I am The Doctor

My doc appointment this week basically went like this:

Me doctor, you dumb, confused patient. Me know what's best for dumb stupid patient.

Okay, I may not have a medical degree, and I may not know everything there is to know about the human body, however, I have had to spent about TWENTY FIVE years or so researching this disease every single day. I think I know something about this disease and my own body and what I need and don't need.

So she ignored my screaming back and hip pain and is still refusing to do an xray because she feels it's a waste of time and won't change anything. And I feel, I want the xray, I want to know why I'm in so much pain. I think it's very important to see what is going on. So that right there, I may have to switch doctors.

She ignored me on how much thyroid med and the kind I feel I need. I know I need the T3/T4 combo because before they reformulated Armor, I was doing good on it. She won't give me a T3/T4 combo now because I had a bad reaction when they reformulated and it scared her off T3/T4 combos, which she was already leery of. So she's just sticking me on another T4 and still at an inadequate dose. I know I need the 100mcg or even alittle higher, but she only wants me on the 88. And I know I need higher because I've been taking the 100 all week till I can fill the prescrip, and low and behold, I feel better for the first time in two months on the 100. I'm finally not freezing to death.

I'm just tired of having a doc that doesn't know anything about this disease, doesn't know how to treat it. Keeps me undermedicated all around. Leaves me in alot of pain. And if I complain about that, all I get is the dumb argument of "I don't want to addict you." Really, number one, I've never in last lot of years seen it happen to anyone except idiot celebrities. Number two, is it better to leave me in screaming pain where I cannot function at all from the pain. I don't think so.

I'm tired of having to be my own doctor, but I don't have the money to get anything I need that would help me. But at this point, I'm safer treating myself than dealing with someone who doesn't know what they are doing.

Comments

She ignored me on how much thyroid med and the kind I feel I need. I know I need the T3/T4 combo because before they reformulated Armor, I was doing good on it. She won't give me a T3/T4 combo now because I had a bad reaction when they reformulated and it scared her off T3/T4 combos, which she was already leery of. So she's just sticking me on another T4 and still at an inadequate dose. I know I need the 100mcg or even alittle higher, but she only wants me on the 88. And I know I need higher because I've been taking the 100 all week till I can fill the prescrip, and low and behold, I feel better for the first time in two months on the 100. I'm finally not freezing to death.
Now that is a very dumb doctor, not listening to what actually does work for their patient.

I understand your frustration.
 
I don't know where you live, but I live in PA. I don't think you have ever told me via email. My doc is a CFS doc, takes Medicare and would totally back you 100%. He hasn't cured me, but he gives me what I want, knows that I know my own body and respects me as a human being who is ill and needs help. I feel bad you are in this predicament and wish I knew what to say. I just had an xray myself trying to figure out my pain and he said, "if this shows nothing, an MRI is next."

If you can, I would fire your doctor.
 
Oh Carrigon, I am ever so sorry to read about your doctor. I have a GP who is totally uneducated about ME, but will basically do what I ask. I had my CFS doctor talk to her...actually BOTH Dr Lapp and Dr Black to little avail:eek:(I was so upset) Some doctors just do not want to learn about ME.

I am hoping you will find someone to help you. Especially with pain control. I do not have any addiction issues and my G Pwould only give me 20 Vicodin a month...WHEE! The medical profession has stopped treating pain, and I don't get it. You need pain medicine to function. Do you have family that might help you see a CFS doc...even if you have to travel some?

Would it help you to take Thyroid that is natural, from a "compounding" pharmacy? Just a thought. I am not an expert:(
 
I wish I could switch. Each one seems to be worse here. The last doc I had, he saw CFS on my chart and came into the room just to tell me it is a "wastebasket" disease that doesn't exist. And his idiot partner asked me if my symptoms were just panic attacks. So we fought about that, and that was the last time I went there.

None of them want to learn about this illness. I had another doc say to me, "What are you doing here, I can't help you." Either they believe it exists and they can't do anything for you, or you get the other extreme where they don't want to believe it. Then you get the undertreaters like I have who only want to keep you "so well" because well means you go less, so less profit for them.

I am sick of them all undertreating pain. We aren't drug addicts, we are the ones who actually need the pain med.

I'm also sick of them undertreating Hashimoto's. They keep thyroid med as prescrip only, we can't just go get it and self treat unless we import it. They ration it out like it's some kind of gold. And most of them won't give T3/T4 combos, even though we NEED it. Even on the most basic level, it makes sense that your body needs both and not just one.

I'm so sick of being in this position where I never know who to go to because every time I try to change docs, it ends up being a horrible experience. I really don't know what to do anymore.
 
I'm so sorry. I've been there.

I couldn't breathe very well and no one cared why (and they wouldn't even chart it, some not at all and some not properly). I had already fired so many doctors I didn't believe it was possible to find better ones. Even the doctor I had thought I could depend on abandoned me. I felt I was dying and, medically, I was on my own.

So out of desperation I finally fired all my doctors again, got new ones and fired most of them, too, and then finally found some who actually care. I still have one jerk doctor and don't have one specialist I need, but I have two who truly care (and my lung doctor even makes an effort to understand M.E.) and two others who are more or less trying to treat me.
 
I suspect you need an ultrasound (not an X-ray).

.........and you need an ultrasound done by a person skilled in reading & understanding inflammation.

I've had several ultrasounds done by a very highly skilled technician who has remarked on specific areas of tendonitis & bursitis (ie inflammation).

This highly skilled person now spends 2 days a week at a nearby Olympic Sports Medicine Centre. I was recently able to get an appointment (with a referral from my GP) in a matter of days. This technician did a couple of ultrasounds some years ago on me & treated me with cortisone injections.

Remarkable improvement, both years ago& in recent months.

Unfortunately, he also detected a Morton's Neuroma in my right foot (which I agravate every time I go for a long walk), so that is continuing to cause pain (despite the cortisone injection to that particular nerve). Perhaps I should have given that foot injection more time to take effect, instead of resuming my regular walks.

Consider that ultrasound might (& I say might as it could be to no avail) show areas that are highly inflammed & causing your pain. At the very least, ultrasound might show thickened tendons which are consistent with tendinopathy (or inflammatory change).

Some foods also have an effect on thyroid. If you haven't already done so, you might consider researching this aspect & trying to avoid those foods which aggravate thyroid symptoms.
 
I have a loose sacroiliac joint, a badly loose one. And every time I move, it moves, pops, shifts, pinches nerves and half the time gives me sciatica. So, now it's looking like the only way to tighten it up is to exercise my lower body alot. It's always got to be something. I've been doing some stretches and exercises on it. That loosened some of the tightness and hip pain, but now it's really concentrated in the lower back.

The pharmacy only gave me the same generic garbage from the same manufacturer, even though my doctor said she wanted me on the brand name. And so far, I'm not taking it until I stabilize my back. I know levothyroxine was a huge contributor to this loose joint. It's been making all my joints dislocate all year. And since I stopped taking it a few days back, no more hand and wrist pain. The hand and wrist pain that my doctor insisted was gout, no it wasn't. It was the levothyroxine. I've gone back on spirulina for the Hashimoto's unless it flares and absolutely have to take the lev, for now, it's natural.
 

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