[jengirlm]

#1017990

Hi folks,
It was less than a month ago that I was saying how the one thing that I ever won with was in having my Grave’s disease go into remission using methimazole…
I had my annual physical on 4-15-11 and told my Dr. (actually a Nurse Practitioner) that I thought that my thyroid had gone hypo on me since it had apparently run hyperactive without me knowing it for years. I have been totally exhausted and have gained about 30 lbs over the last 3 years. I thought that I knew what I was talking about, but was I ever wrong! It turns out that after 6 years of being in remission my thyroid is under attack from my immune system again. (She only tested TSH =0.01 & Free T4= 2.37) I can’t tell you how disqusted I am to be having to deal with this again. The first time I had to totally put my foot down to have the Drs be willing to try me on the methimazole and beta blockers, this time I want a better answer. Before anyone jumps in… I Want A Better Answer! I am not interested in kiling off my thyroid and pretending that it is the cause of all of my problems. I want to deal with the autoimmune disease! I have found some information on Low Dose Naltrexone Therapy, but I am still looking. Does anyone know of any other treatments? I have not even seen the endocrinologist yet, but I strongly suspect that they are going to push the RAI treatment again. I want to gather as much info as I can before I go in. I do know that somehow I need to reduce my stress level, but life is crazy right now! I am working full time and going to school online. I just bought a house that has 40 acres we are turning into a ranch (notice I didn’t say that I "bought the ranch"?) I have a 14 year old daughter with her first boyfriend. My mom is moving in with her 15-20 (I don’t even know exactly how many she has!) horses (some of the horses coming next week). And my boyfriend’s 27 year old son just moved into the guest quarters since he was homeless!
Yeah. Life is stressful. Shrug.
Thanks for any information you might have!
Jenni

[Bobbi]

#1062065

If you had acute appendicitis, would you say that removing the appendix was "pretending" that the appendix was the problem when in reality the problem was the bacteria growing inside the appendix? There is no pretense about the fact that it is extreme thyroid activity causing hyperthyroidism. Yes, the underlying cause is an antibody . But, by definition, your thyroid is diseased just like that appendix would be diseased in the example. Unfortunately, just as in acute appendicitis there is no way to kill off the bacteria quickly enough and the organ needs to be removed, there is currently no way to selectively treat the antibodies causing hyperthyroidism. Any antibody treatment you might currently be able to choose will suppress your entire immune system, making you vulnerable to all manner of viral and bacterial illness. You would, in effect, be trading one disease state (hyperthyroidism) for another (immune suppression) that might be more difficult to handle.

Remission is, by definition, a temporary cessation of symptoms . In our case, our doctors consider it a true remission if we maintain normal levels of thyroid hormone, without medication, for at least a year. Approximately 20-30% of Graves patients achieve remission once. Approximately 10% of those individuals achieve remission twice. So, translated, that means that out of 100 Graves patients, 20 or 30 will achieve a remissio on the meds. Out of those 20 or 30, when they relapse (and the odds are that they WILL relapse) only 2 or 3 will experience another remission.

[jengirlm]

#1062066

Bobbie,
Thanks for your response, even if it still seems to be the same old message. The underlying problem is what I want to treat, and controlling the thyroid in the mean time is my goal. I do not feel that it is Ever the answer to shoot first and ask questions later. If I am a bit frustrated it is bound to be at least partly due to the effects of a thyroid out of control, but condescending replies honestly do not help. As facilitator you represent the site. Either your personal opinions came across in your reply, or that is the voice of this site. I wrote for information, not to have it implied that I should toe the line.
I really don’t know if you will "approve" this response, but I hope that you will read it and consider it in your future interactions with people. I am sure that on a better day you come across as open and caring.
Thanks,
Jenni

[snelsen]

#1062067

Jenni,
As you probably know, Naltrexone blocks opiod receptors, so it is used for opioid addiction. Opioids are narcotics, such as morphine, heroin, fentanyl, oycodone, hydrocodone and codeine, to name a few. So it acts on receptors in the brain.
The general cost is approximately $250-500/month. It sounds like you are very interested in trying this drug. I have read anecdotal statements, and watched the utube videos that say it cures MS, autism, pancreatic cancer, heart conditions, to mention a few. It is a complex drug. I am sure you can find someone to write a script for it. Probably docs who treat Graves’ disease, or docs who are familiar with it, will not write an RX. I suggest you be sure of the side effects and interractions with other drugs.
It is clear that you do not want to manage your Graves’ with the methods that have quite a bit of good evidence based documentation supporting these methods. Since it is an opiod antagonist, I don’t think it will affect your immune system at all. But check this out with the doctor who will be prescribing Naltrexone, and watching you carefully when you are taking the drug.

Re Bobbi’s post, I think it was very accurate and helpful. She wrote information that you have already dismissed for yourself, so it seemed that she was attacking you. She wasn’t. You can use this information going forward with your treatment plan.
I don’t know any other treatments except the ones that are discussed on this website, namely RAI, surgery and ATD’s. I truly do not think her response was demeaning or condescending in any way. She provided information for you to add to your collection of thoughts while you decide what to do with yourself. Do watch your heart rate if you are hyper. Serious stuff can happen if it is really rapid. As you know, when you are hyper, everything is in overdrive. So be aware of a rate over 120 for a sustained period of time. ARe you taking a beta blocker for for your heart at this time? It is a stand-alone complication of hyperthyroidism. I can speak to this from my own experience, for I had a thyroid storm (on ADTs and beta blockers, but not enuf.) It is a life threatening emergency. Just wanted to share my own experience.

I wish you the best. There really isn’t much more anyone can say except support you in your decisions, keep an open mind, and I sure as heck the stress can decrease a little bit for you. I am so sorry that you have all this on your plate.

Regarding the rest of your life, you have an incredible amount of reality-based stress. It sounds overwhelming for anyone, whether they are hyper or not.
Shirley

[James]

#1062068

Hi Jenni,
I’m coming from a similar perspective as you; so I was compelled to respond to your post, although I haven’t been as active on this board as of late. I’m going to be as positive as possible while at the same time realistic.
Firstly, if ATD’s have worked for you in the past, then there is no reason why you cannot try that method again, unless there is some medically compelling reason that you cannot. I personally look at my remission periods (and the length thereof) as a triumph, something worth celebrating. If you have been in remission for 6 + years, this is worth celebrating. . . .Good for you! I’ve been there as well. If you choose to go the ATD route again, it is important for you to find a Dr. that is going to support you in that decision. There is some evidence that ATD’s in of themselves may have an immuno modulatory effect which in theory would inhibit the immune response to the thyroid. This is something being researched, but I don’t think there are any undisputed conclusions drawn from any of the studies. I’ve heard of the low dose Naltrxone Therapy, but admit that I don’t know much about it. I believe that it too is believed to have an immune modulatory effect.

I believe that Bobbi’s stated statistics and remission rates may in fact be accurate in studies looking at short term ATD use (12 – 18 months) which unfortunately seems to be most of the studies. One of the other Graves’ Foundation volunteers recently sent me an interesting article from the American Thyroid Association that is a bit more promising for those patients who are on ATD therapy longer term. I cannot post the link here unless I can get permission first, but I will say that study done over a 10 year period with a mean follow up period of 51 months (that is over 4 years). Remission statistics for those taking ATD’s longer term, even in minute doses indicated that 63% of those patients did not have a recurrence after treatment was stopped. 37% of those who did have a reoccurrence, usually had the reoccurrence within a mean period of 3 months. The fact that you have gone so long in remission should be encouraging. What is not encouraging to you is that you have relapsed. At the last two Graves Disease conferences that I have been to, presenters without exception have mentioned that stress indeed has a profound effect on the immune system, and is considered more of a definitive trigger than some of the other suspected triggers that are more speculative in nature. Hopefully, once you have given your body a chance to heal and hopefully remove some of the stressors in your life (easier said than done I realize), you will have a positive outcome once again. In my opinion it pays to persevere with this disease and hold fast to what you think is right for you, as long as you get the proper medical attention while attaining it.

Wishing you the best!

[saumya]

#1062069

Okay. While I appreciate the information and facilitators’ messages, I’d like to point out that the initial request from Jenni was for information on autoimmune disease treatments (which includes Graves’ but is not restricted to it like hyperthyroidism treatments are).

So, based on that, here’s what I’ve got…

While admitting that autoimmune treatments do NOT target anti-TSH receptor antibodies or any other specific auto-antibody, they are able to treat autoimmune diseases by removing/stopping the production of excess auto-antibody. Autoimmune treatments vary in intensity and suppression methodology…. they do not put autoimmune disease patients at immediate risk of having all immune response suppressed. In fact, a number of autoimmune diseases (RA, MG, MS, etc.) use these treatments regularly with good results for the patients. If you are interested, please contact a RHEUMATOLOGIST, not an endo, internist, or anyone else. Please remember that specialization in any field causes perspective restrictions. For example, endos in the US have a tendency to focus on diabetes (which does not respond well to immunosuppression) and treat all diseases, including Graves’, in a similar manner. Rheumatologists tend to focus on musculoskeletal and autoimmune diseases and have their own "faves".

People claim all sorts of things on websites and the such, it does not mean that the methodology gains/lacks scientific or clinical merit. High dose naltrexone is used to treat opioid addiction. Low dose naltrexone has been shown to help certain autoimmune disease patients. There are many doctors familiar with Graves’ disease that would prescribe naltrexone in the right situations. For example, I am on it right now.

I have been treated for over 8 months with a focus on immunosuppression of my autoimmune diseases which includes Graves’, Graves’ ophthalmopathy, fibromyalgia, and inflammatory peripheral neuropathy. I am currently on low-dose naltrexone treatment (3mg each night — $11 copay for a month’s supply) and undergoing monthly whole-body exchange plasmapheresis treatments. I have also undergone monthly IV-IgG (IV-immunoglobulin G) treatments and immunosuppression through naproxen, mycophenalate, hydoxyzine, plaquinil and multiple (over 6 separate and increasingly aggressive) steroid treatments.

As you can see, my team has been trying to suppress my immune system for awhile. If the plasmapheresis fails, I will move on to the big baddies, methotrexate which can cause lymphomas with continuous use or azathioprine which can cause all sorts of cancers ” title=”Sad” /> . I am not in a similar situation to other posters. I have a very strange form of Graves’ in addition to other aggressive autoimmune diseases. There are a few of us (multiple-SOL ) around and we depend on the fact that immunosuppression methods (such as rituximab) have been shown to treat autoimmune disease including Graves’.

I have no other options at this time than to suppress my immune system. Jenni, I wish you luck in processing all of your stressors and hope that you will find a treatment option that works for you.

All the best,
Saumya

[snelsen]

#1062070

Hi Saumya,
I am sorry that you have a boatload of different autoimmune diseases. That is tough, and some of the meds you are taking are very big guns, that is for sure. I sure hope you get some relief from your multiple symptoms from your diseases. I understood Jenni to want info from others on treatments for her Graves’, and of course that really is a different path than the multiple variety of your autoimmune illnesses. It’s really amazing how many there are!
There are 80 known diseases, and probably a lot more yet to be known. Reference:
http://www.nlm.nih.gov/medlineplus/auto … eases.html

It interesting to me that you mentioned rituximab. There was one small controlled clinical study (now closed) which did show some improvement in the inflammatory stage of TED. The population and sample was extremely small. Jim Rosenbaum, MD at the Casey Eye Institute is a doc whose specialty is inflammatory disease processes. There is also a doc at the Univ. of Michigan, whose name escapes me at this moment. But, as you said, Rituxin and methyltrexate are significant powerful immunosuppressants, as well as Imuran and couple others you have been prescribed. The risk/benefits outcomes must be weighed carefully. I guess you get a lot of labs, huh??

Sure hope you AND Jenni get some relief and improved health. It is very important for folks reading your post, to realize you have multiple autoimmune disease. Thank you for pointing that out. For many of the meds in your specific health situation relate to your other issues. and not be regarded as appropriate for Graves’. Good to check with docs, or multiple docs to weigh pros and cons of being immunocompromised.
Shirley
Shirley

[saumya]

#1062071

Hi Shirley,

Sorry that your hand hurts! Hope it feels better soon. Recently, I also found myself fending off multiple vegetable-knife fiascos unsuccessfully. What is it about onions that makes cutting yourself easier? ” title=”Smile” />

Thanks for putting the reference from the NIH out! Its a great place to find info and is always my number one recommendation for medical facts. And I’d like to reiterate the comment about my previous posting not being an approach for classic Graves’ patients. As Shirley put it, "to realize have multiple autoimmune diseases….many of the meds in [my] specific health situation relate to your other issues. and not be regarded as appropriate for Graves’."

Incidentally, are there any other people out there facing something similar? I hope I’m not hijacking the thread, but it’d be nice to compare notes. ” title=”Very Happy” /> (Facilitators, please feel free to dump this posting in another thread if its appropriate).

– Saumya

[Ski]

#1062072

Just a quick comment ~ the autoimmunity at the root of Graves’ Disease (and lupus, and RA, and all the other varieties of autoimmune disease) is definitely the holy grail for all autoimmune researchers, and we hear from them at our conferences. The science is VERY early on in the process of figuring out how to solve that problem ~ as a matter of fact, they are still in the process of defining the root cause of the problem itself, so while certainly all of us would prefer to solve the autoimmunity than treat our symptoms, we’re in a tough position. Hyperthyroidism, left uncorrected, gives us about a 50-50 chance of survival, and those who survive (to reiterate, those who are uncorrected, completely untreated) will absolutely suffer a reduced quality of life, and their overall health will deteriorate steadily as the condition remains untreated. Once hyperthyroidism has gone on for a long time, there is a potential for irreversible damage ~ things that the body simply can’t heal, even if it is ultimately returned to normal thyroid hormone levels.

The three treatments that are proven to bring our thyroid hormone levels back into the normal range and allow us to return to health are by no means perfect. Each has their own pros and cons, and every single one of us would prefer to simply "be well" than choose one of these ~ given the choice. Once we have Graves’ Disease, though, our choices are limited because we must resolve the issue of hyperthyroidism somehow in order to regain our health.

ATDs, as James mentioned, are not only used to attain remission. ATDs can be used for long term maintenance of thyroid hormone levels, and typically require only a very tiny dose to achieve that. More and more of the medical community is coming onboard with this "fourth" line of treatment (vs. using ATDs to normalize, then remove them and see if remission has occurred).

So the fact that you’ve come out of remission only means that you have a choice to make again ~ obviously you are not interested in any choice other than ATDs at this time, so the mission at this point would be to find a doctor who supports longterm maintenance of thyroid hormone levels on ATDs (or another attempt at remission, if that’s what you want ~ the odds do decrease with each successive attempt, but any number above zero means that SOMEONE achieved it).

Remember that your doctor "pressuring" you to use one treatment or another is simply not right. There are certain medical reasons why a patient would not be a candidate for one treatment or another, and that’s a different question ~ barring any other restriction from certain treatments, the final choice is OURS, as the patient. Our body, our choice. Any doctor who "bullies" their patients for no good reason is a doctor who shouldn’t have patients. We sign their paycheck by showing up to appointments, so if you don’t like the service being provided to you, find another doctor whose paycheck you DO want to sign. They exist. May be hard to find, but they exist. As a matter of fact, we are in the process of launching a "doctor resource" list, and hopefully it’ll make the process a bit easier for our online community.

[Ski]

#1062073

That wasn’t such a quick comment, was it? ” title=”Very Happy” />

This one will be quick ~ just wanted to point out that any time you stop taking ATDs and then restart, you start the clock afresh on experiencing the potentially dangerous side effects of ATDs (liver damage and lowered white blood cell count). They are VERY rare. Doctors have found that typically these side effects arise in the first month or two of taking ATDs, and having taken them in the past without complications is NOT a predictor of how it will turn out the next time. Just something you might want to consider, especially if you’re debating the process of attaining remission vs. longterm maintenance/management.

[mamabear]

#1062074

Hello and welcome to the boards. I don’t have time to read everyones post so if I repeat what someone else has said, I’m sorry.

I looked up Natrexone, personally I wouldn’t take it. I have 4 kids and with all of the side effects and monitoring I’d be in the dr’s office more than not if I were just on the ADT’s.

I am 37 and have been in remission 4 years now! For you to have been in remission for 6 years is a great thing! I can understand being pissed about coming out of it but that is the nature of the beast. You HAVE Graves’ Disease and in or out of remission is just part of the journey and it can stink at times!
You are feeling the effects of the disease right now so your emotions are running a muck right now and you want answers and you want this nonsense to stop… heck I would too!

I am a firm believer of not fluffing things up. I have Graves whether I’m in remission or not, I am grateful to be in remission but when I come out of it which I know I will, I will deal with it again with ADT’s and if that does not work then I’ll sort out my other options and go from there.

I also chose not to do RAI, at the time I was trying to get pregnant, had a sister who was pregnant and a grandfather who was going through chemo and a 5 yr old son of my own. There was no way I was going to stay away from all of them. I was scared to do the RAI and chose PTU. It happen to work for me and I was happy about that.

You have 40 acres that you are dealing with a teenager and other young adults in your home, your mom and a crap load of stuff to do for this property to be effectively running like a ranch!!! YOU NEED HELP, you are not superwoman(not that I think that is what you are thinking but I will throw it out here just in case you were ” title=”Wink” /> ).

K eep
It
Simple
Silly
KISS is something I tell everyone, it helps remind us to truly try to keep it simple!

Remember your angry and want to be free of this disease once and for all and you will do anything to do that, but in the mean time you are going to hurt yourself further by not treating the issues that you have and your heart and muscles will start to show the effects of that if you do not get your levels in check.

I think that looking at different treatments is a good thing, but not doing anything while you are researching something else is not going to be a good thing for your health and you need to think of your health and your child. I am sure you have and those thoughts race through your head often, you need to stop, breathe, get help organizing your 40 acres because you WILL need help with it, write everything down so that you don’t forget it and try the ADT’s again while you are researching the Naltrexone.

100 different people will give you 100 different answers for 100 different reasons. I wont use that particular drug because as I said, i feel that the monitoring and side effects would be way to much, I am too active in my life. I already know PTU/Tapazole helped me so why wouldn’t I try them again. You will get someone else saying it’s not good and someone saying it’s what they are on and it’s great.

You have to take all of your options, if this is an approved treatment to be known to work through trials then talk to your dr. about it. If it’s that you will be the guinea pig then I’d say no, you have a lot at stake and your child being the first one.

No one hear can convince you to do one or the other, it is up to you. You have to remember that having Graves and being out of remission, we tend to not think rationally even if we feel at that moment that we are. We swear that there is nothing wrong and we are find and capable of dealing with things and that everyone else is nuts because they have no dang clue what we are going through…. If you are feeling this way then you ARE effected and should take a step back.

This is a journey and it’s hard at times. I hope you find the answers that you are looking for.
prayers for you and your family to be strong during this time of need. Oh and hugs to, because I’m sure you can use one!
” title=”Very Happy” />

[rfmjbs]

#1062075

Jenni,
There’s a neat study here on combining steroid injections with ATDs reducing relapse rates to single digits.
If the link doesn’t work, go to clinicaltrials.gov and seach for thyroid dexamethasone

Prevention of relapse of Graves’ disease by treatment with an intrathyroid injection of dexamethasone.
http://clinicaltrials.gov/ct2/bye/zQoPWw4lZX-i-iSxuBcyeXNxvdDxuQ7Ju6c9cXcHuioyzTp9ai7HSTDxNBciescgm64LD61PSQ7Hc6D65B0LVi7yg67VN6h9Ei4L3BUgWwNG0iY6vQ1gW1-He6oR9RC5OgCtcKCj.

The article is free to download and it gives a precise run down of the dosages used at each step and the timing and the details of how the study was conducted.

Evidently before ATDs, steroids were all doctors had besides herbal options, but they didn’t know what we do now about how to taper steroid dosages so as to prevent adrenal failure and other nasty side effects.

If you have time there are just over 400 thyroid studies you can comb through if you really want to see ALL kinds of different trials around hyperthyroidism and there are many linked to the published results to get the details.

In my ‘alternative’ case, I’ve been on ATDs off and on for over a decade. In my most recent relapse, after a few months of protesting that GD + TED = RAI is STILL not a choice for me for the 3rd time in 10 years, she couldn’t take it anymore. I was fired by my endo. who out of nowhere had stopped hiring PAs who were willing to try Armour for hypothyroid patients, and she started making you sign ‘OMG IF I TAKE ATDS I COULD DIE" waivers. Also, she has decided you don’t get two tries with ATDs, if you relapse you have to do RAI or you’re fired.

Perhaps the endocrinology profession needs a healthy reminder of that whole ‘it is the patient’s decision’ thing that the medical studies are starting to take note of (sorry venting) Or is there some sort of Endo malpractice insurance guideline we should lobby about instead I wonder?

Worse, all the Endo’s by my house have done residencies with her, so I had to go looking farther away for someone with a more open mind.

I now have a wonderful ENT practice that is a 45 minute drive, but he actually noticed my Vit D levels didn’t even register in the double digits, that I had recently relapsed with mono, my mono antibody count was sky high, not, I had it once when I was 18, but why are you able to get through your day high #s along with a high Grave’s antibody count.
I received one steroid shot (not in the throat), and I am using a B12/Vitamin D lotion twice a day and two different antivirals along with my Tapazole. Life is pretty good. I’ll be done with my six months of antivirals shortly, then 6 more months of tapering the tapazole, until my TSI antibodies come down.

I would love for someone to do a study with some other steroid delivery method besides throat injections ” title=”Smile” /> but if just a few Endo practices would even try replicate the study as is, we’d at least have a solid alternative treatment with a success record that could drive rapid adoption.

Good luck Jenni! ” title=”Very Happy” />

[Kimberly]

#1062076

Hello – I had not seen this study…the results are certainly interesting, although keep in mind that the side effects from steroid therapy need to be weighed against any potential benefits.

[Author]

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