# Scared!



## SuzieD (Feb 17, 2010)

My story is that I was an active 48 year old woman. Very physically fit and ate healthy. I home school my 12 year daughter & life was great!!!

As any premenopausal I had to work hard to keep at a healthy weight, which was @128 pounds at 5'.

I never had thyroid issues, I mentioned to my dr how hard I work out & she said regarding mt thyroid #'s (using TSH) "We have room to play". She irresponsiblly put me on Levothyroxine mid Sept. You can see by my weight she should have told me to just keep doing what I was doing and my weight was fine.

Very naively I went on Levothyroxine. I started getting eye pain and lid puffiness 6 to 7 weeks in & didn't put 2 and 2 together until 11 weeks. I stopped the meds on Nov. 30th. The dr saw no connecion, and thought it was sinuses & was no help to me at all.

In very bad pain I went to several drs. Opthomologist, ENT, New Primary care. I have no physical signs of graves.

New Primary care phys did a batch of bloodwork & an MRI. The MRI revealed I had enlarged eye muscle and extra orbital fat. Looks like thyroid orbitopathy (sp?) So far all of my thyroid blood work has been normal. Some of my white blood count is off. Currently waiting on 2 more tests (TSI & another antibody test)

In the mean time I am in pain. My eye hurts (only one) & it radiates to my face. I can't sleep, I wake up after only avbout 3 hours. I have hot & cold sweats & now severe anxiety as to my prognosis.

I have an upcoming appointment with a neuro opthomologist. Hopefully he has some answers because so far no one has.

This has been a nightmare. I was a completely healthy physically fit woman in Sept with no thyroid issues & going on Levothyroxine has caused me to develop this. (Although many drs. will refuse to believe the meds caused this) But I KNOW if I never went on it I would still be healthy & sleeping nights & exercising!

Most people who are here started out with a thyroid problem & so I know my situation is unique to most. I am wondering, "DO I wait out this active phase"? Will it go away? I know if Prednisone is offered to me by the neuro opthomologist I will have to think twice as I have read that is a poison!!! BAD side effects. I feel like I went from healthy to spiraling into this mess.

I am praying for my light at the end of the tunnel. Does anyone have any idea? Does this go into remission?

I need hope right now. I went to bed at 9:30 & have been up since midnight. I am trying to keep anxiety low but it's hard when you have little sleep and can no longer exercise due to pain.

Is there hope? Please someone tell me this will all be ok without further toxifying my body with steroids or RAI. IS RAI only used for hyper thyroid? Believe it or not going on Levothyroxine actually put my #'s from great to closer to hypo. They are back to very good again right now tho.

I apologize for this long post. I was hoping with some background details & info someone can help & hopefully provide some hope???????


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## Andros (Aug 26, 2009)

SuzieD said:


> My story is that I was an active 48 year old woman. Very physically fit and ate healthy. I home school my 12 year daughter & life was great!!!
> 
> As any premenopausal I had to work hard to keep at a healthy weight, which was @128 pounds at 5'.
> 
> ...


Welcome to the board!! Oh, my! Well, the excess thyroxine sure could have triggered this but before we take this any further, I would like to recommend that you get the following lab tests. Then we would like to see the results and the ranges. Ranges are a must.

TSH, FREE T3, FREE T4, TPO (antimicrosomal antibodies), ANA (antinuclear antibodies), TSI (thyroid stimulating immunoglobulin) and Thyroglobulin Ab as well as thyroid binding inhibitory immunoglobulins (TBII.)

You can look all of the above up here so you know what they are for........
http://www.labtestsonline.org

Unfortunately we have to back up here and either confirm or rule out autoimmune thyroid disease. It would be good to get an uptake scan also.

And by all means do what the ophthalmologist says to do. Long-term use of Pred is very very bad but short-term usually is not.

There are several causes of orbitopathy, that is why I say this. It needs to be cared for no matter the reason right now.

I know you are scared; I was also. I had Exophthalmos really bad. Just know someone is here for you and I hope and pray you can get the tests recommended.


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## SuzieD (Feb 17, 2010)

Thank you for your kind response & it is nice to have someone to talk to. Also, I am not familiar with Exophthalmos. Are you recovered? 
My last tests were
TSH 2.17 Range 0.358-3.740
T4Free 1.21 Range 0.76-1.46
T3Free 2.77 Range 2.30-4.20
T4 Total 7.9 Range 4.40-11.0
T3 Total 1.2 Range 0.7-1.8
Thyroglobin Antibody 0.6 Range 0.0-14.4
Thyroid Peroxidase Ab(Microsomal Ab) 0.4 Range 0.0-3.9
ANA - Negative - None Detected

I am waiting on (any day now ) TSI & thyroid stimulating hormone receptor

What am I still missing that's important? And I wonder why the drs/ don't check them all when this is suspect.

What good would the uptake do? I am so scared because I am SUPER sensitive to those things. I reacted to a barium swallow test in 2007 that left me sick for 15 months. I get so scared when drs. want to inject me with those things now.

So you think short term Prednisone would not be bad? What would be considered short term? Is that usually effective in reducing the eye muscle enlargement?

I have 2 thoughts/questions. One - could it have been an allergic/adverse reaction to meds? I read generic Levothyroxine has many side effects & again - I am sensitive. #2 I read there are 2 types of TED. One is auto immune where it could be a little worse. The other is due to an inbalance of thyroid hornones (such as when I whent on meds) and that when throid levels are good again it clears up quicker????What are your thoughts?

Again, I can't thank you enough for your wisdom & support!!!

Will I go back to my healthy normal life style again????


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## Lovlkn (Dec 20, 2009)

SuzieD said:


> Thank you for your kind response & it is nice to have someone to talk to. Also, I am not familiar with Exophthalmos. Are you recovered?
> My last tests were
> TSH 2.17 Range 0.358-3.740
> T4Free 1.21 Range 0.76-1.46
> ...


How much levothyroxine were you on and are these labs from before or after you began taking it?


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## SuzieD (Feb 17, 2010)

These results are from after & I was on 25 mg. I seriously think I had an adverse reaction to the meds. The endo called me the other day & said he personally looked at my MRI film & if I have thyroid eye disease it's the most mild case he's seen. & personally didn't think there was anything wrong with my thyroid. Also, I don't have the copies yet, but he did a TSI and another antibody test and said they came back normal.
But the "serious" side effects of Levothyroxine include eye pain, eye lid swelling, both of which I have. Well the eyelid swelling seems to have disapated but I believe the swelling went internal. My face hurts and drs are wondering if it's nerve related. 
I have appts coming up with neurologist & neuro opthomologist.
I was very naive when I went on Levothyroxine. I wish I had read about it first!!! If it is adverse reactions I just hope & pray it gets better. 
The other odd thing is my TSH actually went UP while on Levothyroxine. It was still in the normal range but higher. I am now told that drs. should check a patient between 6 and 8 weeks after putting them on Levothyroxine & my dr didn't plan to check me until 3 months. 6 to 7 weeks I noticed symptoms but didn't connect. So I stayed on 4 more weeks. 
Thanks for any input. 
I have also heard that about 70% of people have some kind of reaction to Levothyroxine. 
I can't turn the clock back and "undo" my stupidy, I can only pray that everything goes back to normal. I feel like I've made a mess of myself, and that stinks because I was in such good & strong health!!
Thanks again!


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## Lovlkn (Dec 20, 2009)

SuzieD said:


> These results are from after & I was on 25 mg. I seriously think I had an adverse reaction to the meds. The endo called me the other day & said he personally looked at my MRI film & if I have thyroid eye disease it's the most mild case he's seen. & personally didn't think there was anything wrong with my thyroid. Also, I don't have the copies yet, but he did a TSI and another antibody test and said they came back normal.
> But the "serious" side effects of Levothyroxine include eye pain, eye lid swelling, both of which I have. Well the eyelid swelling seems to have disapated but I believe the swelling went internal. My face hurts and drs are wondering if it's nerve related.
> I have appts coming up with neurologist & neuro opthomologist.
> I was very naive when I went on Levothyroxine. I wish I had read about it first!!! If it is adverse reactions I just hope & pray it gets better.
> ...


Looking at your labs I would say you never needed any Levothyroxine and that he made that decision by looking only at your TSH.

TSH is a good screening test for thyroid function but other labs need to be run to confirm thyroid dysfunction which your doctor did as well.

None of those point to you needing Levothyroxine -

It's your choice whether you quit taking it but I bet if you did all your symptoms would resolve. Give it a 6-8 weeks and I bet your back to where you started.

Your initial comment to your doctor about weight, as we age we all tend to gain some weight - metabolism slows and it's probably more genetic than anything.

Let us know your decision and how you're doing in 8 weeks


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## chopper (Mar 4, 2007)

If your TSH WENT UP to 2.17, what was it before and how did the doc justify starting you on meds? Did your T3 and T4 also go up since being on meds? What was it all before?


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## SuzieD (Feb 17, 2010)

Lovlkn said:


> Looking at your labs I would say you never needed any Levothyroxine and that he made that decision by looking only at your TSH.
> 
> TSH is a good screening test for thyroid function but other labs need to be run to confirm thyroid dysfunction which your doctor did as well.
> 
> ...


You are absolutely right in that I never needed the Levothyroxine. It was very irresponsible IMO for my dr to put me on it just cause I was pre menipausal & having trouble loosing weight (at 127 pounds, HELLO?!) Looking back I have so many regrets in saying that. I could out exercise most 20 somethings & I was as strong as can be! 
I know I should have been smarter, but I trusted my doc. 
here's the thing, I DID stop taking Levothyroxine on Nov 30 after being on it 11 weeks. So it's been out of my system 3 months now, but my MRI was in January and revealed eye muscle enlargement similiar to "thyroid orbitobathy". But the endo personally looked it over along with all of my bloodwork and felt this was odd, not typical thyroid orbitobathy. 
I feel like I had a drug reaction, and Levothyroxine lists, eye pain & eye swelling as "serious side effects". I am hoping that the neuro opthomologist can tell the difference. What do you think? I see him 3/5. 
I know Levothyroxine has a long half life and maybe my body didn't metabolize it well and it deposited in my eyes????? 
The fact that now I have extreme anxiety doesn't help the pain. I always feel pain and it's completely debilitating.
Thank you all for your help, I wish us ALL good health!!!!!


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## SuzieD (Feb 17, 2010)

nasdaqphil said:


> If your TSH WENT UP to 2.17, what was it before and how did the doc justify starting you on meds? Did your T3 and T4 also go up since being on meds? What was it all before?


When I started the meds my TSH was exactly 2.59 and the dr. exact words were "We have some room to play". I asked if I should see an endo first before just going on the meds she said no, but we will watch it closely.

But she didn't want to recheck until 3 months after. My new dr tells me she checks in 6 to 8 weeks because that s when everything peaks so to speak. That is also coincidentally when I started having eye pain & eye lid swelling.

Not linking it to the drugs I continued taking them another 4 weeks. I then stopped KNOWING the drugs were doing this to me. I also had very red rashy arms & upper chest. I ran to my dr and told her I was having reactions to the drugs & she said she had never heard of that before & told me it sounded like sinuses, so we wasted alot of time treating it as such

BTW - to answer your question, that day, we did recheck my blood & my TSH had gone up from 2.59 before I started, to 2.78 AFTER being on it 11 weeks. I don't know if it may have been higher any time throughout???? But it was odd that it went in the reverse direction. I have had it checked twice since & after 2.78 it went back down to 2.59 and now 2.17. I will probably have it checked again very soon. 
Opinions are welcomed as I am a complete wreck! I still feel like it would be more odd to develop TED from the drugs as it would be to have had an allergic/adverse reaction to them. The endo didn't think I had a thyroid problem & felt the neuro opthomologist was the best person to see now. 
Since the symptoms started 6to7 weeks into the meds with eye pain & eye lid swelling, then apparently the "swelling" went "internal" & the fact that my arms were red & splotchy looking, to ME, make me think drug reaction. 
Also My WBC was normal but my neuts were high (80) & Lymphs were low 
(14) indicating either infection, bacterial, or inflammation.

If this is a case of TED due to the altering of thyroid hormones in my body but having all my levels be normal now, including antibodies, do you think this will go into remission soon? Or do you think it has to run a course of a year or two?

Thank you again everybody. Talking & sharing helps & once again, I wish us all GOOD HEALTH!!!!!!


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## Lovlkn (Dec 20, 2009)

> If this is a case of TED due to the altering of thyroid hormones in my body but having all my levels be normal now, including antibodies, do you think this will go into remission soon?


Could be and there is no way to tell when/if you will go into remission but you most likely will since all this began with the addition of the Levothyroxine. I'm thinking once your thyroid levels even out your eyes will quiet down.

http://radiopaedia.org/articles/thyroid-associated-orbitopathy
"Treatment and prognosis

Although in many instances the disease is self limiting, spontaneously improving within 2-5 years 3 often discomfort, cosmetic issues, the risk of corneal ulceration and optic nerve compression requires treatment. Options include:

1. medical: supportive, steroids
2. radiotherapy 3
3. surgical decompression"

If it were me I would wait and see or try a course of steroids if the pain is too severe for you to handle.

I had a mild case of TED when dx'd with Graves and as soon as my thyroid hormones were regulated it went away and since my surgery to remove my thyroid it's completely resolved. Before that (and my Graves dx) I was dx'd with Optic Neuritis which involved the optic nerve - caused blurred vision and pain - this all cleared up after 4-5 weeks doing nothing.

As far as your TSH - after thinking about it yours is a bit higher than "the norm" so you should keep an eye on it as well as your FT-4 and FT- going forward - testing every year or so. So many women need thyroid replacement meds as they age and with your TSH already being slightly elevated you may become one of them, I just think your doc may have started you a bit too early and was basing it on TSH only.



> I have also heard that about 70% of people have some kind of reaction to Levothyroxine.


Where did you read this?

You really need to ask yourdoc for something to help you with your anxiety - maybe some Lorazapam to help calm you down.


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## SuzieD (Feb 17, 2010)

Lovlkn said:


> Could be and there is no way to tell when/if you will go into remission but you most likely will since all this began with the addition of the Levothyroxine. I'm thinking once your thyroid levels even out your eyes will quiet down.
> 
> http://radiopaedia.org/articles/thyroid-associated-orbitopathy
> "Treatment and prognosis
> ...


I hope you don't mind I have a couple of questions. And thank you for the link. I have read so much these past few weeks I am driving myself into further anxiety!!! I want to be knowledgable but yet it scares the heck out of me. I can't imagine living with this pain for much longer, never mind a possible few years.

Since my thyroid levels have become normal you think my eyes may "quiet down" as you say? But you said my TSH was slighly elevated? I think it became slightly elevated (2.78) while on Levothyroxine but I thought that was still within the "norm" Now being 2.17 isn't that good? But yes, I agree, I believe that I have to keep a close eye on it going forward.

So you were diagnosed woth "optic Neuritis"? How did they determine this? MRI? Were you in a lot of pain? I am in quite a bit of pain, and unfortunately not at the moment taking any pain killers because I am on an antiobiotic at the moment. I was hoping this was all bacterial & hoping an antiobiotic would clear it up. Once I'm off I can try a pain med. So you did nothing for the optic neuritis and it cleard up in 4 - 5 weeks? I've had this feeling since end of Nov, beginning of Dec. I spent Christmas in ER due to the pain (that was when they were thinking sinuses and did a cat Scan) Did you feel your pain all the time? Mine is always in the inner corner of my eye and upper side bridge of nose & sometimes radiates to my face. Which was confusing drs thinking it was a neurological issue. But I guess it is if the optic nerve is involved. Is optic neuritis when the eye is swollen just enough to touch the optic nerve?

I am on anti anxiety meds tho, but I think that is part of my sweats and trouble sleeping as well. I am very sensitive to meds as illustrated in my short bout with Levothyroxine. I feel like one drug leads to another and another. I just want to get healthy and off all meds asap, and go back to exercising again, which IMO is the BEST medicine!!

I will see what the neuro opthomologist sdays about steroids. I am afraid of them as well, but I am so much pain at this point I'd probably try it. Did you ever need to go on steroids?

You say you had a mild case of TEd, yet you needed your thyroid removed? Were your thyroid levels, TSH etc way off?

Thank you for your help. I can't tell you how much I appreciate it!!!!

Any further thoughts/comments on managing & conquering this are welcomed!!!

BTW - How are you now & when did you go through this?


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## Lovlkn (Dec 20, 2009)

SuzieD said:


> I hope you don't mind I have a couple of questions. And thank you for the link. I have read so much these past few weeks I am driving myself into further anxiety!!! I want to be knowledgable but yet it scares the heck out of me. I can't imagine living with this pain for much longer, never mind a possible few years.
> 
> Since my thyroid levels have become normal you think my eyes may "quiet down" as you say? But you said my TSH was slighly elevated? I think it became slightly elevated (2.78) while on Levothyroxine but I thought that was still within the "norm" Now being 2.17 isn't that good? But yes, I agree, I believe that I have to keep a close eye on it going forward. *The new AACE guideline for TSH range is .3-3.0 - yours has been close to top range - you just need to keep an eye on it as TSH fluctuates.*
> 
> ...


*I wish you luck in finding what is causing your issues, my TED was the wide eye look with mild lid retraction in one eye and once medicated it went away*


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## SuzieD (Feb 17, 2010)

Lovlkn said:


> *I wish you luck in finding what is causing your issues, my TED was the wide eye look with mild lid retraction in one eye and once medicated it went away*


Good Morning Lovlkn,

Yes, I did read about the new guidelines where 3.0 is the top. I had always, when generally tested, had anywhere between 2.1 & 2.6. When I went on the meds it brought me closeer to the top, and Im not sure if anytime during that 11 weeks of taking Levothyroxine it went above?? At the end of 11 weeks it was 2.78. But, yes, I agree with you. I am hoping my dr will check it monthly for awhile.

So reading your story, it sounds like the opic neuritis was from the chemicals, yet do you think the graves was a completely different issue or do you think that developed as a result of that whole experience as well? Did your eye protrude? Mine does not. Seriously, I hope the dr is open minded to the fact that it MAY very well be a side effect to Levothyroxine. Believe it or not, and I didn't see this at first, or of course I don't think I would have started taking it, but it actually lists eye pain & eye & eye lid "swelling" as serious side effcets. Since whn I stared levothyroxine I experienced eye pain shortly in, then after 6 -7 weeks eye lid swelling, and STILL not connecting it and still taking the drug, the pain got worse and the MRI revealed "enlarged muscle". I do not look any different but I am in pain I feel it radiating to my face sometimes. When the endo looked at the actually film of the MRI he said if this is TED it's the most mild case he's ever seen. And by ALL the thyroid blood work I have done he doubted I had a thyroid issue. So if I had a bad side effect of Levothyroxine I am wondering if that will go away on it's own? It'a already been 3 months. I pray my neuro opthomologist can tell the difference between tyroid orbitobathy and maybe swelling due to adverse or allergic reaction. He is supposed to be very good. I see him 3/5. If it IS more a reaction to the drug itself, not knowing if it will "go away" & considering the pain & the fact I am not able to funtion in my daily life due to all of this, the pain, the anxiety etc. I wonder if he would suggest Prednisone? I have heard horor stories about Prednisone. I am so scared to get involved in all these drugs, none of them are without side effects & risks but if he thinks 2 weeks on Prednisone will decrease the enlargement of the muscle then I will seriously consider it.

So the experience with optic neuritis was not what brought on graves, it was your pregnancies? And now due to fluctuating tyroid levels you have removed your thyroid? I am so glad for you that it was a good decision. Did you suffer much during that time before removal. When they diagnosed you with graves were your eyes protruding, were you in pain like when you had the optic neuritis? Do you think those 2 were connected somehow? So you are feeling good now? Are your thyroid problems and graves a thing of the past for you?

I am on Diazapam. I only went on that because at Christmas when I was in ER and in so much pain my mom came with me & gave me one. She had a botle from when my dad passed away. Doesn't take them often, just when needed occasionally. So she gave me the rest of her bottle and when I needed more I told my dr I had been taking the diazapam. In the past I have had experiences with xanax and hated that stuff!! I try to take very little, but you're right, there are imes we just need to get through and maybe right now I should take more. I really only take 1 pill a day or break one & split in for 2 times. I took a whole one yesterday & last night was the first night in a LONG while I actually slept through the night. And I'm sure that also helps my body with the healing process. Sleeping 3 hours and being in a state of anxiety the rest of the times can be hindering my healing process.

But again, I'm confused if my muscle enlargent is more due to ingrediants in the drug, WILL it even go down on its own? I pray that the neuro opthomologist can see the difference.

Well, believe it not today is my birthday - LOL. I have had better ones.

You have been very helpful to me. Once again, you are all better now? BTW - until your recent post I wasn't sure if you were male or female but I now see you are a mom just like me. I have 1 daughter who is my world and I pray ever day that I get passed this & get back to my old healthy self because she is worried about me & this has been hard, to say the very the least on my family.

You have been wonderful, please keep writing if you don't mind. I appreciate your experience and knowledge and just being able to "share". It's nice to know there's someone out there who's been through a similar experience and understands the fear and uncertainty and most of all, for ME, it's nice to see that you have overcome your problem and are now at that good point atthe end of the tunnel!!

Talk to youlater


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## Lovlkn (Dec 20, 2009)

SuzieD said:


> Good Morning Lovlkn,
> 
> Yes, I did read about the new guidelines where 3.0 is the top. I had always, when generally tested, had anywhere between 2.1 & 2.6. When I went on the meds it brought me closeer to the top, and Im not sure if anytime during that 11 weeks of taking Levothyroxine it went above?? At the end of 11 weeks it was 2.78. But, yes, I agree with you. I am hoping my dr will check it monthly for awhile.*Monthly may be a bit much - you need to keep an eye on your FT's as well ( at least 1 or 2x) just to make sure nothing does go haywire with your thyroid after this event. The changes in TSH you listed are probably more the norm - the pituitary tells the body it needs thyroid hormone and TSH will tend to fluxuate. I cannot explain why your TSH would have increased while on Synthroid.*
> 
> ...


I hope you can make the best of your Birthday - Happy is it 48th? Birthday.


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## SuzieD (Feb 17, 2010)

Lovlkn said:


> I hope you can make the best of your Birthday - Happy is it 48th? Birthday.


http://www.levoxyl.com/patients/6.0_faq.asp#Q12

On Question 12 here they mention :
Some patients treated with thyroid hormone products have had allergic reactions. These include hives, itching, skin rash, redness of the face and neck, stomach pain, nausea, vomiting and increased bowel movements, fever, joint pain, wheezing or *swelling of the face, eyes*, lips or tongue, or trouble breathing.

http://www.livestrong.com/article/73595-side-effects-taking-levothyroxine/

And look at this one, eye pain again & swollen eye lids.

Although neither mentions the eye itself enlargening the first one says swelling of the eyes. I wonder if after the eye lid swells and a person continues to take the drug, can it go more "internal"? 
Another thing I'm wondering is "angiodema"? Usually you can see that, it's a more external allergic reaction but in my case I wonder if the eye is due to TED or the drug itself.

I feel very confident that one way or another I would not be in this boat had a not tampered with something that was not broken.

Also, most smart drs. I think prescribe synthroid. I have heard terrible things about the generic, how the ingredients can be off by so much.

I just hope now we can get it all under control.

When you say keep an eye on my FT's you mean the FT3 & FT4? Yes, I will. I would like to keep a close eye on now, if my dr will allow, and then like you said at least yearly.

I understand what you mean about being a hypocondriac. I too get VERY anxious when I am not "perfect". I know how I should feel, and I know how I normally feel and when something is wrong I too want it fixed immediately and am in the drs. Office a lot! I hate when they want to prescribe anti depressants. I went through a tough time in 2007 after having a barium swallow test. I got very sick & my bowel habits (shall we say) changed drastically. I felt poisoned. Instead of trying to find out what was going on with me the drs. Wanted to me on anti depressants. I told them I was not depressed, I was sick. Then they called it "IBS - Irratable Bowel Syndrome) It was never IBS!! After 15 months of a nightmare an outside lab I had gone to determined I had a very bad bacteria. Even after finding that my drs. Would not give me an antibiotic. They said it wouldn't help. I went from dr to dr until I found one that gave me an antibiotic & within 2 months I was strong & healthy again!!! 
So long story short, I have very little faith in drs now & that is sad because now I need them to help fix me. I hate being dependent on a group of people who IMO really don't take the time to understand, see way too many people to care & just don't look out of the box. It's quite frustrating!!
So youll always have graves, but I'm assuming it goes into long periods of remission? And when you say you were a raving maniac when undiagnosed, did it affect your moods as well? You said you had no pain with it right?
I know what your hubby means about the "chill pill" I have decided to up my dose just a hare for now, maybe if I can be a bit calmer I can "heal". Why won'the drs. Give you even a rationed amount of Lorazapam anymore? 
I am an insomniac now, because I am in pain & in the middle of all this unknown stuff, but I was going to ask you if you have tried exercise? Before all this happened I was an avid fitness freak. I would exercise every morning for at least 90 min. & sometimes more later with my daughter. It was my personal therapy. It made me feel good, strong healthy, and it helped me sleep like a baby!! I miss it now, I haven't exercised in a couple of months just due to the pain, I'm afraid to bounce myhead around too much due to the pain, but I have never gone this long without exercising. I know it helps me more than any drug. Just a suggestion for you. I know my daughter has trouble sleeping & when she exercises with me she sleeps like a baby. 
Thank you, I'm actually 49 today. Hopefully for the big 50 I'll be in a better place health wise.

can I ask you another question? people who have TED & graves & their eyes enlarge, as they say mine are now, they DO at some point go back right? Worst case scenario, prednisone should help? What were the details when you had optic neuritis? Was your eye touching a nerve due to it being enlarged? Or did you actually have nerve damage, which you said everything cleared up in a few weeks. I pray I am as fortunate. If mine somehow has to do with the "chemicals" of the meds, maybe it will clear out of my system.
I hope the neuro opthomologist is good & has news that can help me & that isn't bad at all. I pray for resolution quickly.
So, are you fine these days?? Other than the insomnia?
Talk to you later,


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## Kaylasly (Nov 14, 2009)

Oh wow, A similar thing has happened to me. After adding t3 to my thyroid medicine. I was stupid and took it. Now I am having trouble with my eyes. I had an MRI also and it revealed that the muscle was enlarged. I also am 46, athletic and have not been able to work out, my heart rate is really high when I move around. I also have severe anxiety. I never had this before. Above my eyes is sore and they are dry and my vision is kind of weird. I will get blurry during the day outside or in a bright store with my faraway vision I also get dizzy. Do you? I had one eye bigger than the other too. They were sticking out a little more, but now they are not. I have terrible bags above and below them. Do you have this? I would love to talk to you more. You can PM me or we can e-mail. Maybe we can get each other through this!


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## SuzieD (Feb 17, 2010)

Kaylasly said:


> Oh wow, A similar thing has happened to me. After adding t3 to my thyroid medicine. I was stupid and took it. Now I am having trouble with my eyes. I had an MRI also and it revealed that the muscle was enlarged. I also am 46, athletic and have not been able to work out, my heart rate is really high when I move around. I also have severe anxiety. I never had this before. Above my eyes is sore and they are dry and my vision is kind of weird. I will get blurry during the day outside or in a bright store with my faraway vision I also get dizzy. Do you? I had one eye bigger than the other too. They were sticking out a little more, but now they are not. I have terrible bags above and below them. Do you have this? I would love to talk to you more. You can PM me or we can e-mail. Maybe we can get each other through this!


Of Course - I PM'd you.


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## Lovlkn (Dec 20, 2009)

Kaylasly said:


> Oh wow, A similar thing has happened to me. After adding t3 to my thyroid medicine. I was stupid and took it. Now I am having trouble with my eyes. I had an MRI also and it revealed that the muscle was enlarged. I also am 46, athletic and have not been able to work out, my heart rate is really high when I move around. I also have severe anxiety. I never had this before. Above my eyes is sore and they are dry and my vision is kind of weird. I will get blurry during the day outside or in a bright store with my faraway vision I also get dizzy. Do you? I had one eye bigger than the other too. They were sticking out a little more, but now they are not. I have terrible bags above and below them. Do you have this? I would love to talk to you more. You can PM me or we can e-mail. Maybe we can get each other through this!


WOW! I have never heard of this happening before, I am so sorry it is happening to the both of you.

I guess I'll consider myself lucky that I have not had any issues since increasing my Unithroid and adding Cytomel recently to finally get my thyroid levels to where I feel finally need to be.

Kaylasly - do you have Graves? Or are you taking replacement because of Hashi's? Also, did you have eye involvement ever before?


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## Lovlkn (Dec 20, 2009)

> Also, most smart drs. I think prescribe synthroid. I have heard terrible things about the generic, how the ingredients can be off by so much.


SusieD,

I wanted to comment on this - actually as long as a patient stays on the same manufacturer of T-4 replacement there is no issue regarding being on a generic. Key point is when the prescription is filled and re-filled to make sure its the same dosage and same manufacturer.

Synthroid has a huge sales force which is why most doctors prescribe it - it's the most expensive by far and not necessarily any better than the generics. They all have different fillers which affect how people absorb the active hormone which is why you need to remain on the same brand and if you change re- test in 6 weeks.

I have been on a generic - since my surgery and most of the people I know on replacement are on generics as well. Levoxyl is a very popular generic - Unithroid is not but that's the one I take and I usually have my own bottle at the pharmacy so I can keep track of actual expiration dates.


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## SuzieD (Feb 17, 2010)

Lovlkn said:


> SusieD,
> 
> I wanted to comment on this - actually as long as a patient stays on the same manufacturer of T-4 replacement there is no issue regarding being on a generic. Key point is when the prescription is filled and re-filled to make sure its the same dosage and same manufacturer.
> 
> ...


I have to tell you I have heard this several imes from people in the medical profession. My OB/GYN told me she heard this about generic, I called an allergist & they told me that 70% of people have SOME kind of reaction & a nurse at my opthomologist said that MANY of their patients on Levothyroxine complained of symptoms, and when going off felt much better.
When reading boards on Levothyroxine I have read horror stories, which I wish I would have done my research PRIOR to going on the meds, especially they were prescribed for weight loss & not a thyroid problem. I never needed them to begin with and my new primary dr said that even that, the fact that I had a healthy thyroid and went on that stuff could have affected me differently from someone who actually NEEDED it. 
All I know is I made a HUGE mistake and I can only pray that it heals on it's own the longer I'm off. I hope I didn't permamently mess things up causing a chain reaction of issues. Whether the meds just "confused" my thyroid function, they DID make me close o HYPO, or adverse or allergic, I just PRAY every day that am one ay closer overcoming this nightmare.
The moral here is If it ain't broke, don't fix it!!! Although I am mad at myself for taking the stuff I am so angry that a medical professional, knowing this drug should not be given out for weight loss, especially a mere 5 to 10 pounds, knowing the side effects and possible complications would have prescribed it to me so openly.


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