[Jules]

in reply to: TED and muscles going back to normal #1175769

Interesting not Tree Sling stupid auto correct.

[Jules]

in reply to: TED and muscles going back to normal #1175768

I still have CSF issues, but I thought it was I tree sting how ALL of my doctors are interested in what I have done to get my eye muscles back to normal.

Too which I reply, ummm regulated hormones? Armour Thyroid? My surgeon keeps saying amazing I had to blind you just to get your muscles back to normal. Which is highly unlikely

[Jules]

in reply to: searching for eye mask #1175748

I use frozen peas in a zip lock bag. They fit the contour of the eyes perfectly. My neuro ophth suggested this after OD surgery. Why he did not suggest before surgery is beyond me. They are cheap and reusable.

[Jules]

in reply to: hypo after RAI #1175686

Thisis exactly what happened to me. By 8 weeks post 20McI I was hypo at 78 TSH. doc said he had never seen anyone react so quickly.

I went through the wringer trying to get back to normal after that. The Meds did not agree with me. I felt like hell just froze over.

In hindsight: Personally I think if we are given RAI we should be given a FREE T4 and Free T3 test every 2 weeks after RAI. As soon as those numbers get in the normal range start the replacement Meds. I would rather deal with it that way then a holy heck crash like I experanced. My eyes started to react with in 3 days of RAI. Hypo feeling with in 4 weeks however my TSH and T4 were normal. There really is no standard of care of RAI. Most docs order some where between 5 and 25 MCI and hope for the best. While we have to endure their cure.

[Jules]

in reply to: sinus infection #1175700

I have found that sinus infections and hyperthyroid and hypothyroid are a real bear to deal with while you are still adjusting your Meds. Each time I had an infection, we would end up with 2-3 courses of Meds to cure the infection. Now that I am finally close to my pre thyroid numbers I don’t see sinus infections.

[Jules]

in reply to: Help with understanding test numbers please #1175735

Let me add that over the course of 2 years it has taken me to get my Meds almost to that sweet spot.

My last blood draw when the doc requested the blood test I requested he order. He could see that my frees were totally within range and my TSH was non existent.

Usually extream low TSH registers a doc to check for hyper thyroid. However my theory is this. If our thyroid is removed by RAI or surgery the TSH is reading our Meds we are taking, not the actual blood and what is in there for our bodies to use.

M method is working for ME. Does not mean it will work for you. However there is a chance to discuss this with you GP if they are willing to hear you out.

[Jules]

in reply to: Help with understanding test numbers please #1175734

You will find that MOST GP’s and a lot of the endos will only test the tsh and t-4 with no regards to the free t4 and free t3. I have actually started to request specific testing with the LAB’s own numbers when my GP decides that it is time to do blood work.

The reason is:

At first they were only testing TSH which was stating near normal. However I still felt crappy. Then he added in the t4 test and the TSH for women how are expecting! I have never had a child and at 49 years I don’t expect to start having them.

Anyways I started questioning him as to why everytime he tested my blood the test was never the same TEST! I finall found some old blood work my endo did back when I was first DX with graves. I gave those lab orders and the corosponding lab DX codes and lab numbers for requesting the test to my GP and he is finally ordering the correct test.

What happened for me: (I do not recommend this method unless you are willing to accept the out come as your own!!!)

The TSH was low below range so my GP wanted to decrease my Meds said I was hyper. I told him nope I don’t feel hyper. I refused to lower my Meds. Then he ran t4 and it was showing in range. However I still felt hypo. He was stating you are not to change your Meds every thing is perfect. Well since I know my own body and it was craving Meds by shaking violently until I took my Meds in the morning. So I decided to add 1/4 tablet and get blood work in 6 weeks.

Of course the test for TSH came back really low, and the t4 was actuall on the low side. I deduced that this was making me feel better and the doc was seen significant changes in my mood skin etc…

Then when my body started shaking again I again added more thyroid Meds retested. Because what I was doing was actually making my doctor see that I was doing better. He wanted me to stop because of the TSH. I made a deal with him, that if he would test the FREE T4 and FREE T3 and they showed my in the hypo range I would listen to him, however if I was correct and my frees were in the normal range. He would allow me to keep on my current med track.

Well he finally has given in tested for the frees and has seen the results. The TSH is non existent the frees are perfect and I could bearly tell I have a thyroid issue.

Also a side note. I have extream TED in my right eye. Let me clarify that I HAD extream TED. I had the orbital Decompression to fix the area. However now that I am in the upper limit of the FREE T3 & 4 my muscles have actually receded back to normal size. THIS IS A NEW DISCOVERY and not to be taken as a gold standard, (this might not happen to you )however they are starting to look at scan and test to see why my eye Muscles have receded.

So just a note THYROID issues are in the very begining of being understood, now that we have never technology for testing. Hang in there. If you do not feel well I suggest you stay on top of your doctor to figure out what’s wrong.

[Jules]

in reply to: How Long For Beta-Blockers #1173350

After they found out I was allergic to MMI and PTU I was on beta blockers for 3 months. By then my numbers were off the charts and I was begging for RAI. (I wanted surgery but that was not an option for me).

I suggest you contact the primary and see about getting a stat appointment with the endo or ask to see if they can prescribe and check blood work every 4 weeks until the endo appointment. Or go to a new primary that will treat you and get you a stat appointment.

Those 3 months were no fun at all.

Good luck.

[Jules]

in reply to: I don’t think the Prednisone is working #1173202

Def see a neuro opth. I felt relief only on high doses but issues returned every time I decreased.

I ended up having the solumedrol infusions for 12 weeks last year during the worse of my TED. It helped while I was on the infusions but then my eye got worse after the infusion. I had surgery during the end stage of my active phase to save the sight in my right eye. Why endos believe they know everything, An Endo has no clue about TED.

Just my opinion

[Jules]

in reply to: Beta blocker use post-treatment #1173285

I take metoprolol, I have taken this since my RAI in 2010. I helps regulate my rate below 90. The heat that you feel could just be hormones. I know I go through these sweating heat spells for no reason. They come and go. Yes I am on the low side of normal (Simi hypo) doc for some reason likes me there in stead of the high side of normal. I feel better on the high side of normal with no sweating or hot flashes.

[Jules]

in reply to: Positive attitude #1173248

So funny you talked about Progeria Kids. I am a member of the California chapter. My friend Terry lost her daughter to progeria some 20+ years ago.

These kids are what inspire me to have the positive attitude (when I remember to ) they are the absolute best kids, full of life and laughter. There is one little spunky on Adalia Rose on Facebook that is 5 yr old with the most beautiful eyes. All of the kids are now getting Facebook pages raising money for the drug trials third year.

[Jules]

in reply to: I need help in Canada #1173262

If I remember correctly there are a few Canadians on here. Hopefully they will chime in.

[Jules]

in reply to: Positive attitude #1173245

I did not mean to alienate anyone with my statements. I just find that since my Dx in 2010 I have be come compulsive to a fault thinking that doom is around the corner, with every ache and or pain. It was never this way before graves.

Being 2 months out from my recent craniotomy has amplified this compulsion. Everything that aches makes me concerned that I will have to go thought this surgery again.

I understand about people telling you, buck it up and deal with it. THAT was not my intention of this post.

What I have found, with keeping a positive attitude, is with every ache pain or concern, I don’t jump to the worse conclusion about it, but pause change my attitude and look at it from a different altitude so to speak. I’m tired of jumping into the deep end when it is just my imagination getting the better of me.

During my deepest darkest day of graves, when I thought I was having a heart attack every day for 4 months. I wish I had a better attitude, maybe I would have not worried myself to almost death! I felt like any minute I would not live to see the next, during those days. A little bit of positive thought might have helped me.

Going through this surgery has brought back a lot of those old feelings, so I thought about it and decided, this disease and my current situation is not going to define me.

It is too easy to try and grab another pill and pray that I just did the right thing about taking that pill for the anxiety, pain ( ____ add what ever you want in the blank). I feel like I have become a hypercondaic. The power of positive thought has changed my outlook as to the situation, so I can think clearly, is this a true concern or just my over active hyper reaction to a situation.

Sorry if I offended anyone who is currently searching for help in their deepest darkest moments. We have all been there.

[Jules]

in reply to: Positive attitude #1173237

Glad you enjoyed my affirmation, and yes we need a LIKE Button om here,:p

I sure hope it helps others to remember that there is a real person underneath this Dx of graves disease, that needs this more than anything else when it feels like the world is crumbling around them.

Our mind is a very powerful tool in out medicine chest. Instead of taking out a pill from the medicen chest for this ache or pain, I will be taking out my attitude and verifying that it is properly placed front and center. Of course this is easier on me today. When I at my worst of ft4 at over 700 this was not as simple to do.

Now that i have had more trials and tribulations with the csf leak, the craniotomy and blind in my right eye, I realized that when I made the effort I was never disappointed with the results of positivity.

Have a very enjoyable Sunday.

[Jules]

in reply to: to those who had OD-did it help you a lot? Glad you did it? #1173218

Yes I can see a defined difference in the eye being more set back into the socket. If I have to have to other on done yes I would do it. Even with the complications I had with the first one. I would just make sure that the team of surgeons behind me know what to look for and how to accomplish the task at hand.

[Author]

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