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in reply to: 3 year old with graves #1177599

Hi, everything that I have read, and heard presented in meetings, says that RAI is not the right choice for children. And that surgery, a thyroidectomy, is the right choice.

As you clearly know, we are not doctors here, but I would try very hard to ask that you have a consult with a thyroid surgeon, and that you take her to a children’s hospital. Caregivers in regular hospitals that care for adults, are not at all familiar with care for children. Can you make this happen?

AND
I suggest you be very proactive with your endocrinologist (remember, you are concerned about the welfare and safety of your daughter, not if he will be made at you, or seem defensive. Ask him:
1. you want to explore surgery at a children’s hospital
2. you are concerned about the higher doses he proposes, for what you have learned, is those are too high a level of medication for a 3 year old. Can you do any of this?
Shirley

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in reply to: The treatment options kind of stink. :) #1180910

Hi Kaity,
Here are just a couple of thoughts for you to consider. And answers to your specific questions.
1. Please get a copy of your labs. On the copy, there should be the range listed for each test. For instance, for the TSH, my last defines the normal range is between .4-4 There are probably other results, and when you see them, they also indicate that you are hyper.

2. .006, your result, means, in simple terms, that you have more, or too much, thyroid hormone being produced than normal. It means that the thyroid stimulating hormone (TSH) is suppressed.

It get confusing, regarding the numbers, for a tiny low number, means HYPERthroidism, or too much thyroid hormone. The symptoms are weight loss, not feeling like yourself, big appetite, fast heart rate, frequently a tremor if you hold your hands out in front of you, your hands shake a little bit, In other words, everything about us is REVVED UP!

In HYPOthyroidism, or too MUCH thyroid hormone for our bodies. we become sluggish, constipated, no energy, want to sleep all the time or a lot, weight gain, to name a few. The number for the TSH is usually high. This whole deal about the numbers in the labs results is very confusing, for it is not what we are used to.

I am not sure how you felt, how you feel now, and if you were/were not on an ATD (anti thyroid drug.) How do you feel now?

Beta blockers.
The beta blocker helps our cardiac status, and slows a rapid heart rate. Rapid means over 100/minute, but 90 is also pretty high.
The medical definition of tachycardia (fast heart rate) is 100 beats/minute or over. The definition of bradycardia (slow heart rate) is below 60 beats/minute. The name for a “regular, normal” heart rate is “normal sinus rhythm. IT is 60-80 beats/minute.
The beta blockers are specifically for cardiac symptoms, and NOT for Graves’.

Kalty wrote:

Do they test over time to see if it changes? Or do they assume that the level it is today is the level it will always be?

The level today is not what it will always be. Yes, there are tests over time and it does change, especially when you and the doctors are trying to determine the amount of ATD and or thyroid hormone you should be receiving, based a lot on your symptoms and the labs.

Kalty wrote:

Kalty
today 04:35 AM
What is considered very high? The TSH test result was .006. They didn’t tell me what the other tests were for or what the results were, except that they indicated hyper.

Well, as mentioned above, your .006 means that you have a HIGH (too much) amount of thyroid hormone flying around your body. And the smaller the number, the more hyper we probably feel.

Kalty, Graves’ is HARD! IT is tough to have, and it really messes up our lives. We all hate it. But most people end up choosing one of the treatments, and finally get regulated, begin to feel like their normal selves again. It is a struggle. Sorry you have to join the club.
This is a good website for you, I think. You will have a lot of new friends here, and you will learn stuff.
Shirley

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in reply to: Hi Friends….been a while….an update… #1180848

Hi Gabe, old and new friend!!!
I will try to write more tomorrow, I am so tired, I can barely SEE!
Speaking of seeing, I have 6 up prisms in both lens’. and now an additional Fresnel prism on one lens. I have had a new onset of double vision in the morning, especially, am pretty devastated that after all the surgeries I have had, some train wrecks and some wonderful that my eyes still rule my life.
I have “fit-over” sunglasses, I am still very photo phobic, and wear a visor for the glare.
Yep, the TED thing has been the worst and life changing in a bad way for me
I have thought of you often, and it is so so nice to see your name again!!!!

THe double vision is terrible. Just terrible. So glad you have conquered most of the other big issues you had.
I will write more tomorrow or the next day.
Shirley

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in reply to: Another Husband #1180781

Rick, PLEASE continue to lurk. Please continue to vent. We are you friends and support people. Really mean that!
Some other husbands have posted here, I will try to recall who they are. THis is really, really tough for you. Might be helpful for you to copy and past the posts you’d like your daughter to see, if there are any.
Shirley

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in reply to: Switched meds and feel awful :( #1180730

YAY!!! Nice work.
Shirley

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in reply to: My TT Journey 8/27/13 #1180783

really good thoughts are coming your way! This will really help you. I had a TT, and there are some great posts about the recent experience of others.
Read the beginning of adenure’s post (alexis) or Sueandzoo.

The narratives are very helpful and reassuring. This will be a short post tonight, but you will hear from others!
Glad you found us!
Shirley

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in reply to: Biopsy this Monday. Completely overwhelmed…. #1180747

HI, I think you thinking is logical and rational. TAke it one step at a time. I suggest you ask and beg for them to contact you with the results as fast as possible. I know for a fact that the path labs can get these done rather quickly, and sometimes the docs sit on the results. Tell him to CALL you if you have to wait for an appt

Lots and lots of people have nodules. Good for YOU insisting on the labs!!! smart girl.

As was mentioned, it is possible that you may not have Graves, that it the nodules that are cranking out extra hormone.

Ski had excellent points for you to consider, as she always does.

Just a thought if it becomes relevant. I chose surgery, great choice, was in the baby making business at that time, went super well, and I’d chose it again in a heartbeat. If you have Graves, you already realize that RAI is not the choice you want, since you are thinking of getting pregnant again. That is a really long haul in the waiting category.
We will all be looking forward to hearing your next report. So glad you wrote.
Shirley

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in reply to: checking in and being thankful #1180760

hi, GENUINE RUBY!!!! SO SO SO SO SO SO NICE TO HEAR FROM YOU! of course I remember you well, and you contributed so much the forum. It means a lot to the newbies when you check back in. I have never really left the board, cause I kinda like it, feel I can contribute, especially with miserable TED.
Super nice to see your name again!
Shirley

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in reply to: predisone #1180772

Yes. It is so frustrating. Seraquil is generally used only for a specific diagnosis. Xanax can be a problem on-going. And only you can decided if the Lexapro is helping. Sure be nice if you can find a doc to discuss ALL your meds and be nice to you. Hard to differentiate the anxiety part, may still be the prednisone. ANY way you can get back to the doc who prescribed them all?

Call and say none are helping, that you feel worse, and you are concerned.
Don’t know if will help you at all. Sometimes you need to scare the person at the front desk, say you need an urgent appointment, that usually works.
Shirley

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in reply to: predisone #1180771

Yes. It is so frustrating. Seraquil is generally used only for a specific diagnosis. Xanax can be a problem on-going. And only you can decided if the Lexapro is helping. Sure be nice if you can find a doc to discuss ALL your meds and be nice to you. Hard to differentiate the anxiety part, may still be the prednisone. ANY way you can get back to the doc who prescribed them all?

Call and say none are helping, that you feel worse, and you are concerned.
Don’t know if will help you at all. Sometimes you need to scare the person at the front desk, say you need an urgent appointment, that usually works.
Shirley

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in reply to: Help! My 33 yr old daugter recently diagnosed. #1180744

Hi Mom,
From your post, I am assuming that she is on anti=thyroid medication now. Probably methimazole. Is this correct? If this is correct, she WILL begin to feel better, for the name of this category of meds (there are a couple other ones)
“anti-thyroid” helps block the insane over production of thyroid hormone.

As Kimberly described, there are three treatments. So review her post again.
Alexis provided some good information about her experience.

When we are first diagnosed with Graves’, like your daughter, ALL OF US are hyperthyroid. Then we take anti thyroid(called ATD’s) meds. To feel better, to keep us safe, to avoid any possibility of thyroid storm (which is rare, but can occur with UNTREATED hyperthyroidism,) So, again, that is why ALL OF US begin with the ATD’S.

THEN we have three choices, usually up to us. We choose based on our own personal choices. There are rare times when there is a compelling reason to have surgery, for instance, if there is something seen on the scan that needs a biopsy to confirm.

So I have a few big messages for your daughter.

1. You feel better because you are on an anti thyroid medication. It is protecting you. Do not stop taking it. You will NOT be ok if you stop taking it. Thyroid storm is a possibility ONLY if you leave your Graves’ untreated. THIS IS NOT AN OPTION.

No matter what we choose, we begin with ATD’s. You have TIME to decide what you want to do, and to talk to other docs, read this site. Nothing is an emergency, except if decided to stop taking your ATD’s and that is a poor decision that I imagine you won’t do.

2. You have every right in the world to resist radiation. The treatment is almost always our choice. Some of us resist radiation. Some of us want nothing to do with surgery. Some of us want to continue on ATD’s, and see if that keeps us in a healthy state. There are varying opinions on how long we can take ATD’s without proceeding to radiation or surgery at some point. But the choice is there. Kimberly, our facilitator has been on ATD’s for several years. I had surgery. Others on the site, RAI.
Shirley

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in reply to: Switched meds and feel awful :( #1180728

I agree with jaqueinquotation. 100% .
REally helpful to hear from her “cause she is in Canada, taking same drug and had a similar experience. NOt quite like yours.

In the US, I have learned to remind (again and again!) my endo to write BRAND ONLY, or NO SUBSTITUTIONS, on the RX.

Seems to me that Eltroxin is your best thryoid drug, so I encourage you to insist on having it. I don’t know why on earth your GP would make that switch. You know how you feel, and Graves’ is SUCH a frustrating illness.

I take Synthroid, and it is ok for me. But you were doing beautiful with Eltroxin. Why mess with a good thing? I am so so sorry.

Is there any way you can just call that office, say you feel terrible on Synthroid, and you want to resume your original Eltroxin dose, and continue on Eltroxin.

Can you make this happen.

Usually the docs don’t care. I am hoping yours doesn’t either. Or, if you have the capability in your health care system, call the endo, tell him/her what happened.

Shirley

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in reply to: My baby girl #1180178

Hi, Shirley here.
You are NOT being overreactive! You are being a wonderful parent/mom/advocate for your sweet little girl. Good that she is seeing cardiologist and having labs…doing all the right things to help her…
Shirley

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in reply to: My baby girl #1180177

Hi, Shirley here.
You are NOT being overreactive! You are being a wonderful parent/mom/advocate for your sweet little girl. Good that she is seeing cardiologist and having labs…doing all the right things to help her…
Shirley

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in reply to: Need info about IV steroid therapy #1175890

I sympathize. Prednisone does that to you, and it is NOT fun. I hate it.
Hard for me to say anything nice about it. Except that this too, will end!
Shirley

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