[Kimberly]

#1064022

Hi John – Sorry to hear about the challenges you are facing, but I’m glad that you found us. Yes, this site has many regular posters who are familiar with Graves’ Disease.

First of all, good for you for pushing your doctor for a diagnosis. While Graves’ is more *common* in women, it does strike men as well. Two of our facilitators here are gentlemen who have experience with Graves’.

GD is an autoimmune condition where the body’s own immune system mistakenly attacks healthy tissue. In Graves’, the targets are the thyroid and the muscles behind the eyes, and occasionally the skin, particularly in the shin area. The attack on the thyroid almost always causes patients to become hyperthyroid. While there is no cure for the autoimmune component, the various treatment options focus on getting the hyperthyroidism under control. Otherwise, this can cause complications such as bone/muscle wasting and heart problems – and occasionally thyroid storm.

The Anti-Thyroid Drugs (like Tapazole) control our hypERthyroidism by preventing the thyroid gland from using iodine to manufacture thyroid hormone. So unfortunately, we can go hypER again if the meds are withdrawn while our antibodies are still raging. Also, some patients can go into remission for a time…only to have the antibodies fire up again at a later date. Some patients find that relapses are often associated with significant stress, or an illness or injury.

It’s good that you had labs run when you felt the hypER symptoms coming on again. Your endo will be able to help you walk through your various treatment options. If you choose to do another round of Tapazole, that is an option that is available to you. However, be aware that the more serious side effects (White Blood Cell and Liver issues) with Tapazole usually occur within 90 days of starting the meds. And unfortunately, your clock “resets” if you stop and re-start the meds. Although these side effects are RARE, you will want to be vigilant and get regular tests for WBC and liver function if you decide to go this route.

Best of luck to you!

[jfouts1979]

#1018325

Hi everybody. I am new here. I have some questions – hence the reason for my posting. Generally I just take a back seat and watch what others have to say, but I have somewhat of a unique situation.

History: My Mom and Sister both have Grave’s Disease. My Sister had the eye issue that comes along with Graves and actually had to have surgery to reduce the inflammation behind her eyes. I too was diagnosed with Grave’s Disease in early Summer of 2008. My hands were so shaky I could not get a spoonful of soup to my mouth without spilling it all by the time I got it there. The doctor I had at the time said there was no way I could have Grave’s Disease because I was a man. I made him take my blood and run the tests anyway. Came back with a TSH of 0.0001, and out of range T3 and T4. He then did an antibodies test and those came back all out of whack. I can’t remember those ranges.

To make a long story short, I saw an Endocrinologist who confirmed Graves Disease. He got me started on Tapazole, and after about a year my levels were fairly stable and I was taken off of Tapazole.

I had a spine surgery in April of 2009. During the surgery, the laser that was used damaged part of my spinal nerve leaving me with a chronic burning pain. Parasthesis – like your flesh is on fire but there is no fire…an extreme burning sensation. I lived a long time in that chronic pain until I finally started taking Neurontin and now Elavil too. The Neurontin and Elavil help to ease the pain. I recently noticed that it seemed like my medicine was wearing off quickly. I also have been waking up drenched in sweat, find that I am always hot, and my hands have a slight tremor to them again. I had my Primary Care doctor run my bloodwork.

Three months ago my TSH level was at .43 (very close to within range). As of a few days ago, my TSH is now 0.008. I made an appointment with an Endocrinologist again. Does anyone have experience with recurring Graves Disease here?

My Mom and Sister both had RAI therapy, and both said they felt like that was a big mistake – they are both hypothyroid now and take synthroid.

With my pain condition, it is very difficult to try to maintain a fairly normal lifestyle. I find that Graves Disease is complicating my life even further…

John

[Ski]

#1064023

Hello John, and welcome,

I echo all that Kimberly has said, and I just wanted to add a comment.

Your chronic pain may well have contributed to the recurrence of GD. Remission is, by definition, a temporary condition, and it is not surprising to see a patient come out of remission. Stress of any kind floods the system with adrenaline, which stimulates antibodies, and in MOST cases that’s no problem, but with autoimmune conditions, patients can see escalating symptoms during this time.

The fact that your sibling and your parent are RAI patients, and unsatisfied, doesn’t necessarily mean the RAI itself is the "problem." It may be that they have never had a physician who was willing to dial into their perfect thyroid hormone POINT on the scale, and that could mean they are "slightly off" of where their levels should be in order for them to feel truly well. We are all different in that regard, and the normal range is so large simply because there are people at each point along the range who report feeling "fine," so we can’t say that any one point is better than another for the entire population, it requires good care by a physician to find that perfect point for us. In addition to that, once we have begun thyroid hormone replacement and found ourselves in the normal range (even found our normal point), life throws curveballs at us by "revising" our need for thyroid hormone replacement for various reasons. Our age, weight, activity level, hormone status, ALL of these things can change our status and we need to revisit our dosage in order to return to full health. We recommend testing at least annually to catch these types of changes.

In the end, the roller coaster effect of finding yourself hyper/hypo/normal/hyper/hypo/normal can be far more damaging than anything else. This is a good time to evaluate your treatment options and decide what’s best for you, in your current condition. It’s fine to take ATDs to get your levels down so you can think (pay careful attention to the side effects Kimberly spoke about ~ even if you’ve taken ATDs once and *not* experienced those side effects, it can happen the second time), but make sure you evaluate carefully all three options. It may be that you’d have an easier time going forward if you were "working from zero" to replace thyroid hormone, rather than trying to slow the flow with ATDs. UP TO YOU, though, remember that. Your doctor has the right to give you input, but the decision is all yours, absent other blocks to using a certain treatment (such as a hemophiliac wanting surgery ~ that wouldn’t fly).

[Harpy]

#1064024

Hey John
Sounds like you’ve had a bit of a rough trot with that spinal surgery, and that may have been the trigger for a relapse of GD or other factors may have contributed, who knows.
From what I have read, indications are that it takes an average of about 4 years on ATD’s to reduce antibodies to a point where long term remission is possible, some people may take 1 year, whilst others may take 10. Most people who do achieve long term remission will often have relapses, with each remission period being longer than the previous one. Although you will always need to be diligent, regarding a possible relapse, after you go into remission, but that is no different to the diligence that is required after Surgery or RAI in managing your body’s health, as others have said ultimately it is up to you which way you go.
I think that the HypO state is considered a minor issue by the medical profession, easily managed by dosing with replacement hormone, but that isn’t completely true and for some getting that level right may take years and some never do get it completely right for whatever reasons, so I do not see any of the 3 options(ATD’s, Surgery or RAI) guaranteeing an easy quick solution, Hypo is just as bad as the Hyper.
You said GD is complicating your life, not sure in exactly what context you made that, kind of sounded like it was, I have this thing hanging around and I want it removed, GD is not external, it is not a virus or bacteria, it is a part of you and your bodies behaviour and the sooner you embrace this aspect the easier things will become, most people see all their illnesses and conditions as coming from outside, and want an outsider to get rid of it, in most cases it is our behaviours which contribute to our ailments and very often it needs us to correct our behaviours to get onto the healing path,
But sometimes of course it’s just a case of "S#!t Happens" and you just gotta deal with it anyway
No one here can tell you what is right for you, you need to do your research, so that you can make an informed decision and be responsible for the decisions you make.
Good luck with your Journey, and I hope your Sister and Mother feel better some time soon.

[jfouts1979]

#1064025

Thanks to everyone for responding to my posting. I woke up in a soaking sweat last night. I am freezing my wife out of our house. It is a good thing the Endo appointment is coming up soon (on the 30th) – that is only 10 days away.

I think that this recurring episode of Graves is probably most definitely stress related. My wife and I are starting a business in addition to our regular full time jobs.

If you all get a chance, please visit our website, http://www.gratefulgoat.com. Our winery is called Grateful Goat Vineyard & Winery.

The stress of taking care of a vineyard in addition to my regular work load is significant. Add on to that the fact that I am doing all of the renovation work on our tasting room, etc… and you can see how I might be a little stressed.

We also just found out that after 3 years of trying, my wife is pregant with our first child! The first ultrasound will be done tomorrow, so we can hopefully hear the baby’s heartbeat.

I feel great about the baby on the way, but stressed about that as well.

Can anyone tell me how to reduce my stress level to help get the Graves under control?!

I am feeling frazzled today.

John

[Kimberly]

#1064026

Hello – First of all, it certainly helps if you can pare down your commitments as much as possible while your body heals. Look at every angle of your life to see if there are things that you can “ditch” or “delegate.” I wouldn’t want to tell you to NOT pursue your dream of starting a business…but with a full-time job and a baby on the way, you certainly have a lot on your plate. If you are convinced this is the right time and the right opportunity to start a business, is there any way that you can get some help?

Building some “down time” into your day to focus on activities that bring you joy and give you energy is also helpful. If you do a search on this forum for “stress reduction”, you will no doubt find some good suggestions from other posters. Examples include meditation, gentle yoga, walking, reading, watching funny movies, or attending a live musical or theatrical performance.

Also, I find that I tend to do a better job of managing stress if I can focus on living in the moment, rather than fretting about the past or future. MUCH easier said than done…but it’s definitely worth the effort!

Best of luck!

[Author]

Posts