[Kimberly]

#1065934

Hi Dave – Wow, sounds like you have a VERY full plate…in addition to dealing with Graves’! The #1 priority right now is to make sure that your thyroid levels are in the "normal" range. The best benchmarks for testing are Free T3 and Free T4. Uncontrolled hypERthyroidism can cause bone loss, muscle wasting, and heart issues. It sounds like you have not been through any treatment, so perhaps your levels are already in the normal range, but the diagnosis was made by testing for Graves’ antibodies? *If* you are hypERthyroid, you will want to have a conversation with your doctor regarding the three treatment options for bringing hypERthyroidism under control. One option is Anti-Thyroid Drugs (methimazole, tapazole, PTU), which block the production of extra thyroid hormone. The other options are to destroy the thyroid with radioactive iodine (RAI) or to surgically remove the thyroid (thyroidectomy). With RAI and thyroidectomy, you will take a daily dose of replacement hormone in pill form to make sure your body is getting the correct amount of thyroid hormone. All three treatment options have pros and cons, so you will definitely want to do some research before committing to a decision.

Aside from making sure your levels are normal, other steps that can help with the healing process are to eat a diet filled with nutrient-dense foods (sounds like you are already working to limit the processed stuff, which is good) and to *try* and minimize stress. It would be great if you could get some help with your work and your family obligations. If that’s not an option, at least try and carve out some time during the day/week for activities that YOU truly love. And feel free to post here to ask questions — or just to vent! This board is a great resource.

Best of luck!

[ddetrolio]

#1065935

Thanks for the post I do appreciate it!
Me and my endo have discussed the drug treatment route & possible use of radiation on the thyroid.

To be honest when he confirmed I had Graves & hyperthyroidism he described it as me be a car on a road where the speed limit is 55, & I was at about 57. He has been monitoring me since winter 09 & I was told after the last vist my levels were holding & did bring up some of the concerns outlined in my message.

I want to just go back now & tell him to give me something, anything to get me back to whatever normal is suppose to be. I am not totally thrilled with the idea of radiation on the body.

Very glad here is a place to vent as well, because I am mad as hell I do not feel better & want to be back to myself soon. The lack of sleep has changed me as it would anyone. My visits to the endo are usually scheduled about six months apart, is this common?

Look forward to many discussions here.

[ddetrolio]

#1018599

Hi to all! I just tunred 47 & one year ago I learned I had Graves, moderate as it was described . I have been to see my endo three times who has been monitoring my symptoms & levels & feels I am making progress. I was having issues long before I went to see him, it was sparked by complaints to my doctor in November 2008 about not sleeping & loss of energy. Their blood tests sent me to the endo, so I could have had this issue for over a year before being treated.

My life has been very busy in the last year. Major changes at my job have made the day to day very exhausting & I no longer find joy in work but we all need our jobs! I care for Mom & her brother both in their 80’s so that takes a lot of time. A relationship started in the fall of 2009 that really giving me a postive feel to life & held my focus for visits to see her (she is out of state) but that sadly ended in February of this year. We are close friends which is a comfort.

My concern is now should I be putting pressure on my endo to begin treatment & how much followup should I have with my endo & my physician? I admist I have not been doing a lot of research on this until now & fear I might be making mistakes as far as how I am approaching it.

My focus is down & my brother noted in conversation sometimes I sound very tired & the words come out slow. I like to talk with people, this is not me! Also spending a lot more time in the bathroom, and food just is not as exciting as it use to be, but I have been working on my diet so any weight reduction so far is due to less junk food.

Any and all feedback is appreciated, hope I can help out as well here….Dave

[Kimberly]

#1065936

ddetrolio wrote:My visits to the endo are usually scheduled about six months apart, is this common?

Hello – Once you initiate treatment, appointments and labs are usually scheduled a few weeks apart. This allows the doctor to tweak your meds (Anti-Thyroid Drugs or Replacement hormone, depending on your treatment option) and work towards getting your labs in the "normal" range. It sounds like you have been in "wait and see" mode to see if your hypERthyroidism resolves on its own…or gets worse. That’s probably why your appointments are so far apart. However, if you are NOT feeling good, it’s worth it to call the doctor’s office and request an earlier appointment.

The “normal” ranges for our thyroid hormone levels are fairly wide…so keep in mind that the high end of “normal” might not be OPTIMAL for *you*. If you really don’t feel well, it’s certainly worth discussing the pros and cons of the various treatment options (Anti-Thyroid Drugs, RAI, Surgery) with your doctor. Also, it’s important to note that all of the three treatment options have some level of risk – and none of them are “quick fixes”. It does take some trial and error to find the right doseage of Anti-Thyroid Drugs or replacement hormone that will get you to YOUR “normal” and make you feel good.

You deserve to feel great…and get your life back! But any decision on next steps should be made in conjunction with your doctor.

[Bobbi]

#1065937

I, too, went undiagnosed for quite a while, untreated for a while. Then, I became very ill, and it seemed like it all happened overnight. It might help you to look at your lab results for thyroid hormone. Do the reports state that the results are normal (albeit at the high end) or do they indicate that the results are "out-of-range." If they are out-of-range, even by a little bit, consider getting a second opinion from another endocrinologist.

[ddetrolio]

#1065938

I have been thinking about a 2nd opinion but do not know for a starter another quality endo in the area. I am seeing my GP nect week to review the information he has from the last vist and review levels.

I just received a bill from the bllo d lab, can they give me results that would make sense?

Tanks to veryone, I really need to feel beetter soon this is draining.

Dave

[Ski]

#1065939

Hi Dave,

Believe me, we’ve all been where you are. I know it’s frustrating, and harder still when you’re ill. I can tell you for a certainty that you will get better, healing will come ~ but it will be a long haul, no matter what your treatment choice.

I saw your other post saying that you are afraid of Graves’ ~ let me put that a slightly different way. Be afraid of hyperthyroidism, but not Graves’ itself. You can get to the other side of Graves’, you will feel better, your body will heal, and you will have a new sense of what it means to be healthy. The only way you can get there is to battle hyperthyroidism and end it. The fact is that your thyroid is overproducing right now, due to antibodies your own body has built (why, we don’t really know), and in the absence of any way to control the antibodies, we must solve the hyperthyroid condition somehow. ATDs can work, do work, and have worked for thousands, probably millions of patients. It takes time to dial in the right dose for you. If you find that they are toxic to you for some reason, then the only way to end the hyperthyroid state is to get rid of the thyroid. I know that sounds drastic, but it’s the hyperthyroidism that can be fatal, NOT Graves’ Disease itself. I hope that makes some sense.

Once again, I know this is tough. We all know this is tough. We’ll be here for you, because we do understand.

One quick note ~ remember that people come to these types of bulletin board for a few main reasons. Either they are newly diagnosed, or having trouble with their treatment. Remember there are millions of people out there who have been diagnosed and successfully treated who will never appear on this bulletin board, because they feel no need for such a thing. Sometimes we read the posts and think that everyone with Graves’ is miserable, but it’s simply not so.

Take heart, be kind to yourself.

[Bobbi]

#1065940

You asked, Dave, about where to get your lab reports. Call your endocrinologist’s office and talk with the receptionist. Tell her that you want to keep copies of your lab reports and ask her to make you copies. Many of us try to track our progress by keeping a file of our lab reports. Our doctor’s typically will have their staff make copies for us upon request. If your endo’s policy is not to allow that, talk to your GP and authorize a transfer of the lab records to the GP (who should allow you copies of the reports).

[mamabear]

#1065941

I am sorry you are feeling icky….Just wanted to pop in and say hello and welcome and KUDOS to you for taking care of your mom and uncle. What a great person you must be to take on that responsibility. They take care of us and we then take care of them. I am sure it is quite draining and of course you work so that is draining….. Smile to yourself because you are worth it !

I don’t mean to pry….wait who am I kidding… I mean I am "mamabear" for a reason! I do mean to pry since you did bring it up… You say you are friends with an exgirlfriend. Do you still love her and the friendship isn’t all you want? That could put a huge strain on your body and mind. I’m just sayin’ in order to heal from a romance, we tend to not be near the person after a breakup. Since you are still friends with her you might not have had time to heal from the actual romance due to the continued friendship. It might just take you thinking to yourself that you do love her and you still need to move on even if it’s just as friends… point is, is that you have now thought through it and that might take a big brick off of your shoulder because you might not have realized it. You never know the things that we keep on those shoulders of ours!!!

I wouldn’t continue the wait and see if your levels are out of range. Talk to your general dr. and see what he/she says and go from there. Personally I like to figure it out and fix it (i did meds). So chat with the dr. and see what they think of the endo. You can always go for a 2nd opinion. You don’t always have to like your 1st endo….. (yep I ditched my first one! 2nd was great although he retired! 3rd I ditched too, and 4th well I ditched her due to her staff). Thank goodness I’m in remission for all this time! My general dr. keeps me in check though and there is a new endo on my ins. so if need be I can see her. lol Always have a back up plan!

Have a great day!

[ddetrolio]

#1065942

I don’t mean to pry….wait who am I kidding… I mean I am "mamabear" for a reason! I do mean to pry since you did bring it up… You say you are friends with an exgirlfriend. Do you still love her and the friendship isn’t all you want? That could put a huge strain on your body and mind. I’m just sayin’ in order to heal from a romance, we tend to not be near the person after a breakup. Since you are still friends with her you might not have had time to heal from the actual romance due to the continued friendship. It might just take you thinking to yourself that you do love her and you still need to move on even if it’s just as friends… point is, is that you have now thought through it and that might take a big brick off of your shoulder because you might not have realized it. You never know the things that we keep on those shoulders of ours!!!

Yes and I do think the time has come to accept this did not turn into the relationship I was hoping for. She has a very busy life so I know we will be in touch but I also know I have to focus on me and my healing. We will not be able to do it together, but it does not mean I should not do it at all!

I wouldn’t continue the wait and see if your levels are out of range. Talk to your general dr. and see what he/she says and go from there. Personally I like to figure it out and fix it (i did meds). So chat with the dr. and see what they think of the endo. You can always go for a 2nd opinion. You don’t always have to like your 1st endo….. (yep I ditched my first one! 2nd was great although he retired! 3rd I ditched too, and 4th well I ditched her due to her staff). Thank goodness I’m in remission for all this time! My general dr. keeps me in check though and there is a new endo on my ins. so if need be I can see her. lol Always have a back up plan!

My meeting is a week form Wednesday with my GP and will start from there….2nd opinion seems to be in my future.
Thanks for all the good wishes ” title=”Very Happy” />

[ddetrolio]

#1065943

Are the reports easy to understand? I am an IT guy but I understand Windows (well most of it, Bill Gates needs to share) but can the reports be easy to follow?

Thanks!

Bobbi wrote:You asked, Dave, about where to get your lab reports. Call your endocrinologist’s office and talk with the receptionist. Tell her that you want to keep copies of your lab reports and ask her to make you copies. Many of us try to track our progress by keeping a file of our lab reports. Our doctor’s typically will have their staff make copies for us upon request. If your endo’s policy is not to allow that, talk to your GP and authorize a transfer of the lab records to the GP (who should allow you copies of the reports).

[ddetrolio]

#1065944

Believe me, we’ve all been where you are. I know it’s frustrating, and harder still when you’re ill. I can tell you for a certainty that you will get better, healing will come ~ but it will be a long haul, no matter what your treatment choice.

It often seems I have been waiting too long…should have done more.

I saw your other post saying that you are afraid of Graves’ ~ let me put that a slightly different way. Be afraid of hyperthyroidism, but not Graves’ itself. You can get to the other side of Graves’, you will feel better, your body will heal, and you will have a new sense of what it means to be healthy.

Why is it so hard to get to this point? I just want to get to normal or close to it again. I am so frustrated.

Once again, I know this is tough. We all know this is tough. We’ll be here for you, because we do understand.

So glad I found you all.

Take heart, be kind to yourself

That is hard for me but I am trying.

[mamabear]

#1065945

Ahhhh, you’re an IT guy! Well then you fix things, you are frustrated because you can’t "fix" this. Most of us that are "fixers" don’t like not be able to fix ourselves. We have to rely on others and sometimes those people just don’t have a clue either. lol

It is important for you to understand that even with the best of health, the best work out treatments and the best of intentions doesn’t mean you won’t get Graves’ Hyperthyroidism knocking at your door. It can mean that you might be fit enough that you wont look like you’ve lost 20 lbs here and there.
Here is a true example:
Female
Age: 53
Height: 5’2"
Weight: Thin
Petite but muscular due to her two hour a day work outs.
Diagnosed with Hypothyroidism the winter before and is on Thyroid Suppliments for it.

Spring time, winds up in hospital with a pocket of infection and her husband has no clue what could be wrong. Her dr.’s finally come to the conclusion that the infection is due to Crohn’s Disease (an auto immune disease). Long story short she went through surgery and then over the summer had a hard time again but is doing well and has been in remission (just means no other infections) for 2 years now. She still has to deal with the every day to day Crohn’s disease and what it does that makes you have to run to the bathroom and things like that but no more infections and she is grateful for that.

She lost so much weight during this time and all of her muscle mass. Has she not been as fit as she was her dr’s said she would have died. No joke! It was a hard thing to hear her tell me….she’s my mom. I use to laugh at her and say why oh why do you work out for that long every day? It’s unhealthy, she would laugh at me and say no it isn’t, i strength train then do cardio then muscle exercises then, then, then…. She said you never know when you’ll need to be fit! LOL boy she wasn’t kidding!

You can think to yourself "if I only did this" "if I only did that"…. At this point there is no reason to second guess yourself, you body is what it is and just make sure you eat well and exercise according to what your dr. says is ok to do. Now that you have said it out loud about your friend, you might be able to mend a little better. Put a smile on your face, you’re worth even if you don’t feel that you are. We are all worth it, graves’ disease takes it out of us so we dont’ feel we need to pamper ourselves. OH YES WE DO….. as often as we can, even if it’s just a cup of tea(herbal lol) or just hang out with some buddies that you haven’t seen in a while.

[Kimberly]

#1065946

ddetrolio wrote:Are the reports easy to understand? I am an IT guy but I understand Windows (well most of it, Bill Gates needs to share) but can the reports be easy to follow?

The lab reports seem a bit overwhelming at first, but once you learn to zero in on the right information, they are pretty easy to follow. Pay special attention to any items that are flagged as being outside the normal range. I’m sure that various labs do it differently, but mine lists the "out of range" items in bold with either a "H" (too high) or "L" (too low). It’s also a good idea to compare labs from one visit to the next. For the items that are out of range, note whether they are getting closer to (or farther away from) the "normal" range and how quickly they are moving. Here are the items that I pay the most attention to:

Antibodies (TSI and TRab) – The antibodies have a fairly long life, so these are only tested every few months.
Free T3 and Free T4 (This is the amount of hormone that is available for the body to use; out of range HIGH indicates hypERthyroidism)
TSH – (TSH regulates the amount of thyroid hormone that our body should be producing; out of range LOW indicates hypERthyroidism, because our body doesn’t need a "prompt" to make extra thyroid hormone if we are already hypER)
CBC – Complete Blood Count; an out of range LOW can indicate a potential side effect from taking anti-thyroid drugs
CMP – Complete Metabolic Panel; I’m not as familiar with this one, although an out-of-range result can indicate potential liver issues.

Hope this makes things less confusing…not MORE confusing!

[Mcweis]

#1065947

"Am I doing enough?"
I’ve worked in a medical laboratory since 1991. I have a degree in Medical Technology and was a Clinical Chemistry Supervisor for years. I changed jobs due to stress and later started getting the tell-tale signs of Graves. (all but the eyes). Over a year and a half later when my 15 year marriage crumbled and I went from a social drinker to an alcoholic, I ended up with the Graves Eye Disease. I couldn’t focus or see one image. (one over the other). I work on immunoassay analyzers that all of the thyroid testing is done on. Because of my eyes, my MD ordered the thyroid tests and WHOA, life has changed. I quit using him as a doc when I dealt with the problems for so long before he diagnosed me. The kicker was that he admitted his own wife has Graves!!! That was in 2006. To this day, no one has any clue what long-term Hyperthyroidism does to an individual. Just a couple weeks ago I asked my endo for Armour because just synthroid helped just a little. (I personally check my ft4 and tsh regularly) 150ug kept me in range (slightly hyper). My endo says that if you go hyper, you need to stay a little hyper. Just last week my eyes started to exhibit the old strain that made them continually have twitches and hard to focus. I assume my TSI is rising again. Relapse??? The endo won’t do Armour because it’s hard to get a stable concentration. He lowered my Synthroid and added a little Cytomel. I see a slight improvement!! I’m still not comfortable with the lack of
information about Graves out there. Where can I find an endo that really knows all about Graves???? Sometimes I feel like I know more than they do!!!!!!

[Author]

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