Confused by my rheumy?s statements

[MirkeshCat]

Hi there!

Well - here is an update to all of that. I just got my hands on my new rheumy?s report written to general physician.

It basically says: Yes, there is no doubt that the patient (me!) has Sjogrens Syndrome. All tests hint to that (SS/A, SS/B, RF, ANA). Yet my rheumy also states that all the various symptoms discribed by the patient can hardly be blamed on Sjogrens (extreme fatigue, sensivity to sunlight and heat, joint pain...). He goes on to say that in his opinion the patient is really suffering from a somatization disorder as there are no signs of an active inflammatory-rheumatic disease.

I am very angry and stunned. Yes, my CRP is always negative, yet my blood sedimentation rate, monozytes, gamma-globulines and alpha2-globulines are regularily highly increased. How can that "specialist", that rheumy, make such a statement? It all gave my general physician more "ammo" for his theories and he immediately suggested again that I put myself together and start to do excercising daily.

What do you think of that?

[litliwlowa]

Yes, there is no doubt that the patient (me!) has Sjogrens Syndrome. All tests hint to that (SS/A, SS/B, RF, ANA). Yet my rheumy also states that all the various symptoms discribed by the patient can hardly be blamed on Sjogrens (extreme fatigue, sensivity to sunlight and heat, joint pain...). He goes on to say that in his opinion the patient is really suffering from a somatization disorder as there are no signs of an active inflammatory-rheumatic disease.

I would be as confused AND ticked at the contradictions in rheumy's report. Does your wife accompany you to your appts? As an advocate, I mean.

My previous PCP, who initially referred me to rheumy to be assessed for Sjogrens AND possibly scleroderma, didn't even LOOK at me from her computer screen until I brought my then SO to appt. Then she actually EXAMINED me for the first time in three years.

I am seronegative for Sjogrens, tho my rheumy is treating me for Sjogrens-Primary. Even my sed rate was zero initially, but my inflammation was quite visible and there was no doubt of the Sicca symptoms in my eyes, mouth, nose and "bum". Plus I already had one diagnosed AI (Hashi's) and endo had suspected for a couple of years another AI lurking in the shadows so to speak.

I would suggest bringing an advocate to future appts for a while, such as your wife.  And... perhaps it would also be helpful to print out some info about the manifestations of Sjogrens for your next appt with PCP.

And consider changing PCP/GP

[Carolina]

Hi MirkeshCat,

I'm sorry you're going through all of this, and it is pretty much 'par for the course' as most of us have experienced it.

I wish that everything were clearer and easier, and somehow I"m not getting my way on anything.

1  a) Profound fatigue b) Body Pain c) Depression are the universal symptoms of Immune Mediated Conditions.

2. Medical Science does not know very much about our Immune System, and can only use the tests they have to test the conditions they associate with those tests.

3.  The General Public and most doctors, including most Rheumatologists do NOT know the first two points.

4.  I have had Immune Mediated conditions all of my life, accelerating rapidly in the past 15 years.  Only at age 71 was the true unifying diagnosis made.  Primary Immune Deficiency Disorder.  My Immune system is so weak that it cannot DEFEND my body against infections AND in its confusion it ATTACKS my body instead.

5.  I live in a highly medical family:  my husband is a medical research Immunologist who did research and taught in a Medical School in Boston for 25 years.  My son is a doctor.  Six of my sisters-in-law are nurses.  I have always sought out the best possible medical care, and I deal very professionally with medical professionals.  And STILL my conditions have been dismissed as somatization!  Yes, Mirkeshcat, I have been told to 'get over it' 'get more exercise' 'stop being so self-centered'.

6. I have seen therapists, psychologists and psychiatrists for years on end since age 30.  That's 42 years (I'll be 72 in March).  That has helped me enormously with my personal growth.  It did not change my Immune system one single bit!  It did not change my pain and the progress of deterioration.  It did not create one iota of acceptance in my family for what I experience on a daily basis.

My current research Immunologist is working to understand Immune Mediated conditions.  With understanding will come better tests and better treatment.  And while we wait, we do our best to live with our conditions.  And seek those medical professionals who are the best and brightest.

For many that means great amounts of time and money spent in the process.

Keep us posted Mirkeshcat on what is developing for you.

Hugs, Elaine

[Days Off]

MirkeshCat - I have found it hard to explain to doctors and friends exactly how I feel with the fatigue.  I think the only person who really gets it is my wife.  It is extremely frustrating to think that someone who is supposed to be helping you is sitting in front of you doubting what you are telling them.  If I were in your shoes, it would be awful hard to not wish this disease upon your new rheumy so he could see that it is indeed not in your head. 

If you haven't had your testosterone tested lately, you might want to get that checked.  Mine was low at 226.  I'm also a 37 year old male.  The testosterone level for a healthy male our age should be in the 600-800 range.  Since I've started testosterone injections, my quality of life has improved dramatically.  The fatigue has all but disappeared. 

Good luck and hope you get to the bottom of it quick!

[cccourt1942]

CAT.. I am fairly new..to this site and SS.  I don't have Graves.  I am 71 and can easily trace this syndrome in me to my late 40s.  I understand what you are saying.  You have lived in your skin and finally receiving an EXPLANATION as to why you have had various symptomotolgies is such a relief.  It lets you know you DID feel and experience those unusual times and events...and they are NOT in your mind.  As various people state on this board, no one in your family or circle of friends will understand, want to hear about your symptoms/diagnosis, or treat you with anything but boredom (and/or disbelief).  Ignore them..and stay on the board where you can receive support. 

I am going to digress a bit...but stay with me:  I have a 72 year old cousin.  She had polio as a toddler...her feet, ankles and Achilles tendons were affected.  I will spare you her life details.  She lived as much a normal life as I did or the next person...till about 20 years ago.  Now she suffers Post Polio Syndrome.  Her neuropathy advanced rapidly in her feet and ankles till she has no feeling in them at all.  This has NOT stopped her--merely slowed her down.  HERE IS THE KICKER and relation to where you are:  there are no doctors who know post polio.  Polio has not been taught in medical school in decades (unless it's the history of it) and NO ONE had a clue the virus would raise its head in later life.  She takes each problem / symptom on on her own.  She is thriving.  Now then ....not all rheumatologists are interested in esoteric syndromes as they study.  Your doctor may be the best in actually diagnosing...but not so much in listening to what is really bothering.  It is extremely likely he just does not know. 

The person who suggested sleep apnea is a great thought.    My suggestion is to see a physical therapist.      This could help you know if it is in your limbs or something internally causing the fatigue.    In the last five years I have taken a nap when I complete a workday.  I put it off  to old age.  The SS dx was the best news I could hear just why I was "sleepy" so often.  I feel better just understanding.  I never thought of being sleepy as being fatigue.    I was being too hard on myself.   Give yourself a break and allow your body to replenish itself.  Do not worry about why you are tired right now.     Today walk a block once.  Tomorrow, twice, etc.  Don't feel weak because that is all you do. Listen to your body.  Continue to search for a more knowledgeable Rheumatologist...or hope your present one will take up the banner and read up and learn to treat you and other SS patients more thoroughly.  So many people are geographically challenged for excellent care. 

Don't make an appt. with a psychiatrist yet  ...ha, ha.  Try pilates and/or yoga to help you keep up stretching and strengthening. You will run again...you don't want to be complete mush when you start again.  You do not need to do cardio @ 3 miles per day while you work full time unless you have a heart condition you didn't mention.  Even if you do, work up to a mile...then two then three. 

It's frustrating getting to where you are now...and you are still in shock and a bit confused due to lack of physician's direction for you.  Find a group in your area. 

Good luck.

[sewandsew]

Has your thyroid been checked.  Hashimoto disease sometimes makes you tired and is common with other AI issues.

[MirkeshCat]

Has your thyroid been checked.  Hashimoto disease sometimes makes you tired and is common with other AI issues.

Yes, it?s been checked and they found out I?ve got Graves. But my TSH levels are normal at this time (around 0.30).

[MirkeshCat]

Guys, I thank you all so much for your very supportive answers and I appriciate them very much. It is good to know that there are people like you out there, even if on the other side of the big pond 

[Scottietottie]

TSH Levels of 0.3 is the low end of normal I believe so I hope they keep monitoring you. As far as I know - in the US - TSH normal is 0.3 to 3 (In the UK its 0.5 to 5 and quite honestly 5 is way too high!

I feel best when my TSH is suppressed - like round about 0.07 but I know at that level it freaks my doctor out. I think she will be OK if its about the 0.1 mark. (Ongoing blood tests to try and get it stabilized)

Take care - Scottie 

[litliwlowa]

MirkeshCat

Since lab reference ranges can be different per lab AND per country...it's helpful if you are comfortable with it to share the lab reference range on the respective test(s) as well as the results.

Here's an example of my TSH results amd you'l;l see what I mean about variances in lab reference ranges:

Name TSH
Standard Range  0.450 - 4.500 uIU/mL (I am in US)

5/10/13    4.450
7/2/13    12.710
9/24/13    8.390
12/5/13    4.940
1/22/14    3.500

TSH is only part of the picture. Ironically, where you see above my TSH rocketed to triple the high normal - my FT4 and T3 values were within normal limits (low end normal and dropping). Yet I was symptomatic throughout that period. So Endo upped my T3 replacement compound. (Jul-Sep). Sep 2013 was ordered by rheumy AND endo to go gluten-free. Finally in Dec slightly high TSH and per my request Endo agreed change nothing until we saw values in Jan 2014. That is the FIRST time since surgery in 2008 that finally we have stabilized my thyroid levels to purring like a kitten.

ALL thyroid levels stabilized FINALLY. But as previously stated, I would encourage you to have a consult with an endocrinoloist. Especially as you have a dx of Graves. Thyroid problems can cause all manner of problems. Thyroid is part of the endocrine system. And a good endo will have working knowledge of AI's. It was actually my Endo who suggested 3 years ago that I likely had another AI under the radar.

Hugs

Amanda

[warmwaters]

I think most of us have gone through this crazy idea that fatigue is not part of Sjogren's. Here's a good survey article on the topic http://www.ncbi.nlm.nih.gov/pubmed/20147445.   

Most rheumatologists remember the "dry eye/ dry mouth" that they learned in school, and treat those symptoms. Only a handful have enough experience to go beyond this.  Since you are in a rural area, and may have limited choices on rheumies, you may want to find some articles and share them with your current rheumy, and see how he responds to the new information.

Personally, my first rheumy was determined that if I got into a good exercise program, my fatigue would disappear. She was a very well trained rheumy, and was an athlete herself, so she had a lot of faith in exercise. I tried and tried, but ended up worse and worse after exercise. She wouldn't believe me, and told me that I was hysterical.

I ended up seeing a different rheumy, who believed me, came up with a very carefully supervised physical therapy program, with basically the same results.  BUT, she believed me. Throughout all of this, my inflammation number are in normal ranges. I have been assessed for clinical Sjogren's and do have it based on SS/B and lip biopsy, etc.

Some of the possible approaches to treating fatigue include: assess for additional issues (as have been shared by others). Relaxation techniques, gentle exercise (like tai chi), immunosuppression (drugs like prednisone, mexothrate and Cellcept dampen the immune response), anti-inflammatories.   It's a long journey to find out what the best mix for your is.

Best of luck on finding the right people.

[aussie mum]

I think most of the people on this board at some stage have been told to have counseling or to exercise more.
My daughter (diagnosed at 17) was once told she needs to exercise for 10hrs a week. We were both absolutely flabbergasted at that statement.
   
As the outcome of your Rheumatologist visit wasn't so good, it might be worth seeking a second opinion from an Immunologist.

Good luck, I hope you get answers and feel better soon.

[Jasper]

In the past, on the rare occasions when I was not out right ignored, I have been told by my PCP that my problems were all due to getting older and to weighing too much. If I exercised more, lost weight, (and got younger), my problems would go away. So I know the feeling of being told that basically it is all in your head and there is nothing wrong with you and, in addition, it is your fault that you don't feel good. Well, I fired those doctors and got me some new ones. Now I have a gem for a Rheumatologist.

My Rheumatologist always asks me about fatigue, sensitivity to sunlight and heat, skin issues, joint pain, dryness, and many other symptoms that she knows are connected to Sjogren's. When I tell her the symptoms that I have, she always says they are connected to Sjogren's.

My hand and wrist x-rays show severe osteoarthritis, and no erosive changes, but my Rheumatologist, when she feels my joints on every visit, always says that she thinks that there is some inflammation there as well.

Most of my lab work is normal. All I have is the positive ANA and the positive SS-A and the low Vit D. The rest of my blood tests come back within normal limits every 3 months when she checks them. Yet, even without the blood inflammation markers being elevated, she feels there is inflammation.

Bringing an advocate along  is a good idea. It is sad, but some doctors need to know there is a witness. Or, if possible, try to find a better Rheumatologist.

Best of luck.

[MirkeshCat]

Hi there, it?s me again from Germany with a little update.

I decided to write a letter to my ex-rheumy who basically said I HAVE SJS but actually I am also a case of somatization disorder. The letter is in German and pretty long, so it does not make sense to post it here. I just told him in the letter about all the symptoms that can occur with SJS and attached a lot of sources from books and websites to educate him. At the end of the letter I informed him that I would never return to his office again. I also sent a copy of the letter to both my general physician and my intern. As you can imagine I never got a response from the rheumy. My intern told me that the letter was very good and she liked it and that every patient had the right to write such a letter.

Despite the ex-rheumy telling me that I was basically all psycho I went to see a pneumologist near my hometown because I have severe air hunger from time to time. He was so friendly and kind and HE completely understood the symptoms of SJS that I suffered from. "Of course, fatigue is so common in SJS patients!", is what he said. Ok, to make this short, he ran some tests and then came the horrific diagnosis - I may be in the early stages of lung fibrosis. He will have to run several more tests like a biopsy or CT scan. But if I really have lung fibrosis, can you imagine how much anger I feel for my ex-rheumy? That nerd declares me a psycho when in fact I might have a potentially deadly fibrosis!

Other than that I also found a new rheumy in Munich, Germany. That is rather far away from where I live but I would do anything to find a good doctor. My appointment there will be next Wednesday. I will let you guys know what she said.

Thank you all again for your kind replies! You really gave me strength!

Mirkesh, from Bavaria

[litliwlowa]

I have severe air hunger from time to time. He was so friendly and kind and HE completely understood the symptoms of SJS that I suffered from. "Of course, fatigue is so common in SJS patients!", is what he said. Ok, to make this short, he ran some tests and then came the horrific diagnosis - I may be in the early stages of lung fibrosis. He will have to run several more tests like a biopsy or CT scan. But if I really have lung fibrosis, can you imagine how much anger I feel for my ex-rheumy? That nerd declares me a psycho when in fact I might have a potentially deadly fibrosis!

Way to go, Cat!! The lung issues alone can contribute to fatigue. Yes, I can imagine how angry you are at that rheumy. Unfortunately, part of our respective journeys involves advocating for ourselves, and encountering a few frogs along the way. So when you think about that rheumy, visualize him as a toad. , as he sure wasn't a prince from your description of your experience.

I would add that one of the challenges is that medicine has become so specialty focused that unfortunately it sometimes involves several specialties to get to the root of all of our medical issues. Thankfully you did consult with a pulmonologist. That is outside the realm of rheumatology unfortunately, although rheumy (in my view) SHOULD have at a minimum referred you to endocrinologist for the Graves. Graves can also cause significant fatigue. And NO, it is not imaginary fatigue at all. Been there done that.

If it does turn out to be lung fibrosis, thankfully it sounds like your pulmo caught it at the early stage.

Hugs

Amanda