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fed up with a lazy Rheumatologist!


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#1 summer

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Posted 05 October 2010 - 01:27 PM

As many of you might have read in a previous recent post, I am on the borderline of being anemic. I have contacted my rheumatologist, who I haven't seen for approximately 10 months, to ask for an appointment, to see her at the Scleroderma Clinic. I was following the advice of my local doctor that I needed to see her.

I have just got off the phone to her, after I had left 3 messages, for her or the Scleroderma nurse to call me back.

She had a copy of the blood test results that I had done with my local doctor, and basically said, that my iron storage levels were on the lower end of normal, and that there was nothing she could do. Maybe I am over reacting, but this is what my results are.

Serum Iron 11.5 (9.0 - 26.0) ranges
Transferin 2.82 (2.10 - 3.80) ranges
Saturation 16 (13-51) ranges

Ferritin 12 (Pre menopausal 10 -220)

(post menopausal 15 - 220)

I am Premenopausal, last year, my ferritin was 59, this is why my local doctor, thought that there is something wrong. My Red Blood count, is 4.70 on the 29/9/2010 which is normal, the ranges being 3.80- 5.50. But, on 2/7/2010 my Red blood count was 4.89, still normal, but dropping slightly.

Another thing I mentioned was my dry burning eyes and dry mouth, she said there was nothing she could do. Suck on lollies or chew gum.

I get to see my Gastro doctor towards the end of November, I am hoping that he can help.

Sorry for the rant, but I am sick off being fobbed off, unfortunately there are not a great deal of rheumatologists in Australia.

Best wishes,

Summer :emoticon-bang-head:

#2 enjoytheride

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Posted 05 October 2010 - 03:09 PM

Summer I do understand, I have just asked people hear to forgive my own rheumatologist rant.

I wish we could establish a teleconferencing system for our disease. So many people here have so many different responses that it would be so nice to have a source that can put it all together. My own rheumatologist told me in our first visit that her aunt died of scleroderma so I thought she would really be up on it but she seems to believe that nothing can be done for the condition and it turns into a self-fulfilling expectation.

I guess if you have 5000 people in your practice and most of them have RA or Lupus, then you tend to read up on that before anything else. One of the reasons to go to a sclero specialist if you can.

I am grateful to the people here as I have asked several times for a test or something that people here have mentioned and the doctor has done them. A life raft in a sea of uncertainty.

#3 Shelley Ensz

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Posted 05 October 2010 - 04:02 PM

Hi Summer,

Please keep in mind that I'm not a doctor, that I have no medical training at all; barely enough to qualify to self-administer a band-aid. I'm sorry you feel upset with your rheumatologist, but I think you have encountered a fairly normal situation.

My guess is that it's probably the mainstream thing to not treat for blood test results that are in the normal range. However you could probably look up information on the internet regarding 'normal' ferritin levels versus 'optimal' levels. In many instances the Normal range is so huge that some people on the lower end of Normal are actually experiencing symptoms (from whatever is a tad low.) For example, I know that for many years my thyroid was within the defined Normal range on most tests, but I was still symptomatic. Then, voila, they revised the Normal range, my doctor drove my thyroid down to the lower range of normal, and I finally started getting relief from low thyroid symptoms. It was totally delightful, and very long overdue!

So consider the idea of still working with your primary care doctor to see what can be done to optimize your levels.

Dry eyes and mouth might be a part of Sjogren's; have you been diagnosed with that yet, or are you frustrated to have your symptom report ignored? I do know how that can be! For the dry eyes, consult your opthalmologist and ask them to run a Schirmer's test, which is a simple enough way to document dry eyes. Then take that report to your next doctor visit. Also, the next time you see your dentist, ask them whether or not you seem to have normal saliva. They can peek inside and tell by the general dryness (or moisture) and even see saliva spewing from the glands. Or they might even find another cause for the burning sensation, such as an infection or something. Anyway, whatever you find, get a copy of your dental record and take the pertinent parts with to your next doctor appointment.

Your local doctor can substantiate the findings and then at your annual (or whatever) rheumatology visit, your rheumatologist will have a full deck of info to deal with. Not that much can be done anyway. I use eye drops for dry eyes, when I can't stand it anymore, and so on, and don't take any special medication for Sjogren's, even though I have that along with a bunch of other things. I may be wrong (I often am!) but I think many and maybe even most people with Sjogren's try to treat things with over-the-counter products as long as possible, and I've gotten away with that approach for decades.

I also have to say that I find most doctors rather at a loss when dealing with things by phone. It is a million times better to see them in person with the full documentation, to actually get any worthwhile results! So since you are feeling frustrated, your doctor probably is, too. Just because they don't treat something with a prescription, doesn't mean they don't care or that they don't believe you.

I'm sure after a good night's sleep, you'll probably want to un-rant. I know I frequently spout off and then after I've had a chance to calm down and think about it, my reaction is actually much different. But at the moment -- OUCH! So here's some warm hugs, just for you!

:emoticon-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 summer

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Posted 05 October 2010 - 04:24 PM

Thanks Shelley for you response. It has nearly been a year, since I last seen my rhematologist, and I had the same problem, back then, burning eyes, and dry mouth. All I expect from a rheumatologist, is to refer me to an opthamologist, about the burning eyes. I didn't even know, until your last response, that I needed to see one. And, that I needed to also see a dentist.

The reason I am most put out, is that when I see my rheumatologist, nothing changes, in her mind. I can have a small list of things wrong with me, and she doesn't listen. What is the point in going to see her, when nothing is resolved, for instance, if she doesn't know something, then refer me to a person who does. I could have spent time today to see her, and it would be the same response, from a year ago.

Maybe, you should train to be a rheumatologist, you certainly know a lot more than she does. :rolleyes:

She could have mentioned about me seeing an opthamologist, but she didn't, instead she made me feel like a fool. I get more information, from this site, then any rheumatologist.

Best wishes,

Summer :flowers:

#5 judyt

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Posted 05 October 2010 - 08:11 PM

Hi Summer,

I have a lot of the same problems as you are listing, including the low iron stores etc. but mine are lower than yours and I have been put on a ferritin supplement for 3 months - 2 months are up so in another month I am to have another run of bloods and see what has happened.

If you feel you are low in iron why not buy yourself some over the counter treatment. There are good ones available which pregnant mums use and you probably can't do yourself much harm to try them. Remember I am not a doctor and am frequently wrong but from what I have been told by people who are medically trained is that if you take more than you NEED of most supplements, it will just be excreted anyway; however that may not be true for Iron (I don't know, please ask your doctor.)

Like Shelley I use over the counter meds like eye drops and mouth moisturisers, and in fact that is all the optometrist and dentist recommend anyway.

You in Australia at least have some Sclero specialists whereas we have none here in New Zealand. The rheumatologist I used to see at the hospital was about as useful as a wet bus ticket, but there is a better man in private practice and my general practitioner sends me to see him if there is a need. Can you find out by asking around whether there is anybody better in your area? I found that the nurses in my general practitioner's practice get to know who is doing a good job.

Best wishes to you in your quest to get better advice.

Judy T

#6 Shelley Ensz

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Posted 07 October 2010 - 04:40 AM

Hi Summer,

Well, I can't even begin to tell you how often I've felt like a fool in the doctor's office, so you're in good company in that regard. What I try to keep in mind is that they are not the least bit concerned about my mental health, nor are they interested in building a friendship, and a portion of the time even the best doctors might even misfire with their advice. Unfortunately good graces are often the first to go when people are under pressure (and that means on my side of the equation, too.)

We can very easily get caught up in trying to save face, in fact it can become the most important thing of all to us, more important than even our physical health. Whereas our doctor's, for the most part, could really care less whether we are feeling either validated versus foolish, or satisfied versus frustrated. Of course, the finest and best and our most favorite doctors routinely put human relations first. But they are mostly the exception, rather than the norm. That's why we all rave so much about doctors who have a good "bedside manner" because that, combined with technical expertise, puts them in very high demand!

What I like about the forums is that very often people and my friends here can steer me away from making a mountain out of a molehill with my medical care, or can let me know of ways to improve my care in the future.

Usually I get better care when I state what the problem/symptom is, and what I would like the doctor to do. For example, on your next doctor visit, you could tell them (again!) that you have very dry eyes, and that you want to get a referral to an opthalmologist for evaluation, including a Schirmer's test. (This is only if your insurance requires it; mine never does so I just go directly to the eye doctor, and ask them for what I need.)

Too often, we leave it at a loose end. We'll start out with saying that we have very dry eyes, and then drop the ball and not advancing it to the next level, where we want it to be. So no huge surprise that our doctor drops the ball, too. All they hear all day long is people complaining nonstop about this that and the other thing, much of it just people flapping their jaws to get some air in or pass the time of day. A specific request like that will at least get the ball rolling for a discussion.

And I know I've said this a zillion times, but I'll say it yet again, for scleroderma patients, a great internist is absolutely worth their weight in gold, because they are the one you are most likely to first see with any symptoms and they can evaluate, treat, and document, all the issues that occur between specialist visits.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.