[Ski]

#1073757

Hi Kathy,

We try to be even-handed about all the possible treatments, because each of them work and bring us successfully back to health. There really is no "best" way, otherwise two of the choices would have been abandoned long ago. It’s a very personal decision ~ we each have our own biases, and that comes into play. Learning all you can about the treatments is the best possible way to make up your mind.

There is a certain degree of sense in starting with the meds so you can bring your levels back into the normal range, then you get some of your concentration abilities back and it’s easier to decide which of the three treatments you prefer for the long term.

You usually see results pretty quickly with ATDs, but as far as feeling WELL, that can take a little bit longer. At first, it can take our body up to six weeks just to flush out the excess thyroid hormone in our bloodstream, so while the ATD might be working, you may not notice an enormous difference right away. After your levels begin to change, there are adjustments made so you find a maintenance dose that keeps you where you want to be. At that point your body can begin to heal itself from the onslaught of hyperthyroidism.

We have a list of recommended books on the main web page, which you can either order up from Amazon or check out from your local library. My favorite is "Graves’ Disease: In Our Own Words," which is basically a compilation of some of the more common questions and answers from this very BB, as well as some of the GDF bulletins and extra info. It is a comprehensive read on every aspect of having Graves’.

We are glad you found us! And we’re also glad you’ve been successfully diagnosed. That can be the first, very high hurdle for some patients. Once you know what you’re dealing with, it may take time, but at least you’re on the right road.

[kathyb]

#1019735

I have been having symptoms of hyperthyroidism for a few months now. Last August I was tired so we checked a TSH level then. I was borderline hypothyroid. Imagine my surprise when my TSH level was very low in January and after today’s tests results show that I have Graves Disease. I have not been having any symptom control and am very tired of feeling sick. I would like to find out what options there are for me to choose from to treat this disease. What is the best to choose? If I start on anti-thyroid medication what are the risks and how long do I need to wait to see results? Is it better to just skip oral drug treatment and choose to have the radioactive iodine? I am confused as to what to do. Any help would be appreciated.

[sabinaa]

#1073758

Kathyb – definitely start with the meds first! It is the best first step in getting yourself together again, like the previous post suggests. Do not rush into destroying your thyroid! You may be able to conquer your Grave’s and it is worth a try.

The first 3 doctors that I saw about my hyperthyroidism all suggested that I take radioactive iodine to destroy my thyroid. My T4 levels were really high at the time. But I loudly refused this type of treatment. I absolutely did not want my thyroid destroyed, and I did not want to be on medication for the rest of my life!

I actually tried all kinds of herbal and natural remedies for a while. Unfortunately, none of them made any difference. I started beta blockers just to keep my heart palpitations under control – they did save my life as my resting heart rate was 120. I just put up with the other symptoms for many months. It was awful, but the weight loss was welcomed. But my T4 levels kept rising up and my TSH levels became pretty much non-existent. Then I realized that I was literally wasting away, and my mind was just too spun up, so I started taking some PTU (medication that will suppress the production of the T3 and T4 hormones in your thyroid). I was supposed to take 2 in the morning, 2 at noon, and 2 in the evening. Well, since I had never taken any meds before, I only took one in the morning, and one at night. My Dr. kept lecturing me about it, but I didn’t care. I could feel what was happening. And over the next several months I was slowing down from this wacky high, and I was gaining weight for the first time in years. That’s when I stopped PTU all together and I changed my life style to address my dysfunctional immune system (rest, reduce stress, no coffee, detox liver, fresh foods, etc.) For the past 2 ½ years my Grave’s has been dormant. My thyroid is intact and functioning normal.

So, don’t rush into destroying your thyroid! Study Grave’s, learn your symptoms, listen to and understand your body, and face the disease front on!

[Ski]

#1073759

Typically ATDs are given at a very high dose, at first, to stop the attack of hyperthyroidism, then the dose is lowered until you find the right "maintenance dose" that will work to keep your levels within the normal range. You may have extended the period of time in which you felt badly, just because you didn’t want to take "so much" medication at the time. It is always best, once you’ve arrived at a decision to take ATDs, to follow the doctor’s instructions. The dose would have been lowered in time, per the regular course of things.

[LaurelM]

#1073760

Hi Kathyb,

I went the ATD route and have been happy with that choice. I initially started on are higher dose for a few weeks and fairly rapidly went hypothyroid so we were able to drop down to a much smaller dose pretty quickly. I was on ATD’s for about 1.5 years and went into remission in Jan. 2006. I was also initally on a beta blocker for symptom control but was able to taper off that within the first couple of months.

I currently feel like my pre-Graves normal self and my thyroid is functioning normally. I continue to get my thyroid levels checked every 6 months because I understand that I can come out of remission at anytime and I may not be symptomatic enough to notice but would want to catch it early. If it does happen again, I think I would want to try the ATD’s again, at least initally because, they do start working to bring down thyroid levels right away. This would allow time to consider other treatment options without feeling rushed or pressured into anything. And, I would then consider all 3 options depending on my circumstances at the time. Right now in my life circumstances, I have two small children so I would be less inclined to do the RAI but I would still be willing to consider it. I would also look at sugery as an option.

Another thought I had about all of the choices is that no matter what you choose, you will still have to have lifetime monitoring of thyroid levels to ensure that you are either at the correct dose of ATD, still in remission, or on the correct dose of replacement thyroid (if you went the RAI or surgery route). They all have medical reasons why one might be selected over another which should also be taken into account. A very few people do not tolerate the ATDs, people with clotting disorders might need to avoid surgery, people who do RAI have to take precautions regarding being around people (esp. small children) for a few days, etc. There are many, many valid reasons for and against each choice.

I like still having options but I can also certainly understand why someone might just want to get treatment over and done with and onto just the replacement dose.

The other thing to remember is that all of the options take some time to dial into the correct doses and to be patient with recovery. It may take several weeks to begin to feel better regardless of what you choose.

I wish you a speedy road to recovery.

Laurel

[kathyb]

#1073761

I was started on PTU 50 mg 3 times daily. I thought that this was a maintenance dose. My doctor feels this is the correct dose to start with according to recommendations from Endocrinologists he has talked to in the past. I am not so sure. Last night I started to develop a painful, swollen lymph node on the back of my left neck. Today all of my lymph nodes in the back and front of my neck are enlarged and painful. I feel like I am more sick. Is this a secondary infection or a side effect of the PTU? I am becoming frustrated.

[Ski]

#1073762

There are several possibilities ~ one could be a side effect of the PTU, so you should call your endo’s office and let them know what’s going on. They may send you for some tests to investigate.

[kathyb]

#1073763

I have been running a fever today between 100-102.6 depending on the time frame since I last took Ibuprofen. The lymph node swelling is worse. I am still awaiting a call from my doctor who feels he can manage this and has not recommended referral to an endocrinologist.

[jbauman]

#1073764

I started feeling terribel Aug. 08…I knew something was not right..my vision was blurred and it was difficult to drive. My energy level was very low and I am usually a very active person. I had to stop Yoga becuase I just could do the poses. I aam not a candidate for the hyperthroid med’s becuase they can reduce your WBC and I had chemo treatment back in 06 for breast cancer and my WBC still is low….so the doc’s I have been recommened IAR( idone therapy) I would love to do this nautorpathically but have felt crappy for so long and just want to start feeling better. I head to Italy in June and want this to be somewhat under control. My worst effect of MG( Mysthenia Gravis) is my blurred and poor vision. I can deal with the rest. Any thoughts on how i can prepare myself for the Iodine tomorrow?

JB North Bend, WA

[Ski]

#1073765

Kathyb,

Lymph node swelling and a fever CAN signal the lowering of white blood cell count, which is a possible side effect with PTU, and it is very dangerous if left unchecked. You need to speak with your doctor again ~ it might even be worth going to urgent care or the ER just to be sure.

[Ski]

#1073766

Hi JB North Bend,

First, myasthenia gravis is something else entirely. Graves’ Disease is what you’re dealing with, and considering your blurred vision, it’s possible you are also dealing with Thyroid Eye Disease (TED). These are separate autoimmune conditions that happen coincidentally, and they are treated separately.

There is no naturopathic treatment for Graves’ that works, so while we’d all like to handle things with less chemicals, there is no option for that.

The RAI has a slight chance of worsening your eye symptoms (temporarily), so you may want to check with an ophthalmologist prior to doing the RAI treatment. I’m not sure whether you’re doing the treatment right now, or if you’re doing the initial scan/uptake, which uses a different (non-damaging) isotope in order to evaluate the activity in your thyroid and determine your dose of RAI. The scan/uptake RAI will not cause complications with your eyes, but the RAI treatment may. It can be avoided if you take steroids before & after (a few weeks total), but steroids carry their own dangerous side effects, so it should be fully evaluated before you decide to take them.

I hope that helps.

[kathyb]

#1073767

My WBC was 5.2 today. My doctor still feels this is a viral illness. I am not convinced. How long do you have to be on these meds before they can affect the WBC? I have been taking them for a short time.

[sabinaa]

#1073768

Ski wrote: It is always best, once you’ve arrived at a decision to take ATDs, to follow the doctor’s instructions. The dose would have been lowered in time, per the regular course of things.

See, the problem I have with Dr. recommendations is that they focus on eliminating the symptoms, and not the healing of the actual disease. Grave’s is an auto immune disorder. That’s what any treatment should address! Four out of the 5 doctors / specialists that I saw recommended that I do a radioactive treatment and destroy my thyroid. In Europe, doctors will actually try to avoid this method, because, if you destroy your thyroid, you will be on meds for the rest of your life!

Now, I am not saying that for some people this is not the appropriate treatment, but it is very well worth to try meds first to calm an over active thyroid, and THEN, focus on putting your immune system back into balance. My 5th doctor finally explained this to me – and in my case, I feel completely cured of Graves – including the eye problems! The key to curing Grave’s is really your immune system. Dealing with repairing your immune system will take time and patience, and knowing how to be good to yourself. So, boy, I am really glad that I didn’t listen to the first 4 doctors, because now I still have a healthy working thyroid, and my eyes look almost normal again.

I am really thinking that some of these invasive treatments will be part of the past one day, when medicine allows a better understanding of our human body and the importance of each and every organ in a complex balance. Doctors are not gods!

[Ski]

#1073769

It’ll be really nice when the autoimmune disease is a thing of the past.

We are a long, long way from that day.

It isn’t even "fixing" the immune system. It’s understanding why our body creates cells that attack our own healthy tissue. That basic question has yet to be answered. Until we get to that point, doctors will continue to chase the symptoms and try to keep patients alive, first.

I will agree that doctors are not gods, and too many will recommend for us the treatment they would choose for themselves. Still, it is NOT as easy as saying you have a "healthy thyroid." You have a compromised thyroid, one that is susceptible to an antibody attack, because the antibodies are already in your bloodstream, and they have affected your thyroid at least once. That means the fibroblasts created by the antibodies are in your thyroid even now, even in remission, and given the proper set of circumstances, can "wake up" and affect you again.

This is not a simplistic disease (actually, syndrome) by any means. Each of us needs to get all the information we can and make our own decision.

I would just caution everyone not to decide (as some doctors do) that what you’ve chosen for yourself is the choice everyone else should make.

[hyperm]

#1073770

Hey I read the last thread and yes you need to get your bloods done straight away – I am just after experiencing a thryoid storm and had a FBC upon leaving hospital I got a call the next day to stop all meds immediately even though I had been so unwell as my WBC was at danger levels – try not to worry too much (like me) as they can start to improve in over a week and they can try some other kind of med.

Good luck ” title=”Wink” /> ” title=”Wink” />

[Author]

Posts