Friday, August 23, 2013

Here We Go Again Part 4

 I apologize for going on and on about this topic, but out of sheer frustration, I've decided to keep going.  Maybe there are some other people out there who can relate.

I've been told hypothyroidism is very common, so wouldn't you think the treatment would be simple?  Oh, if it was only that easy. 

Being a thyroid patient can be a frustrating thing.  It's a Numbers Game.  The most important number to most general practitioners and endocrinologists is the much revered TSH level.

The TSH test measures the levels of TSH or thyroid stimulating hormone that is made and released by your pituitary gland. Your pituitary can sense whether there is enough thyroid hormone in the bloodstream, and it releases TSH when it detects insufficient thyroid hormone.

 I don't pretend to understand most if any of the scientific study and research, but I am really, really familiar with the good ol' TSH as it relates to my well-being.   Dr. H was a slave to the TSH number, keeping my numbers on the high end of normal which kept my symptoms at the low end of 'I don't feel horrible, but I don't feel good'. 

 And once we owned a computer, I found out I was definitely not alone with my frustration.  There are several websites dedicated to the topic, Stop The Thyroid Madness is one, and an outstanding patient advocate I've learned much from is Mary Shomon.  I've joined online forums and have met many other people all going through essentially the same thing.  We're all, in Ms. Shomon's words,  'sticking our necks out' looking for better medical care and freedom from the rigid TSH regime.   There are scores of us searching for enlightened doctors.

After Dr. H bid me adieu, I was on my own, looking for a new physician.  I think it was 2000 by then.  (The year, that is, not the number of doctors I went through.)  I had one refill of medication left, and no idea where to start, but at least I had thirty days.  As luck would have it, I took my father to see his physician one day and he invited me to come into the exam room to discuss Dad's health.

 Dr. E was a Doctor of Osteopathic medicine, or DO, for short. Now here was a doctor who truly believed in family medicine for he knew my mother's name and remembered things my folks had told him from previous visits.  This was a doctor who probably would have remembered my pet cat's name; he was very caring. 

As a result of chatting with Dr. E at my father's appointment and incidentally bringing up my doctorless state and my thyroid struggles, his eyes lit up.

"I'd like the chance to be your physician.  Thyroid issues interest me."

Done deal.

Dr. E ended up being the answer to my prayers.  He was very knowledgeable on hypothyroidism,  and also open to new information along with being very willing to treat my symptoms by adjusting the medicine.  And speaking of medicine, he wasn't able to get Armour at that time, but he did prescribe a very similar med for me right away, one that contained both T3 and T4, not just synthetic Synthroid which is a T4 only medication.  Those were the best years of my life as a thyroid patient.  I started to feel truly well.

Imagine my dismay when a short two years later, Dr. E announced he and his family were moving to another state.  Now I had to find yet another doctor.

His interim replacement was a semi-retired MD who immediately refused to refill my prescription for the T3/T4 drug.  He took one look at my TSH levels from the lab work and said I was overmedicated on an inferior, antique drug and prescribed Synthroid again at a lower dose.

I protested, it had taken Dr. E and I some time to figure out the optimal levels for me, and I knew lowering the numbers and changing back to Synthroid wasn't going to work.    Synthroid is a good drug for many people, I'm sure, but it wasn't the gold standard for me.  I did better on the T3/T4 combination.

I told the temporary doctor I didn't want a change in dosage or medication since I knew I felt much better on what I was currently on.

"You'd feel better if I prescribed you cocaine, too, but I'm not about to.  Your TSH numbers are much too low; I think you're just looking to lose weight."  (I am not making that up, he really did snarkily say I'd feel better on cocaine.  Sarcasm was his strong suit.)

I was devastated.  Dr. E's former nurse told me to wait it out until a new replacement doctor could be found and maybe things would change.  I went back on the Synthroid and slowly started to slide back to feeling unwell again. 

A new doctor was hired for the practice, but no help would be forthcoming from him.  He didn't like the look of my cholesterol numbers, but he didn't like the idea of statins, either, and said he felt since I had no other risk factors, it was up to me.  I declined the statin therapy.  He, too,  would not prescribe Armour and the T3/T4 drug I had been on was no longer available.

 I got the same song and dance I'd had before, Armour was inferior, old-fashioned and made from ground up sheep thyroid.  Interesting how every doctor had the same rhetoric on the drug, but the animal it originated from continually changed.  (Armour is actually made from dessicated pig's thyroid glands.)  

I was kept on Synthroid and my TSH was held at the upper end of normal.  I wasn't feeling very well, but there was no budging from the doctor, nope, you're adequately treated according to the TSH levels.  Case closed.

I moved on in search of another good thyroid doc.  

Friends gave me recommendations, but usually I couldn't get in because their practices were booked solid or I found out they wouldn't treat the thyroid any differently either.  All I had to do was mention the word 'Armour' and they looked at me like I was an idiot.

 No way, lady.  Not gonna prescribe that stuff.

 I saw a doctor for about a year who refused to show me my lab test results until I demanded them.  I knew I hadn't been feeling well again, and when I saw the TSH level of 5.6, I was stunned.  I asked him why in the world was my TSH so high?  Historically, I felt my best at 1.0 or slightly below.  He said my current 5.6 wasn't high at all since years ago, 6.0 was the standard, and I was still below that number.

Wow.  The new standards had been set to 3.0 being considered the upper limit years prior, and I told him so.  Yes, he knew that, but he personally thought 3.0 was much too low of a number and preferred to keep his patients near 6.0. 

Wow, again.  Great idea, keep 'em coming back to see you because they feel awful.

"Would you like to try the newest antidepressant?"

No, in fact I would not.  I had weaned myself off of them when I was on the T3/T4 medication and hadn't felt a need to use them any longer.  Ten years was long enough. 

Next!  Time for a new doctor.

Meanwhile, back in the online thyroid communities, patients were still singing the praises of feeling so much better on Armour.  Not everyone, to be sure, there are still many people who feel just fine on Synthroid, especially if the doctor is willing to work with the patient to find the perfect level.  Not many doctors will do this, because if the medication is too high, it can push a patient into hyperthyroidism which is also not a good thing.  There is a fine line between too much and not enough and most doctors like to err on the side of caution.  I guess I don't blame them, once again due to lawsuits, but far too many people like myself are chronically under-treated and left with lingering symptoms of varying degrees.  I was jealous of those who were able to obtain Armour. 

Finally, I found an endocrinologist whose practice was about fifty miles away.  His nurse said he was open to working with patients on optimizing their treatment.  I found he wasn't open to prescribing anything but Synthroid, but if he was willing to tweak the dosage, well, it was better than nothing.  He was a doctor who did order the TSH tests, but didn't necessarily go by just a number on a piece of paper.  If I told him I didn't feel well,  he was willing to increase or decrease dosage at my discretion.

We had a true doctor patient partnership with the respect going both ways, but nothing good lasts forever.  A year later, his wife was transferred to another state and I was stuck looking for yet another MD.

So there you have it, this leads me back to 2010 and my experiences with the clueless Nurse Practitioner who sent me for a ride in an ambulance and a no-expenses paid night at the local hospital.  That was expensive and truly not fun.

Then, on this list of who's who in my dysfunctional wellness quest, let us not forget the Polar Bear MD of 'Walk 10-15 Miles a Day Fame' who came recommended from a cousin of mine (so far, she was one of a kind, thank goodness) and then yet another endocrinologist who seemed really bored with his job.  He was also a strict devotee of the Magical TSH range, sorry, if you don't feel good at the Magical, Mystical TSH number plucked from the Air, too bad, so sad.  He eventually left his practice, too.  I cannot even recall his name.  I'm sure he can't recall mine, either.   Marge...was it Marge? 

For those of you keeping score, stay on your toes, there may be a quiz later.

I was also sent to a rheumatologist who chewed me out for wasting his time since I wasn't a candidate for that disease.  He did manage to diagnose my sleep apnea, however.

 I didn't have rheumatoid arthritis, thank goodness, but he figured out I snored and it turns out sleep apnea can bring on symptoms of arthritis. 

I'm still waiting for my somnologist (sleep doc) to fix my thyroid.

Or finish Castle Aaargh.

Either one is a challenge.


FlowerLady Lorraine said...

Dearest Karen ~ Your sense of humor is wonderful, in spite of all that you have gone through and are going through.

Love, hugs and prayers ~ FlowerLady

Alison said...

I'm so glad to see you still have a sense of humor. I've been on vacation for the last couple of days, and reading these when I can. I usually have to look around to make sure I haven't missed one. I remember the Polar Bear doctor, and the ride in the ambulance.