Graves Disease?

[pandatx]

I liked that suggestion too

[Pachyderm's Nose]

I see you've gotten a lot of support since I commented yesterday, all good! I just wanted to expand a bit on what I told you. My mother in law had the radiation therapy at least 10 years ago and has had absolutely no problems. The only change in her daily routine being a daily dose of levothroxin (synthroid). My wife has been treated for hypothyroid for even longer and the synthroid takes care of that too.

[pandatx]

thank you for that. My doctor is sort of pushing the radiation but then I get online and read stuff that terrifies me. Sometime I wish I didn't have internet access.

[khauser]

thank you for that. My doctor is sort of pushing the radiation but then I get online and read stuff that terrifies me. Sometime I wish I didn't have internet access.

I'm sure you know to take everything you read online with a grain of salt, so to speak ...

What have you found that is alarming?

[RandyJ]

A friend of mine has Graves and it is controlled with medication. Each case is different, but radiation is not always required.

[pandatx]

We're waiting to hear if I have an antibody that would make it more likely to be controlled by medication but the medication also has a rare but really dangerous side effect of making your white blood count go to zero (my doctor's warning). Reasons the radioactive treatment scares me? Are you ready for this? You're right about taking stuff with a grain of salt...I know that. Its just a lot to take in and a big decision. My guess is I'll choose the medication at first (if I can) and buy time to figure the rest out.

Top Reasons Not To Have RAI

1. It's permanent; once you swallow this there is no changing your mind and starting over.

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 (induce or cause) thyroid storm as the dying gland "dumps" (releases) excess thyroid hormone and thyroid antibodies into the body; RAI also stimulates immune cells within the thyroid gland to produce more thyroid antibodies. (2)

4. Graves disease is an auto-immune disease, not a disease of the thyroid, so killing the thyroid doesn't stop the disease process; without adequate thyroid tissue, the antibodies that cause hyperthyroidism may go on to affect orbital or dermal tissue, causing Graves' ophthalmopathy and pretibial myxedema.


5. Results in hypothyroidism.
Whoever said hypothyroidism is easy to treat, was mistaken. Because of the effects of thyroid antibodies, radiation-induced hypothyroidism is more difficult to treat than naturally occurring hypothyroidism. Hypothyroidism caused by treatment for hyperthyroidism is known to cause depression and anxiety. In one large Dutch study, "over one third of patients with a full-time job were unable to resume the same work after treatment. It appears that many of these patients are in need of psychological support (3)

6. Being hypothyroid is neither less debilitating nor less dangerous than hyperthyroid. With hypothyroidism one is at risk of myxedema coma which can be more deadly than thyroid storm. This results from improper monitoring and labs tests, keeping us in a hypO state. After radiation-induced hypothyroidism develops, it takes only 6 weeks without thyroid replacement hormone for patients to fall into myxedema coma.

7. Increased antibody titers after RAI skew lab test results, adding to treatment difficulties. In particular, the widely-used TSH test is influenced by TSH receptor antibodies, causing falsely decreased levels.

8. RAI, aka spent nuclear fuel ("nuclear waste", in other words) is absorbed by other organs and can cause cell death or DNA mutations. RAI is absorbed, in smaller amounts, by other organs besides the thyroid, including breast tissue, the genitals, pancreas, and the gastric mucosa.

9. For up to 4-8 weeks after dosage, we're exposing those around us to radioiodine. This is demonstrated by patients registering measurable radioidine in airport and other screening devices.

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. (5)

12. RAI can cause difficulty with future attempts to become pregnant and carry pregnancies to term. RAI is known to affect the ovaries, which is why patients are recommended to avoid becoming pregnany for at least 6 months after RAI. The 6 months recommendation was increased to at least one year in early 2002

13. Chance of thyroid eye disease developing increases dramatically, as RAI doesn't stop antibody production (6)

14. Chance of significant, unhealthy weight gain is increased Studies show that weight gain is inevitable after radioiodine-induced hypothyroidism (7)

15. Replacement hormone products currently on the market, both synthetic and glandular, 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 which usually does not happen unless a patient is educated and proactive in their disease and treatment. Within one year after RAI, most patients are on a dose of replacement hormone equivalent to 0.1mg levothyroxine; 5-6 years post RAI, most patients are on 0.175 mg levothyroxine because of the progression to autoimmune thyroid failure.

17. Increased risk of developing fibromyalgia like symptoms

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. (8)

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. Current research is directed at modulating the cytokines, immune system chemicals released during the immune response and necessary for autoantibody production. Treatments of this nature are already being used successfully in Crohn's disease.

20. I131 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.

21. When cats are given I-131, they must be kept in a contained facility for up to 6 weeks until they no longer set off warnings on a geiger counter, yet people, especially in the U.S.A. are released with in minutes of treatment on an unsuspecting population. Germany keeps I-131 patients for several days in a contained radiation facility until their radioactive numbers are in a *safe* level. Is there REALLY anything *safe* about ingesting I-131? (9)

22. Salivary and tear duct damage from I-131 (10)

Granny Chris posted this in another thread a while back, I'm repeating it here. I know that we are told that they try to calculate the dose of RAI based on the weight of the thyroid gland itself and volume measurements that they get from the uptake and scan....but more and more medical journal articles that I'm reading are leaning towards giving up even attempting to calculate a dose and choose instead to go for a full ablative dose of 10,000 rads (per thyroidmanager.org site). A chest x-ray, per Rugratsmom, who is an x-ray technician is less than 1 rad .

-- 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

[PreemieNrsTiffy]

Amy,

I have been quite busy the last couple of days and just got caught up on all these developments. I don't have much experience with patients suffering from Grave's Disease but the first time I heard of it was when Barbara Bush was diagnosed with it while her husband was in office. I agree with so many of the other posters that you need to find resolution of this thyroid condition before you worry too much about the CPAP.

I had some funky thyroid numbers a few years ago and had a whole endocrine and cardiac workup because I also suffered from tachycardia. All my heart tests were essentially negative finding except for the elevated heart rate that rose quickly with any exercise. I was really hinging my hopes on the thyroid work-up because it would have explained my hot flashes (at age 30), elevated heart rate and insomnia. They concluded my thyroid was fine and long-term birth control pills caused an innocuous elevation of my T3 level.

My current working theory is that maybe OSA has been the cause of my elevated heart rate and that with continued therapy I may be able to come off the beta-blocker.

What I'm saying is that I am betting the hyperactive thyroid is undoubtedly causing you insomnia and making you overly sensitive to the physical sensations related to the CPAP equipment.

I will be thinking of you as you contemplate this serious medical decision.

Tiffy

[pandatx]

Thank you Tiffy! So much. When they did the scan the results were extremely definitive. They said that a 15-25% uptake would indicate Graves Disease. Mine was 74.4%. My thryoid looks like a white bone. Its the entire thing too. Not undefined edges, or vague. Very solid and clear. Now we just have to find what treatment will be best for me. Then I can look forward to feeling better. I know it will take some time but at least I know I'll get there. My doctor said to expect about 6 months no matter which treatment we do. It takes a while for things to swing around and normalize.

[sawinglogz]

I'm sorry to hear you're battling this along with your new machine!

This is obviously not medical advice, so take with the appropriately large grain of salt.

Given that Graves is an auto-immune disorder, I'd be very wary of embarking on any kind of irreversible treatment while my body was still recovering from a sleep disorder:

When you're not sleeping, all kinds of awful things are going on in your system, and for all I know, your immune system could be going bananas purely because of the apnea. If that's the case, once your body begins to respond to the apnea therapy and you're starting to get actual sleep again, your immune system might (conceivably) return to normal.

As to your doctor pushing you to make a decision in 5-7 days, that's just absurd. It's your health, and your decision. And, of course, you're probably going to have more trouble thinking clearly and making a good decision right now. So make your own decision.

At one point we thought my fatigue might be Graves (but my thyroid tests were normal). When we were looking into that, though, we came across low-dose naltrexone (search for "Graves") as an unconventional therapy for Graves. I don't have any firsthand knowledge of its effectiveness, nor sufficient expertise to assess his claims, but I thought you might want to be aware of another possibility. Given your doctor's pushiness, I'd be very surprised if he'd even entertain the idea, though.

Again, make your own decision. Get a second opinion if need be.

[avi123]

IMO, the above posts have too much text-books material.

Lots of persons, including myself, have or had Graves Disease=Hyper Thyroid= thyrotoxicosis.

It's easy to treat and cure, as long as it's not a cancer that has metastasized.

[pandatx]

Thank you so much. Yes, to everything you said. I am, right now, just feeling out of my mind. The doctor told me not to make any big decisions at this time (b/c of how it affects your mind) and then wants me to make a big decision in 5-7 days. I have a second opinion on April 30th. I just can't sort everything out right now. I'm overwhelmed and that is not good for me at all. This is my scan. Normal uptake after 24 hours is 8%-25%. My uptake was 74.4%. Here's my pretty picture:

[sawinglogz]

Lots of persons, including myself, have or had Graves Disease=Hyper Thyroid= thyrotoxicosis.

Graves Disease isn't universally equivalent to hyperthyroidism.

[pandatx]

Avi, would you be willing to speak with me or even message privately? The stuff I'm reading online is scaring me and it would really help to be able to communicate with someone who has been through it. particularly with Graves Disease. As you can see by what I posted, that is the stuff I'm finding and I don't have anyone with experience to ask.

Sawing..that is true. There were 3 possible reasons why I was showing hyperthryoid. One was Graves, one was nodules, and one was thyroiditis. The symptom of the hyperthyroid was the same but the causes are very different and differ in "seriousness". Thryoiditis was what I was hoping the cause would be.

[khauser]

Top Reasons Not To Have RAI

Hi Amy,
If it were me, I would be scared too. For a while ... then I would do what I just did ... I googled "Top Reasons Not to Have RAI" (including the quotes). I found all the scare stuff you did, but I also founds many responses. One comes from http://www.medhelp.org/posts/Thyroid-Ca ... how/263205 and reads in part:

There is not an easy answer to this question. RAI is a very effective treatment for Graves. The "horror stories" are out there, but these are rare - the weight is b/c the hyperthyroidism (ie, burning higher # calories a day) is corrected. Eye disease should be looked into before RAI - if there is Graves Eye disease, then this needs to be treated with prednisone, etc prior to RAI to prevent eye disease getting worse after RAI. Cancer is NOT associated with low dose RAI that we use in Graves disease/hyperthyroidism. Dying younger has NOT been associated with RAI for hyperthyroidism.

RAI cures Graves hyperthyroidism 85% of the time and does not have the side effects of tapazole/PTU (ie, liver damage, bone marrow toxicity, rah and joint pain) -- BUT it will cause most patients to be permanently HYPOthyroid which requires lifelong treatment with a med such as synthroid -- much safer in the long run than taking tapazole/PTU longterm.

If patients are reluctant to treat definitively with RAI, then a 12-18month trial of tapazole is recommended (if tolerated....)

That comes from a doctor.

This is one of those things that no one can choose for you ... you need to educate yourself and make the decision based on rational facts.

I suspect a great deal of the negativity with RAI comes from weight gain. I'm overweight, and low thyroid has been suspected but tests never bore that out (dang it!). So if you are used to being able to eat anything and everything, that's going to change ... but it doesn't mean you have to starve.

One thing I did read that is interesting: RAI is not, repeat NOT, a cure for Graves. You will continue to have Graves, and could suffer other consequences (one being something to do with eye health). RAI only cures hyperthyroidism, which in this case is brought on by the GD.

[pandatx]

You're so sweet to be so concerned and I appreciate it more than you know. I do know that Graves is an autoimmune disease not a thyroid disease. The thyroid is sort of the innocent bystander. That can be confusing. My issue with RAI is not the weight gain. Its just the fact of the radioactivity. I have been researching and my husband and I will talk this weekend. If I'm not ready to make a permanent decision (which I'm not) I will probably start the medication at least short term to find out if I can even take it . I at least want to see an opthamologist and also make sure I've been tested for the eye disease antibodies before I'd agree to the radiation at all. I actually lean more towards having it surgically removed but the first doctor didn't discuss that with me. I'm waiting to hear back from her since I now have more questions than the other day when it all just took my husband and I by surprise. I know I'll feel better once a decision is made and I start feeling better. I'm trying to keep my head in the right place but its hard b/c this is affecting my thinking. I tried to do yoga yesterday and I just couldn't do it. This breaks my heart. I just feel too weak right now and I know that I should definitely NOT push myself (which I normally would do).