Part three. Useless GP visit follow on from Manchester

[Footygirl]

What can I say? As bad as expected?.

Not received either the barium meal REPORT nor four page letter according to him. I gave him my copy. He glances through it.

I say anaemia would tie in with my increasing tiredness and lack of energy to do minimal things.

He looks at his screens, flit back and forth.

YOU ARE NOT ANEAMIC. I DONT CARE WHAT SHE SAID I AM TELLING YOU ON THE NUMBERS I HAVE HERE YOU ARE NOT,

But I said, her last paragraph asks you to investigate it.

OH DID SHE DO BLOODS THEN? HAS A LOOK, Then changes mind, orders iron tablets and another blood test as

I HAVE NEVER SEEN YOUR BLOOD TEST THIS LOW. HAVE B TEST THEN TAKE IRON.

START PENTAGABLIN SLOWLY INCREASE EVERY THREE DAYS TIL FEEL BETTER OR SIDE EFFECTS MAKE YOU STOP. GOING ON HOLIDAY SO SEE ME ON RETURN THREE WEEKS.

THE LAST BLOOD TEST WAS IN FEB.

WHAT ABOUT NEXT STEP OESOPHAGUS.

I TELL HIM GASTRO SAID OK

HE SAID OK I SAID NO. FLUID OK SOLID NOT.

NO REPORT NO IDEA WHAT GASTRO WANT, HERE YOU ARE SECRETARY PHONE NUMBER,

Speechless really. Basically on my own again though have to be grateful for meds for Fibro. I asked if my symptoms fit Fibro, he said it can fit what you want so broad,

Anyway, exhausted.

Love to all

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Completely forgot about sjorgrens!! Dummy

[AnnNY]

Are you taking Plaquenil, then? That may help with some of your symptoms.

I have a pretty useless GP who I'm going to see on Tuesday after seeing a new specialist, so I don't know how that is going to go either.

[Hidden in reply to AnnNY]

Not surprised you're exhausted. It really is a proper job we do - trying to get these handsomely paid oafs to do their job and ending up having to be expert patient to compensate for their failings! X

[Footygirl in reply to Hidden]

True. Again

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[EOLHPC in reply to AnnNY]

Good luck ann 🍀🍀🍀🍀

[Footygirl in reply to AnnNY]

Thanks Ann. Yes Iam but not high enough I dont think. Will ask rheumy 4/7. Good luck

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[EOLHPC]

😤😤😤😤 that GP you've got: I'm speechless too‼️‼️‼️‼️ well, nearly:

He acts like you're the GP, not him

So, this is a DIY thing?

Ok....when my GP told me point blank that the surgery can't cope with complex patients like me, so I gotta be my own diagnosis & treatment & monitoring coordinator...I did a double take...this particular GP was departing my surgery after 10 years or so there...my husband & I called him dr Google because invariably when we consulted him the instructions we got were: looks like you've got X, go home & google it. Well, at least he was more forthright with the info he gave me before he left re my DIY coordination role....I am lucky though: the GP i see most is supportive & responsive & pretty much what I ask her to (eg referrals, trialing new meds, blood tests, whatever)...but I am indeed stuck coordinating flippin everything: phoning clinics, consultants' secretaries to chase stuff up etc etc...which is kind of manageable when I'm reasonably ok with the cognitive impairment damped down as much as poss 😜😉

Am so sorry footy...after all your efforts...more work for you ...and just when you're feeling extra poorly

Take care, try to go steady dear footy...after that good clinic consultation, don't let this old f**t get you down too low

🍀😘🍀😘

[Wendy39]

Good morning. I've read your three updates now.

Sounds like you have a battle on your hands, which is something you don't need.

I had a positive ANA and anti-RO test back in October 2013. My then great GP said it was SLE but the consultant rheumy said SCLE - which is a sub group of SLE and DLE. I have systemic and skin issues but have no internal organ involvement. I think 20% of SCLE patients go on to get SLE. I was told the ANA and anti-RO combination are specific for SCLE.

I was also told that I was aneamic, later on, by a different rheumy and went to the senior GP to ask for iron. I had an argument with him. GP said you aren't aneamic - none if your bloods show that, ever and you don't need iron. I said but the rheumy is a consultant and she says I do. I was just inside the bottom range but being a menstruating woman with other health issues, she said I needed a supplement. Then you say no. Who am I supposed to believe. And quite frankly I was low, exhausted and had my 3 children off on summer holidays - I was willing to give the iron a go. I was desperate. I cried in front of my daughter that day in his surgery. Horrible man. I left that practice as a result. No compassion or understanding at all.

Let me know if you think SCLE might fit for you.

Oh and finally, my CRP is always 6 or 7, which I have read is consistent with inflammation caused by arthritis. And SCLE main issues tend to be sun, fatigue and arthritis.

Best wishes.

(My diagnosis are: SCLE, osteoarthritis hips & knees, hypermobility, aneamia & varicose veins. I take hydroxycholoroquine 400mg a day plus iron and other suppleness & 2 antihistamine. Currently on steroids for 5 weeks with a view to going on an immune suppressant).

I hope I haven't waffles too much and that it might give you food for thought.

Wendy

[Footygirl in reply to Wendy39]

Hi Wendy, apologies for forgetting your name. Mind went blank when Ipad hiccoughed and I lost one email address with all my late brothers emails on, p,us this forum. It would not let me in. I had logged in originally in an old email address so no chance of remembering adress or password.. Been trying since lost it but HU support eventually gave me an article which solved the problem!

Anyway, looked up SCLE which was interesting. My only skin thing except the itch is awful facial spots. I will start iron this week re anaemia my GP doesnt believe cos his blood results four months old, specialist, three weeks!

No one waffles on here dear!

I wonder if a course of steroids would boost me, but once gone, symptoms would come back.

Hey ho!

Keep on keeping on

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[Freckle1000]

Hi. Just a possibility.

If your ferratin is off and you're anemic it might be worth getting yourself to a gastro specialist and explaining that sjogrens and or lupus can effect the digestive system in many a splendid and colorful way, all possibilities need investigating, Liver, bile duct... everything ! A lot of Doctors forget SLE/Sjogrens can effect the digestive system.

I have SLE and spent a lot of time trying to convince my idiot ex Rheumatologist I also had Sjrogrens as apposed to him thinking the dry eyes and mouth where due to fibromyalgia/anxiety. Deluded moron is too nice a descriptor for this individual.

I'd spent decades using eye drops which eventually led up to two years of extreme dry eyes and mouth . In the end this progressed into an insufficiency in pancreatic digestive enzymes. My iron levels dropped out and (transferren or ferratin ? problems) cant remember which one (apologies).

Extreme fatigue, muscle aches and pains - all symptoms that mimicked fibro, but for me it was due to malnutrition.

I was prescribed Creon: (Digestive emzymes in a pill), and felt very quickly better. Not long after that it became obvious I was having a very large flare effecting other bits and pieces of me and was put on high dose imuno-suppression which eventually fixed the pancreatic insufficiency as well as the other stuff.

If there's still a lot of doubt about your diagnosis, I believe creon is a relatively harmless drug for most people. It might be worth just having a trial run of it to see if it works for you ?

xox

[Patricia2015 in reply to Freckle1000]

Hey Freckle,

Nice to meet someone else who also uses Creon for Insufficiency in pancreatic digestive enzymes :-))

For me Creon Forte helped regaining 10 kilogram lost weight due to malnutrition and "only" on average 4 stools a day instead of 10-12 times bathroom rushes and even fecal incontinence (and back than I was mid thirties and consultants told me to live with it, it was all in my head and wear a diaper....).

I was diagnosed before with Crohn-like chronic ileitis and prescribed Entocort that worked fantastically against my terrible pains after eating but didn't help against the weight loss.

My fatigue however never went away since I became sick 5 years ago. I can now handle it better, work almost fulltime and have a very supportive husband.

I've been diagnosed with UCTD 2 years ago (taking Plaquenil for that) and my biggest problems nowadays are the fatigue and the muscle/tendon problems that cause me severe immobility (I need a wheelchair for distance longer than 15 minutes of walking) since the last year.

[Footygirl in reply to Patricia2015]

Hi Patricia,

Your last para sounds like me. I keep telling them I have tendonitis, classic symptoms in wrist thumg fingers, so disabling, but no notice given. Even worse walking with fatigue, balance probs, now muscle pain and ankles. I too resort to chair, oh joy but cant self propel now which is so frustrating.

My digestion is the opposite of yours. Sorry too much info, but lucky to go x2 a week!

Somewhere in there we three fit! Thanks for Creon ref.

Take care, you are doing so well

Love

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[Patricia2015 in reply to Footygirl]

Hi Footygirl,

Thanks for your reply.

Yes yes very very

recognizable that many doctors only take pain and inflammation seriously when it is in your joints...

I also have the same problems in my wrists and hands. Very painful.

I too resort to chair, but I can self propel on shorter distances or smooth terrain but have to wear my wrist braces with splints. Those braces are really not charming.

Thus when I´m in a chair with those braces on I really look handicapped hahaha.

It must be very frustrating to not be able to self propel. It also depends on the chair, its ergonomics and its weight. I bought a secondhand lightweight (10 kilo) active chair instead of a foldable (20 kilo) one. My lightweight chair is not only fancy to see but also very ergonomic for the person sitting in it and very easy to ride.

Take care too. xxx

[Freckle1000 in reply to Patricia2015]

Hi Patricia,

Pleased to meet a fellow Creonite !

I'm really sorry that you're suffering from problems to the extent that you need a wheelchair for long distance walking.

I must admit, I don't have very good energy levels myself but this is due to a plethora of other stuff - hence my reply is a bit shorter than I would like right now. Must sleep. my main pass time at the moment.

My main problem is SLE, but I'd be happy to chat about more stuff if you like

: )

xox

[Patricia2015 in reply to Freckle1000]

Hey Freckle1000,

Calling ourselves Creonites feels like we have superpowers and to be quite honest we do have superpowers!

I hope you slept well. Sleeping is a big problem for me too. If it is not pain that keeps me from sleeping it is a odd sleepiness that wakes me several times at night.

Yes, the step to getting a wheelchair isn´t an easy one and people look at you and if they dare to talk with you, usually they talk with the person besides you, they talk to you as you were mentally challenged. And even more surprising is when you can get up of your chair hahaha. Most people think only people who have a dwarslaesie are in wheelchairs. People sometimes get really angry too when the see you can actually walk a bit. Very strange.

It helps that my chair has a young appearance and its frog green. If I would change the wheel camber it even could be a very fast sport chair.

I have many symptoms of SLE just not enough to get the diagnosis. I´m always interested in chatting with people who understand.

xxx

[Footygirl in reply to Patricia2015]

Snap. Mine is British Racing Green too! You have such good taste!

I know exactly what you mean. A group of "friends" dropped me cos I met them for lunch and stood to reach the bread basket! Yep. A whole group!

Nowt so queer as folk!

Xxx

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[Patricia2015 in reply to Footygirl]

Wow that definitely proves we have good taste and also we have/had some bad "friends".

Actually my favorite color is green and I love British Race Green but also the Green Apple Green.

About the chair. The color that I meant with Frog green is Apple green as for myself I had Kermit in my mind when writing that hahaha.

I could get a foldable heavy wheelchair for free because of my health condition but instead went searching on the second hand market and after a while I found this sporty chair that had the perfect seat width and almost perfect seat depth (I bought an new cushion that solved that one) and it was Kermit green as well when I went to see it. I was so emotionally, one because I was happy this beautiful chair would make my life more social and two because I was so sad that I now needed a wheelchair.

I bought this secondhand chair for the same price I could buy a new foldable chair.

Yes I too lost some "friends" who didn't understand that one day I can be fine and the next day bedridden and not possible to go to that party or friend's meeting.

I currently have three good friends. My best friend I have since 22 years now, we met at college. My other two friends I met at university (15 years ago) and at my first work place (10 years ago). I also have a very good collegue (the only male between my friends) who I have worked 5 years together and also is a good friend. He is now retired (he is 66 y/o).

True friends don't judge but offer listening and help. They are empathic and not selfish.

That a whole group of "friends" dropped you is shameless. Just shameless. But proves group cohesion and selfishness.

Luckily we have lots of nice people on this wonderful forum who I may consider as true friends.

Xxx

[Freckle1000 in reply to Patricia2015]

Hi Patricia,

Sorry I'm a bit slow in responding. Unfortunately I just checked my messages and I'm off to bed again. I promise to respond properly soon.

ps. I have a brother in wheelchair so I understand a little about it. He loves it when people speak really loudly at him as if he's deaf. Something to look forward too ?

xox

[Freckle1000 in reply to Patricia2015]

Hi Patricia,

Just a quick note to say it is nice to meet you !

And also I don't think there are many people with immune, SLE type problems that can manage a good nights sleep. I know a lot of people on this site are obsessed with it.

Recently I came in contact with a neurologist who is strangely and obsessively fascinated by sleep and claims waking up two times a night is fairly normal, its just most people don't register it. For some reason, people like us are just more sensitive and reactive to it.

I used to think this was a prednisolone problem, but now I think its more connected with the condition itself somehow ? I bet if you posted on the issue you would have a flood of replies and remedies.

I'm having a bit of a battle with SLE kidney problems at the moment - a couple of months ago after a years fight to save them from a flare, they were stabilized but now they're going in the wrong direction again. I'm so dosed up to the eyeballs with blood pressure medications (to keep fluid pressure off some fragile capillaries), and as much as I don't like the meds, they do help me sleep. I still have problems getting to sleep but that's mostly due to thoughts flying all over the place.

Anyway, I thought it might be worth youre while looking up (I don't know whether she is still a current user of this site) but a lady who go's by the title of 'Cuttysark' She has suffered pancreatic insufficiency far more seriously than myself and I think you would have a lot in common to speak about over this issue. The cause of her insufficiency is Sjrogens.

All the best,

xox

[Footygirl in reply to Freckle1000]

Hey Freckle, you blaze of light you!

Thanks so much. I had read and re read ref to digestive probs but could not nail it down. I also thought pancreas because of terrible, rolled into a ball two week pain that started all my gastro probs. Was your malnutrition due to lack of absorption? I stopped eating after Feb and still have to be forced to eat one meal a day by hubby. No interest in food but I read needed thyroid involvement which I aint got !hooray! Ha ha. So, thanks for that. I have lost 3kilo. I am already on Azathioprine which should treat everything, but may be not high enough yet? I sound so like your probs. Fibro Sjorgrens gastro.

When I ring Gastro sec as per lazy useless GP, I shall ask to be re seen and will bring this up, with printed material if I can to back it up. This sounds sooo possible. Thank you thank you thank you.

I will mention Creon and pray it sorts me like you. Oooh I do hope so.

Will let you know

Sincere thanks guru

Love and best wishes

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[Freckle1000 in reply to Footygirl]

Hi Footygirl,

Sorry, I'm a bit slow off the mark in replying.

Please let me know how things go - The digestive tract is such a complex thing.

I've had lack of absorption issues due to the SLE attacking the lining of my stomach. I am definitely not a medical expert. But with 'Atrophic Gastritis' (ie) very damaged stomach lining - a certain digestive chemical that can only be secreted from the stomach lining - sorry I don't know the name of it, but it's meant to be sent from the stomach to the small intestine along with eaten food where it specifically breaks down B12 for absorption. So without a stomach lining, you cant absorb B12 - which in the long term can cause some neurological problems. So its important to get this one tested ASAP.

And yes, the SLE attacking my stomach lining did hurt, but not doubled over type pain. Just a long term nagging stomach ache. Fobbed off as irritable bowel !?!?!?!?!! I've never suffered from irritable bowel........ : [

Beware the patronizing Doctor.

As for pancreatic digestive enzyme insufficiency, It is an absorption insufficiency in that the chemicals you need to digest food just isn't being secreted from the (bile duct?), so essentially you cant digest anything. The nutrients you need are not absorbed through the small intestine. As Patricia said, the food just go's right through you. Way too many bowel movements in one day. Although again, I wasn't doubled over with pain with this one either.

There are so many enzymes and chemical feed back systems in your digestive tract, so make sure your gasto specialist checks everything from liver to bum.

In the interim, just make sure you are on plenty of immuno - suppression while they're figuring this one out.

(not that I can really comment on this) But how much Azathioprine are you on?

[Footygirl in reply to Freckle1000]

Hey Freckle thanks again.

I am on 75mg of Azathioprine which I dont think is high. What I am confused about here is that I have so many extra complaints, many linked to our conditions, the treatment being immunosuppression. I am already on it!! So why the symptoms? Do I just need more? Question to Rheumy next week, though not hopeful. This dose keeps my liver quiet (AIHep) but maybe not the rest??? With AIHep, it is close to bile duct etc so that is another sign maybe?

It is such chaos in our bodies with all that is going on!

Thanks

Love

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[Freckle1000 in reply to Footygirl]

Hello.

Sorry. always a bit slow answering. Didn't mean to over- wealm you with all the dreadful possibilities. (thats a problem with autoimmune thingi's) Just recovering from a bit of a health dip. Promise to reply in more detail soon.

xox

[Freckle1000 in reply to Footygirl]

Hello again Footy Girl.

I come from the era when dinosaurs roamed the earth (48 years old) and have had SLE since I was 15. The only way I can put your Azathiaprine in context is that in my thirties my Lupus was fairly quiet and it was controlled on 5mg of Prednisolone and 25mg of Azathiaprine. Probably considered a lowish maintenance dose ?

Many moons ago I did have what they called back then 'a mysterious hepatitis' badly bright yellow, jaundiced, nausea, the whole - 'liver not a very happy camper' thing.

If I show any Doctor today the medical records from that time they immediately say it was the SLE. I didn't get any extra treatment and was very ill for a year but thankfully the thing resolved itself without help. (Keep in mind I am from the stone age and things have changed) - one tiny weenie little man of a GP told me afterwards "aren't I lucky the liver can regenerate itself"

(yes.....I dare say you are noticing just a hint of my accumulated profound love for Doctors)

Now I will go into my blunt and radical phase. If you have any doubts about your Rheumatologist, please, please please seek out a Lupus Specialist.

Even if you don't have Lupus, they are the only ones competent enough to deal with a dodgy immune system in any form. (I'm from Australia - so please excuse different terminology - But you may even be better served by having a generalist specialist who has one of his main specialties in the Gastroenterology field who will work along side a Lupus Specialist.

I'm currently under the care of a Nephrologist/Generalist Specialist - and I've never had a better Doctor overseeing my care. * Not all Rheumatologists are SLE or Immune system educated !!!

Also, If you have been diagnosed with Fibromyalgia my adamant advice to you would be to deny it - even if you have it. In my bitter experience Rheumatogists and GPs will use this condition to fob you off so they don't have to bother attending to the more serious and complicated aspects of what your immune system is doing.

I apologize if this sounds horrifically cynical, but when I was with my last Rheumatologist he became so utterly fixated by Fibromyalgia and its various psychological aspects, that I couldn't get any help from anybody as my kidneys were hurtling full pelt toward failure. For this 'Doctor' ?? - Fibromyalgia was really just code for Hysterical Neurotic. I know this as I have read his medical correspondence.

So hence the more justifiably anxious I became about being ill, the more the doctors thought 'Oh' that anxiety is obviously causing her Fibro to flare. My GPs where essentially brainless sheep bowing to specialist opinion despite me telling them very plainly what was going on.

I do come from an isolated rural area where medical standards are not that high - so I am hoping this scenario is something you would never have to worry about. I am also presuming you have a less sexist medical culture over there so this won't be an issue for you. I just thought I should bring it up as a potential - and hopefully rare issue to be aware of.

After this last fibro negligence happened, I gutted my medical records, took out all references to Fibro and changed medical practices and specialists. All my current Doctors have no idea I have a Fibromyalgia Diagnosis and I plan to keep it this way.

Lupus Specialist !!!!!!!!!!!! Go for it.

xox

[Footygirl in reply to Freckle1000]

Hi Freckle

Thanks so much for your long reply, you must be exhausted. I will pm you in reply.

Love

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[Footygirl in reply to Freckle1000]

Add in now not absorbing B12 as mentioned can screw up brain fog and lots of other things

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[misty14]

Hi Footygirl

I'm speechless too at your GP's attitude. I think you need a change ,even if it means a change of practice!. Sometimes a fresh mind can work wonders.

Good luck for your PIP assessment, thinking of you, keep scoring.X

[Footygirl in reply to misty14]

Thanks guru

Gremlins got me but I am back. Yeah, change is an idea but who to? This surgery was gold standard, not much choice here.

Dreading Thursday but I can only do etc. Will refresh my memory with what I sent in. Ive got Specialist letter adding Sjorgrens and Fibro, even if now that may change re above.

Your spiritual support will buoy me up. I hope they wont make me jump thru hoops, hardy ha ha. Not well at mo.

Anyway, my loins will be girt.

Fingers crossed. Wish it was Friday

Love

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[misty14 in reply to Footygirl]

Hi Footygirl

Let us know how you get on, fingers crossed for you. Specialist letters should help. X