it down..u don't have to mention it to docs if u don't want to but it will help u to build up a picture on how to manage your symptoms. 🌈😽😽Xx

BabyOleg profile image
BabyOleg in reply to Krazykat26

A gremlin 😂 I feel like I’m becoming more of a hobbit haha

BabyOleg profile image
BabyOleg in reply to Krazykat26

Hope your feeling ok :)

I feel the same, I get frustrated when told the blood test is fine when your body is not and these consultant doesn’t listen to you. I can tell something is not right with me as I feel extremely tried, an depressed most days

BabyOleg profile image
BabyOleg in reply to Jerg

It’s so frustrating! I wish everything was just put on to a portal that you can just view yourself. And then talk with someone if you need to

BabyOleg, It is obvious we can all relate to the craziness of labs versus symptoms. One thing that the doctors might not really look at, but you can whether your results are in the "normal" range or not is the pattern. I can get a graph of past results and see where things fluctuate. For the longest time, my white blood count was high which is assumed to be from prednisone. Then it started to go down. The last bloods it was almost below the norm. I don't know if if means anything, but I am still on the same dose of prednisone. It will be interesting to see where it will be in my next labs. Since I had Covid in Nov. and still have lingering symptoms, that may be the culprit. None of my doctors have noticed the drop in the WBC because it in still although barely in the norm. I personally thing the changes in bloodwork mean something. Don't give up. Trust your instincts. I wish I could say don't get frustrated, sad, etc., but when dealing with AI issues and feeling like no one is truly listening, it is impossible. Just be gentle to yourself and know that we all understand.

Healing hugs.

BabyOleg profile image
BabyOleg in reply to Pumpkin2009

My white blood cell count had dropped recently to this... I don’t no why? I have just had another panel done and I really want the results to see if they have dropped again.. But it’s still quite in range.. so maybe it’s ok??

Results

Just a thought, but have your bloods been checked for anti-C1q antibodies? I had loads of tests for AI that came back negative over a period of years and so no medic believed I had auto immune disease, although I did.

Was tested for this antibody ( which has since dropped to normal range even though my symptoms are raging) and was strongly positive. Diagnosed with a lupus like illness -urticarial vasculitis syndrome as a result and finally being treated with meds.

I hope you get the help you need soon. Hang on in there and don't give up- it took me over 20 years to get this far! 🍀🍀🌻☀️🌈

BabyOleg profile image
BabyOleg in reply to Hoofprints

I haven’t seen that on any of my tests so can’t say I have but I guess I could ask for it maybe? Would be interesting. I want to know what my actual Ana level was but I’m not sure how to find out. On my doctors online thing it just says no known normal range - and then no further action needed

Hoofprints profile image
Hoofprints in reply to BabyOleg

Yes you can request the test. Here's a link that explains about the condition

vasculitis.org.uk/about-vas...

You could also ask for a copy of your blood results to check the ANA level.

Good luck 🍀🍀🍀🌻☀️☀️

Thanks for this Hoofprints. I've joined forum recently after having ongoing kidney issue following long covid.

UA: +++ haematuria, +++ leukocytes ......but no protein (so wouldn't be normal case of LN).

GP ordered renal ultrasound, and then non contrast CT, through 'NHS Cancer Two Week Wait' - both clear.

CRP is measured regularly - always normal so I've been sent away with guys saying no evidence of infection, inflammation or autoimmunity. ESR had been done twice in 5 years - usually weeks after original appt when I had problem - both times normal.

I recently requested ANA (which I learnt about by ringing an immunology test lab) and it was 1:320 speckled.

Have loads of renal pain this week. Culture again clear so no infection. So nothing being done....it is scary.

I've been quite open with GP surgery as have had other symptoms of a/i disease for years and of course inflammation markers being normal meant it looked like nothing was wrong.

Last week a GP said that I should not be upset with them as they were taking my case very seriously and I was one of their patients they were most concerned about out of all the patients they have. It was a lovely in a way to hear, and I felt so reassured...

I've just requested C3 C4 test after learning watching a complement seminar online. Having test done at my GPs on Monday.

If these are low, I'll ask for anti-C1q test. Found an article which says in the Introduction:

" Complement activation in SLE is predominantly due to the interaction of a C1q component with the immune complexes, which is the first component of a classical complement pathway. Deficiency of C1q leads to autoimmunity, associated with impaired apoptotic clearance and appearance of glomerular apoptotic bodies. Deficiency of classical complement components such as C1q and C4 is strongly associated with the pathogenesis of SLE"

ncbi.nlm.nih.gov/pmc/articl...

Google doctor has become a friend...

Maybe this is the cause of renal pain I've had since February, and which has got much worse this week. Another thing to check out... very grateful ...you are a star⭐, thanks 👍 .. and bless🙂

Good luck. I hope you get answers and help soon.

Maybe get the blood tests done more than once if negative the first time. As with a lot of AI disease, they fluctuate and aren't always positive -as I say, mine have reverted to normal for the time being.

My ESR and CRP have never been elevated either, although as others have pointed out, you can have a reading that is high for you personally although within the normal range

My ferratin is recently raised - normally always low - and I was told this in itself can be a sign of inflammation.

There are others here on this forum with experience of kidney involvement. They can better advise you in that respect, and also as to whether getting to the right doctor might mean you get a kidney biopsy to clarify whether you have AI involvement going on in those organs.

Crossing my fingers for you 🤞🤞🍀🍀🍀🍀🌈🌈🌈 Keep us all posted 💐

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