Vive LaFrance: Life as I know it

I’ve told many tales of doctors trying to gaslight me — all true.

I’ve mentioned my functional medicine doctor. He is quite brilliant, alas, the evil overlords of insurance companies hold my health in the balances. 

You see I have been “wired and tired” for over 25 years. I have discussed, pleaded and complained about the never ending exhaustion. I typically get the shrug. My thyroid is always a question that my husband and I have had because we are intelligent and use common sense. Of course we were right but for years I was told “it’s not your thyroid… your labs are all fine.” The exhaustion is at at least partially caused by my thyroid. Sure they test TSH and T4 but what about T3 and free T3 and all the other thyroid tests no one‘s ever heard of?! I would ask for further testing and they would say “those are garbage tests, they mean nothing.” In the end it is EVERYTHING!! I finally ditched conventional doctors for a conventional doctor turned functional. Miraculously it would seem but really it’s quite logical… starting at the lowest dose of bio-identical Thyroid HRT, the wired was gone. And I NAPPED! I have been so wired and exhausted that I have not napped in over 20 years. My husband was shocked! I was an amazing sleeper until so many meds were forced upon me and no correct diagnosis. I learned to say no to certain classes of drugs and now just about every prescription. There are still ones I need but that’s a whole other story. Pick your poison. Doctors need to work harder than picking a prescription out of a hat and say “here try this.” I have been on over 200 medication for migraine and pain alone and this has nothing to do with narcotics. It has nothing to do with acromegaly medication or thyroid medications either. That’s a whole hell of a lot of prescriptions. I simply will no longer do it. 

Why can’t doctors think for themselves. Last year I read old medical files before giving them to new doctors (who declined to be my doctors in the end because I’m too complicated) and found lines like “finally has stopped complaining about thyroid, other thyroid meds, etc.“ if only I had requested all of my medical records every year and called them out on every bullshit lie! Maybe I wouldn’t be in this degradated state that I’m in… maybe I would’ve taken on the world of medicine knowing full well that they are paid to be pill pushers, found answers, demanded better for all of us! I could have…

I am on a much higher dose of bio-identical thyroid HRT at this point. I am a work in progress. So many years. So much damage… It will not happen quickly. I keep praying it’s going to keeping fixing all that is broken. I have to remain steadfast in my patience and prayers.

One HRT I desperately need is Growth hormone. Oh, what irony! Too much GH is acromegaly. But after surgery, medication and, most of all, radiation to my pituitary, I do not make enough. GH is needed for, well, everything. It could help with my pain and mobility, my completely broken metabolism and so much more. Insurance companies have a deemed it a “sports enhancement drug” and are extra stingy approving it. My IGF1 from May 2021, was still considered normal, even if at the low end. My functional medicine doctor explains that I was functioning on a much higher dose for most of my life — it’s too low for me! Before I met him I had been complaining about my declining IGF-I level for about five years. As a functional medicine doctor he’s blacklisted from insurance companies and he does not work with them because it’s a waste of his time. It is a bit unfortunate but understood. He recommended that I see a pituitary endocrinologist. I would be able to get it covered by insurance easily because that is what they do. Of the four pituitary endocrinologist I have had over the years one has told me she would never prescribe GH for fear of triggering a new tumor. Seriously?! What if that’s the only thing that will make me better! It’s my choice! But I did have one who in the past told me, one day I might need GH. So I called the Pituitary Endocrine Department at Massachusetts General Hospital (MGH) and got back in with the doctor and planned a trip. All my years in Boston looking for a diagnosis and I never ended up in front of Dr. N. SIGH! I’ve always needed a flight or a long drive to get to her but she’s always worth it. I always encourage people to figure out a way to travel to see the right doctors.

First thing Dr. N says, yes of course she’ll write me a prescription for growth hormone and that she has many patients with acromegaly/post acromegaly on GH. Then she looked at my numbers from May 2021 and said… Insurance will never cover GH with your iGF1 that high and it is just too expensive for the average patient. UGH! 

She does several things on this visit. 

She validates that I am in excruciating pain and have loss of mobility. I haven’t seen her in three years. I went through the new diagnoses, like small fiber neuropathy, The SFN specialist who dismissed me because I’ve been on every medication, don’t come back. I went through all the gaslighting with no answers, no steroid shots and more “don’t come back without seeing a psychiatrist.” I told her how I had to show the local pituitary specialist and neurosurgeon my phone with a study pulled up in order to have a hip x-ray. She said oh, there’s a rabbit hole of issues with hips and joints with acro patients. …Deep breaths… I have not been wrong once. Validation, is unfortunately necessary in the medical world. I told her I could only find evidence that they exist but they declined to pursue any studies. This is on PubMed. They know it exists but no one is doing anything to help. Why? 

Dr. N said “you do not need a psychiatrist, you are not crazy, you need pain relief. …I know you’re in pain and I’m sorry that I cannot help but I’m going to try and find a way to help.“ She also said that is what every doctor should be saying to me. I already know this but there’s that validation that I so desperately need. It’s very hard to seek out doctors when they just keep calling you crazy and tell you to go away. I just need help.

So what can she do for me… A glucagon test. Her nurse squeezed me in two days later. (Which is why I had us at a hotel two extra nights – something always comes up!) I’m always so appreciative of the doctors and nurses who acknowledge my problems, know I have traveled quite a distance and, no, I can’t just pop back in in a month or two – Which is the normal amount of time it takes to schedule out this test. So I went back for a three hour test. The first hour and a half was not so bad… Just drowsy. The second half was horrific. The day was wrecked but it’s worth it.

The thing about the glucagon test is it can show a slightly more sensitive number for IGF-1 which would put me in the bracket for getting growth hormone covered by insurance.

Why all the hoops?! Doctors should be making these life altering decisions with the patients. Not the unseen insurance company.

My IGF-1, done before the glucagon test, was 50 points lower than it was in May. (this is not unexpected because radiation can kick in and keep cycling through at any point from the time it was administered to, well, forever). That alone should be enough to get me growth hormone. I have a phone call with the good doctor next week. It will be interesting to see what the glucagon test reveals and if I have a chance to try the only thing left that may give me some quality of life.

The pain is devastating. I can rally and push through at times but the recovery is double time if not more. Pain keeps increasing. I am fighting for my life — I deserve every possible avenue to be tried. I deserve quality of life. We all deserve quality of life if we are trying! 

I shouldn’t be beholden to arrogant and ignorant doctors. They don’t deserve a medical license. I shouldn’t be beholden to insurance companies. They aren’t doctors and they don’t know the first thing about me. Dollar signs need to be removed from the equation. 

My right to better health should not be tied to a number. Our blood, our hormones and all the rest are always in flux. We are all individuals. If the number I have to be under is 90, so 89, but my lab work says 90 or 91 they say I don’t need it. I’m “in the normal range.” We are all individual. There are so many factors that contribute to these numbers there has to be a sliding scale.

If there were real studies going on to help those in “technical remission“ from acromegaly — I’d be involved. I am part of an “information gathering study” for post acro treatment patients but I was told it would take years to sort through the information and decide what to do next. This is unacceptable. 

Pain management needs to be better understood, doctors better educated and treatments universal across the country (like ketamine infusions for pain management being available everywhere, in every state and covered by insurance, everywhere, not only in cancer hospitals). Patient’s first. In the last two years I have been defamed in my medical records with lies that affect the next doctor who can see it before even meeting me. They copy and paste from the first “bad review“ and add a sentence or two. This digital world, at first, due to so many records that my medical team needed, seemed so very helpful. I did not see it for the evil that it is. Medical tyranny at work. They’re controlling things they have no right to control and it’s affecting my health and the health of so many others.

Most doctors do not want to help me. Makes you wonder why they’re even doctors. They’ve proven this time and time again. But I will not give up on me. I do have two doctors (neither local) who are on my side and will do what they can. I will fight on.

So, now I wait for results and see my next move….