My never ending thyroid saga

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DebE13
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Post by DebE13 »

Thanks for the suggestion Lori, but I believe Tex is correct. I can't even get them to consider NDT, although that came through the nurse so I plan to bring it up again at my appointment. Plus I will need cancer follow up forever and there are only a handful of endo's in my area so I want to be absolutely sure They aren't a right fit before moving on to another. They all seem to be from the same mold and I don't want a repeat of when I was booted out of my first GIs practice. It was awful trying to find a replacement.

I Talked with my endo on the phone yesterday since I've been so persistent. He won't do anything until he can see me in person. I can respect that. He got my appointment moved to Friday. He said T3 therapy is not out of the question but needs to be able examine me to rule out anything else. That was slightly encouraging but he also made the comment that bursting into tears for no reason and the emotional issues are not typically caused by thyroid issues. Hmmm. The second thing that really bothered me was he said my labs were in a normal range. I didn't understand that one at all.

I did remind him I suffered for over two years with nearly all the thyroid symptoms and it was only after my surgery that hashimotos was found. I've had years of normal labs so the normal thing never sits well with me. He did say that he doesn't like to treat based on numbers alone either. I'm hearing good comments and some scary comments. Guess I will wait until Friday and see what happens.
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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tex
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Post by tex »

Lesley wrote:Tex - my PCP is more than willing to help me get drugs from where ever.
You have a very atypical doctor who is apparently willing (possibly unknowingly) to risk losing his license to help you. He sounds like a keeper.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by tex »

Deb wrote:The second thing that really bothered me was he said my labs were in a normal range. I didn't understand that one at all.


Well, technically, they are within the normal ranges. In fact the TSH and Free T4 are pretty decent, for someone who has a normally-functioning thyroid (which doesn't apply to you, since you don't even have a thyroid gland). The Free T3 though, at 2.4, is barely within the so-called "normal" range (2.3–4.2 for someone older than 18). Free T3 is very important. That result might be tolerable for someone who has a normally-functioning thyroid, who was free of clinical symptoms, but IMO, to claim that your T3 test result is "normal" is a stretch of the imagination, and it requires making a critical assumption — namely that "normal" thyroid test result ranges derived from people who have a normally-functioning thyroid actually apply to people who no longer have a thyroid gland. IMO, and from a scientific standpoint, that's an unwarranted assumption. Especially in the case of someone such as you, who showed "normal" results even though you actually had Hashimoto's and thyroid tumors.

IMO, your prior thyroid history is your strongest suit in this "negotiation" with your endo. Just as you are insisting, there is plenty of evidence that the theoretical concept of "normal" does not apply to you. (And "normal" is indeed a theoretical concept, not a scientific reality.) The term "normal" didn't apply to you prior to the surgery, and it certainly doesn't apply to you now. Therefore, IMO, your treatment should be based on symptoms, not on some assumed concept of "normality", and hopefully your endocrinologist will have the depth of understanding to recognize that.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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DebE13
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Post by DebE13 »

Talked with my endo on the phone Wednesday since I've been so persistent. He won't do anything until he can see me in person. I can respect that. He got my appointment moved to Today. He said T3 therapy is not out of the question but needs to be able examine me to rule out anything else. That was slightly encouraging but he also made the comment that bursting into tears for no reason and the emotional issues are not typically caused by thyroid issues. Hmmm. The second thing that really bothered me was he said my labs were in a normal range. I didn't understand that one at all.

I did remind him I suffered for over two years with nearly all the thyroid symptoms and it was only after my surgery that hashimotos was found. I've had years of normal labs so the normal thing never sits well with me. He did say that he doesn't like to treat based on numbers alone either. I'm hearing good comments and some scary comments. Guess I will wait and see what happens.

Am I better off just focusing on the brain fog, irritability, and fatigue or bring up MC and everything that goes with it for background (although they should already be aware)? I'm want to give him the picture of the whole me and how this effecting my life but yet I'm nervous that it may give him a reason to dismiss trying T3 meds because "I have something else going on." Sometimes my thoroughness and desire to include every detail to paint a complete picture of my struggles backfire. Then again, would the reminder of MC, chronic inflammation, past prednisone use help him understand?

I oh so do not like riding the fence on any issue. Today is going to be a very good day or a very bad one. :xfingers:
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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Post by tex »

Deb,

IMO, if you bring up other issues (such as MC) that will just give him an excuse to blame your symptoms on those other issues. Physicians have tunnel vision. They only see issues that they are trained to deal with. Everything else is someone else's problem — the old "not my job" copout;.

Good luck.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by DebE13 »

Tex, you are right-on with that statement.... I didn't bring up the MC even though, to me at least, it seems it's something that should be brought up to present the whole me. I'm not just a thyroid patient or an MC patient. It seems so very important that auto immune problems and on going health struggles all tie into each other. Of course, you know that. :doctor: But I didn't bring up any history. I should have known, and now I'm kicking myself if the ass for even bringing it up at all- mood swings and the emotional gamut. I lost out right there and have been down that road many a time. I am so disappointed but just too tired and frustrated right now to feel much of anything. No, I take that back- I feel like I have to act like everything is ok and I'm just hanging in there to give it some more time, after all it is body chemistry we're dealing with. I'm being sarcastic even though there is some truth to it.

The discussion started with TSH and yes, it is still too high. We then discussed T3 meds and he said if asked to use T3 therapy three years ago, he would have said absolutely not. However, now he would consider it but isn't something that he will start with. He said something about depending on the numbers and not symptoms but then also said that the use of T3 was not out of the question if symptoms persisted. I had just finished with the neurological test (I think) and was very frustrated so I got off track because I was trying to concentrate on what he was saying because my mind blips out on long conversations and I was feeling the discussion was going downhill. So basically I have to continue with 125mcg of levothyroxine M-F and add 175mcg on Sunday for the next 8 weeks. I was unable to confirm if I still feel like I do now he will try T3 because his phone kept ringing and was interrupted by the nurse because the hospital was calling.
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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DebE13
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Post by DebE13 »

Having computer issues... had to switch computers before it caused a melt down for me. :lol:

So anyway, I was irritated that the hospital emergency bit into my appointment time because things got rushed. At that point, as bad as it sounds, I didn't care if someone was dying over there because I've been living in hell since September and fought to get this appointment and wanted his full attention no matter how long it took. I don't believe there will be a reduction in the charge because it was hurried along. On the other hand, the more rational me knows that emergencies happen. But they always seem to happen when it effects me.

I've gained six pounds so I'm not sure how much that effects the meds. I have to get labs at 2, 4, and 8 weeks to see how it's working (or not working). I might as well not even bother calling in between time because I see how that already went- it didn't change a thing since the protocol dictates the increased T4 before attempting the T3.

I was given some text book test to see how my memory function was. All I can say is the recall of "brown, tulip, eye dropper, honesty" doesn't mean hill of beans to me when I flounder in the workplace feeling like and idiot when I'm supposed to be in charge. I work in an aggressive office and there's no time to be feeble minded. I did ok remembering the string of four words after many distractions but flubbed on the last one by substituting "truthful." I recognized my error after being prompted so I passed with flying colors. I felt like a complete disaster so the test IMO would be useful if I had serious brain damage or Alzheimers. I was not able to subtract by sevens from 100. Talk about feeling like a full blown idiot. The doc said that was ok though because some people have problems with numbers. I was able to spell WORLD backwards so that made up for it. Did I mention I work in the Treasurer's office and deal with money and billing? The inability to calculate simple numbers because of brain fog raises a big red flag to me. I also did fine with touching my nose then his finger all over the place test. I know these are important tests that I fully don't understand the background of but to have my mind go blank in the middle of a conversation with family and friends is frustrating. To have it happen when I'm getting screamed at by an irate person because I just dumped an overdue bill on the tax roll, the collection agency, or the Department of Revenue is unacceptable. I was told I passed the test with flying colors. :cry: Not sure if any one is familiar with the test so I may seem like I'm rambling a string of nonsense.

So we moved on to Prozac. At least he prefaced this conversation with "I don't think you're going to like what I have to say." Now my heart was already racing because I was feeling moronic even though my flying colors were waving away. Any error in any test is not ok with me. Perfection is such a downfall. He gave a very nice explanation of the receptors in the brain and the causes of depression. He said it was food for thought and he wasn't going to push another pill at me now. He brought up the stigma depression and most people will say a pill isn't for them. At the end he also suggested St. Johns Wort although preferred Prozac because the dose would be consistent. My heart sank. He wasn't offensive and I liked his presentation but I am at a loss. I'd try the St. Johns Wort for a what the hell, it can't hurt but I don't know enough about it and if it's worth trying. Back to the less is more. Do I really want to add another supplement. I'm still firm that I don't want to add another drug. Am I being stubborn? I'm throwing my hands up right now.

I am known for being stubborn when I believe I'm right. I don't do it carelessly either because I'm also very logical. I look back over the past many many years of dealing with GIs and how they insisted my diet didn't matter yet had no explanation of why I was sick every time I ate. I knew better but didn't have the tools to help myself. (until I came here) I feel the same way now. I don't know if the T3 will help, but after reading countless journal entries, posts, medical text..... I'd like to try it but need someone to get on board with me. It's a dilemma in my head as what to do. I'm burnt out. Do I give it the eight weeks and go back and say "Can we do it my way now?" Do I call to confirm that if I'm not feeling better he will indeed explore T3 otherwise I need a referral? (phone calls have always been a big stressor). Do I start looking for another endo now? If I do, that process could very well take me to the 8 week point anyway because getting a referral, scheduling an appointment could take a while. The endo I was looking into was booking into late December at that was last week. If I switch, I'm not guaranteed she doesn't follow the same book as my current endo.

It's maddening. I like my current endo because he isn't arrogant and is pleasant. Yet he is overworked and stuck to his book. I'm hanging on the hope of T3 but I have to go through his flow chart of how to treat the symptoms. I don't think he realized how much he was asking of me to hang in there and give it some more time.
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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Post by tex »

Deb,

I don't understand why he didn't just increase the daily dosage to 150 mcg, rather than prescribing the entire additional 175 mcg to be taken on 1 day each week. :shrug: It would make a lot more sense to do it as a uniform daily dosage — unless he did that to see if you will notice a significant improvement on Sunday, Monday, and Tuesday.

Here's the way I would view your situation:

It's clear that in the short term at least, he's likely to stick with the treatment pattern that he's become comfortable with, but he's willing to consider other options after he gets to know you better and accumulates a bit more treatment history for your case.

If you like him, and feel safe, and at least reasonably secure in his care, then if I were in your situation I would accept the situation as is, "surrender" (so to speak), and go with the flow, to see where it goes. A state of constant stress, distrust, and/or contention doesn't bode well for a patient/doctor relationship.

After the 8 weeks of data accumulation, if your symptoms aren't improving, and/or the prescribed treatment isn't addressing your symptoms, then I might consider looking for another doctor. By them, we will be in January, so the holidays will be past, and it should be much easier to book appointments.

On the other hand, if I just couldn't live with the way that things were going with regard to my treatment, then rather than constantly wasting my time worrying about it and dwelling on it, I would make arrangements to try to find another doctor ASAP, and hope for the best. During the holidays, though, my experience has been that it's tough to get things done in the medical world. Busy doctors (IOW, the most popular doctors) are even busier during the holiday season, and as a result, we're much more likely to end up with a less desirable doctor if we try to switch during this time of the year.

IMO, you need a break from the constant stress that this is causing in your life (and in your family members' lives). Why not resolve the stress by declaring a moratorium on even thinking about it, and postponing making any decisions until after a couple of months of healing/adjustment. If you simply can't get it out of your mind, then maybe you do need to try to find another doctor ASAP.

Obviously, by making those suggestions, I'm focusing on the damage done by chronic stress, and why we need to minimize it from a long-term health viewpoint.

There are no easy answers to complex problems, but dwelling on them (without making changes or moving on) doesn't help either.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by DebE13 »

Thanks Tex, it's a hard call. I'm leaning towards waiting it out although it's forefront in my mind. Appointments are a bear to get because of the holidays and end of year wrap up for insurance coverage. I too, want all my appointments in while my deductible is met.

It's hard to allow myself to give in but there are no guaranteed solutions if I rush through this either and I could end up worse off than where I started. The mental break is well needed and I'd hate to mess up my entocort pattern. I'm down to 3mg every forth or fifth day. Who, hooo me. Decided not to push it any more than that given my state of constant frenzy. Fitting in all the phone call and follow up between or while at work is wearing me out. Plus, tax season is around the corner and December and January are the most stressful months in a tax collectors office. :neutral: Everyone loves to see the "tax man." If only I got to keep it :lol:

I'm taking 50mcg tablets (most allergan friendly I could find) so there is no easy way to give the dose he wants because it isnt made.

Going outside to rake before the rain. Buying a snowblower this afternoon because I don't think in my current condition I will be able to heft the snow like I used to. New fun problem is I get winded and a raving heartbeat with mild exercise. Hoping that too will pass when I get my T3 meds in January. Wink wink.
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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Post by tex »

Deb wrote:I'm taking 50mcg tablets (most allergan friendly I could find) so there is no easy way to give the dose he wants because it isnt made.
175 mcg once a week is 25 mcg per day average. 125 + 25 = 150 mcg per day, or 3 x 50 mcg tablets. Or am I overlooking something?

Maybe the increased dosage will help with the symptoms caused by exercise.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by DebE13 »

:oops: I had to laugh because of yesterday's little math experience. I see 137mcg is a common dose or something similar to that. I take 125/day = 2 1/2 pills. I'm supposed to add one additional pill on Sundays = 175mcg so that would be only 50mcg more each week to average 7ish more per day but then that only puts me at about 132 mcg/day. Sorry if I didn't word that clearly.....

I stopped raking because it became too uncomfortable. I pushed myself to do more than I should have, which wasn't much, because I'm more of a suck it up and get it finished type of person but then thought it might not be the smartest thing and end up sprawled out in the yard of a heart attack. :lol:
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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Post by tex »

Sorry Deb,

Never mind. When you said "and add 175mcg on Sunday", I thought that meant an additional 175 mcg (in addition to your regular dose)

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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DebE13
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Post by DebE13 »

:wink: no problem. I've been second guessing everything I do or say lately. My short term memory is a bit out of whack no matter what the endo says.

I got called in to work last night for a furnace issue at a building we rent and you almost need a college degree to use the thermostat (it's ridiculous). I am the back up and haven't thought about it since last spring and felt like an idiot when my mind kept going blank on how to retrieve the alarm reports. It seems the harder I try to concentrate the longer the slate in my mind stays empty. It's a real drag to have to concentrate so hard to follow a conversation when I'm the one who's supposed to be in charge and on top of the game. It all worked out fine but it reminded me of your comment about a medical professional who may be in the same hypo situation and treating patients. :shock: Maybe my first question when meeting a doc should be asking their health history! :lol: I know I wouldn't want someone else's life in my hands right now.

I came back home and found I left a candle burning on the counter. :oops: In the rush to get out the door to fix the problem, I remembered to turn off the oven (was in the middle of making dinner) but missed the candle sitting right in front of me. That scared the pants off me. I'm sure the doc would attribute that slip to being hurried but I don't agree.

Let the eight week count down begin!
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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tex
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Post by tex »

I hear you about the memory issues. Been there, done that. If you think it's fun now, just wait until you get about 30 years older. :lol:

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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