Questions and long - sorry!

OmShantiOm · 05-04-2008, 03:20 AM

I was dx'd with thyroid problems about 4 years ago when I was told it was enlarged when I had an ultrasound. My endo put me on synthroid and met. Well, the met had me going to the bathroom constantly and the synthroid made me even more tired and I lost my vision twice for about 5-6 hours. I later found out there's a rare side effect that bulges the optic nerve and you can't see. I stopped the met first and couldn't handle the synthroid so I stopped that also.

My endo said I had to stay on the synthroid and I refused. She threatened me with a biopsy and I told her she could stick and cut me all she wanted but I'm never going back on the meds. I haven't been seen in 3 years.

Now, I'm miserable. The fatigue is so bad that I keep missing work, my skin is dry, hair is thinning, my feet and ankles are so swollen that I've had 3 ultrasounds to make sure I didn't have DVT's or blockages, and I'm having joint pain.

I went to my GP last week and he did all kinds of labs as he thought I had CHF. My labs were even better then they were 3 years ago in most areas. I am still pre-diabetic and he said my thyroid labs looked good. I don't know the numbers but I know 3 plus years ago he said the same thing and my endo did some different labs and dx'd me. My GP sent me for an ultrasound of my thyroid and I'll get the results on Monday.

I have an appt. with a new endo but it's not for another 2 weeks. I am on the cancellation list and I'm not sure how much longer I can wait. I am so wiped out that I'm not that functional. The good news is I'm not depressed.

One funny thing - I've been on hypertension meds for about a decade. I stopped them several months ago as they made me dizzy and I monitored my B/P and it was normal. My GP took it and can't figure out what happened as I've gained weight and stopped working out but I no longer have high blood pressure!!

Sorry for the long post but I don't know much about the thyroid and was wondering if anyone knew of any alternatives to synthroid?? I can't take it as I can't risk losing my sight while driving, etc. My old endo said there weren't any alternatives and I'm hoping something has happened in the last 3 years to change that. I'm sure my new doc will know but I'm kind of freaked out about my options. I really, really want to feel better.

beekerbutt · 05-04-2008, 05:24 AM

I don't really have any answers for you.

I'm on Levothyroxin, but I think it's the same as Synthroid. I've never had a problem on it.

Met did cause me some side effects but it was nausea and "bathroom issues" only.

Hang in there!

Renee3600 · 05-04-2008, 10:25 PM

Have you tried Armour? Some people respond better to it. It has T3 and T4.

OmShantiOm · 05-05-2008, 05:18 PM

Thanks for the replies. I must say I feel so much better knowing people have the same symptoms as I do. I was reading some of the posts the other day and know not to worry about my swollen legs, ankles and hands.

I am vegan so the Armour and "natural" synthroid is not an option for me. I think I may have to try the Synthroid again and see what happens. If I can't handle it, I'm up a creek without a paddle as I can't find any alternatives. I did start back on a raw diet. That really helped me before so I'm hoping it does now also.

mommavia · 05-05-2008, 06:43 PM

Oh, Honey, you are probably feeling severly hypothyroid! That stinks. Do you know what tests were run by your GP for your thyroid?

There are other brands of levothyroxine sodium. Levothyroxine is the drug name of the brands Synthroid, Levoxyl, Levothroid, and Unithroid. There are other alternatives to Synthroid, but not to the drug unless your go with Armour (which isn't an option for you since you are Vegan). As far as I can tell, they all have the same possible side effects, but you may be able to handle one better than the other. Definately ask the endo about this.

A good place to start finding information is www.endocrineweb.com.

Hang in there!
Cynthia

LaTejanaFria · 05-05-2008, 07:38 PM

Hi OmShantiOm!

I hope you're finding information here that helps you. I'm on a Thyroid Support that appears (to me, you would know better I) to be ok for your diet:

Thyroid Support Px (http://wilsonsthyroidsyndrome.com/Pr...thyroid_px.htm)

I've been taking it for about a week now and it's made a huge difference in my energy level. I got it from my naturopath.

vicandla · 05-05-2008, 07:49 PM

armour thyroid saved my life, Please go google Armour Thryoid

OmShantiOm · 05-05-2008, 08:23 PM

Thanks again for the replies. I've been a nervous wreck for a few days and am starting to calm down.

Mommavia - I know my GP did T3 and T4 and said they were normal but as I wrote in my first post, that's what happened 3+ years ago yet I was dx'd with a goiter in an ultrasound. (why do I dislike that word so much?) My endo did more labs and said it showed I was hypo. I am waiting for my GP to call me back with the results of my thyroid ultrasound from Wed. I'm anxious to see my new endo and have more labs done and see what he thinks. Thanks for the link! I will check it out when I get home.

LaTejanaFria - thanks for the link. It looks vegan as it's in vegicaps. I will track them down and ask to make sure. I would give just about anything to be able to stay up for longer than a few hours so increased energy sounds great to me!

Vincandla - I'm vegan and don't use animal products so Armour is out but thanks for the reply.

vicandla · 05-05-2008, 10:16 PM

They have a man made T3 Cytomel it might work for you.

mommavia · 05-06-2008, 02:55 AM

Quote:

Originally Posted by OmShantiOm

Mommavia - I know my GP did T3 and T4 and said they were normal but as I wrote in my first post, that's what happened 3+ years ago yet I was dx'd with a goiter in an ultrasound. (why do I dislike that word so much?) My endo did more labs and said it showed I was hypo. I am waiting for my GP to call me back with the results of my thyroid ultrasound from Wed. I'm anxious to see my new endo and have more labs done and see what he thinks. Thanks for the link! I will check it out when I get home.

Ah, if a TSH wasn't checked then you very well could be severely hypo and he'd never know it! When I was diagnosed as hypo several years ago, my T3 and T4 were normal, but my TSH was over 100. You read that right, over 100. Without the TSH being run, we wouldn't have known. The endo likely ran a TSH as well which was probably the pointer to your hypo-ness. I am certain that your new endo will run a whole thyroi panel including antibodies to determine what is going on.

Cynthia

OmShantiOm · 05-06-2008, 09:01 PM

I got my lab results from my GP and it's no big deal. My T4 is 9.6, T3 is 35.1, and my TSH (I didn't know he'd done that) is 1.090.

My ultrasound showed subcentimeter hypoechoic nodules/cysts noted in both thyroid lobes. (whatever that means!) It goes on to give their sizes. It is the same as it was in 2005.

I thought the results would be really abnormal for me to be feeling this sick. But, I don't know that much about all this yet and know that I need further testing.

My report from my last endo in 2005 said the goiter could be secondary to hypo or hyper and we would do further testing. I don't remember what the results were and the rest of my chart is in storage and will take weeks to get back. It also stated she suspected Hashimoto's and would start Synthroid to suppress the thyroid cysts.

All I know is I am so fatigued that getting up in the morning is difficult. I hope they figure it out and fix me!

Somewhat Damaged · 05-07-2008, 09:21 PM

Quote:

Originally Posted by OmShantiOm

I got my lab results from my GP and it's no big deal. My T4 is 9.6, T3 is 35.1, and my TSH (I didn't know he'd done that) is 1.090.

My ultrasound showed subcentimeter hypoechoic nodules/cysts noted in both thyroid lobes. (whatever that means!) It goes on to give their sizes. It is the same as it was in 2005.

I thought the results would be really abnormal for me to be feeling this sick. But, I don't know that much about all this yet and know that I need further testing.

My report from my last endo in 2005 said the goiter could be secondary to hypo or hyper and we would do further testing. I don't remember what the results were and the rest of my chart is in storage and will take weeks to get back. It also stated she suspected Hashimoto's and would start Synthroid to suppress the thyroid cysts.

All I know is I am so fatigued that getting up in the morning is difficult. I hope they figure it out and fix me!

If she suspects Hashi's (which might explain normal labs while you're feeling so crappy), you need to have antibody labs done. You want to make sure they do both Anti-TPo (anti-thyroid peroxidase) and TgAb (thyroglobulin antibody).

OmShantiOm · 05-15-2008, 05:52 PM

I saw an endo from Cedars Sinai yesterday. It turns out in my labwork I had done last month I had a Free Thyroxine Index test done and it's normal. He said I have all the symptoms of hypo and he would put me on Synthroid but since I had the reactions on it, he doesn't feel it's safe to try it again. I told him I was vegan and he said that was a good thing. Then I said that meant I won't take the animal thyroid and he acted as if he wasn't even thinking of putting me on it.

He said there's nothing that can be done for me and I can come back in a year for blood work and a repeat ultrasound. I asked what about the swelling and fatigue, etc. and he said he had no idea.

Now I have no idea what to do. I was thinking about seeing the endo my GP had referred only because she's female. I'm not sure why that might make a difference, but maybe it will. I am also going to look into alternative therapies and see what the options are. I feel so stuck right now. I'm in my office exhausted and looking at my cankles.