Hashimoto's Toxicosis

This tale is titled Hashimoto's Toxicosis, because Jessi63, the first responder down there, had asked me online what it was. I started to post a response, but it got a little lengthy, so I decided to put it in a journal.

Somehow, after I wrote the title, I ended up telling my whole thyroid history, in an abreviated form (LOL!), but I never got around to answering her question. So I have editted it. Sorry, Jessi. :)

My mental capacities and short term memory ebb and flow. :)
But this was very cathartic!  :o)


Hashimoto's Toxicosis is a rare form of auto-immune thyroid disease. The patient (That's me) presents with a high count of TPO anti-bodies (indicative of Hashimoto's), and also has Grave's anti-bodies. Lots of anti-bodies floating around. The thyroid anti-bodies attack the thyroid, causing cells to die and slough off. As they do so, they enter the bloodstream, often carrying hormones with them. The extra hormones cause the hormone levels to fluxuate unpredictably.

The thyroid also becomes infected and swells, causing unpredictable "dumps" of large amounts of hormones, causing the patient to "flip" to Hyper suddenly. Not a long, slow drop of TSH, but an overnight shift from hypo to hyper. The changes can be so fast that the TSH cannot keep up with what is actually going on in the blood.

Testing one's blood is luck of the draw. The numbers can change from day to day.

At other times the hormone levels will drift slowly up or down. Sometimes I will be hypo for weeks. Sometimes I will be Hyper for weeks. But the levels are constantly shifting. Drugs cannot control it.

Ok, that's the edit.
On with the story.
  

Four years ago I was diagnosed with a "slow thyroid" by the MD I was seeing. He put me on Levothyroxine and made me have bloodwork done every three months. I considered that a pain, because I was phobic of needles. I don't know what my levels were and didn't bother to read about any of it. I just considered it a nuisance, and assumed I would be fixed.

Six months later I wound up in the ER telling them I was having a heart attack. I was extremely Hyper, but I didn't know it and the Doc was concentrating on my heart, not my thyroid. It was doing wierd things, so they stabilized me and transported me to a bigger hospital where I spent the night being observed and had an Angiogram the next day.

I was sent home with a clean bill of heart health and a perscription for Lipitor because my cholesterol was a little high. Three days later I developed severe muscle pain and when I called my MD he had me discontinue the Lipitor immediately.

For the next year I kept going to my MD complaining of chest pain, fatigue, feelings of hypertension, depression, and a strange throbbing behind my ear. I kept getting my bloodwork done every three months and my perscription slowly krept up.

Looking back, my levels were going up and down, but whenever I had bloodwork done, I was always a little bit hypo.

One day in June I physically crashed again and ended up in the ER yelling "heart attack!" They determined I was not having a heart attack, I was dehydrated, and my heart was doing wierd things. The head of the ER, a friend, was the same person who had sent me for an angiogram the year before. She decided to run a slug of tests and get to the bottom of what was going on.

She ran three pages of tests, told me I had some sort of infection that she could not pin down, but my white blood count was high and my thyroid numbers were all screwed up. She told me I needed to see a different MD, and with my permission made an appointment for the next day, a Saturday. I saw the new MD, explained what the ER doc said, and after he looked at my chart he ordered more bloodwork and told me to come back Tuesday.

He wrote me a scrip for Alprazolam, and I said "I don't need this". He said "trust me, you need this". He was right.

I was sick and weak all weekend and when my appointment came Tuesday my wife had to help me into the clinic. I felt so bad that after we checked in, I had my wife tell someone that I needed to get into an exam room before I passed out.

They put me in an exam room and said the doctor would be along as soon as possible. I felt worse and worse, and ended up laying down on the exam table. Big mistake! I went into tachacardia almost immediately. My wife rushed out and grabbed the doc as he was getting ready to come in.

He came in, took one look at me, and had me wheelchaired to the ER, a short distance, where I was given intravenous drugs to stop the tachacardia. He told me I had Grave's disease, and sent me home with a scrip for Toprol XL and told me to ditch the Levothyroxine.

I saw him again a few days later and we talked about what was up. He said I had high anti-bodies for Hashimoto's and Graves, but that I was extremely Hyper, and he wanted me to see an Endo he went to school with.

I remember telling him I was impressed with how he treated me and I'd give him three months to get me fixed. LOL!!! He laughed and said he wasn't making any guarantees.

Thus began my education. I started reading while I sat at home unable to work, waiting for the Endo appointment. It was a month before I saw the Endo, so I learned about Hashimoto's and Grave's and anti-bodies, and what a dimwit I had been. MY MD didn't know what drugs to give me, so I was on nothing but Toprol XL, and Alprazolam.

When I saw the Endo, he read the letter of introduction my MD sent along with my medical history. I saw the letter, and it was very discriptive and thorough. He looked at the top sheet of my records, which was a bloodwork report showing I was clearly Hyperthyroid. He felt my neck, told me the only thing wrong with me was I had stopped my Levothyroxine, and I should go home and resume taking it.

I was stunned. I asked him if he was even going to do any tests, and he said no. I found out later he specialized in Diabetes, and obviously knew nothing about thyroid conditions.

I went back to my MD and his jaw dropped when I told him of my Endo visit. We both spent two months trying to get me into Mayo clinic. Him writing them, me calling them. He called Des Moines, but the Endo's there were booking two months out, so he kept focusing on Mayo Clinic.

All that time I was too sick to work and at one point developed muscle wasting and went from 145 pounds to 120 pounds in a week. Laying in bed too hyper to move, eating five meals a day and drinking Ensure in the middle of the night because I was starving. Constantly dehydrated.


During that three month period I learned to distinguish when I was hyper and when I was Hypo. It changed from week to week, and sometimes it seemed from day to day. I had horrible fits of depression, and begged my MD for anti-depressants. He told me he would if he could, but it would mess up my treatment. He said the Alprazolam was not going to help my depression at all, but it was the best he could do.

I saw a counsellor twice asking him to teach me coping skills to handle my depression, but all he wanted to discuss was my parents. I kept saying CLINICAL depression, he kept saying "your parents screwed you up". Two visits was enough of that.

Mayo Clinic finally sent us both letters saying they were taking no new Thyroid patients for the rest of the year, there was nothing they could do for me that hadn't been done anyway, and STOP CALLING. That really burned me, because as of then NOTHING had been done for me.

My GP was trying, but every time he drew blood, it showed different results, so he was hesitant to put me on any type of thyroid drug.

Right after I got the letter from Mayo, I bumped into an aquaintance, and told him of my health problems. He told me I needed to talk to his wife, because the story sounded very familiar.

I talked to her that evening. She was seeing an Endo in Iowa City that was treating her for Pheochromocytoma. She said he was doing a study on it, and might see me as he was seeking out such patients. She gave me his name and phone number, and I called that clinic the next day. I didn't really think I had that, but a lot of the symptoms meshed, so I figured what could I lose.

I was ready to lie.

When I called the clinic and asked to talk to his assistant, she gave me the "six weeks out" speach. I told her bluntly that if I could not see this Endo, I was going to drive to Des Moines the next day and find a hospital and lay in the Emergency Room until SOMEBODY started to treat me.

She got off the phone, came back in a few minutes, and told me the Endo had a "special" schedule for Pheochromocytoma patients, and could I be there the next day? I said I could be there by ten. she said make it 11:00, and they would have tests scheduled for me that day.

YES!!!

My MD faxed them my records and I met the Endo the next day. We visited and he ran a FULL Thyroid panel on me, and ran me through a CT scanner to look at my adrenal glands. I went back a week later and he told me I did not have Pheochromocytoma, but he found a tumor on my adrenal gland that looked to be dead.

He told me I had Hashimoto's Toxicosis, which was sort of Hashi's and Grave's rolled up in a ball, and he could treat me for that. He said he wanted to "save the organ", so he put me on Methimazole to suppress my thyroid, and Synthroid to replace the hormones.

That was in October, and he told me to come back at the end of December and he would scan my adrenals again to be sure the tumor hadn't grown, and check my blood.

I finally got back to work part time after Thanksgiving. I went back for the scan in December, and the tumor had not changed. My blood levels were looking better, so he told me to come back in nine months, and let my GP monitor me in the meantime.

My hormone levels continued to yoyo, partly because I was pushing myself at work, I suppose, and partly because the treatment was not working. I was sick off and on, working whole days by times, and an hour or not at all other days.

My GP tried manipulating the dosage of both drugs, and I kept slowly going backwards. Up and down, up and down, up and down. He couldn't keep me from flipping from hypo to hyper, and often my bloodwork would look good, but I was sick as a dog.

After reading about the suppression therapy extensively and researching Hashimoto's Toxicosis thoroughly, I went to my GP in late May, and told him this was stupid. He had also researched the subject and understood my condition fully. I told him the Methimazole was a patch, not a cure, and I was sick of the whole business. I told him my Thyroid was falling apart, drugs could not stop or control it, and I wanted surgery, NOW.

He told me I was actually not in very good physical condition for surgery, but he agreed that the treatment was ridiculous and trying to save my thyroid was futile. We discussed RAI and I told him I didn't want a diseased organ shrivelling up in my neck and dying. We discussed risks and benefits of both treatments, and I told him I wanted surgery.

He made me an appointment with an Endo in Des Moines that he felt confident in. The appointment was...two months out.

In late June I was too ill to work again.

July 3rd my wife drove me to Des Moines, about two weeks before my appointment. We had decided I was too sick to wait any longer, and we were just going to walk in and beg to be seen. I politely pitched a fit until I was able to see the office manager. We went to a private room and sat down and I explained my situation, my condition, my fear of Cancer, my desperation. I think breaking down and crying did the trick. LOL!!

Turned out the Endo had half the afternoon open and she saw me that day.

She had my records already. I told her I wanted surgery. She told me I wanted RAI. I told her I wanted surgery. She told me I was getting RAI. She told me to stop taking my Synthroid and she would do RAI in six weeks. She had bloodwork done and said have bloodwork done in a month and fax me the results.

What she didn't say was that I should stop taking my Methimazole. :(

A month later I had bloodwork results faxed to her and some guy called me after supper the day they got the results. I was back working again, feeling awfull, as always. The guy who called me turned out to be another Endo filling in for mine.

He was very agitated and told me to stop taking my Methimazole immediately! He said my TSH was 120+, and that was very bad! I said, well, I guess I'm ready for RAI right now, huh?

He said, uh, no, I don't think so...
He said if he were my doctor he would tell me to go take a Synthroid right NOW, and resume my daily Synthroid in the morning, but he couldn't tell me to do that. PLEASE stop the Methimazole and wait to hear from my Endo.

What he didn't say was I had to be off Methimazole for six weeks before RAI.

Two days later my Endo's nurse calls me and tells me to resume the Synthroid. I figured, well, I don't know what I figured. I just did it. I assumed my TSH would have to go down to 10 or so and then we would start over. I was ticked.

My Endo, on the other hand, decided she could control my disease with Synthroid. But she didn't tell me that. She had never treated a patient like me before (in twenty years) and she just figured I was ignorant or my GP was ignorant or something. All I know is I had about a dozen angry conversations with her nurse and the Endo finally called me october 1st and told me that she thought she could straighten me out with Synthroid, but it obviously was not working.

I told her that I was so ill, that as of that day, I was not working either, and my GP told me I could not work or my heart was going to quit. I told her I had been in the hospital again and something needed to be done SOON. I told her I had been to the ER several times while she was not treating me. She told me to stop taking my Synthroid and fax her bloodwork in a month.

I was ready to kill her.

After two weeks with no Synthroid I went back to my GP and told him I could NOT go six weeks. (I think I saw my GP every week in 2007, give or take a couple.) He said yes, you can go the full six weeks, but you cannot afford to go Hyper one more time.

He said it's time for surgery whether your body is up to it or not. I will find you a surgeon. So I started taking my Synthroid again, figuring to heck with the Endo, it's not like she knows who I am anyway. She's fired.

But then my GP couldn't find a surgeon. Oh, he found three, but not one that would touch me without an Endo.

So...about the time my Endo was expecting me to call and say "let's do RAI", I had to call her and tell her I was back on Synthroid and demanded to see a surgeon.

She was ticked. I didn't care. She made an appointment with a surgeon. A very qualified surgeon she had known for years. She put a little note in my records, I think.

I went to see him. He was nice the first two minutes, and then proceeded to cut me off every time I opened my mouth. He told me my condition did not exist. He told me I did not need surgery. He told me there was nothing wrong with my heart. He told me my disease could be controlled with medication, but since I was obviously non-compliant, I should go back to my Endo, (and he used her first name),and have RAI. He told me if that didn't work I could always come back in a year and he would operate on me.  

I walked out of his office stunned and before the elevator doors were closed I was sobbing. He had brow beat me until I repeated after him that I would ignore my GP and do exactly what my Endo said. He had to say it three times before I spit it out. Then he verbally patted me on the head and kicked me out.

The most pompous *** I have ever met in my life.

So I went back to my Endo and meekly submitted to RAI. It was hell going without Synthroid. I finally had RAI January 18th. My Endo said it will be a year before my meds get me stabilized.

Surgery would have been much faster and easier on my body. But what's a year when it's not your body?

My GP says it will be a year or two before I go back to work. If I go back to work. He had me file for SS Disability in October.

Like I can live on $965.00 a month.

He told me it would be at least a year to get it, and thyroid patients almost never get it. But it was better than a sharp stick. If I get it.

I went to the ER six times this year and spent an overnight in the hospital. My heart is not pumping right because it cannot squeeze hard enough, and it cannot relax enough, to pump efficiently.


Here I sit, a week after RAI, waiting for my TSH to drop from 47.35, taking the same maintenance dosage I was on the entire last year. Wonder how long that will take.

Waiting for my thyroid to die and hormone dumps to happen. Waiting to get over insomnia.

The only bright spot I see at the moment is now my Endo and her staff are calling me the "unusual" patient, and I have orders for weekly blood draws untill I see her again in six weeks.

And I am still "slightly mad".

Update;
My TSH dropped over 40 points in a week, so I am feeling better about that.
My sleep patterns have returned to normal, so I feel better period.
I am finally trying to accept the changes that are coming, so maybe I will feel less "mad", in more ways than one.

Things are getting better. :)

Update;
It's June, in about a week it will be the two year anniversary of my introduction to my current GP, and the chaos that followed. Don't get me wrong. He's a smart, compassionate man.

My TSH slowly sank to 0.19, so my Endo dropped my Synthroid from 100mcg to 75mcg. Six weeks later it's over 4, so she will up it to 88mcg I hope, which is where it should have been dropped to. I'm slightly hypo, like I knew I would be, but how do you argue dosage changes through the assistant/nurse?

I have about a two hour window in the mornings when I can get out and run errands and visit people. Nap in the afternoon. Sometimes don't leave the house. Sometimes get rambunctious and overdo it and get sick. Sometimes have a good day.

Heart bothers me in the morning especially. Money is gone. Stress is enormous.
Recuperation is slow. Doctor provided letter saying I wouldn't work for another year. SSD finally denied me so I am appealing. Things are not getting better.