[Naisly]

in reply to: Antibody Test? Low-dose MMI with antihistamine? #1179784

This is quoted from the company who does the TSI testing from an email I sent them.

Quote:

“Published Guidelines by the ATA which recommend TRAb testing in certain clinical situations. When these Guidelines use the term TRAb they mean anti-TSHR autoantibodies (TSH Receptor antibodies) and they are not distinguishing between tests that measure antibodies that bind to the TSHR (and do not distinguish between stimulating, blocking or neutral) versus TSI which specifically measure stimulating antibodies. The reason that the Guidelines are not specific is that the binding tests have been available for a long time whereas the TSI tests were only FDA-cleared 5 years ago. Since then there are many publications that have demonstrated the value of TSI over TRAb (i.e. binding tests).

Many physicians were trained before either of these anti-TSHR tests were available and became accustomed to using RAIU to diagnose. Although RAIU still has a role, today TRAb/TSI testing coupled with Ultrasound is effective in the vast majority of cases. There is no question that TSI is preferable to TRAb because it provides more information. It will take a while for physicians to adopt TSI more routinely.”

Hope it helps.

[Naisly]

in reply to: Me and Hyperthyroidism(For those curious folks) #1179778

Thank you Stymie for the kind words.

[Naisly]

in reply to: Causes #1179749

QZZznne wrote:

If Graves is an autoimmune disease which attacks the thyroid, why don’t we treat the autoimmune disease?

We sort of are by using ATD’s since they have shown to lessen the antibodies which is the cause of GD.

Personally on that note, this is why I will not choose a more permanent treatment such as RAI or surgery. Because once I do either, then there is no going back and I will not have the chance for the cure. Even if it is years longer than they suspect, at least I have some hope and able to work with the disease rather than against. Understanding, learning and advocating for my own health. If I feel miserable some days, that’s ok – There is light at the end of the tunnel.

Quote:

Nevertheless, thanks to a group of outstanding physician-investigators able to integrate the laboratory with the bedside, we sense that exciting changes in the management of Graves’ disease are at hand. Currently, for instance, there are several molecular target therapies under development that will significantly alter the clinical management of the disease within the next few years.

Quote From:
http://www.hindawi.com/journals/jtr/2012/809231/

[Naisly]

in reply to: So what was your Graves story…. #1179293

Quote:

I wrote it because I find it really unfortunate that this forum was there for you when you needed help the most

I don’t get how you think this forum was there for me. It never has. I only come here to help those poor souls who are mislead since everything is sugar coated.

Let me get this correct. You write – “Research articles from established, credible, peer-reviewed journals can always be posted here…” Because you find it unfortunate that this forum was here for me and I continue to make unfounded remarks – This is why you wrote it?

Quote:

…and yet you continue to make disparaging (and unfounded) remarks about the GDATF.

I really don’t understand what your getting at with this statement. Continue? What remarks have I said that were unfounded? So your saying that when I said, “I wonder why GDATF doesn’t talk about it – cancer” this is a belittling remark, how so? I ACTUALLY do want to know. You make it sound as if I am always making these comments which in fact, I don’t. And a fact this is the only time I have brought this up.

So lets reevaluate what was said:

I said – I wonder why it is not talked about (question)

And you got out of it was:
Disparaging
unfounded
catty
negative

I still have yet to receive an apology from the last time. If anyone is being disparaging, unfounded, catty and negative, that would be you. So, it makes me wonder why you don’t like me.

[Naisly]

in reply to: So what was your Graves story…. #1179291

Kimberly wrote:

Naisly wrote:

And wonder why GDATF doesn’t talk about it – cancer. This is why I tried to start a post here:

http://www.gdatf.org/forum/topic/43388/

Sadly the topic was pushed away.

No idea what you mean by “pushed away”. The thread is still open and active.

Research articles from established, credible, peer-reviewed journals can always be posted here. However, I do always caution patients to consider whether any particular study on RAI is *specific* to Graves’ patients — or whether the study was done on thyroid cancer patients, who receive a significantly larger dose.

Couple points:
“pushed away” was me saying what I really felt in a nice way
Second, you know I always post established, credible, peer-reviewed journals. (which I mentioned in my post) You also know that I am smart enough to the difference between thyroid cancer and Graves. What I don’t understand is why you always mention this and don’t even make note of what my post was about.
So either you write this to discourage other posters or you know I am right and can find nothing else negative with it.

[Naisly]

in reply to: A Bad OMG day, not getting better #1179690

Boomer
Well I am glad it is not that much! But even still, 60mg a day is a HUGE amount to be taking. Please please, watch your symptoms. The recommended dose was lowered a couple years back from 30mg to 20mg because of too many adverse affects. As well as being very hard on the liver. Also please make sure your doctor is dosing according to your TF4 and TF3’s, not the TSH only.

That is the mistake my doctor made and seems to be all too common.
When my doctor made that mistake, my levels were TSH 0.09 TF4 7.6 TF3 2.4. He kept me on 30mg because my TSH was still 0.09 even though my TF’s showed I was HYPo, hence why I jumped so fast as I showed in my previous post.

At that point he should have lowered my dose quite a bit to stop me from falling any farther. I would really hate for this to happen to you. It is very very painful and I could barely get out of bed let alone walk up the stairs.

The best thing anyone can do is to get hard copies of your labs and learn how to read them yourself so you can discuss it fully with your doctor. Then and only then can you understand what he/she is talking about.

Edit: Sorry I have to stress this point. Please don’t assume your doctor is looking at all your levels, ask him straight out. It was only a couple years ago that doctors became aware that treating GD with only TSH was wrong. So quite a few doctors don’t know this yet, even endo’s.

[Naisly]

in reply to: A Bad OMG day, not getting better #1179688

Quote:

karenz516
My endo said my liver enzymes were slightly elevated (probably from the statin meds for cholesterol) and he would not give me the anti-thyroid meds prior to RAI.

It is very normal for anyone with GD to have elevated liver enzymes before any type of treatment. It is part of the disease.

Boomer
Your saying that your taking 60mg of MMI every eight hours? I also had severe GD and now close to remission 8months later. My GD was so bad I had to take 240mg of propranolol and my TF4 was 54.

Ann1960graves
It takes about 2-4 weeks for the TF4 stores to leave. And during this time you will begin to feel better. But this is why it is important you get labs run if your symptoms start to change and why I don’t understand your doctor checking again in 4-6weeks because A LOT can happen within that time.

I went severely hypo with 3weeks and still climbing out of that hypo-hell.
I went from:
Oct.3/12
TSH 0.09
TF4 7.6
TF3 2.4

To

Oct.25/12
TSH 73.8
TF4 <5.0
TF3 <1.69

I would also talk to your doctor about taking your MMI 3x a day instead of twice. The manufacture suggests 2-3x. This is because MMI has a fairly short life. Some people really feel the yo-yo effect of hypo/hyper during the day if they are on it 1-2x a day.

Please do read the post I made – A few things to help you feel better.

I also have a 2 sons who have ASD. My youngest is 17 and it’s hard enough he is a teen lol. He is also graduating this month, and bound and determined to move out this summer. I also run a retail store and just recently opened a manufacturing business. So I hear ya!

[Naisly]

in reply to: Few things to help you feel better. #1175511

I think this will be good for those who need some help currently.

I do hope it is helping at least some people.

[Naisly]

in reply to: Blood sugar levels unstable? #1179568

Diabetes and GD are linked. Anyone with GD should have it tested just to make sure.

http://www.hindawi.com/journals/jtr/2011/439463/

The above is a good explanation between the two.

Also don’t forget about:
Vitamin D
B12
Iron
Adrenals

Edit: Added link

[Naisly]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179589

Quote:

Will my eyes ever be back to ‘normal’?

If you already have eye involvement, then they are apt to get worse before they get better. Having surgery does not lessen the chances to get TED, in fact it can makes it worse. But I’m sure you already know this and have done your research.

[Naisly]

in reply to: Medication/Surgery #1179551

Euthyroid means normal thyroid function and does not mean Graves disease is in remission (The thyroid gland is the victim, not the cause).

For Graves to be in remission, you must not have any (or very very little) TSI (thyroid stimulating immunoglobulin) which causes the production of the thyroid hormone. TSI is the direct cause of hyperthyroidism in Graves’ disease and TED. TSI will continue to be elevated if there are still environmental triggers.

There are 2 things that stimulate your thyroid:
TSH
TSI

TSI ‘pretends’ to be TSH and your thyroid makes more and more thyroid hormones all the while your TSH thinks you have too much so less and less TSH is made – Hence, Hyperthyroidism.

The goal is, is to get those nasty buggers to leave. You can do this with the ATD therapy. Where as RAI will only make them angry (sorta speak) and they will search for something else to attack ie: eyes. Same thing with surgery, but not as bad as RAI. With TT there is ‘some’ thyroid tissue left. Obviously because of nerves, vocal cords, and parathyroids. Some believe that removing the thyroid will in fact remove the antibodies. I wish this was true. Fact is, TSI can be found in the brain, skin, bones, eyes.

[Naisly]

in reply to: Medication/Surgery #1179548

QZZznne

Did your doctor test for antibodies? They would be TRAb and or TSI. A lot of doctors miss this and it usually takes a patient who advocates their health to ask for this test.

If she hasn’t tested this, then I would look for an new endo as well. Because if she is not up to date, then how is she going to continue to treat you when you go Hypo?

[Naisly]

in reply to: Cold. #1179507

I am the exact same way Shirley! It has gotten to the point that when my kids use the oven, they call me down to the kitchen. Because god forbid I waste all that oven heat! So you can usually see me sticking my head in the oven.

But here is a tip:

You know those arm bands you use for like tennis? Wear those. They really help.
Also, I cut the foot out of fuzzy socks and wear them around my knees. Once I have my wrists and knees covered, it does help take the edge off.

[Naisly]

in reply to: Cold. #1179505

Hi Barbra,

I am always cold as well. Even while I was extremely hyper. And when I say cold, I mean right down to the bones. My daily temp barely moves over 36.5. All winter I need to wear 3 layers of clothes including my winter jacket inside. And yes, having a hot shower helps for a bit. I also find that the more tired I am, the colder I get, to the point my lips turn purple. I can’t even eat cold salads or drink cold water. In the winter I am probably dehydrated because I just can’t drink anything cold, I would rather stay thirsty …

It is definitely a different type of cold. But as Kimberly said, being cold is also a hypo symptom. I would call and get your labs.

[Naisly]

in reply to: To Boomer #1179534

Boomer,

I agree with Shirley.

Try not to overly think what happened. I know it is hard, but with GD we have all been where you are at – lashing out to others, using words that you would not normally say, this is normal for us. And I think most of us can agree that we have done this on numerous occasions. Friends, loved ones, the lady at the supermarket, the police man etc. There is nothing to be ashamed for, this is part of Graves Disease. And this does get better.

I would like to tell you my personal experience with drugs if you want to listen.

I am 45 and when I was 18-21 I was taking every drug known to man at that time. If you were to pass me a pill, I would pop it in my mouth without even asking what it was. I wouldn’t say I had an addiction – but if it wasn’t for a few things that had happened during this time, I am sure I would be dead or on the streets now.

I met my husband at age 18, shortly after this I got pregnant. I continued to do the drugs (mainly opiates). At my 4th month I had a terrible miscarriage. I was in the hospital when it happened, had a D&C and that was that. It broke my heart, I was literally a mess and kept asking why? (Keep in mind that at 4months, the baby is formed) My mom always told me you might not see it now, but one day you will get your answer. Of course being 18 for one, and losing a baby, how is that even helpful?

Yet after all this I kept using the drugs. Until one day when I was 21 – I found out I was pregnant again. That day changed the rest of my life. I completely stopped everything. Smoking, pills, everything on that very day. There was no way I was going to go through that hell again. The pregnancy went perfect. Other than, my husband didn’t want to stop the drugs and he continued. And continued through my other 2 pregnancy’s. Until one day, 19years later, I left him. I watched him change, his mind become erratic, he started to hallucinate – He finally decided he wanted to kill us all because he thought I was seeing someone else, which wasn’t possible since he wouldn’t let me leave the house.

Believe it or not, I now have an extreme phobia to pills. I can’t even take vitamins, or even creams, even some hair shampoos. And as you can imagine, taking the MMI’s was one of the hardest things I have ever done in my life. It took me 3 months before I would take them (screaming and kicking the whole time). I think this phobia is just deep within my psych. from being paranoid of becoming an addict or dieing. Because sometimes it’s not the high from taking a pill but it is the ‘act’ of taking the pill, and this is something that most people don’t get. And I have a feeling you understand.

And now, I am doing a lot better with my phobia because of GD. I lived! I made it through without any adverse effects, my mind is so much clearer, and over all I feel ten times better, physically and mentally. So if I go back to what my mom said after I lost the baby – I do have my answer, and am glad (now) that things happened the way they did.

My point to you is, never give up and keep asking all those questions, because one thing with GD is, it will test your will and spirit. And I believe that you are strong and will get through this.

Keep up the great work.

Naisly

PS: If you want to chat, you can PM me. I also live with an alcoholic and my mom is one as well.

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