Monday, October 14, 2013

Confused

I know, what else is new?  I'm always confused.  The worst thing about being a thyroid patient is having to try to figure out your own course of action, or in other words, be your own advocate when you feel so lousy. And I apologize AGAIN for doing nothing more exciting than kabitzing about my health on what is supposed to be a gardening blog.  (Oh, the garden, poor neglected thing.....)

So here's where the confusion part comes in:  I went back to see 'Mandy' last week Thursday after calling her office a whole bunch of times.  Her office staff finally took pity (or was sick of hearing from me) and squeezed me into her busy day at 4:15PM.  Carl went with me, of course, I don't know what I'd do without him there to help me keep all this straight.

Mandy had impressed us by ordering the lab tests that I'd always read on forums for thyroid sufferers should be run and we were really looking forward to hearing what she had to say.  I'd had five vials of blood drawn and ten separate tests, surely there must be something to learn from all of this.  I hadn't had to fight to have these labs done; this was all Mandy's idea. 

So we sat down in her office and she went through the tests for my thyroid levels.  When she got to my TSH test results (and forgive me for getting repetitive here, but a pet peeve of all thyroid patients is when a doctor ONLY looks at the thyroid stimulating hormone (TSH) test result and diagnoses from that number alone as it is NOT the end-all, be-all of a patient's levels) she stopped reading immediately.  

"Oh, dear, your TSH levels are very suppressed.  It appears you are hyperthyroid now.  I think we'll have to reduce your medication."

My heart sank.  This was the one medical professional who had ordered the lab tests needed to get to the bottom of my condition and now she's spouting the same old rhetoric all the other doctors in the past have done.  But I had come prepared once again with percentages and information from the thyroid forum support groups I've been corresponding with, so I took a deep calming breath and plunged in.

I agreed my TSH number was low, but reiterated that this is normal when taking a T3/T4 med such as Armour.  I then gently asked her to look at the Free T3 and T4 numbers and please note how they are still far, far below range which would indicate a need for an increase in thyroid hormone replacement.  I also asked her to review the results of the reflex test she had done on me a long four weeks prior that had clearly indicated I was hypothyroid, not hyperthyroid.  Didn't that test reveal my reflexes were slower than molasses in January? 

"Oh, yes, you're right, the reflex test did indicate hypothyroidism, that's true, and I agree, your Free T numbers are very low, but the TSH is so suppressed.  This is confusing...I don't know what to tell you.  I'm guessing this is too complicated of a case for me and I should refer you out.  Have you ever seen an endocrinologist?"

At this point I wanted to ask her why she ordered all the additional expensive lab work and computer reflex testing if the only damn number we're going to focus on ONCE again is the blasted TSH?  Sorry to swear in print, but I can only tell you I was angry and devastated all at once.  All of these tests and appointments are out of pocket expenses for us and now she wants to refer me to yet another doctor?........groan.

She must have seen this and more written on my face, because she then said, "I hate to admit it, but I don't know who to refer you to.  There really aren't any good thyroid doctors here in town.  Have you seen an endocrinologist before?"

Yes, and I rattled off the names.  She wrinkled her nose when I said one name in particular and related my experiences with him and shook her head sadly.  "I'm afraid I don't know what to tell you."

I then bit the bullet and cautiously put out there the knowledge I'd gleaned from the thyroid forums, knowing full well she'd probably pounce on that as 'internet misinformation' and show me the door.  But at this point I didn't have much to lose. (Except more money.) 

But surprisingly, she was interested in what I'd learned and as we went over the lab test results and I showed her the percentages of my results, she agreed with what the forum folks had suggested: I needed another increase in medication.  Actually it was suggested on the forum that what I really might need is a slight raise in the T4 part of the med and not the T3.  Many thyroid patients have split doses like this.   But when I asked about it, she said this was completely out of her realm of experience.  Darn. I could tell she was ready to bolt for good so I backed off on that suggestion. 

I asked her how long she'd been a thyroid patient herself.  Ready for this answer? 

Less than a year.

Ok, that explains a lot. To be fair to her, she is not a thyroid specialist and I can't blame her for not knowing the answers, but we were SO close with the right lab tests being run, now we just need a doctor who can interpret them correctly.  SIGH again.  I don't believe my case is all that complicated; the only reason doctors say it is complicated is because they don't want to go beyond the Almighty TSH number and work on getting medication levels adjusted because it takes time to sort out.  It's so much easier to just prescribe one pill, usually synthetic T4, and tell you to recheck in six weeks.  Don't call us, we'll call you.  And if you still have symptoms, well, it's not your thyroid, honey.  Take an antidepressant.

Mandy leaned back in her office chair and said, "I'm not sure what to tell you.  I can consult with an endocrinologist in the UK that I Skype with and ask his opinion, but I fear his answer will be to 'ship you out'.  But I don't know where to send you either since you've made the rounds of the doctors here. I guess I'll put it to you this way:  What do you want me to do?"

The million dollar question.  Ha.

I asked for the slight raise in dose and promised if hyper symptoms arose, I would notify her right away and not hold her liable.  Wonder of wonders, she wrote the prescription.  I am to see her in a month for more lab work.  We parted company congenially.  I started the new dose on last week Thursday and have already felt a little better, but I have a long way to go.

Can you see why I'm confused?   I hate it when as a 55 year old woman, I go back to 'believing in Santa Claus thinking' as if there truly is a Magical MD out there who will order the right tests and then know what to do with the results when he/she gets them.  I think it's ridiculous that all of the people on forums have to pool their knowledge and experiences and try to self diagnose and push for more effective treatment on their own.  I know I'm not alone at least, but it is reprehensible. 

I fall into Conspiracy Theory thinking, because after all, look at all the medications that were prescribed to me for various other maladies over the years, antidepressants, anti-anxiety meds, high blood pressure pills, statins, beta-blockers, ick, the list goes on and on...does anyone else hear the cash register chiming?  And do I want to be told I have fibromyalgia so I'll shut up?  No.  I want my thyroid disease to be Optimally Treated. 

While complaining to yet another friend about my thyroid woes, I was introduced to another lady my own age who has gone through almost the exact same rigamarole.  She and I haven't met yet, but we are going to chat very soon.  She has recently found a new doctor and seems very optimistic about him, but his practice is over 100 miles away.  I'm not sure if he's taking new patients or not, either, but I look forward to hearing from her soon to see if there's yet another Dr. Santa Claus in my future.

Let's hope I can say someday soon, "Yes, Virginia, there is a Santa Claus."

I'm feeling repressed again, ha.





15 comments:

Carol said...

I hear your pain so loud and clear! I have to go back to my reg doc soon and I know he is going to want to lower my meds again. Every time I start to feel a little better that's what he does. It becomes a game with us and the last time he asked me when and where was it that I went to medical school.But once in a great while he does listen...just not enough. I get the "You know you have fibromyalgia and you're never going to get over it" speech often. But I do feel much better since I've taken more control of my medications I will and will not take.

africanaussie said...

Karen,
You really have had the run-around,a nd I hope this works for you. From what I udnerstand you always have to be on top of the game - there is not a one size fits all treatment. I follow this blog by sarah Wilson - have you heard of her? She just posted an article on thoroid disease today! You might be interested in it. http://www.sarahwilson.com.au/2013/10/how-to-heal-auto-immune-disease-20-weird-thyroid-symptoms-for-your-comfort/

Alison said...

I can really sympathize with your frustration. I hope that upping the dose helps you feel better, and that you finally find someone who can help you. I am so bummed that Mandy wasn't the one. It seemed so promising.

I was so happy to see a comment from you on my blog today! It cheered me up, even though you pointed out that we seem to be on a similar course this fall. I always enjoy hearing from you.

Missy said...

While Mandy may not have the answers I think the fact that she admitted that AND that she asked you what you think should happen are extremely positive (and quite rare in a doctor). If you take control and tell her how the changed meds changed your symptoms and tell her what you think should happen AND she listens you may have found your Santa already.

Karen said...

Carol, oh, I hear you, too! I wish doctors wouldn't scold us or be insulted when we present them with our symptoms and other information that is relevant to our case. I can only imagine how difficult it must be to be a physician, but I wish they would also extend the same courtesy to the sick people they are treating. Do they honestly believe we enjoy researching for hours and hours on our maladies just because we have nothing better to do? Oh, it makes me so dang mad. I've had doctors lower my dose of thyroid meds too when I felt good only to slide back into not so good land. I wish there was an easy answer for all of this. Hugs to you, Carol! I'm pulling for you.

Karen said...

africanaussie, thank you for the link! I went and read her blog right away and left a comment just about as long as a blog post there. Her article is completely correct and brought me to tears. It is comforting to know we are not alone. It is my hope that automimmune diseases will finally get the attention they deserve, there are so many people's lives affected. Thank you so much for thinking of me, dear lady.

Karen said...

Alison, how is your back feeling now? I was thinking of you all day. Today was not a good day for me, I felt downright lousy. Some new and ominous symptoms (bleeding) have crept up now, directly related to the bioidentical hormone therapy. I'll have to make another phone call to Mandy's office tomorrow. Just what I don't need. On a brighter note, I did make another appointment with yet another hopeful Magical MD for this Friday. It's going to be a long drive, but at this point, I don't know what else to do. I wish I didn't have to spend so much time hanging around thyroid forums and reading about illness stuff. I have hardly any time to devote to reading my blog list. Thank you so much for thinking of me. It helps so much!

Karen said...

Missy, you're right, it was amazing that though Mandy admitted she didn't have an idea of where to proceed next with my treatment that at least she was open to suggestions. That is almost as rare as a snowstorm in the summer. Today was not a good day so I don't know if raising the dose was the right thing to do, either. I suspect I may need a combination dose change, but I know she is not comfortable with that idea. I did make yet another appointment with a completely new MD for Friday. More money spent which I certainly hope is not in vain. I'm going to keep Mandy as a doctor in the meantime, just in case this newest MD is not Santa Claus either. Thank you for thinking of me, it was wonderful to hear from you!

FlowerLady Lorraine said...

Dear, dear Karen ~ My heart aches for you in your frustration over this whole thyroid issue. I'm afraid my DH would agree with you on the conspiracy theory. :-)

You are in my thoughts and prayers.

Love and hugs ~ FlowerLady

Carol said...

I hate you are going through all this. My hubbie and I have had similar woes, but other problems. One thing I always do is get a copy of every test we have done so as to hopefully not have to repeat it. Also, even tho the doctor the other lady use may be 100 miles away you might could e-mail or write him, tell him what is going on. What you think may be happening, that no one has helped and a copy of your blood tests. It may get his interest up and you might have to drive for the first visit but you might can get blood test done locally and sent to him. I pray things will get figured out for you! Have a great week and be blessed.

Peonies & Magnolias said...

Good Lord what a nightmare. I'm so glad you are feeling a little better and I hope that continues. I also hope the other doctor works for that lady and can help you too. You are in our thoughts and prayers.

Sandra

Karen said...

FlowerLady, I just know your DH and I would have had a great time with our conspiracy theories, but isn't it a scary thought? Follow the money. I am so grateful to wonderful friends and fellow bloggers who tolerate this Whine Fest. Thank you so very much.

Karen said...

Carol, you have a great idea there! Isn't it amazing what we patients have to go through to get somewhere? I did make the appointment with the new MD yesterday and I'm to see him on Friday. I'm busily gathering all of my lab tests and relevant info together and hopefully he'll see something in all of the prior testing that will be of use. He's seeing me for a 15 minute consultation and then we'll see how it goes. Thank you for your words of encouragement!

Sandra, Thank you for being there for me, I SO appreciate hearing from fellow blogger friends. I know this blog has turned into a huge 'Woe Is Me' fest lately. Thank you for your prayers, I am truly blessed.

Pamela Gordon said...

Karen, I was just thinking about you yesterday as we were building our fire pit. I though of your Castle Aargh and the precision you are taking to build it while we are piling rocks from our yard for a fire pit. Then tonight I see your blogpost and one before it that I missed. I'm sorry you aren't much farther ahead with your diagnosis and medical help but at least you're feeling a bit better. I hope this all becomes clear soon! Blessings to you. Pamela

Karen said...

Hello Pamela, thank you for thinking of me. Poor old Castle Aaargh isn't getting much attention this fall, but I guess it can wait. I bet your fire pit will be lovely. Yes, the wheels of medicine turn pretty slowly, but there's hope. (I hope, lol!)