Author Topic: Does anyone else here feel very viscose?  (Read 998 times)

MAT51

  • Hero Member
  • *****
  • Posts: 701
  • Hashimoto's, SN RA, Primary Sjogren's, SFN
Does anyone else here feel very viscose?
« on: March 07, 2018, 12:56:54 AM »
By this I mean that my Sed rate (we use plasma viscosity here) is very high always but it recently reached giddy heights, my Creatinine is elevated, my IgG and IgA are always slightly elevated and my CRP is always elevated - as often are my RBCs. At the same time my spit is extremely viscose - consistency of runny jelly and a bit milky. It keeps choking me during the night causing a sticky cough and much throat clearing. 

My eyes have only the smallest layer of mucin possible apparently - left one has strings of mucin showing it’s thick andexplaining why my left eye feels blurry all the time.

I spoke to my rheum on the phone and she’s taken me off Cellcept cold turkey saying we can’t monitor you disease activity because in SS the benefits are too unclear (it was to help my SFN) to warrant the risks. Okay I get that it’s not working for the neuropathy and it may even be causing this to worsen. But I do have other underlying system symptoms of SS that she’s not acknowledging apart from the neuropathy. And anyhow renal problems can cause SFN.

So I explained by letter and phone - seemingly in vain, that I feel that being very viscose everywhere is my own way of self monitoring and dislike the idea that my inflammatory bloods mean nothing to her because apparently Sjögren’s sufferers often have viscose blood regardless of how active their Sjögren’s is.. She and the vascular doctor say this means I’ll always be very viscose in my blood as part of Sjögren’s so they can’t use sed/ PV to monitor me. But I feel there are degrees of viscosity and I can tell when I’ve tipped into one where certain forms of vasculitis or even cancer might be lurking. And I’m in one now.

So I emailed her with photos of my hands and of my BP swings and told her of my family history and pointed out that since I went on highest dose of Cellcept I notice that my ANA dropped a titre, there was no more trace blood in my pee and my BP normalised, Creatinine had dropped to normal as had IgG. She didn’t seem to engage with any of this apart from my joints - which she thinks is relapsing remitting RA - because she’s got it into her head somehow that I have essential hypertension. But is it? I don’t think so.

Personally I think I have CKD stage 2 with my SS and Cellcept was helping my kidneys if nothing else.

And no one is monitoring this cyst beyond eGFR which is okay because it’s been gt60. But my very large, irregular kidney cyst might be growing or have become diseased or some other cause no one is looking at for my longstanding fine tremor and rigidity in face instability in knees and one finger.

Even for me this isn’t my normal - I’m viscose and stretchy and very dizzy all the time! And now there is trace blood back in my pee today I’m told by the nurse monitoring my bloods and BP. They assume it’s a UTI or kidney infection but I know it’s not. It is something more underlying to do with my tremors, dizziness and high viscosity everywhere.

Basically it’s part of my Sjogrens flaring!
« Last Edit: March 07, 2018, 01:17:46 AM by MAT51 »
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

anita

  • Hero Member
  • *****
  • Posts: 2430
Re: Does anyone else here feel very viscose?
« Reply #1 on: March 07, 2018, 06:12:05 PM »
I replied on the other thread...sorry.  Didn't see this one until after I replied.

But one additional comment on the kidney issue.  Not well known, but Sjogren's can cause inflammation ON the surface of the kidney, making it hard for ADH hormone (that controls urine concentration) to be absorbed.  This can cause conditions like Diabetes Insipidus (NOT the same as diabetes from sugar/glucose intolerance).  I have this and it's called Nephrogenic Diabetes Insipidus.  Being that you have high inflammatory markers, I would not be surprised that you have some inflammation on the surface of the kidney as well.  I'm not sure, however, whether this directly effects kidney function.  I don't think so.  Irish would know.

Do you have frequent and dilute urination?
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

MAT51

  • Hero Member
  • *****
  • Posts: 701
  • Hashimoto's, SN RA, Primary Sjogren's, SFN
Re: Does anyone else here feel very viscose?
« Reply #2 on: March 08, 2018, 12:18:32 AM »
Hi Anita. It’s morning here now so I’ve read both your replies and am grateful for them. The hard tummy could be just the gas but my wound became very infected after 3 days and no one noticed until too late and blood poisoning had kicked in. So if in any doubt go see your doctors - it’s in such a vascular area. But I’m so glad you were proved correct about it and the removal has already worked!

Yes I do pee an awful lot and it’s usually very pale. In fact I don’t know how they find trace blood in it at all. I drink volumes too but have assume that’s Sjögren’s. You are a minefield of rare conditions aren’t you?! Poor you it must be such a juggle between them all. I looked up diabetes insipidus but found no mention of Sjögren’s or autoimmunity as potential cause but will take your word that it can be. Only Lithium? 

I had my monthly bloods done yesterday - would it show up in estimated GFR or elsewhere I wonder? My bloods usually make me look as if I’m quite dehydrated - RBCs usually slightly elevated, Creatinine etc. But the Sjögren’s doctor said raised Creatinine is Sjögren’s - she wasn’t sure why I have an elevated CRP or often slightly over RBCs. Diabetes Insipidus sounds like a possibility but goodness knows how I’d raise it with my doctors as it’s rare and my BP is back to normal after intro of betablocker and raise in BP med, blood glucose is always normal and no one seems overly concerned that I somehow landed a diagnosis of essential hypertension without then looking for underlying cause first.

Would diabetes insipidius explain the tremor surge perhaps? My instincts say that something really isn’t right but while the cough was plaguing me they kept saying virus and Mycophenolate/ Cellcept. X
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

MAT51

  • Hero Member
  • *****
  • Posts: 701
  • Hashimoto's, SN RA, Primary Sjogren's, SFN
Re: Does anyone else here feel very viscose?
« Reply #3 on: March 08, 2018, 10:58:58 AM »
I replied on the other thread...sorry.  Didn't see this one until after I replied.

But one additional comment on the kidney issue.  Not well known, but Sjogren's can cause inflammation ON the surface of the kidney, making it hard for ADH hormone (that controls urine concentration) to be absorbed.  This can cause conditions like Diabetes Insipidus (NOT the same as diabetes from sugar/glucose intolerance).  I have this and it's called Nephrogenic Diabetes Insipidus.  Being that you have high inflammatory markers, I would not be surprised that you have some inflammation on the surface of the kidney as well.  I'm not sure, however, whether this directly effects kidney function.  I don't think so.  Irish would know.

Do you have frequent and dilute urination?

Just to update you Anita. It seems I have what my GP described as “very mucky pee”. My eGFR is still greater than 60 so he says that I need treating for a UTI straight away as my temperature was a bit raised too (very unusual for me!). I explained about Diabetes Insipidus but he said he feels that drinking a lot is not the same as DI as this would have me drinking constantly. He feels chronic UTIs, some mild renal involvement, tremors etc are all well acknowledged complications of Sjögren’s as is thirst, SFN and high viscosity and I just need a good rheumatingist overseeing my care. He is confident that my rheum is very good.

He has referred me back to ENT for assessment of my longstanding dizziness. X
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

anita

  • Hero Member
  • *****
  • Posts: 2430
Re: Does anyone else here feel very viscose?
« Reply #4 on: March 08, 2018, 07:14:52 PM »
DI isn't easy to diagnose and only confirmation is a water deprivation test...and is done in ICU.  The test itself is dangerous.  I can tell he doesn't know all that much about DI, as drinking constantly isn't true.  Most drink a lot since they pee a lot, but it doesn't have to be constantly.  During the test you can't have ANYTHING for 24-36 hours...not a sip, no food (as ALL food has water in it, believe it or not), and if your pee is frequent and STILL pale and dilute, (with proper testing for specific gravity) then positive.  So you don't have to drink all the time and DI will still cause you to have dilute urine.  It takes an endocrinologist (GOOD ONE) to properly test for DI.  After almost 48 hours and NO water from any source, my urine still looked like water.  And sadly, it is directly related to Sjogren's....isn't it always???

I saw a doctor that felt same as your said about drinking and I didn't drink 'constantly', but Birnbaum at Hopkins talked to other expert Endos at Hopkins who said it was only about the specific gravity, not just drinking, and they felt I fit profile, did the test, and it was very positive.  Then they confirmed the inflammation on the kidneys that keeps the ADH from being absorbed to concentrate the urine.

BTW, the "mass' is not gas...it is a mass.  I called doctor and they had me come right away.  Doctor feels it is large internal hematoma.  The fresh bruising is sign of active bleeding, so he ordered ultrasound for tomorrow morning to see if there is 'free-flowing' blood, or if it just the hematoma and bleeding stopped now.  I had stopped my blood thinners today and not to restart until after doctor calls tomorrow with results.  It's always something!!  I have NEVER had a surgery without complications...never.  ugh
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

Lamberti

  • Newbie
  • *
  • Posts: 1
Re: Does anyone else here feel very viscose?
« Reply #5 on: March 10, 2018, 02:21:31 AM »
Thanks for shedding light on this, Anita. I didn't know about all those details so I'm glad I've read your post.

MAT51

  • Hero Member
  • *****
  • Posts: 701
  • Hashimoto's, SN RA, Primary Sjogren's, SFN
Re: Does anyone else here feel very viscose?
« Reply #6 on: March 12, 2018, 02:30:38 PM »
DI isn't easy to diagnose and only confirmation is a water deprivation test...and is done in ICU.  The test itself is dangerous.  I can tell he doesn't know all that much about DI, as drinking constantly isn't true.  Most drink a lot since they pee a lot, but it doesn't have to be constantly.  During the test you can't have ANYTHING for 24-36 hours...not a sip, no food (as ALL food has water in it, believe it or not), and if your pee is frequent and STILL pale and dilute, (with proper testing for specific gravity) then positive.  So you don't have to drink all the time and DI will still cause you to have dilute urine.  It takes an endocrinologist (GOOD ONE) to properly test for DI.  After almost 48 hours and NO water from any source, my urine still looked like water.  And sadly, it is directly related to Sjogren's....isn't it always???

I saw a doctor that felt same as your said about drinking and I didn't drink 'constantly', but Birnbaum at Hopkins talked to other expert Endos at Hopkins who said it was only about the specific gravity, not just drinking, and they felt I fit profile, did the test, and it was very positive.  Then they confirmed the inflammation on the kidneys that keeps the ADH from being absorbed to concentrate the urine.

BTW, the "mass' is not gas...it is a mass.  I called doctor and they had me come right away.  Doctor feels it is large internal hematoma.  The fresh bruising is sign of active bleeding, so he ordered ultrasound for tomorrow morning to see if there is 'free-flowing' blood, or if it just the hematoma and bleeding stopped now.  I had stopped my blood thinners today and not to restart until after doctor calls tomorrow with results.  It's always something!!  I have NEVER had a surgery without complications...never.  ugh

Just wanted to add that I hope the haematoma settles down. Have you tried Arnica tablets? This is what I had for my huge haematomas after giving birth - first time blocked my urethra so had to be catheterised - ugh! X
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

anita

  • Hero Member
  • *****
  • Posts: 2430
Re: Does anyone else here feel very viscose?
« Reply #7 on: March 12, 2018, 07:29:47 PM »
Never heard of this...but will do some research online right away.

Saw surgeon today.  Bleeding is slowing down, but had to restart blood thinners yesterday, so hoping it doesn't turn in the other direction again.  Also got results of ultrasound from Friday and it shows very enlarged bile duct...just my luck.  He ran dye through during surgery and it was open, so hoping that this is just result of surgery (said he has seen it before).  I'm not jaundice and not having any nausea.  he said he's not ordering MRI just yet (as with my pacemaker, Johns Hopkins is only place in US to have MRI done), but if my symptoms change or jaundice starts, then he will get it done.

He also had pathology on the gallbladder...it showed chronic inflammation.  So I feel confident the gallbladder was, in fact, causing all my problems.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

MAT51

  • Hero Member
  • *****
  • Posts: 701
  • Hashimoto's, SN RA, Primary Sjogren's, SFN
Re: Does anyone else here feel very viscose?
« Reply #8 on: March 13, 2018, 01:54:35 AM »
Fingers crossed for you that no jaundice etc. Until recently I’d say the year I had my gb removed,2015, was worst ever for serious amounts of pain. I don’t think my GB removal made any significant difference as it had been sitting, entirely dysfunctional, for years with no inflammation or infection. Just one huge stone the size of a bird’s egg.

But for the last eight weeks, since having a cold virus - I’ve been so unwell. Over 3 weeks since I came off Cellcept cold turkey at rheum’s instructions and all is excruciating pain - a mix of lacerating SFN everywhere and electric shock pains through my pelvis, knuckles, toe joints and knees. As I can’t tolerate most pain meds, apart from paracetamol,  I’m just lying in bed in a permenant stupor of pain. I phoned GP and the reception said a nurse will phone me later this morning to arrange for another pee sample to see if kidney infection is still there. I took Septrin for 5 days but just couldn’t cope with the side effects in the end.

I feel this enormous flare shows that Cellcept was actually helping my SFN/ RA a lot as haven’t had this kind of all body flare since I started it.  X
« Last Edit: March 13, 2018, 01:59:58 AM by MAT51 »
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

Linda196

  • Administrator
  • Hero Member
  • *****
  • Posts: 4994
Re: Does anyone else here feel very viscose?
« Reply #9 on: March 13, 2018, 03:17:54 AM »
There is an unusual complication of surgery called SIADH, syndrome of inappropriate anti-diuretic hormone, which causes symptoms similar to DI, and is also diagnosed (and treated) with fluid restriction. The difference is that there is no alteration of the hormone long term, and after some time (two years for me following a hysterectomy) it resolves spontaneously.

The fluid restriction is very unpleasant, and my Endo even warned me before the testing started that I'd probably feel worse from that than the surgery, and he was right!
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

MAT51

  • Hero Member
  • *****
  • Posts: 701
  • Hashimoto's, SN RA, Primary Sjogren's, SFN
Re: Does anyone else here feel very viscose?
« Reply #10 on: March 13, 2018, 09:18:14 AM »
Thanks for this Linda196. I haven’t had surgery recently - it’s Anita who has. My GP phoned earlier and said he thinks we should test for DI. He never mentioned the dehydration test but just asked me to bring in two separate urine samples and have a blood test. This sounds way too simple to me but I’m guessing that, if positive then I’ll be sent to the endo for the fluid deprivation test. The pee sample I handed in today was quite concentrated in appearance as I took it mid morning after a night of drinking and peeing. Hoping that means I don’t have DI. But if I do then it would explain why my blood tests often suggest I am dehydrated despite having drunk loads. 
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

MAT51

  • Hero Member
  • *****
  • Posts: 701
  • Hashimoto's, SN RA, Primary Sjogren's, SFN
Re: Does anyone else here feel very viscose?
« Reply #11 on: March 13, 2018, 11:17:03 AM »
PS i forgot to say, re inflammation on kidney - my left kidney has a very large, irregular cyst. Apparently these are common and benign but my GP thinks it may be worth investigating nonetheless due to consistently raised CRP. I certainly feel something is not right because I don’t have cystitis at all and yet I have pelvic and kidney pain a lot with microscopic haematuria and whacky BP
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

anita

  • Hero Member
  • *****
  • Posts: 2430
Re: Does anyone else here feel very viscose?
« Reply #12 on: March 13, 2018, 06:22:35 PM »
I have heard of this, Linda.  My DI diagnosis came when I had no surgery...so this wasn't an issue.  I remember the endo talking about this syndrome as they kept asking if I had had any surgery recently...which was no.

My DI is called nephrogenic DI.  This type of DI isn't the result of a low level of ADH being produced, it's that the inflammation on the kidneys won't allow the normal level of ADH to be properly absorbed...causing DI symptoms.

My DI was diagnosed several years ago.  I just had surgery 10 days ago to have my gallbladder removed.  Thankfully there hasn't been any increase in DI symptoms since my surgery.

I'm curious, Linda.  Does this syndrome actually cause the ADH level from the pituitary gland to drop?
« Last Edit: March 13, 2018, 06:31:36 PM by anita »
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

anita

  • Hero Member
  • *****
  • Posts: 2430
Re: Does anyone else here feel very viscose?
« Reply #13 on: March 13, 2018, 06:27:20 PM »
You had mentioned the cyst on the kidney before...this is why I thought of DI with you (the nephrogenic vesion).

They cannot tell just from 2 urine samples whether you have DI...but they can tell whether you need further testing (if the specific gravity of the samples is very low---showing very dilute urine).  The blood test is likely to check your ADH level.  But again, with nephrogenic DI, the ADH level is normal...because it's NOT the lack of ADH production causing the DI...it's the inability of the ADH to be absorbed into the kidney due to chronic inflammation (which Sjogren's is known to cause).

**I also have microscopic hemeturia for YEARS...like 20 years!  They never found out why.
« Last Edit: March 13, 2018, 06:29:09 PM by anita »
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

Linda196

  • Administrator
  • Hero Member
  • *****
  • Posts: 4994
Re: Does anyone else here feel very viscose?
« Reply #14 on: March 14, 2018, 05:36:57 AM »
Anita no, it actually causes an unsuppressible release of ADH, causing high levels.

I probably had my episode because I had two risk factors coincide; I have Sarcoidosis, which can be a trigger, and the surgery kind of put me over the top.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld