Graves Eye Disease and Hyperthyroid

4 days back on Methimazole (switch from PTU) and my heart is "fluttering"

I've been down this road before.  The kind of road where you have just enough familiarity with it to antipate each twist and turn.  Even though the twists and turns are the same, I must say, I've NEVER gotten used to them.  Here's what's up.

If you read my post a couple days ago you know that my doctor had me switch back to Methimazole from PTU.  I'm taking 20mg twice a day.  A good dose.  You'd think that after 4 days the typical symptoms you have when your labs are out of bounds would subside.   But not mine.  Especially what I call the heart "fluttering."  The sensation that feels like your heartbeat has a vibration to it.  When I get up and move around quickly I get lightheaded.  

In the past when this would happen I'd go to work and pretend all was normal.  But today I decided not to go to work.  For those of you reading this who have Graves', you know how difficult living with symptoms can be.  The added stress of trying to work through it, as I have for 7 years now, is sometimes too much.  

Finally, I'm at the point where the anti-thyroid medication treatment plan is wearing thin.  I would love to hear from some of you who've had either surgery or RAI and how you did with that treatment plan.  I worry immensely because of my ongoing eye complications.  The "active" eye phase is supposed to stop after 30 months.  My eyes have had problems for 80+ months with no end in sight (pardon the pun!)  There's always the risk that either of the two options remaining can negatively impact the eyes, including the eye protrusion, and possibly severely.  

Today my eyes look normal to most people.  That is except for me and my U of M eye specialist.  The thought of having complications due to an alternate treatment plan is downright frightening.  I don't know if I could handle the eye bulging all over again, and taping my eyelid shut at night.  I suppose things could be worse, but all I want is the constant ups and downs of Graves' to end.  It's too much of a roller coaster and this is the worst I've felt in quite some time.  

The other question I have for readers is this: for those of you seeing both an endocrinologist and an eye specialist, are they in the same location (or working out of the same hospital) or are they seperate?  In my case, my primary care physician works out of one hospital, my endocrinologist works out of another hospital, and my eye specialist works out of yet a 3rd hospital.  And none coordinates care for me.  I do that.  U of M has outstanding Graves' specialists on the endocrinologist front, so I'm thinking of switching doctors after seven years with the one I have.  Just to have better coordinated care and discussions around alternate treatments (most notably because if I did have eye issues I'd have my eye specialist perform the surgery).  Make sense?  

Today was especially frustrating for me.  As a problem solver I just want directions to just make things better.  Like the ingredients and directions on preparing a recipe (something I'm good at).  But health issues don't work that way.  Even when you follow "Doctor's orders" to the letter that's still no guarantee you'll improve.  So that's where I find myself late this evening.  Wondering what to do next knowing if I go back to bed the "fluttering" will increase (for some reason when I'm lying flat it's worse) which will only add to my anxiety, and sleeplessness.  So just like I did nearly 5 years ago (this May) when I started my little blog, I sit here typing away hoping to help someone, maybe even you, understand how complicated, and frustrating, Graves' Disease really is.  

The latest update: eye movement, lid retraction, dry eyes, Blepharitis, neck pain, Vitamin D, and TSH level

Greetings everyone!  It's been awhile.  I have some new news.  

Eye Movement:  Apparently my eyes are still on the move, as they have continued to move in and out but after a period of stability they're changing again.  One eye receeded 1mm, the other eye moved outward 1mm.  And the right eyelid is beginning to retract again, and this time, you can visibly tell.   

For the longest time my right eye looked virtually normal, and only my eye specialist could tell there was the slightest hint of an issue with the lid retraction.  But this past Tuesday when I met with him at the Kellogg Eye Center he informed me that my right eye had changed, noticeably this time.  The fissure measurement, which measures total eye opening, has increased in my right eye.  That's caused by the lid retraction.  

In addition, the oil glands that surround my upper and lower eyelashes are plugged, which is causing Blepharitis which is a swelling/inflamation of the eyelid.  My right eyelid is a bit swollen and you can visibly tell.  He has me doing a warm compress in the morning and again at night, then pushing down on the upper lid with my fingers, and pushing upward on the lower eyelashes, to help secrete the oil from the now-warmed glands.  And he also gave me a prescription eye ointment (Erythromycin, for use not as an antibiotic, but as an aid to open up the oil glands.  (He explained it has this purpose beyond the antibiotic nature of the medicine.)  Because of the lid retraction and the blocked glands, of course it's expected my eyes would become drier and they are.  So I'm using my eye drops throughout the day to keep the eye surface comfortable.

Meanwhile, I saw my endocrinologist on Friday morning and had the usual tests for the TSH, T3 and T4.  In addition, I'm having neck pain in the area of my thyroid gland.  My doctor has asked me to have another ultrasound of my neck, which I'm going to have this Friday.  I'll report back then.  He also ordered a C Reactive protein test with the standard battery of blood tests to determine if there was any inflamation in my body (this test can't tell you where the inflamation is located, but it can be useful when done with other tests such as ultrasound where you're looking for something suspicious, or possibly inflamed.)  Like the thyroid.  I already know I have thyroid nodules, one is 3mm and the other is 5mm.  So we'll be trying to determine if I have more, of if their size changed.  Again, I will post more when I know.

I spoke to my endocrinologist this afternoon, and he explained that my T3 and T4 levels are in the normal range, but my TSH went from .21 last time (and .24 before that) to .024 this time.  So the TSH level is suppressed to say the least.  So beginning this weekend, my PTU dose will change from once daily, to once daily M-F and twice daily Saturday and Sunday.  We'll see if that makes a difference.

I've been on a prescription dose of Vitamin D (50,000 IU) once per week, and that improved my levels to 44.5, when 30-74 nanograms per milliliter (ng/mL) is normal.  So that's good!

So there is quite a bit going on.  But that's the latest.  I'll let you know how the thyroid scan goes this Friday.  I'm hopeful there is nothing new but we do need to get the neck pain checked out.

 

Thanks everyone and good night.

 

 

Day 2: Graves' Disease & Thyroid Foundation

Hi again!  We had a great second day in Boston at the annual patient and family conference, "A Bridge to Wellness."  Here are a few highlights from the day:

 

Dr. Lawrence Wood, Associate Physician at Massachusetts General Hospital (retired) and Board Member, Graves' Disease and Thyroid Foundation

1) Thyroid surgery is a tricky surgery.  Two important questions to ask your surgeon are how many surgeries they do in a year and how many of those caused vocal nerve damage if any.

 

Dr. Scott Rivkees, M.D. Chair, Department of Pediatrics at the University of Florida College of Medicine

1) Graves' Disease affects 1 in 1000 individuals, or about 1 in 100 women; it affects 1 in 10,000 children, and more girls than boys; 2) children have lower remission rates; 3) 15-30% remission rate for young children; 4) the younger the child, the less likely it will ever go completely away; 5) there are risks with PTU in children (be sure to discuss with your child's doctor); 6) we have had no new anti-thyroid drugs in the past 60 years; 7) increased anti-thyroid drug treatment lengths do not equate to increased remission rates; 8) thyroid surgery is more challenging in children than adults.

 

Dr. Barbra Miller, Assistant Professor, Division of Endocrine Surgery, University of Michigan

1) complications after total thyroidectomy in children are not significantly higher than in adults; 2) thyroidectomy should be performed by high-volume thyroid surgeon; 3) click this link for information on University of Michigan's Division of Endocrine Surgery; 4) click this link for the American Association of Endocrine Surgeons Patient Education Site; 5) thyroid nodules > 1 centimeter should be biopsied; 6) an uptake scan of the thyroid can determine which thyroid nodules are "hot" and "cold" which helps to determine which ones should be biopsied; 6) It's important to follow thyroid nodules over time; 7) questions to ask you thyroid sugeron should includ how many thyroid operations have you performed, what is your recurrant laryngeal nerve injury rate and if zero, ask for volume of surgeries performed; what is your rate of permanent hypoparathyroidism/hypocalcemia; do you routinely use intraoperative nerve monitoring; 8) Recurrant laryngeal nerve injury is very important to understand, therefore need to find an experienced surgeon.

 

Dr.Alon Kahana, MD, PhD. Helmut F Stern Professor, Ophthalmology and Visual Sciences, Kellogg Eye Center, University of Michigan

1) 80-90% of Graves' Eye Disease occur within 18 months of Graves' Disease diagnosis; 2) 20% of Graves' Eye Disease patients have normal thyroid levels; 3) there is no magic bullet, each person's case of Graves' Disease is unique; 4) common symptoms of eye pain include pressure around the eyes, pain with eye movement, eye scratchiness with irritation or itching, and eye pressure; 5) there are natural lubricants that can help with eye pain issues including a warm compress to improve oil gland function; a cold compress to reduce eye swelling; lubricating ointment to reduce evaporation.

 

Dr. Scott Rivkees:  Chair, Department of Pediatrics, University of Florida College of Medicine

1) treatment of pediatric Graves' Disease is associated with excessive weight gain 

 

Dr. Ray Douglas M.D., PhD, Assistant Professor, Ophthalmology and Visual Sciences, Kellogg Eye Center, University of Michigan

1) there are two phases to Graves' Eye Disease, the active and stable phase; in the active phase there is active inflamation and passive congestion; 2) every patient should have a customized treatment plan; 3) eye swelling restrics blood flow in the eye area which causes the swelling, which can also cause scarring of tissue; 4) scarring can cause eyelid retraction; 5) there are 2 types of Graves' Eye Disease, fat disease and muscle disease; 6) there are treatment options available to patients with Graves' Eye Disease, including fat decompression, bone decompression and eyelid repositioning (surgery).  

 

It was truly a great day and it ended with a lovely dinner as a group where numerous awards were presented to the medical professionals and volunteers.  

Q&A:

What are foods to avoid with Grave's Disease?  Dr. Jeff Koff:  foods with iodine including kelp, seafood

Is there anything that can help with early Thyroid Eye Disease?  Dr. Ray Douglas:  A European study has shown that selenium may help in the early stages

 

Day 1: Graves' Disease & Thyroid Foundation Annual Conference Summary

Hi everyone!  We had a great day here in Boston at Day 1 of the "Bridge to Wellness" conference hosted by the Graves' Disease & Thyroid Foundation.  We heard from an array of experts who spoke on a variety of topics, which I've summarized for you below:

Dr. Terry Smith, from the Kellogg Eye Center, University of Michigan:

1) Rheumatoid arthritis is a close cousin of Graves' Disease; 2) Graves' Disease is a syndrome; 3) Graves' Disease comprises both systemic and anatomic specific manifestations; 4) the hypothalamus and pituitary gland call the shots, they direct the thyroid gland; 5) women are 9 times more likely than men to get Graves' Disease; 6) Graves' Disease travels in families; 7) like weight loss, weight gain is possible and occurs in Graves' Disease and 8) Graves' Eye issues occur in 10-40% of Graves' Disease patients.

Dr. Lewis Braverman, Professor of Medicine Boston University

1) In the U.S., most cases of GD are treated with RAI.  Second is anti-thyroid drug treatment.  Third most common treatment is surgery; 2) there is risk of worsening of eye issues in both surgery and RAI treatment; 3) untreated hypothyroidism that follows surgical or RAI treatment can cause worsening of eye symptoms, hence why it's important to follow the patient closely after these procedures; 4) even with anti-thyroid drug treatment, you may become hypo-thyroid; 5) GD can reappear or get worse after pregnancy

Dr. Jeff Karff, Asst. Professor of Medicine, Tufts University

1) Goal of RAI treatment should render your thyroid non-functioning; 2) stressful life events can precipitate autoimmune thyroid disease; 3) you can flip/flop between over/under active thyroidism (Graves' Disease on the one end, Hashimoto's Disease on the other); 4) a small % of the population is radio-resistant, when when you administer RAI it doesn't effectively render the thyroid gland non-functioning, may require 2nd treatment; 5) no two cases of GD are alike, even in identical twins! and 6) hypothyroid can cause elevated cholesteral, joint pain, heavy periods, decreased hearing, and hair loss.

Dr. Anca Avram, Asst. Professor of Radiology, University of Michigan

1) thyroid hormones are 60% iodine; 2) RAI doses in benign thyroid treatment is not associated with increased risk of cancer and 3) asians tend to h ave milder forms of Graves' Disease, and respond better to anti-thyroid drugs.

Dr. Herbert Benson, Director Emeritus of the Benson-Henry Institute for Mind Body Medicine at Massachusetts General Hospital; Assoc. Professor of Medicine, Harvard Medical School

1) 60-90% of health care visits are stress related; 2) any stressful situation evokes the fight or flight syndrome, where stress can be real or perceived; 3) invoking the relaxation response can directly and positively affect your stress response, inflamation, and apoptosis (aging) and 4) your mind can affect expression of our genes, thus we need to take adequate advantage of this innate capability that lies within us.

I've ran short of time to summarize any more for now.  But do look to Twitter at #GDBoston to find more information, and check out the Facebook page of the Graves' Disease & Thyroid Foundation.

Tune in again tomorrow for Day 2's summary.  And let me know if you have any specific questions you'd like me to ask of the experts while I'm here.

Grave's Disease Treatment: Medication? Radioactive Iodine (RAI)? Or Surgery?

Here is an interesting article that speaks to the option of surgery, which isn't always discussed, as a treatment option in Grave's Disease.

http://www.med.wisc.edu/news-events/news/thyroid-removal-is-safe-and-effective-for-graves-disease/30620