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in reply to: New to Graves – struggling with decision – drugs or RAI #1171087

Just a brief comment for oberon.
I’d like to add to Kimberly’s comment about seeing an opthalmologist who is familiar with TED. My word of caution is that the docs who have the equipment, and the additional tests, to watch the optic nerve carefully, are, in my opinion, neuro opthalmologists. The wiggling finger that eye docs do is not adequate to test visual fields. The eye docs who are familiar with TED, do not have the same tests to check for pressure on the optic nerve. It is possible the might SEE it if they take a look, but you want to know if there are issues long before that time. The color charts, plus the Humphrey visual field machine is the way to really know. Anyway, that is my experience and opinion.
Shirley
**I suggest you call (if your insurances allows it) and refer yourself to an eye doc familiar with TED. I imagine this is driven by your insurance, but I rarely need a referral for a specialty. I just call for an appointment. I suggest that you perform due diligence first, do everything you can to find out an eye doc who is familiar with TEd, as Kimberly said.
S

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in reply to: Wife want divorce and family in shambles #1170267

HI.
Just a thought from a wife who was toxic to the max (hyper) and had a small baby. You know, at some point, we (and I, at that time) need to be accountable to ourselves, our husband and our children. Yes, there is a time we are kinda crazy. But we really know it. We want to be “fixed,” cured and get back to our normal lives.

There is a possibility that, no matter how wonderful your marriage was, it may be irretrievable. I have no idea. At some point, the “disease” can be an excuse.
There are some people who have enjoyed their hyper state, and want to stay that way. Is your wife one of them? I have no idea. But, speaking from her place, there a point in all of this where she should be working with you, not against you not getting an apartment on her own, and not seeing another man. That is simply not a way for you to live your life. You deserve more.

If it ends up that you end up back together and it is working, then all that I said above, does not apply. But if this goes on forever, I encourage you to think of yourself, the rest of your life, and your kids.
Hard to hear (or read) maybe. But put in the hopper with all the other options you have. And YOU have them.
Shirley, former Graves’ wife, who wanted to get better more than anything else in the world, and hated the hyper crazy state I was in.

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in reply to: Finally good numbers after 5+ years treatment #1170855

Hi, I am happy to hear your good news. If this continues, and she moves toward remission, I am very happy for both of you. Do keep in touch, and if Graves’ continues to be present in the active form of hyper or hypo, do not be discouraged, or feel that you have “failed.” You have both worked hard at this, I know.
I am compelled to say that there are a lot of people with Graves’ who do have a good attitude, have tried to relieve stress, and have good attitudes, who still battle Graves’ and all that it does to impact our lives. All of the attributes you mentioned, are certainly good things to have in your life, that is for sure.
But you can have them, and still be sick. I am sure you understand.
Shirley

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in reply to: Orbital Decompression Surgery Question #1170975

Hi Katherine, I don’t think I had the button test, or if I did, I don’t recognize it from the description you gave.

So glad you will see the neuro/eye doc. But in the meantime, be sure to be aware of visual changes, especially decrease in clarity, or the color red very changed. Having said this, sometimes these changes are so gradual, that you don’t really notice them yourself until you get a big wake up call. In my own case, I had seen the neuro/eye doc, had Humphrey visual fields. At the visit, he said for me to let me now if I felt that my visual fields were not full, that the testing indicated to him that there was a possibility of pressure on the optic nerve. Also told me that I should see the oculofacial surgeon. He scheduled another visit in 2 weeks.

Sooooo-I really though I was seeing fine-until my car accident. I was on my way to that 2nd appointment for Humphrey visual fields when I had the accident. Got to the doc, had the visual fields, and the test showed that my vision was very decreased on the left. Then I realized that although I had looked to my left, I had a left field cut (decreased peripheral vision) on that side. And I really did not realize myself that my visual fields were not full.
The point of my story, is that I began to lose my vision and was really NOT aware of it. Very strange.
What a nice post from freflutrb. Sounds like she has been through a lot of hell.
I hope she reads this post, I think she is familiar with the fact that her double vision can be corrected by strabismus surgery. Glad she got Social Security, that is quite an accomplishment.

Having and OD is not bad at all. You do need someone to help you for a few days, and you need to keep your HOB up. (head of bed) When you get ready, read my posts about my OD, I documented it day by day for a while.
Shirley

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in reply to: Cancer Risks of Radioactive Iodine Treatment #1171063

I can say that my personal experience is that I had extreme high doses for breast cancer sitting on my chest wall on both breasts (different years.)
Both occurred over 20 years ago. I don’t know how to compare that kind of radiation with RAI, though. I have been told that I have had my lifetime exposure of radiation, though.
Shirley

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in reply to: Tapazole not working now what?!!! #1170948

I will read the study Kimberly mentioned again to see if I missed anything that would address my reservations about RAI and TED. I’d like to preface this with the fact that I ended up with severe TED, which occurred many decades after I have Graves’. I chose surgery.

My concern is that, the definition of mild TED symptoms seems dependent on the length of time since the symptoms of TED and the diagnosis. My own experience is that I had scratchy eyes, red eyes, dry eyes and slight sensitivity to light at least two years before my diagnosis of TED, and neither eye docs nor I thought a thing about it, except to use eye drops and wear sun glasses.

Following my concern, is that as TED continued to get worse, I did have steroids, both orally and IV. The steroids diminished the acute double vision for about two weeks. Then the disease process continued with a vengeance.
So, I will be interested in the long term studies, which I am not sure exist at this time, if after RAI, TED will continue its’ own schedule, and there could be a possibility that RAI could exacerbate it. It seems to me, other than paying more attention to the relationship of TED and RAI, the best way to reach a conclusion would be long term studies.

So my bias is present, that if I were making this decision today, because of my experience with TED, I would be concerned of any possibility that the combination of TED and RAI might exacerbate my TED after the fact. There is not reason or science for this feeling. It comes under the fact that we usually do have three choices for treatment, and the fact that RAI is “acceptable” treatment for people with TED, would not be good enough for me.
Back to Kimberly’s statement after her references, there are risks and benefits to each of the treatment.
Shirley

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in reply to: Iodine supplements? #1171058

yep, I do think you are hypo! The feeling cold is quite pervasive, and I was (and to a mild extent, still am) the person who has the most clothes on. I love my polar tech micro fleece robe! It is tempting to walk out the door and to the store, wearing it. So nice to hear from you. How old are your kids? ARe you working full time? My daughter lives in So. Calif., too, near Pasadena.
Shirley

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in reply to: Graves disease #1171047

Yay, Tiffany!! You will be glad. Good job!
Shirley

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in reply to: I can’t stop yelling…rant. Sorry. #1171034

Hi Jenn,
Darn! Not ok to have a traumatic blood draw. I have done (and had) a million of them. Every now and then you get a stinker. A suggestion that I tell EVERYONE is to drink lots of water before you have labs drawn. Especially if the first thing in the day, for we are depleted of volume after sleeping all night. If you are having a fasting lab, and that is usually for eating food before a fasting blood sugar. But you can still drink water! with glucose.
GOOD JOB with your family! That is just great! Now you are not alone, at home with this, and you sure have a lot of new friends here!
(: Time to get your labs, though.
Shirley

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in reply to: Diagnosed with Graves This Week #1170992

I’d be sure to call your endo, get some labs before you see him. Just as Kimberly said.
It is good that your eyes are being checked carefully.
Shirley

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in reply to: Wife want divorce and family in shambles #1170265

Hi, I am sending a friendly and supportive world to you and your kids. This has been a very rough ride. I realize that you have gotten solid advice about meds, etc. and I am compelled to comment that we ALL realize that it is not as simple as you telling your wife ANYTHING about what she should/not do with her meds. I don’t know if you will have any success with this tactic, but maybe you can tell her it scares you for her health if she stops the beta blocker. That maybe she should check with her endo. Because Kimberly is right. An abrupt discontinuing of a med, some more than others, can be big trouble.

It is possible that at some point you may need to move on. And yes, you have done everything you could possibly do to support your wife and your children. Plus having a job, and the responsibilities involved in running a household.
I KNOW your world will settle down and get better. Just not sure how it will turn out.
Shirley

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in reply to: Iodine supplements? #1171056

Hi, I am glad you plan to check with your endo. Good plan. And also check about the supplements as you plan to do.
But I am compelled to wonder why the new family doc prescribed 1000mcg/day. I am led to wonder if you should really question if you should be going to her. Seems that endocrinology is not her strong suit. She might be fine for other stuff.

I am providing for you, the following information straight from the NIH (National Institutes of Health) website. The normal amount for adult females is 150mcg We get our iodine from dairy, cheese, meat and iodized salt. To me it sounds very concerning for you to take almost seven times what is required and recommended. Again, I am very glad you are going to check this out with your endo.
And yes, when we are super hyper, there are a VERY FEW foods that have high concentrations of iodine, which is better to avoid when we are hyper. Some fish, kelp should not be eaten in large quantities.

Here’s the reference:
Table 1 lists the current RDAs for iodine [2]. For infants from birth to 12 months, the FNB established an AI for iodine that is equivalent to the mean intake of iodine in healthy, breastfed infants in the United States.
Table 1: Recommended Dietary Allowances (RDAs) for Iodine [2]
Age Male Female Pregnancy Lactation
Birth to 6 months 110 mcg* 110 mcg*
7–12 months 130 mcg* 130 mcg*
1–3 years 90 mcg 90 mcg
4–8 years 90 mcg 90 mcg
9–13 years 120 mcg 120 mcg
14–18 years 150 mcg 150 mcg 220 mcg 290 mcg
19+ years 150 mcg 150 mcg 220 mcg 290 mcg
* Adequate Intake (AI)
The World Health Organization (WHO), United Nations Children’s Fund (UNICEF), and the International Council for the Control of Iodine Deficiency Disorders (ICCIDD) recommend a slightly higher iodine intake for pregnant women of 250 mcg per day [3,7].
Sources of Iodine
Food
Seaweed (such as kelp, nori, kombu, and wakame) is one of the best food sources of iodine, but it is highly variable in its content (Table 2) [5]. Other good sources include seafood, dairy products (partly due to the use of iodine feed supplements and iodophor sanitizing agents in the dairy industry [8]), grain products, and eggs. Dairy products, especially milk, and grain products are the major contributors of iodine to the American diet [9]. Iodine is also present in human breast milk [2,5] and infant formulas.

Regarding selenium, there are A FEW studies that taking a small dose of selenium might decrease the symptoms and severity of TED (thyroid eye disease.) But not Graves’.

I am wondering how you yourself feel? Do you have the symptoms of feeling hypo? If so, I think you will begin to feel better (if you are feeling hypo.)
Shirley, just another patient, not a doctor (:

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in reply to: Life changes and Graves’ #1171004

Hi Julie,
I am in an airport, getting ready to get on a plane to Sun Valley, but I have a few minutes before we board. If i don’t get all my thoughts “said,” I write again later today or tomorrow.

Yes, over the years, I have had my Synthroid adjusted up and down. It is a fine tuning of:
-how I am feeling, which, on occasion, prompts me to call to ask for labs. This is probably the reason most changes have been made. They are usually little tweaks up or down.

By “how I feel,” examples are:
-felt sluggish, not like myself, super constipated, not wanting to eat because I felt constipated, cold all the time.
-or, I began to feel more anxious, without any specific reason of anything different happening in my life. It can be as simple as feeling angry and impatient while waiting for the bus, thinking it was late.

So, aside from having labs once a year or so, I call and ask for labs if I feel “different.”

The following paragraph does not exactly address your situation right now, but it kinda does. I hope it is helpful in at least an academic way. I apologize in advance if it is too long and not exactly relevant to your-but it kinda is, in a way.

And the big point I want to make is, that our endo should listen very carefully to our report of how we are feeling, and have the utmost respect that we have learned to know our own bodies pretty darn well. I think the following description of my experience is most likely an exception, but all our experiences with endos can be helpful at some time in our lives. One development that occurred in my situation, is that there was a period of time when I felt GREAT, lots of energy, happy with everything,but also sleeping less, working harder at work, and had a voracious appetite. My TSH was slightly more suppressed, and my T4 was elevating just a slight bit over around 9 months. Probably in this situation, my Synthroid should have been reduced a bit. I was on 150 mcg. So she kept me at that dose for several years, and I continued to love being just a bit hyper. She said, “well, if you like how you are feeling now, let’s just keep you there!” I was like this for about 10 years with this endo. My primary care doc was continually concerned about this, for she said too much thyroxine running around our bodies increased the incidence of cardiac complications, specifically atrial fibrillation, and increases the possibility for osteopenia and osteoporosis.
End of story, I switched endos, and he said he really would like to work with me to decrease Synthroid, very slowly and incrementally, for the reasons stated above. We did that over almost 2 years, changing about every 4 months. The result? I got very hyPO. The outcome? Now my diagnosis is iatrogenic (definition is physician caused or induced by medical or pharmaceutical treatment) hyperthyroidism . This situation teaches us a couple things. Long time hyperthryoidism is detrimental, yet at the same time, and docs need to use their knowledge combined with labs and symptoms to make good decisions. THe outcome is that I am on more Synthroid than docs prefer for me, but if I take any less, I am thrown into debilitating hypo state.

To answer your questions, aside from the rambling description above, over my lifetime, my Synthroid need and symptoms changed during and after menopause, and before that, during a very stressful year during a divorce many years ago. I love my new endo, and feel that he respects and understands me. I always take a new lab slip with me after I see him, and get labs before the next visit. Unfortunately, once we are euthyroid, it is not the same forever, and we can never forget that we have this dumb condition.
I think it is good that the end result of your visit is that you will decrease your Synthroid dose, based on the TREND of your labs, plus how you are feeling. I also think that the fact that you took Synthroid before your labs has nothing to do with anything. It does sound like you are doing this, but always take your supplement at approximately the same time every day, and avoid the supplements for 4 hours. Clearly, you are doing that.

The factors that can mess up lab results all relate to inconsistency of taking it, plus the supplements plus eating. True confession time for me, for I take mine first thing in the morning with a full glass of water,but I always have my cup of coffee with a little cream in it shy of 1/2 hour. At least I am consistent.

I hope you notice a difference in a good way with the reduction in your dose.
It takes a while. For me, I usually see a difference in about a month, maybe a bit more. Before that, I can’t really be sure.
Plane was late, so I got to finish this.
Shirley

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in reply to: Getting Labs Done #1171021

Adenur, Do you know if you are also having a CBC and liver function labs at the same time as your other thyroid labs? I am more familiar with the way Trudy is having her labs, and this makes a lot of sense, because you can change how you feel pretty rapidly when beginning the ATD’s. I believe it is also a standard of care to do the two labs I mentioned above, because the WBC (white count) and liver studies need to be watched when beginning ATD’s. I am patient, not a doc. But I think these are very good questions for you to ask your doc. Tell her you’ve been doing some reading, or simply ask the questions This is pretty common knowledge.
The antibody tests are not done frequently, and sometimes, never again.
Get it discussed pretty soon, so don’t worry about it.
Shirley

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in reply to: What to ask surgeon re thyroidectomy? #1169962

good job. be at peace with yourself. You are not closing a door forever. But making a decision i think you have already made. Plenty of time!
Good references. I wrote to my friend in France, but she is on a holiday until 4.11, not answering emails. Good for her!
Shirley

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