Some disclaimers

1) this is our family experience, it may not be applicable to you

2) this document is not complete, for one, writing it is emotionally difficult
3) we have done foolish things, but they seemed the least foolish choice at the time
4) we are in a fairly good place regards the hypothyroid now, we have found a doctor willing to work with us
and set dose by blood levels of T3 and T4
5) Yes, I have a doctorate. NO it is NOT in medicine. I am an engineer. Opinions on thyroid dose setting
are personal opinions, I think the measures taught to M.D.s are wrong, but that is my opinion.
6) Feel free to share with your partner, family members or your doctor, if you think there is any utility to that.
______________________________________________________________________________________
Our family adventure with thyroid disease started with a diagnosis of hypothyroidism for my wife in 1991.
Clearly, in hindsight she had been hypo- for some time before that. She felt she was dying, and so took out a
$1million term life insurance policy, and the required medical test showed the hypo-. She hadn't been sure
she'd see much past our son's fourth birthday in December that year.
We had a really good family practice doctor at the time. He checked up on hypo-, asked some specialists (i.e.,
endos) and told us -- no problem. She was started on T4 and we were told management of hypo- was simple.
She felt a whole lot better.
(My wife had a few years earlier been diagnosed with asthma. She had to have inhalers, several times a day.
But after starting on the synth-T4, she soon only needed the inhaler a few times a week.)
Roughly a year later, a party hosted by one of my wife's sisters (a nurse) one of the attendees (a doctor)
mentioned that my wife "looked" hypo-. She went back for a checkup, and, yes, she needed a dose increase.
That's when we started to learn that managing hypo- wasn't as simple as we, and our family practice
doctor, had been led to believe. I started reading up about hypo-. After all, I already had one doctorate, in
engineering, and I wasn't trying to learn all of medicine or even all of endocrinology.
Two years later our son started having problems in school, but it wasn't until another two years passed that he
was diagnosed as hypo-. He was diagnosed near the end of his 3rd Grade year, and only because we insisted
he be checked for it. After all, everyone knows hypo-thyroidism is a disease of older females, young males
don't get it. By now we were in the mid-90s and we had just started talking with the doctor about dessicated
thyroid or T3/T4 combos.
(Interestingly enough, a few years before that our son had been diagnosed with asthma. He needed inhalers,
not as much as my wife, but still. After getting started on synth-T4 he no longer needed the inhaler very
often.)
We continued for a few years this way, periodic testing with occasional dose adjustments. Testing was TSH
only, dosing was synth-T4 only.
Then in Feb 1999, the study on T3/T4 combos came out and our doctor was willing to try my wife on
dessicated thyroid. The one month follow-up led to a dose adjustment for her, and a Thyrolar Rx for our son
(MD was honest, he felt he could be called in front of a board if he prescribed Armour to a minor).
Before he was on thyroid, our son was "blue" -- he had regular nightmares. After starting T4, he wasn't "blue"
and he stopped have everynight nightmares -- but when he started with the Thyrolar, after one day on it -- he
was singing inside (his words for it).
That was 1999. We have had much more experience with hypo- and dosing and such since then.

Continuing, the next few years were rather quiet on the hypo-thyroidism from for our family. There were
other things going on, and being on Armour/Thyrolar with dose set by symptoms and serum levels of T3 &
T4 was loads better than before. Part of what was going on was job changes, and late in 2002 I accepted a job
designing measurement instrumentation for a rocket science research group at Dartmouth College.
Late Spring 2003 we had bought a house in the Upper Valley (of the Connecticut River) area and shortly after
we managed to sell the previous house in Massachusetts. We also now had new doctors, in the DartmouthHitchcock Medical Center, a.k.a., DHMC, who were not happy with either dessicated thyroid/thyrolar nor
with suppressed TSH levels. Once again, the "fight" was on.
The first year in the Upper Valley, our son was away at a boarding school. We argued that fiddling with his
dose when he was distant from the doctor was probably not a good idea. So, our son was kept on his previous
dosing. My wife, however, got experimented upon. (And yes, I use "experimented upon" with due
deliberation here.) I had a fair idea then that the MDs really did NOT know what they were doing, but we
were assured she could go back to the prior dosing regimen if symptoms showed up. (So, we were also lied
to. The MDs may have been lying to themselves, or not, I don't know. But they lied to us on that point.)
This was the "Valley of Death" from late 2004 to late 2005 that you can see in the left side of
https://www.facebook.com/photo.php?fbid=1048961067786&set=a.1048957547698.2009504.1338500958&type=3

where T4 went into the bottom 10% of the lab reference range with T3 dropped below 20%. Asthma
symptoms came roaring back. She needed two inhalers, a fast-acting bronchodilator and an inhaled
corticosteroid just to manage symptoms. At the same time she developed severe joint pain in all the finger
joints, with some of them swelling. That was diagnosed as arthritis. Of course, the usual suspects, coldintolerance, brain-fog, difficulty sleeping while being constantly tired, regular use of stool softeners to
manage gut problems constantly bordering on severe constipation, &c &c
But the promise to return to prior dosing regimen? Nah, not until we took matters into our own hands. But I
get ahead of the story.
We wouldn't do synth-T4 only. So my wife was put on synth-T4 and cytomel (which is synth-T3), at a
combined dose level lower than she had been on in Armour, to try to get TSH out of suppression. If you look
at the graph you can see that didn't work. TSH barely budged upward, never to get up into the normal range
even as serum levels of T4 and T3 went into free fall.
After too long with all the symptoms, old and new, we decided jointly to be non-compliant and upped the
dose she was getting. The asthma immediately subsided, instead of several times a day, the inhaler was
needed a few times a week. The finger joint pain stopped cold, and the swelling started getting less. We also
started lobbying the doctors about getting back on dessicated thyroid, with synth-T4 to balance the T3/T4
ratio. This involved a back and forth between the primary care physician and the endo-du-jour out of the
endocrinology department. Eventually we managed to insist on consistency in the endo, which made it easier
to lobby, since we weren't starting over from scratch every visit.
As an aside, I will note my observation that 90% or more of all endocrinologists are really diabetes-ologists
who rarely deal with any other endo- matters. So when you hit one of those for thyroid issues, you get the
textbook "all you need is T4 and dose is set by TSH" mantra. I have investigated both of those. The "set dose
by TSH" has NEVER BEEN TESTED, let alone proven. There are studies that talk to one or more aspects
of it, and every one of them basically indicates that "set dose by TSH can NOT possibly work using the
TSH range for people with intact thyroid glands", many seem to indicate it can't work at all. As someone
with a doctorate in a technical field (not medicine) I can safely say that neither leg of the hypothyroid
"gold standard" of treatment can be considered "proven". Neither T4-only nor "set dose by TSH"
qualifies as "proven". In fact, the "set dose by TSH" part can arguably be said to be disproven by studies
that are already published in the medical literature.

Anyway, as we were trying to get my wife back to reasonable functioning, our son returned and took the next
school year locally. Since he was a minor, he was "managed" by a pediatric endocrinologist. So his dose got
reduced, and he started needed the asthma inhalers &c. That was his 11th grade year, and he finished all his
courses (mostly honors courses), in spite of missing somewhere between 1/3 and 1/2 of all school days due to
illness. Of course, his grades took a hit.
Somewhere in that time frame we got from synth-T4 and cytomel to dessicated thyroid (Armour before the
reformulation, then Westthroid, then Naturethroid) supplemented with T4. There were still the attempts to
"reduce dose to get TSH in range" you can see one from mid 2006 to early 2007, but we wouldn't let the T3
and T4 levels drop so much, so the effects were not so dire. I also believe that having about 2/3rd of the total
thyroid replacement from dessicated thyroid helped.
Here you can see the left side is only dessicated thyroid, so T3 is way up while T4 is down:
https://www.facebook.com/photo.php?fbid=1048959187739&set=a.1048957547698.2009504.1338500958&type=3

again with 2005-2006 dip trying to bring "TSH into normal range" b*llsh*t, followed by the switch onto the
combo synth-T4 and dessicated thyroid with the levels brought up.
In one of the reduced-dose periods, my wife got a sinus infection that lasted through FOUR ROUNDS OF
ANTIBIOTICS (amoxicillin and clavamox) and lasted 135 (one hundred and thirty-five) days -- FOUR
MONTHS. That only got knocked out when they finally went to real zinger antibiotic, Zithromax, having
tried amoxicillin and then clavamox a couple of times each with only short-term relief.
There is more yet, but I am tapped out for now. Recounting this involves, for me, some reliving of it -- and it
was and is stressful and unpleasant. So, I'll try to get the rest down eventually.
(That was a while back, haven't got there yet.)