[Kalty September 3, 2013 at 4:15 pm Post count: 23]

#1060168

I looked through the treatment options and, bot, was that a downer. No matter what I do, I’ll be at risk of horrible infection or end up hypo after radiation or surgery. I take metoprolol now and feel better.

I might decide that feeling better is good enough, since it sounds like doing anything is no better. Have any of you chosen to live with it and just treat symptoms?

[meemeej September 3, 2013 at 8:29 pm Post count: 13]

#1180905

hi,

you are not alone… ive looked over the treatment options and quite frankly they scare the heck outta me… i am not ready to choose either rai or surgery. i was just diagnosed a month ago and my endo is trying to get me 2 do rai…ive just come to terms with the fact i have gd im still trying to wrap my head around how my life has changed. so i told her i needed to think about it. and she wants to see me bck in 3 months with my answer. i told her i didnt want to do it yet and stick to the meds but she was really pushy…but u have to make the right choice for u…i didnt know it would be this hard or this serious.

-MeeMee-

[Raspberry September 4, 2013 at 12:55 am Post count: 273]

#1180906

Kalty and Meemeej, I felt the same way when I first really understood my options too. It’s unfortunate that there aren’t better options, but you truly have to choose one. Simply taking a beta-blocker masks the symptoms but the high thyroid hormone is still doing harm to your body by wasting your muscles including your heart, weakening your bones, and generally a whole bunch of other bad stuff. If you are only very slightly hyper I have heard that some endos will do a watch and wait period in the hopes that things simmer down on their own. If very hyper though…you gotta choose.

[Kalty September 4, 2013 at 4:32 am Post count: 23]

#1180907

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.

[Kalty September 4, 2013 at 4:35 am Post count: 23]

#1180908

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.

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?

[Ellen_BModerator September 4, 2013 at 8:46 am Post count: 100]

#1180909

Hi,
Were you on antityroid drugs? If you were I take it you do not like the idea of going back on the antithyroid drugs. Weighing the risk and benefits of each treatment is not easy. When is just being on a beta blocker an option? Your doctor will be the best one to answer that question.
I do not know if you are interested in looking at the American Thyroid Association Guidelines for Management of Hyperthyroidism and Other Causes of Thyrotoxicosis. The link to those guidelines is: http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/THY_2010_0417.pdf [thyroidguidelines.net]
The guidelines were drawn up a while ago (in 2011). The article is not easy reading.

In the article you will find a chart on the treatment of subclinical hyperthyroidism.
Your doctor will have to tell you whether you are hyperthyroid or just subclinical hyperthyroid. If you are truely hyperthyroid none of the information may apply to you.

What is interesting to me is the chart dealing with the subject of when to treat subclinical hyperthyroidism. In the chart patients are lumped into two different groups—one group with a TSH below 0.1 and another group with a TSH between 0.1 and 0.5.
(By the way the lower limit of the normal range for this chart is 0.5mU/L)
The chart indicates patients are more likely to be treated when the TSH is below 0.1 than when it is between 0.1 and 0.5.
When figuring out whether to treat or not to treat, other factors such as age and underlying conditions must be considered as well.
In the less than 0.1 TSH group the over 65 people are more likely to be treated. In the same group (less than 0.1) those who are under 65 with certain conditions such as hyperthyroid symptoms, heart conditions and osteoporosis are also likely to be treated. In the less than 0.1 group if one is under 65 and has no symptoms treatment is only considered. However if you are in the group with TSH between 0.1 and 0.5 and you are under 65 and asymptomatic no treatment is indicated.

How worried you should be about your TSH numbers your doctor should be able to tell you. He will also know all the factors that should be considered—including age and underlying conditions.
It would be nice if questions on the subject were simple and had simple answers. Why is life always complicated!

As you move forward please continue to let us know how you are doing.
I wish you the very best.

Ellen

[snelsen September 4, 2013 at 2:57 pm Post count: 1909]

#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

[Kalty September 5, 2013 at 5:42 am Post count: 23]

#1180911

Thanks, everyone.

What makes no sense to me is that some symptoms don’t match. I’ve never had trouble sleeping. In fact, I need naps all day long after sleeping 10 hours. Also, I’ve gained weight not lost.

This doc is going to have a hard time convincing me that the thyroid level is what is really wrong. I wonder if I’ve always had this level, since I don’t know if it’s ever been checked before.

The same heart palpitations were written off years ago (25 years ago) as nothing, after wearing a monitor. So blaming the thyroid level now doesn’t carry much weight for me.

I guess all this time between the blood test and the appointment is good after all. It’s enough the go through the history and really remember.

This poor doc doesn’t know what she’s in for.

I wonder how often higher levels are someone’s normal.

It’s scary to think that so much is done because of a number on a test. Really scary. Do they try to find other causes before yanking the thyroid? Do they really just take that number and assume that it’s the problem?

[meemeej September 5, 2013 at 6:39 am Post count: 13]

#1180912

Have you had an uptake scan of your thyroid? And if so if it was enlarge and or had any nodules on it then you get sent to an endo doc and he or she looks over the results of blood work and the uptake scan to confirm the diagnoses. Ive heard of ppl being misdiagnosed with all kinds of different things, thats why it is inportant that they dont just go off of just one test. hope this helps and plzz keep us posted on how you are doing. hope you feel better soon..

-MeeMee-
Sleepless In Colorado

Diagnosed: Graves disease 8/6/13

[Kalty September 5, 2013 at 6:45 am Post count: 23]

#1180913

I did have the scan. They said no nodules. Didn’t say it was enlarged.

How will they know what my normal level is, if they haven’t ever checked it?

I will definitely get a 2nd opinion (maybe a 3rd, too) before I do anything. The appointment was scheduled a month out, so it can’t be an emergency.

[meemeej September 5, 2013 at 6:53 am Post count: 13]

#1180914

well from what i understand by some of the research ive done is that there is a range that your they go off of when they check your t3 t4 and tsh and if you t3 and t4 are high then your thyroid is probably over active but if there is another reason for your thyroid to be over active you are still hyper. did you also have an ultrasound of your thyroid? and do you have a goiter? and its alway good to get a second opinion i know i did just to make sure.

_MeeMee_
Sleepless in colorado

[Kalty September 5, 2013 at 7:17 am Post count: 23]

#1180915

No goiter. I don’t like these mystery conditions that get blamed on a faulty immune system. It seems like today’s version of blaming anything they couldn’t explain on a virus. It seems like most of the unexplained things from yesterday are lumped into the auto-immune disease basket today.

If we could fast forward 100 years and see…

[ibminlou2 September 5, 2013 at 9:40 am Post count: 21]

#1180916

Hi Kalty,

I read through you stuff, and with out knowing your lab numbers, I will say, I know how you feel. Through most of my Hyper journey, my symptoms did not perfectly line up with the hyper set. Yes, I had hair loss, shaking hands and a rapid pulse, but I was also sluggish, exhausted and unable to sleep.

I originally got a Graves’ disease diagnosis, and I just found out (post Op), that it was incorrect. Through my journey I also went from Hyper to Hypo on my labs, then back to Hyper while never escaping my Hyper symptoms.

My second opinion endo was my lifesaver. My first endo was content leaving me on anti thyroid drugs for 3-6 months at a time with out labs, something I wouldn’t suggest doing. My thyroid was also covered with nodules and got inflamed randomly. When I went in for my biopsy, they actually ended up also draining a cyst on my thyroid.

I had a TT last week (detailed in a nother thread). My levels haven’t bottomed out by any means, but I feel a sense of relief. And, fortunately for me, my entire thyroid is gone (there was cancer growing on it).

Keep on getting your labs, documenting your dose and symptoms and checking back in here.

We’re all here to help!

[Raspberry September 5, 2013 at 11:08 am Post count: 273]

#1180917

Hi Kalty, have you had any antibody tests done? These are considered to be definitive tests for Graves – it is not guesswork if these tests are positive and they say you’ve got it. There are two tests either of which will work
1) TSI (thyroid stimulating immunoglobin) this measure the percentage of excess stimulation that is occurring to your thyroid by the antibodies
2) TRab (thyroid receptor antibodies) this includes a total count of all Graves antibodies which includes stimulating, blocking, and neutral types. For the most part everyone is concerned only about the stimulating antibodies because that’s what drives up the thyroid hormone.

Normal people have none of these antibodies or very very very low values. Good luck getting your answers!

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