Apr 26 2008
My Thyroid and I Finally Meet My Endocrinologist
I finally went to see my new and very expensive Endocrinologist. For the past 13 months, I’ve been treated for my hyperthyroid condition by the local health clinic. I live in the country and this was my best option when roads were bad. It was also cheaper (by a LOT!) since we pay cash. But despite my begging them to test for antibodies (Thyroid Stimulating Immunoglobulin) they would not. My left eye pushed outward and stared at me whenever I looked in the mirror. I could not stay at the computer very long (still can’t on some days) because of the double vision and burning sensation…
So they referred me to the only endocrinologist for my area.
Now here’s a bit of information - There are a different types of hyperthyroidism. One is caused by the body producing antibodies which then attack receptor cells on the thyroid, back of the eye socket or maybe the front of the legs. Those areas contain the type of receptor cells that respond to these antibodies. This type of hyperthyroidism is named “Graves Disease” after the Irish doctor who discovered it.
When the eyes are involved - pushing outward and getting painful - it’s because these receptor sites have been affected by the antibodies and are producing fibroblast cells that build up inside the eye socket and push the eyeball forward when the space gets cramped. This can happen even independently of hyperthyroidism - and in that case, it’s called “Graves Ophthalmopathy”. It’s more prevalent in smokers or former smokers.
The treatment recognized worldwide for this is to take anti-thyroid drugs and keep the levels of thyroid hormone at an even, consistent level. By doing this, the body can calm down and perhaps even stop producing antibodies. The disease is one of the immune system. The body manufactures antibodies when it shouldn’t. The thyroid is often perfectly healthy - it’s not a disease of the thyroid or of the eyes. And the eyes are healthy - it’s not a disease of them either. It’s simply another autoimmune disease caused by assaulting our poor bodies by chemicals and pesticides and other nasty things. There are also studies suggesting that URI’s are often experienced before the onset of Graves (upper respiratory infection).
Here are the 3 treatment options for Hyperthyroidism
1. Take anti-thyroid pills and hope for remission in 1- 1/2 years or more. Stop taking pills when remission is achieved.
2. Have the thyroid removed and take thyroid hormone replacement pills for the rest of your life. Since this does nothing for antibody production, you will need to still treat the eyes. Graves Ophthalmapathy can exist before, concurrently or after hyperthyroidism. If the parathyroid glands (which sit on the back of the thyroid lobes) are damaged or removed, you will no longer be able to regulate calcium in your body and will have to supplement that too.
3. Swallow radioactive iodine waste, called “RAI Ablation” which uses I131 which is drawn into your thyroid and burns it out and kills it. This is not an option if you have the Graves form of hyperthyroidism since it causes an increased immune response by the body and will make your eyes bulge even worse when the antibody production is stepped up. No one in Europe seems to use this method. It’s nasty and sometimes has to be repeated multiple times. Within 6 hours of treatment, People are then set lose on the public, still carrying radioactive material in their bodies - they’ll set off alarms at airports even! It takes up to 6 weeks to clear from your body. You flush it into the septic system every time you use the toilet. And recent studies are showing that close family members are at a greater risk for cancer caused by exposure to it. Frightening, isn’t it? Oh, and you take thyroid hormone replacement pills for the rest of your life.
So my Endocrinologist walks in and announces that I have Graves Diseases and makes a separate diagnosis of Graves Ophthalmapathy. Yep, this girl is producing antibodies.
The Endo then announces that she wants to schedule an RAI uptake scan (using the more benign!!? form of nuclear waste known as I123) so she can calculate how much of the I131 to use during the using RAI Ablation treatment.
What The Mother-loving HECK!???## I’m paying this Endo $350 today and she is telling me, within minutes of meeting me, that she wants to use the treatment protocol that is shunned by the rest of the world? The treatment protocol that is contra-indicated in those who are producing antibodies? Incredulous, I manage to stutter that I don’t wish to use Nuclear Medicine for treatment, that I would like to continue with option #1 - taking the anti-thyroid pills and beta-blocker heart pills like I have been doing and hope for remission.
She accuses me of reading too much and warns me not to believe the “propaganda” out there. She states that for people like me, “remission could take 5 years or more.” Propaganda? The excellent books I have read all caution against hasty, irreversible, damaging treatment methods. “Do No Harm” they all seem to say. It is an autoimmune condition and with time and the proper monitoring of anti-thyroid drugs, you could achieve remission. Even without remission, you keep your body intact so that if science finds a better treatment method or even a cure, then you can use it. Remove a healthy gland or fry it with radioactive waste and you never get those options. So the most important thing is this - Keep your body parts intact. Don’t remove body parts that are healthy or that can be treated with gentler, non-destructive methods. This is propaganda?
Portion of the Original Hippocratic Oath…
“I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.”Modern Version Taken By Many Physicians Upon Graduation
“I will prevent disease whenever I can, for prevention is preferable to cure.”
The Cliche We Most Seem to Use,When Referring to the Hippocratic Oath, Which is Made-Up But Conveys the Message Best”
“First, do no harm”
Again, I say no to the RAI because it will cause my eye bulging and pain to worsen. “RAI Ablation is not done on antibody-producting patients, is it?”, I ask.
She smiles a brittle smile and says - “Oh we can “Protect” your eyes now, by using high does of steroids. The steroids will prevent the increase in antibody production from harming them”
GADS! High doses of steroids!!!! “Won’t that damage my liver?” I question, sounding all the more frightened!
The endo’s eyes are wide and intense and her body practically vibrates. She is showing all the signs of being really, really angry with me. She speaks quickly and tells me that we will “get back to this” later, because for now, our priority is to get me into an eye specialist, so that treatment can begin immediately on that.
I take the lab forms she hands to me - you have to have this done on a monthly basis until your thyroid tests show you’re at your “set point” - that smaller area within the “normal range” where you feel optimized. I am very new to this all - it’s only been a year. And I don’t really know where my optimal set-point is, though I suspect at the lower areas of normal for Free T4 and maybe Free T3. As of my last lab work, my TSH was listed as “<0.005″ (range of 0.27-4.20), lower than when I was first diagnosed. My Last Free T4 was 2.12 (with a normal range of 0.93-1.70), Thyroglobulin AB at 93 (range 0.5-55.0).
I look at the lab requisition slips she hands me. I am grateful that she has requested TSI testing. These are the antibodies I really want to know about. Blocking, stimulating or binding. These are the “Graves” antibodies. It was the test that the former clinic always said “no” to. It prevented a true diagnosis for all these long months, despite my pleading with them. Okay, so maybe I did have to spend $350 for this visit just to get this piece of paper - but it will be worth it to see these results.
And after I get these lab results for my files, I will take my paperwork and high-tail it outta this Endocrinologist’s office, never to return. Time to look further down-state for treatment.
5 days since my Endo appointment. They told me they were making a referral appointment to an eye specialist - they wanted to get me the appointment date the day I was in the office, but kept getting a busy signal. My Endo receptionist said she would keep trying and would call me the very next day with my appointment.
I gave her my cell phone number as the primary contact line. So far, I haven’t heard a peep out of anyone.
I have had my blood drawn and the Endo’s office should be receiving those lab reports soon. Maybe then they will let me know what I am supposed to do, since the Doctor herself had me stop taking all meds except for the beta-blocker until she saw labs.
My better half is rolling his eyes a lot as I tell him about what’s going on.
All Graves’ disease patietns have positive TSI antibodies. That is why they have Graves’ disease.
Radioactive iodine is not contraindicated just because of “positive antibodies”. It depends on how much orbitopathy you have.
But you shoukd go down south to see another quacko like you.
If you do not like it, then go to medical school 4 years and after that 6 more years (total 11 years) and treat yourself. (yea, like you well get to medical school, my asss)
Hey John, hope you’re not a physician - I would hate to have to get treatment from you! LOL.
I have active bilateral exophthalmos - and until you personally walk around with an eye bulging out and feel the pain physically and emotionally, I don’t think you can comprehend a patient’s fears about possibly making it worse. And RAI ablation can make it worse.
But why should a doctor continue treatment that is working? How about because I respond well to ATD therapy and my liver is healthy? And while taking methimazole, my eye feels less pressure and pain? Those seem like good reasons to continue with the current treatment and monitor for changes.
And here’s the most important reason why RAI ablation is contra-indicated in someone - “if the patient expresses fear/concern over exposure.”
Yes, free will. The final decision, “Dr.” Tuma, always should be with the patient. But in your world, patients who take an active role in their treatments are labeled as “quacko” and then it’s insinuated that they would not be smart enough to enter medical school.
And never mind that if you had been privy to my medical history, as my new Endocrinologist was, you would have read the part that says my father died of multiple myeloma and that he worked at a nuclear facility here in the 60’s. I have issues with nuclear ANYTHING, and I expressed that concern. Read my blog post about Galloo Island Wind farm.
I’ve sat through countless x-rays during my life, swallowed barium shakes and just come to the conclusion that I’ve had enough of it. Exposure, in case you forgot, is cumulative. Genetic mutation takes years and can’t easily be traced back to a single incident. Studies are showing that within 10 years of treatment, family members are developing hypothyroidism as a result of exposure to the thyroid patient treated with I-131.
I lost my family doctor last year, when she moved back to her home state. She was the best doctor I ever had. She empowered her patients. She cared about the ways that treatments and drugs would adversely affect us - and would not prescribe many of the new, hot drugs because so many of them were like “taking a chainsaw to your liver.” She taught us to proceed conservatively and holistically. She started me on ATD therapy the month before she left and I believe she would have kept me on it and monitored liver health and watched for signs of remission if she still practiced in this area. I miss her. She was a loving and humble woman. She always respected her patients enough to work with them, as a team.
You could learn a lot from a person like that, “Dr” Tuma. And you should also remember that this is exactly why patients have a right to a second opinion. Which I will get, by the way.
Chart Your Cumulative Exposure, Anyone?
– I-131 thyroid ablation: Thyroid 10,000 rad
– I-123 thyroid scan and uptake: Total body: 0.0065 to 0.013 rad Thyroid: 2.6 to 5.1 rad
– CT of head & body: 1.1 rad
– Upper GI: 0.245 rad
– Lower GI: 0.405 rad
– Chest x-ray: 0.005 to 0.020 rad
– Lumbar spine x-ray: 0.130 rad
– Dental x-ray: 0.010 rad
– Round-trip airplane flight from NY to CA & back: 0.005 rad (I’ve read higher figures for this; I’m giving you the lowest)
– Naturally occurring background (ground, air, other people, etc): 0.015 to 0.140 rad/year
– Cosmic radiation (outer space, stars, sun, etc): 0.026 to 0.050/year
– Natural gas in home: 0.009 rad/year
– Building materials: 0.003 rad/year
– Drinking water: 0.005 rad/year
– Radionuclides in your body (absorbed from food, water & air): 0.039 rad/year
Top 20 Reasons Why I’ll Never Have RAI
1. It’s permanent; if you don’t like the results, too bad
2. Since the science is inexact and dosage a guess at best, it may take years to be fully effective, or it may have to be repeated (1)
3. Can bring on thyroid storm as the dying gland "dumps" a lot of hormone (2)
4. Graves disease is an auto-immune disease, not a disease of the thyroid, so killing the thyroid doesn’t stop the disease
5. Results in hypothyroidism (3). Who ever said hypothyroidism is easy to treat, lied
6. Being hypothyroid is neither less debilitating nor less dangerous than hyperthyroid
7. Increased antibody titers after RAI skew lab test results, adding to treatment difficulties
8. RAI, AKA spent nuclear fuel ("nuclear waste", in other words) is absorbed by other organs and can cause cell death or DNA mutations
9. For up to 4 weeks after dosage, we’re exposing those around us to radioiodine
10. Studies show an increase in cancers, especially of the thyroid gland and small bowel, after RAI. (4)
11. Possibility of damaging the parathyroid, causing hypoparathyroidism.
12. RAI can cause difficulty with future attempts to become pregnant and carry pregnancies to term
13. Chance of thyroid eye disease developing increases dramatically, as RAI doesn’t stop antibody production (5)
14. Chance of significant, unhealthy weight gain is increased
15. Replacement hormone products currently on the market, both synthetic and pig, are not comparable to our own hormone, and in some people, never feel "right."
16. Ongoing problems as the gland gradually dies, necessitating close medical surveillance and replacement hormone dosage adjustments
17. Increased risk of developing fibromyalgia
18. For most GD patients, medication with ATD’s creates a euthyroid state similar to "normal life", and can lead to long-term remission as well
19. As modern science explores the human genome, a cure for GD could be found, but after RAI kills the thyroid, it wouldn’t work
20. I-131 is so dangerous it’s transported in a lead container and kept at the hospital only for the briefest time before being dispensed by a doctor shielded in lead from head to toe.
References:
-Radioiodine Therapy of Graves Disease; Milton D. Gross, John E. Freitas, James C. Sisson and B. Shapiro, Chapter 11, Page 160
-Werner and Ingbar’s The Thyroid A Fundamental and Clinical Text, Eighth Edition, page 703:
-Also: Graves Disease, Pathogenesis and Treatment, edited by Basil Rappoport and Sandra M. McLachlan, published by Kluwer Academic Publishers. ISBN 0-7923-7790-7. Chapter 11, RAI Therapy of GD, Complications and Risks of RAI, pg. 164,
-Werner and Ingbar’s The Thyroid A Fundamental and Clinical Text, Eighth Edition, page 703:
-"One report from the Co-operative Thyrotoxicosis follow up study, with a mean length of 21 years, did find an excess risk of death from thyroid carcinoma in patients receiving RAI for hyperthyroidism due to toxic multinodular goiter (262 Ron E, Doody MM, Becker DV, et al. Cancer mortality following treatment for adult hyperthyroidism. JAMA 1998: 280; 347), Page 704, Exposure of the rest of the body to RAI 131-I:
-Werner and Ingbar’s The Thyroid A Fundamental and Clinical Text, Eighth Edition. Page 704 -705.
-And: Therapy of Graves Ophthalmopathy By Leonard Wartofsky, Matthew D.Ringel, and Kenneth D. Burman, Chapter 19, page 272:
(Gathered by ‘Graves_support Group‘, in a collective effort).
I personally had RAI in 2001, and I applaud your uneasiness with the option and your strong will to find another way. If you haven’t yet, you might find reading Dr Elaine Moore to be interesting.
I had one question that I asked all my doctors: “Since Graves’ is a problem of an auto-immune attack, when you remove the thing you can best tell it’s attacking (thyroid), what happens to the rest of the body?” In other words, why on earth is this called a “cure?”
They all said something like “Well, the thyroid is gone, so the problem is gone.”
And I would say “But then I’ll have a new disease, hypothyroidism, right?”
And they’d say, “But it’s so easy to treat.”
From their perspective, that may be true, but I think you are on the right track to wish to do something else, something less permanent. Good luck to you.
Thank you, Kirsten, for your comments. They just amaze me, the things that the doctors said to you.
How do you feel now? It’s been 7 years for you! Have you been stabilized and feeling well? Are you on T4, or T4/T3 or natural Armour type?
Ironically, it is my Graves’s that is actually helping me take things slowly, as far as treatment. I felt too sick to work full time outside the house, and because of the eye pain, could not drive far - I live 30+ miles from town. So I work from home and as a result, we just don’t make enough with this and my husband’s paycheck, to buy health insurance. Because I have to pay cash for my doctor visits, I often just can’t let them do what they want to do.
Continued wellness to you, Kirsten.