Sunday, June 27, 2010

A few steps back but moving forward again

I haven't talked about my ongoing search for medical resolutions for awhile because the latest events haven't been real positive.   The new endo didn't turn out to be very helpful.  She lost my test results and took almost three weeks to get them to me (after I called repeatedly) and I had to argue with her just to get her to send me forward to two other doctors who might be of help.  The biggest argument that I had with her was when she told me that my thyroid hadn't changed at all for two years.  Uh, look again lady!  I told her I had the same two ultrasound reports sitting in front of me that she was looking at and actually had to guide her to "Look here.......and here.........and there........" so she could see how drastically it has changed in the two years between ultrasounds.  Yeah, she's fired too.

The real setback for me was the "official" diagnosis from the pulmonary tests.  The diagnosis is that I'm fat.  {stunned silence}  I can't believe she said that or that they actually put that as the main diagnosis on the tests.  It sounds like they looked at my weight on the chart and stopped right there because obviously no one who weighs that much could have any other reason for pulmonary problems.   To say that I was devastated is an understatement.  I mean, I'm a recovered anorexic and this was like a shotgun blast to my psyche.  Yes, I am overweight but there are a few things that need to go on record here with these doctors who are determined to dismiss me as fat and lazy.

I wasn't fat when all this started.  Two and a half years ago I was a size 14 and that's when the breathing pressure started.  That was back when I was still walking every day.  The problem isn't so much that I can't breathe.......the problem is that the oxygen I take in doesn't get to my muscles.

The reason that I've gained weight is because I can't exercise.  I'd like to see those doctors do aerobic exercise when their oxygen saturation rate is at 80%!  Or even take a walk for that matter.   Personally, I don't think they could even keep up with my daily routine if they had to deal with that O2 sat.  The other reason I can't exercise is because if I do push those oxygen starved muscles the myfascia starts to tighten up on them and that sends my fibro into panic mode.  If I do three minutes on the treadmill I'll be laid up in bed for a week.  And because of the fibro issues, I have to take the maximum dosage of Lyrica which has some of the same side effects as steroids...........weight gain.

So you can imagine what it did to me to hear "You're overweight and that's why you need to be on oxygen".   I think I cried nonstop for a week.  But before I started to cry, I pushed back at the doctor about the results and told her that there had to be more to it because the breathing problem existed before I gained weight.  She read a little further and said, "Well, there is a slight possibility that it could be a problem with the air diffusion from your lungs to your heart.  There's a marker for DLCO that popped up in the test but they don't think that's the issue.  They're pretty sure it's your weight".

{banging head on keyboard}  Let's review for a minute.  The reason I'm on oxygen isn't because I can't catch my breath.  I walk around all day and I'm not gasping, panting or wheezing.  The only time I have trouble breathing is when I turn my head or look down and my thyroid blocks my throat.  The problem is that the oxygen doesn't go where it's supposed to go after I get it into my lungs.   So after I went off on her about that, she finally agreed to get me into see a pulmonologist.  Then I asked her which surgeon she was going to refer me to and she said, "What for?  There's no upper airway obstruction caused by the's just your weight.  Why do you need to see a thyroid surgeon?"   {snarling}  Oh, let's call it a whim of mine.  I still think that having my collarbone jammed into my thyroid gland might have something to do with all that intense pain in my shoulder and throat, and hey, while we're at it I'd really like to know just how far down into my chest this thing has grown since no one has even bothered to look any lower than the base of my throat.  If this is a sub-sternum thyroid, there could be some real problems in there.  It would also be nice to be able to breathe when I look at my feet.  Other people are allowed to continue breathing when they look down and I think I'd like to be able to do that too.   She said she'd get me set up with the thyroid surgeon because "Well, the size alone qualifies you for a thyroidectomy".  

{stunned silence}  If that's true, why do I still have a thyroid?    Why the hell do all these doctors keep resisting me about this???

So she agreed to get me set up with the surgeon............and promptly forgot because I had to call back three weeks later (making it a total of six weeks since I'd seen her) and beg the recep in her office to just transfer me to the endo surgical department and set it up myself.  So I see the pulmonologist on July 27th and the thyroid surgeon on July 29th.

On of the things that pisses me off the most about the pulmonology report wanting to blame all this on my weight is that reduced air diffusion can be caused by fibroid tissue in the lungs which is associated with rheumatoid arthritis.............something my hand surgeon says I have even tho the blood tests are all negative.  That's why the hand surgeon is going to do an open incision when he does my CRS so he can get a deep tissue biopsy that is more conclusive than the blood tests.   (and we have to keep putting off the hand surgeries because resolving the thyroid and breathing issues take priority so I'm limping by on cortisone shots in my hands until that wondrous day arrives)   So you can see why I'm so concerned that the pulmonologist might just take the "you're fat" excuse and not pursue the other potential problems.  There's a lot at stake here.

I haven't felt much like talking about this but since my blog has become something of a medical diary for me so I can track dates and the sequence of events, I thought I better not leave anything out.  For those of you who follow my blog and actually read this, I'm sorry to be a downer sometimes.  This part of my life really sucks and while I try to keep a positive spin on it, sometimes there's just nothing good to say.

However, it does get a little better from here because I had a good appointment with my rheumatologist on Friday but I have to backtrack a little bit to explain the good part.

A problem that has taken a back seat to my thyroid and breathing issues has been my lower back and my right hip.  I've been telling doctors for a couple of years that I can't walk or stand for more than three or four minutes before my back is in excruciating pain.  We're talking about the kind of pain that takes people to their knees and would do the same to me if I wasn't blessed with an extremely high tolerance for pain.  I rate the back pain at a 14 on a scale of 1-10 and keep telling them that it feels like bone on bone coz it's definitely not muscle.  When I'm not standing or walking, the pain is normally around an 8 or 9 but never lower.  The xrays have shown degenerative disk disease and arthritis in my spine so that's what everyone has written it off as and even when I demanded xrays of my hip, they said they didn't see anything but "mild ddd".   Last November I talked the internist's PA into ordering an MRI of my lumbar region just to see if that showed something that might be missed on the xrays.   She did and when she gave me the results she said, "It's just mild degenerative disk disease.  Keep taking your arthritis meds".

I figured that if the MRI didn't show anything then the diagnosis was right and tried to just suck it up and live with it.  It's gotten worse and I started using a cane to get around a few months ago but I figured that's what the "degenerative" part means.  Anyway, when I gathered up all my medical records a couple of months ago it included the MRI report.  Most of that is greek to me but I did see that they found a cyst on my right kidney.  {shrugging}  My body is so full of fibroids that it would only be surprising if I had an internal organ that didn't have a cyst.  I did some research and the cyst is within acceptable size limits for a kidney cyst so that's not a problem unless it starts acting up.  The rest of the report is all in medical-ese so I tucked it into my file to take to my next appointment with my rheumatologist.

That was on Friday and when I handed it to her, she looked it over and said, "Wow!  There's a LOT going on here!".  HUH???   I was told there was nothing at all!  She said that in addition to the DDD, there are bulging disks all the way from L3 to S1 and moderate facet arthropathy which is worse on the right side.  That last part means that the actual bones of my spine are rubbing against each other and the erosion is more on the right than the left which sorta sets me off balance.  It shouldn't be causing the radiating pain down my leg but we'll find out if the kidney cyst has something to do with that since the epicenter of the radiating pain is over that kidney.   The main thing is that she immediately faxed the MRI report over to a spinal pain management doc and I'll be setting up an appointment with him on Monday.  This is the kind of doc that does the ultrasound guided cortisone and spinal epidural shots.  I'm hopeful that if the kidney cyst is a problem he can diagnose it and get me to someone who can remove it.  At this point I'm totally unconcerned about the risks of the spinal shots and am content to be thrilled that I might get some actual pain relief.

This is something positive so I'm happy about that.  My rheumatologist also made me feel a lot better emotionally when she was genuinely angry about the pulmonary diagnosis that I'm just fat.  She ranted for several minutes about how they might as well have slapped me in the face instead of telling me something like that.  Dr. H knows that I used to be an avid walker so she knows that I'm not just fat and lazy.  She took the time to talk to me about why I've gained weight and why nothing can be done about it until some of these other issues get fixed.  She also told me to make sure that both the pulmonologist and the surgeon call her for a consult because she's going to make damned sure they know how severe both problems are to my overall health.

She also had a few strong things to say about the endo not pursuing the thyroid surgery.  She said, "You've had two fine needle aspirations but they biopsied the same nodule both times.   Everyone knows how notoriously inaccurate those FNA biopsies are and with so many nodules with microcalcifications in your thyroid, they're playing games with your life.  We *have* to get that thyroid out of you because the risk of cancer is very real".

{sniffling}  And then she hugged me and told me not to give up.  She said she understands how frustrating it is to be on doctor #11 and still have to keep fighting.  It really did help a lot to hear her tell me to never give up hope and know that I have at least one doctor on my side.  I'll have a little more confidence going into see the pulmonologist and the surgeon later this month knowing that I'll be handing them her card and telling them that I'll be checking to make sure they talk to her.

As always, I'm hopeful that doctors #11, 12 and 13 will finally be the ones who can make things better.  After all, 13 has always been my lucky number.


  1. Oh, I really can't say too much after reading the post but that you're one tough lady! I really hope that the docs now take seriously your health problems and you get some relife from the pain.

  2. Good luck with the new doctors.
    A good response to "you're fat" is a long stare (like you're trying to set fire to them with your mind) and "OK, but how would you treat these symptoms if I *wasn't*...?"

  3. Big hug, girl! Keep using us as a sounding board/shoulder.
    Just because some people went to med school doesn't mean they're smart and just because they graduated doesn't mean they should have.
    Just a thought: is the pain down your leg at all associated with your sciatic nerve?

  4. I cannot believe how hard you have to fight to get some actual help- almost as if they just want your problems to be easy and can't be bothered to work with you to find a way to improve your health. Thank God for your rheumatologist! I don't comment often Deb- but I always read and I just wish and pray your doctor #13 is a gem and you start to move in a positive direction.

  5. First, get off the Lyrica! Nasty stuff! Email me at, we are having many of the same problems health wise but I am having better results with my doctors.
    Please feel better! You are NOT alone!

  6. Never give up! It sucks that you have to fight tooth and nail to get any doctor to listen to you. I pray you get the help you need soon.

  7. Debs keep your chin up. Hopefully you will finally get some answers and a Doctor who can help you. I know how frustrating everything seems, having the same problems, getting things sorted myself. xxx

  8. Thanks everyone. I really appreciate the support and caring that you all give. It means more to me than I can say. I got a call first thing yesterday morning from the spinal doc. I have an appointment with him next week for the eval to see which type of shots will work best for me. I'm thinking positive about how nice it will be not to have back pain after lying on a surgical table when {crossing fingers} they remove my thyroid. :-)