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in reply to: 6years of symptoms finally diagnosed #1070372
I remember the first time I felt "normal". I had been a camp nurse all summer. Iwas outdoors, had very little (extra stress) 800 campers all summer was enough! I had to walk everywhere, up and down hills. I was rested. One day, I squatted down to pick up a piece of litter. That may seem simple, but I did it all in one stride, didn’t miss a step, and immediately started laughing out loud. It was such a good feeling.
Dear Amberlyn,
You didn’t mention if you are on any medication? Do you have Graves’, or something like Hashimotos? Your TSH is somewhat high. The standards of parctice indicate that the best measurements (lab tests) for Graves’ are TSH, Free T3 (FT3) and Free T4 (FT4). Are you seeing an endocrinologist?
How soon is "next month"? If it is early in the month, fine. If it is late in the month, you might request a lab slip and have the bloodwork (including those above)done early.
in reply to: 6years of symptoms finally diagnosed #1070370Dear inor,
What a difficult journey you have had! I may not be able to answer all your questions, but can address the most pressing ones.
When you have RAI, you will not glow in the dark, or emit evil rays of radiation to others. It is considered a good idea to sleep alone the first night or two. With Graves’ we have quite small doses of RAI. In comparison to cancer patients, who have hundreds of units, the range for Graves’ is less than 30. I have never even heard of one of us having that much. It is the higher doses that must be isolated (and then they stay in the hospital).
The RAI will go, via your bloodstream, only to your thyroid. The isotope-131 is specifically targeted to thyroid tissue. It will be excreted through your kindeys in your urine. (The reason cancer patients have so much is that they must seek-and-destroy ANY thyroid tissue that may have metastized to other parts of their body, and it must be destroyed immediately). Our dose "begins" to ablate the thyroid, which will continue to disintegrate itself-over time. That is when the cells are broken down and we sometimes get the flood of thyroid hormone being released into our system.
The only person you probably need to be concerned about on your trip is the small baby. They are usually comforted by putting their head on our shoulder (right nest to the thyroid). We usually advise parents to do things like one parent hold the baby, while the other reads the bedtime story. You can play peek-a-boo, tell stories, but probably not cuddle the baby for that trip. I suppose everyone could change places every couple of hours–we used to do that with our children so that no one could claim favorite seats! Each rest stop could be the signal to "scramble".
I hope your experience with RAI is a good one. You are right–given your experience, it may be a more rocky road than some folks. Stay close in contact with your doctor.
One more caveat: If all your symptoms don’t begin to settle down, it may be that you and your doctor need to be looking elsewhere for diagnosis and treatment of other things.
Have fun on your trip,
in reply to: Crazy or Graves Disease? #1070435I love knitlit’s response! Been there, done that, got the T-shirt, the mug and the bumper sticker. The family has the videos to use for blackmail!
Much of what you are describing IS related to your TSH level. Those levels do not always track with how we are feeling – REACTING is actually a better word. Things just seem to be "happening" rather than us really planning what we are saying, doing, etc. Depression is fairly common as well. From what I know, Graves’ patients seem to respond well to the SSRI’s anti-depressants.
YOU ARE NOT CRAZY, but you may benefit greatly from talking to someone who is knowledgable about the hormonal interactions that you are experiencing.
in reply to: Levothyroxine and Soy #1070449Yes, excess soy can hamper absorption. The question actually came up a few years ago. The manufactures of the replacement hormone pointed out that infants on soy formula (meaning drinking it all the time) would have problems absorbing thyroid hormone.
I think the key word here is "excess". If you are taking your horones by themselves and away from soy intake, you should be fine. If you are a committed vegetarian who is using a LOT of soy, tell your doctor so that the two of you can come up with a plan.
in reply to: Futhering Education and Rules of Disability #1070424Do you have an attorney who is helping you with the application process? It would seen that is the person to ask.
in reply to: Confusing Test Results #1070398Dear Klihnn,
Sorry, but there is no way we can interprete tests for you. We are not doctors. WE don’t have all the facts, lab values, case history and a multitude of other data.
We can identify with how confusing it is to get those sheets of papers with numbers and funny names and initials all over the place. Especially now, when you are so new to all of this.
The more complicated your blood results, the more complicated your "case". It is possible, but unusual, to have both Graves’ and Hashimotos. In that case, the thyroid is treated for its overactivity, and then thyroid replacements treats the Hashimoto’s. There is Hashi-toxicosis, in which the thyroid is NOT treated, but managed until the hyper-ness is cooled down.
in reply to: What took me so long? #1074510We have some great information on surgery. Go to the "contact us" button on the Home Page and ask that it be sent to you. I can’t do it from here.
Sorry, not a clue! It may be just an "idiosyncratic" thing, and it may NOT be related to your Graves’. If it is itchy, a dermatologist (or your family MD) can probably give you something for it.
Hi Hubb,
Well, Ski has done her usual great job, so I will just put in about 1.78 cents!
NOW might not be the best time to start Tapezole if you are fighting off an infection. Your doctor will know.
The large muscle weakness is classic. One doctor I know makes people squat in the middle of the floor, and to stand up from that position. Others are kinder, requiring only that a peron rise from a chair with "no hands"!
There is a condition known as "sub-clinical" hyperthyroidism. That basically means having syptoms before the dramatic hormone level changes.
As long as you are visiting reputable sites, your information should NOT contradict itself as you go from site to site. There IS such a thing as information overload.
Questions for doctors: Write them all down, wait a while, and then try to group them. Usually the answer for a group will answer most of the individual ones. I guess I am saying make an old-fashioned OUTLINE.
Best wishes,
in reply to: Graves’ Disease & Growth Hormone Deficiency #1070485I am not aware of a connection with adults and growth hormone deficiency/thyroid status. You had RAI 13 years ago? You might be able to find someone to assist you by visiting http://www.AACE.com That is the American Academy of Clinical Endocrinologists. They can be searched by specialty, and "Growth Disorders" is the one you will be looking for, in addition to "Thyroid Disorders".
in reply to: Wouldn’t it be cool if….. #1070478There actually are some "home testing" kits. They are not nearly sensitive enough for us. They can measure relatively high TSH numbers.
in reply to: Armour/Thyrolar?? Any advisement? #1070546There are some studies that show an improvement in both the way we feel and think, and in our bloodwork when there is a small supplement of T3 (Armour is only T3, while Thyrolar is both T3 and T4) to your regular dose of T4.
The ground rules:
1. If the medication does NOTHING, have it monitored,perhaps increased. If it still does nothing, it is probably not what you need, so STOP taking it.
2. If the medication makes you feel HYPER (increased tremors, anxiety, heart rate, confusion), have it monitored, lowered. If it still makes you HYPER, STOP taking it.
3. If you FEEL BETTER, have it monitored, and KEEP TAKING IT.
Then check with your doctor about your bone density, cardiac history and anything else that the extra T3 may influence.
Note:
Sometimes the improvement is short-lived. In that case, go back to Rule # 1.in reply to: How to find a doctor #1070481The Lawson Wilkes Pediatric Endocrine Society is "somewhere" on the Internet. You also might try the American Thyroid Association – http://www.thyroid.org. Tell them we suggested that you contact them Ellen Brightly can be contacted through the NGDF e-mail (it’s under "contact us") on the Home Page. Please let me know if none of those work out. What will not help is 1-800-THYROID
in reply to: im so tired of my mom saying… #1070529I am so sorry to hear this–from so many of you. I always hear about families not understanding….! It is SO hard to continue to try to convince people, and add to that the fact that we get totally tired of talking about it anyway!
If you can come to the conference, we focus on this a great deal. If you can get your mother (or any family member) to come, there are workshops for only them. They get a chance to verbalize, and then hear from others (who DO know)!
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