Roadblocks

After what felt like a couple of months of good progress, I feel like I have hit some roadblocks again.

First, there is disagreement among the doctors I am currently seeing as to whether I have hyperparathyroidism or not.   The surgeon, who I trust and comes highly recommended, thinks I do.  The Wizard, who I also trust very much, does not.   In particular, he thinks my labs aren’t high enough to warrant surgery and that there might be other explanations for my labs and symptoms.  While the decision is up to me at the end of the day, I honestly would be feeling a lot better about proceeding with surgery with him on board.  I don’t want to go against his advice.  I don’t want him to get upset with me and I don’t want to jeopardize a great doctor-patient relationship.  I trust him very much and I know when he offers advice it is because he is concerned about my wellbeing.   But at this point in the game, I trust myself too.  And there is evidence in favor of surgery too – the same evidence the surgeon relied upon when deciding to clear me for surgery.    I am part of a patient group where I have, literally, seen spreadsheets of patient labs that were diagnosed with hyperparathyroidism, had surgery and got better.  My spreadsheet of labs looks worse than some of the other sets of labs I have seen.  My labs certainly don’t look as bad as some of the labs I have seen either – they aren’t off-the-charts high.   But they do look abnormal and there is a clear upward trend in both my PTH and my calcium.  I am not a doctor.  However, I do have a PhD in economics and if there is one thing I can confidently do with a high level of expertise, it is recognize a trend in a set of numbers over time.   The diagnosis for hyperparathyroidism is based on the labs – and my labs have been trending up over the last 18 months.

I also know, from my experiences getting diagnosed with Cushing’s and from reading about the experiences of other patients with hyperparathyroidism, that typically the patients with insanely high labs have been sick with tumors for years.  I don’t want to be sick for years – I want to catch as many problems as I can EARLY.   The downside to catching things early, as I think basically summarizes my experiences through the  medical nightmare of the last few years, is that your labs and scans look mildly abnormal.  Would diagnosis be more straightforward if I stayed sick and waited a few years for things to look worse?  Probably.  Would the damage to my body be irreversible and in all likelihood shorten my lifespan?  Probably.   I feel like I am being forced to choose between this unending battle to get diagnosed and treated or staying sick until there is a tumor the size of a pumpkin in me that will be impossible to miss on a scan.   I don’t want to struggle and fight at all, but if these are the options on the table, I am going to choose to struggle to get diagnosed, folks.   In addition to a desire to prevent irreversible damage, I also am stuck living with very real, disabling symptoms right now.  I don’t want to sleep half the day and be in pain every night any longer than I have to.   Hyperparathryoidism isn’t going to kill me if I wait a few more years to get diagnosed (although some of the other problems might), but it will leave me feeling terrible.

And if the surgeon and I are wrong?  If I don’t have hyperparathyroidism and he opens me up and finds everything is fine? I will have flown across the country and had unnecessary surgery against my doctor’s advice.  This is not an outcome I would be happy about at all, but I am willing to take the chance at this stage.  It is a relatively minor surgery and, worst case scenario, we have ruled out the parathyroids as part of my problem.  It was the same thing with my thymus.  We all agreed the evidence wasn’t 100% clear the thymus was a problem, but the suspicion was sufficiently high (based, legitimately, on my symptoms and scans) that it was worth taking it out and seeing what happened. And even though the pathology hasn’t (at least not yet) confirmed I had a carcinoid there, I GOT BETTER.  I stopped coughing and wheezing.  I stopped walking around with a purple spot in the middle of my chest.  Something happened.  Maybe if I had waited a couple of years, gasping for air in the meantime, the tumor would have grown and we would have clearly seen it on a CT and it would have easily been detected in the pathology.  I would have a diagnosis in hand and no doubt in the world about it.   And there is also a good chance it would have spread and been much more difficult to treat as a consequence.   I think I caught it, whatever “it” was, early and there is still a very real  chance it has already spread.  But at this point in time, I have no pathology report to confirm it and therefore have no treatment plan going forward.  Do you see my dilemma?

Second, the doctor that really seemed to move me forward several steps, Gandalf, has disappeared.  I saw him in July and I thought we made tentative plans to take care of a bunch of items – I was getting an Octreoscan that he was going to look at to see why I was still flushing, he was going to help me get a second opinion on my pathology, he was going to help me get a GI consult if my digestive problems didn’t clear up (and they haven’t).  Our plan was to stay in touch via email.  I saw him five weeks ago and have emailed him twice, but I haven’t received any response.  Not so much as an acknowledgment that he saw my messages.  I had hoped maybe my pathology got sent out anyway, but I have called the pathology lab at the hospital and it is still there.   Am I being impatient?  Has something happened to him?  Are my messages going into his junk folder?  Is he just incredibly busy (which I would completely understand).  Or has he, for reasons I don’t quite understand, become fed up with me and decided he is just going to freeze me out?  I don’t think I have been pushy or difficult, and M was with me at our last appointment and agrees everything seemed to be on track, but now I am questioning everything. I just have no idea.  None at all.  But this is very concerning to me and I don’t feel like I have much choice other than to keep forging ahead without him for now.   And I worry that forging ahead without him might also make him mad if it turns out he was just very busy and lining things up in the background while he hasn’t been in contact.  But how am I supposed to know and how long am I supposed to wait?

Finally, I am really frustrated with the bone doctor.  I had high hopes for him when I saw him in July.  He ordered tests, sounded like he was going to quickly figure out what was wrong with my sacrum.  But I have been back to see him twice now and it feels like am getting nowhere.  I showed him an MRI of my sacrum from June of last year that shows masses in my sacrum.  At that time, I asked him if he would order an updated MRI – I know if there is going to be any sort of intervention we would need to see an updated MRI no matter what.  Instead, he ordered an X-ray and an Octreoscan, which was fine.  At the follow-up appointment, he couldn’t find my X-ray in the system at all.  Couldn’t find it! And told me to come back in a month, when the Octreoscan was back.   I asked him again if he would order the MRI while we waited and he said “let’s wait and see what the Octreoscan says.”  So we wait.  I see him yesterday for the second follow-up.  He hasn’t looked at the Octreoscan or the X-ray and he claims he can’t pull them up and look at them right then and there.  So, why the hell am I coming back to see him, for the third time, if he hasn’t looked at any of the scans that were done two weeks ago?  I am prepared this time, though, and have the actual CDs of the X-ray and the Octreoscan in my bag.  I also have my laptop, which has the scans and the software needed to read them loaded on it, as well as screenshots from the scans.  So, I smile and ask him if I can be annoying and ask him to take a look at what I have to show him.  What is he going to say, no?

For the record, the report from the Octreoscan is annoying too.  It says my liver looked “mottled” at 24 hours (meaning there was some suspicious areas lighting up) and so the scan was repeated and now looked normal at 48 hours.   So, the conclusion is that my liver is fine.  But does this mean my liver is fine or that it isn’t?  Carcinoids, if that is what was removed from my thymus in June, often are not found until they have spread to the liver, so it seems pretty important to get a definitive conclusion on this.  I know the protocol for the scan is to scan at 4 hours and at 24 hours.  I also know that sometimes a 48 hour scan is done if there is significant bowel activity at the 24 hour mark.  But the liver is nowhere close to the bowel, so is it kosher to rescan at 48 hours because of suspicious activity in the liver?  And if the scan is clear at 48 hours, does it mean the liver is fine or does it just mean that the radioactive material is no longer bound to a tumor?  So many questions that I just don’t have the answer to.   The other problem with the report is that it doesn’t mention anywhere the fact that there looks to be an abnormality down by my sacrum.  That’s right, in the region of my body that prompted the Octreoscan to be ordered in the first place.

I showed the bone doctor the following screen shots from the Octreoscan.  See that black spot?  The picture on the left is my pelvic area as viewed from the side.  The picture on the right is my pelvic area from the back.  The black spots appear to correspond to something near my sacrum:

Screen Shot 2015-08-21 at 12.06.24 PM

I have other pictures too, pictures taken as part of the Octreoscan and at different points in time (4 hours and 24 hours).  The full body scan, for example, shows the same thing:

Screen Shot 2015-08-21 at 12.31.57 PM

This looks like it could be neuroendocrine activity to me.  The bone doctor agrees – this doesn’t look normal to him either and he doesn’t understand why the report doesn’t mention it.  I also show him this picture from the Gallium 68 scan (which is a much more sensitive scan than the Octreoscan for neuroendocrine activity) I had back in April, that seems to highlight an even bigger spot in the same location:

Screen Shot 2015-08-21 at 11.56.10 AM

See that circle and a diagonal dark area at the bottom of the picture (both marked with green arrows)?  That looks to be my sacral area as well and also seems pretty dark (the black stuff above is my liver and kidneys and, as they are working to clear the radioactive material from my body, they are supposed to be dark).   Is this something significant or is it just noise or incidental uptake?  I would be more inclined to believe that if I only saw this happen on one picture, in one scan.  However, given the same area keeps lighting up on different scans,  done at different institutions months apart, I think the possibility this is nothing is pretty low.  But of course every single radiology report says the scans have no abnormal uptake.

I ask the bone doctor if he will please circle back with the radiologist and ask him to look at this again.  I also offer to send him an email with exactly these pictures so he can pass them along to the radiologist so he can see exactly what I am talking about.  And I do this – I send the email.  But I honestly don’t think he will do it.  He seems very disengaged during the appointment, like he doesn’t want to deal with any of this.  He doesn’t even ask me how I am feeling.  All he does is tell me he agrees this doesn’t look normal.  And since the Octreoscan is read as normal, he finally orders the MRI of my sacrum. And tells me to come back in mid-October.

I keep thinking that the next doctor appointment is going to be the one where everything is going to fall into place.  That someone is going to take care of everything, take this out of my hands.  That this is going to require less work on my end at some point.  The reality is that has not happened yet and maybe it will never happen.   But that doesn’t change the fact that I need to keep moving forward until I get all of this figured out, one way or the other.

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Stress will make you sick

I remember well a conversation I had about ten years ago with one of my brothers.  At the time, he was completing his medical residency in psychiatry.  He was also a smoker.   We were having a drink together and as his older (and overbearing) sister, I couldn’t stop myself from asking him: “how is it that you have gone through medical school and you continue to smoke, given you know how bad it is for you?”   After hearing my question, my brother paused, took a long drag on his cigarette and replied:  “Do you know what is really bad for you?  Stress.”  We both had a good laugh at this point, but more and more I realize he had a point:  stress IS really bad for you.

I am acutely aware of the effect of stress on my health at present for two reasons.  First, I am under a lot of stress.  Being sick, whether it is acute or chronic illness, is stressful.   Pain, troubling symptoms, uncertainty, tests, doctors appointments are stressful.   Second, given I still have carcinoid syndrome, stress manifests itself physically in unpleasant and distinctive ways these days.    When I have encountered acutely stressful situations in recent months, whether it be an uncomfortable encounter with someone, a letter from the IRS (handy tip:  doing your own taxes a month after brain surgery may not be a great idea), or finding out I need another surgery, I end up running to the bathroom with what feels like dysentery and I start wheezing and break out in hives.   Sometimes, it is only when I start breaking out in hives that I actually realize how stressful a particular encounter is!  My body has developed a finely tuned stress-o-meter that is very hard to ignore.  As weird as this sounds, this is actually quite common for patients with neuroendocrine tumors and it has a medical explanation:  neuroendocrine tumors produce hormones (such as serotonin and histamine) and stress can cause large amounts of the hormones secreted by the tumors to be dumped into your system, causing exactly the kinds of symptoms I have been experiencing.  These days, I often have a stress-o-meter reading right about here:

Stress

This basically means it doesn’t take much additional stress for me to get physically ill.  I don’t want to live in the red zone on my stress-o-meter and am working very hard to try and get as far into the green zone as I can.   As a result, stress management has become an important part of my plan to stay sane and get my health back.  It is just as important as being careful about what I eat and continuing to chase down and treat the remaining medical problems in the queue.   Part of my stress management plan involves reducing stress through things like gentle exercise, petting the dogs, reading a book.  The other big part of my plan that has made a major difference is avoiding stress: limiting the amount of stress I allow myself to be exposed to.

One of the most important lessons I have learned from being sick is the importance of saying no and creating healthy boundaries.  I am by no means great at doing this, but as time goes on I am getting better and better.   There is a certain amount of stress in my life I cannot avoid at present, but this stress really is limited to my body, my finances, and anything that happens to my inner circle of loved ones – that’s a tiny set of people and issues, at the end of the day.   And when I do face stress that cannot be avoided, I force myself to set limits on it.  Upset about a bad doctor appointment or a negative test result?  I give myself exactly 24 hours to mope about it and then I let it go.  Period.  Ruminating over something that I have no control over and that happened last week, much less six months ago, is a really dumb way to use up my limited resources for handling stress today.

The rest of the stress I face in life is stress I can choose to avoid.  And I am making every effort at present to do just that.  I cannot – and will not – cope with drama when I am already in the red zone.  I will let passive aggressive (or aggressive) comments or questions slide off my back.  I will not worry endlessly if someone is upset at me over an unintended slight.  I will not feel obligated to help other people fix their problems.  I will not take the bait when I am poked.  I will quickly and quietly escort troublemakers to the door.  And I won’t beat myself up for that.  This doesn’t make me a selfish or callous person – I am simply putting my own oxygen mask on first.   If I allow myself to get sucked into avoidable stress right now, I have no one to blame but myself.

Saying no and laying down healthy boundaries stressed me out at first.  It is hard to do this and not feel guilty.  But with practice, this is getting easier and easier.  I am still far from being a Zen master, but I am getting better every day.  Not everyone has reacted well to the new boundaries, but I am okay with that too.  People that get mad when you put your own oxygen mask on first probably also failed to notice you were struggling to breathe in the first place.   Those aren’t the kinds of people you want in your life anyway.

You are the only one that can limit avoidable stress to protect your health, just like you are the one that is responsible if you get sick because you decided to eat fried chicken instead of kale (and sometimes it is worth it!).  If you want to have an oasis of calm, in spite of the stress you cannot avoid, you have to create it yourself.  No one can or will do it for you.

I have MEN1

I have been trying to sort out whether I have hyperparathyroidism (HPTH) for almost a year now.   Hyperparathyroidism is tumors in the parathyroid glands.  The tumors cause the parathyroid glands to produce too much parathyroid hormone (PTH).  The sole function of the parathyroid glands is to regulate calcium, so patients with HPTH end up with levels of calcium that are too high and high calcium, in turn, makes them sick.

I have had my calcium and PTH checked 14 times since November 2013.  And there has been a clear trend.  First, my calcium increased by almost a full integer (calcium typically remains in a very narrow range, fluctuating up and down by 0.2 or so).   Then, my PTH slowly inched up as this new calcium level remained roughly the same.

Despite being told repeatedly not to worry about this (including quite recently), I was always suspicious.  As was the case when I had Cushing’s,  I did my homework and read extensively – the experiences of other patients, the very informative website put together by a well-known parathyroid surgeon, Dr. James Norman (www.parathyroid.com), and medical research.  I discovered lots of patients had HPTH with labs that looked pretty similar to mine.  Mine were definitely on the lower end in the beginning, but the trend over time was pointing more and more towards HPTH.

Based on my labs in 2014, I got into a study at the NIH on hyperparathyroidism and MEN1.  But I was told I didn’t have it while I was there.  The worst experience I ever had with a doctor in history, and I have seen A LOT of doctors, was with a local parathyroid surgeon that I consulted with after my trip to the NIH.  He not only refused to look at my PTH labs from outside his hospital but also said, to my face, he didn’t think I had Cushing’s last year and that I should “go home, live my life and stop chasing problems that don’t exist.”  This was seven months ago and I was very sick at the time (I am still pissed about this.  Not helping a patient is one thing – attacking them is another).

Because I was not convinced I didn’t have HPTH, I decided to go ahead and get another opinion anyway.  Just to be clear, and as I have said many times before, I didn’t WANT HPTH and I wasn’t convinced I had it either.  But I did know I was very sick, some of my symptoms were consistent with HPTH, and these labs (along with my bone turnover markers and my ALP) were the only ones that were coming back abnormal.  So the only logical thing to do was to continue to chase this down.  What else was I going to do?

The parathyroid surgeons I consulted with this winter agreed that my case was not a clear-cut case but was certainly suspicious and they ordered more tests.  Right around this time, I started having severe problems with what I would later learn was carcinoid syndrome.  Since parathyroid tumors are typically benign and carcinoids are neuroendocrine cancer, I decided to put the investigations into HPTH on hold while I focused on the carcinoid.  So I didn’t complete the PTH tests.

Fast forward to July.  Thoracic surgery to remove what we suspect is a thymic carcinoid is behind me, I am investigating the masses in my sacrum and the bone doctor orders another round of PTH and calcium tests.  I see that my PTH has tripled since it was last tested this winter.  I am of course excited by this news.  This confirms my suspicions.  When I see the bone doctor on follow-up he tells me he doesn’t think I have HPTH.  I politely tell him I don’t agree, but don’t push the issue as I really want his opinion on the masses in my sacrum.  And I send my new labs back to the surgeons I consulted this winter and I finish their tests.

Shortly thereafter, I get a call from the parathyroid surgeon:  I have been diagnosed with HPTH based on my new labs and the trend in the labs.  This time, the surgeon is definitive about the conclusion:  there is no doubt in his mind and there is no doubt in mine either.   The surgeon tells me that my labs are most consistent with parathyroid hyperplasia, which is a situation in which all of the parathyroid glands tend to become enlarged (as opposed to having a solitary adenoma on one parathyroid gland).  This is a relatively common form of HPTH in MEN1 patients in particular.  Because of this, all four of my parathyroid glands will be thoroughly examined during the surgery and all of the enlarged ones will be removed.  Because I am a tricky case, my surgery will occur in the hospital rather than at the surgeon’s private surgical suite.  The surgery itself is very straightforward and non-invasive.  I am not worried about this part at all.  I will post more about this later.

Given my history of pituitary tumors, a diagnosis of hyperparathyroidism confirms the clinical diagnosis of MEN1.  Add to that the carcinoid and the nails are firmly hammered into the coffin.   I feel a mix of relief, shock, fear, anger and sadness that I had to fight this hard to figure it out and that this is indeed what is wrong with me.   This is a scary diagnosis, and although it is one I have been worried about for a year, it is going to take time to accept it.  But I have had to accept lots of other things over the past few years and I tell myself that in time I will accept this too.

Life is what happens to you while you’re busy making other plans

I am pretty OCD by nature and so it has been easy to turn this quest for medical answers into an obsession.  For the past couple of years, I have tried to put everything else in life behind getting diagnosed and treated.  This was not completely irrational, as I was/am sick and very limited in what else I could do besides try and figure this out.  But the other big motivation was simply the belief that the harder I worked at fixing this problem, the faster I would get better so I could go back to work and my regular life.   With running and work and most every other challenge I had faced in life so far, hard work lead to the desired outcome:  a degree, a marathon, a publication, a promotion, you name it.  I figured that the same strategy could be applied here and with the same effect.  The problem is brute force is only getting me so far: this is just not a problem that I can completely solve and fix on my own.

Stage one of the five stages of grief is denial and, despite dealing with the reality of my situation daily, I do think I have been in denial about the fact that this “temporary” health issue is probably going to be permanent in one form or another.  Whenever people try to ask questions such as “if you can’t run again, what will you do instead?” or “if you can’t go back to your job (with it’s crazy hours), what will you do instead?” my response has always been “I am not even going to go there.”   The only thing that has kept me from completely melting down many days is the belief, however misguided it may be at this point, that I was going to return to my former life – marathons, crazy work hours and all.   But as the days and weeks of being sick have now turned into years, I am forced to face the fact that I need to figure out a way to make the most of today too.  I need to start feeling and acting like the days and weeks that are passing by now are valuable moments.  This is not the life I want, perhaps.  But it is still a life.  And it is not just my life that is being put on hold – M’s life is being put on hold  too.  So, I have started to use some of the time I used to spend becoming an amateur medical researcher/radiologist/endocrinologist (and a professional harasser of doctors) for other purposes.  I am still sick and I still can’t do most of the things I want to do, but there are things I can do to try and improve my health NOW and to enjoy life more NOW while I wait for the other medical problems I have to get fixed.

I have been reading a lot about nutrition and am very focused now on maximizing the amount of nutrients that go on my plate.  I was always a reasonably healthy eater, but now I really want to give my body the best possible chance to recover and get better while I am still sick. I also started exercising again.  I can’t do much, but I am trying to do something every day I feel well enough to try.  I started with walking.  The walks used to be short and painful, but I have been able to gradually increase the length and speed of my walks and reduce some of the discomfort.  Part of this has been made possible because I recently caved in and started taking the  pain meds I had been prescribed, which for stupid macho reasons I was refusing to do before (and this only after I got a lecture on the consequences of chronic pain from my psychiatrist who told me to stop being a “Calvinist” with the pain meds).  Now, I am almost up to five miles at a time.  I have been walking with a friend of mine at times, and also with M, which has been a great way to sneak in some quality time with those I care about too.  We have an erg at home, and the other day I was able to erg a little.  I used to be able to easily erg 10,000 meters at a time and was super happy that I was able to crank out 2,500 meters on my first try.  Not fast.  Not pretty.  Not painless.  But I did it!

I still need to sleep many hours during the day.  I still have a lot of pain.  I am still very limited in terms of how much stress, mental and physical, I can handle without getting sick.  I still don’t know if I will be able to run a marathon or go back to being a workaholic.  But these little steps have enabled me to lose about 15 pounds in six weeks, to improve what I am eating, to spend quality time with people that make me happy, to enjoy a few activities that make me feel good about myself.

It’s not the life I want, but it is a start.

Taking Stock

There are a lot of things going on at once, so I am going to summarize what has happened so far and what is outstanding.

Here are the problems that have been solved:

1.  Pituitary tumors causing Cushing’s.  I had neurosurgery to remove these in February 2014.  So far, no signs of a recurrence.  Diagnosed based on symptoms, multiple labs indicating high cortisol and a dynamic MRI indicating the presence of pituitary tumors.

2.  Thymic carcinoid.   I had thoracic surgery to remove my thymus in June 2015.   Diagnosed based on carcinoid syndrome and Octreoscan indicating area in anterior mediastinum suspicious for a neuroendocrine tumor.  Some of the symptoms of carcinoid syndrome (i.e., coughing and wheezing) disappeared and others (i.e., flushing) didn’t go away but became less severe.   No tumor was identified in pathology.

Here are the remaining problems and where I am in terms of chasing them down.

3.  Need to get a second opinion on the pathology from #2 as it has to be wrong.  It just doesn’t make sense the Octreoscan lit up in this area and my symptoms got so much better post-op and there was no carcinoid in my thymus.  I’m waiting to hear from Gandalf on this, but will come up with a different plan in the event he isn’t able to help me.

4.  I still have some signs of carcinoid syndrome and so we need to figure out where the rest of this little bastard is hiding.  I am getting an Octreoscan and hopefully something will show up and allow us to form a plan to evict the remaining neuroendocrine tumor(s).  I know enough from experience and talking to other patients that the Octreoscan may very well be a dead end, as they don’t pick up all neuroendocrine tumor activity.  Not by a long shot.  But all I can do is try!

5.  I have masses in my sacrum (and I suspect maybe my pelvis too, based on some new pain I have been having over the past six weeks).  I have had an x-ray for this (but haven’t seen the results) and the Octreoscan was ordered in part to try and figure out whether these masses are metastasis from the NET in my thymus or something else.  Waiting for follow-up with the bone doctor on all the results.   My best guess is that a biopsy and/or surgery (or some sort of treatment) will be coming in the relatively near future.

6.  My parathyroid labs are elevated.  The bone doctor doesn’t think they are a sign of primary hyperparathyroidism (i.e., parathyroid tumors).  I disagree.  My plan is to keep testing to see whether the upward trend continues.

7.  I am still having some malabsorption/digestion issues.  This is almost going on a year now.  Is it because of the carcinoid?  Is it a sign of another tumor in my pancreas or somewhere else?  Is it something totally unrelated and benign?  At this point, I have no idea, but I am hoping a combination of an endoscopic ultrasound and the Octreoscan will help rule some of these possibilities in or out.  Hopefully both sets of tests will happen soon.

8.  My IGF-1 (a crude proxy for growth hormone, which is produced by the pituitary gland) keeps dropping.  The pituitary hormone TSH has also been suppressed for quite awhile.  This might be a sign of hypopituitarism, which is relatively common after pituitary surgery (see #1).  I need to get a GH stim test to determine whether the drop in IGF-1 is due to growth hormone deficiency.  I am going to see the Wizard this month to get the test and to discuss the state of my pituitary (and all these other issues).  It’s also possible that some other hormone is suppressing my IGF-1.  But this should be more clear once a growth hormone deficiency is ruled in or out.  If I am growth hormone deficient, this could certainly be at least part of the reason I still feel so crappy.

9.  I still have very bad bone pain, but this is likely due to #5 and hopefully whatever treatment I get will take care of at least some of this pain as well.

10.  I am very fatigued starting in the early afternoon.  If I don’t lay down and have a few hours of solid sleep most afternoons, I feel really ill.  This is not normal fatigue at all and it doesn’t feel like the same sort of fatigue I had when I had Cushing’s either. I don’t know exactly what is causing this, but some combination of #4-#8 are likely responsible.

11.  Are #1-#10 all caused by the same underlying disease process?  And does this mean more problems of the same nature are coming?  Probably.  But it is likely going to take time for these questions to be answered with any precision and for me to therefore get some sort of unifying diagnosis.

This is still a large set of problems.  But taking care of #1 and #2 made my life much better and I am optimistic the other problems will be diagnosed and fixed in time as well.