How About That? I do have thyroid issues.

DebE13 · Post by **DebE13** » Sat Jul 27, 2013 5:16 am

I finally heard the words I've been waiting to hear for years- "You should have had your thyroid look at years ago." So much of my health has been wasted on doctors that did not listen to me or did so half-heartedly. I have no answers yet but have found a wonderful endo who actually took interest in me. I am disappointed that due to scheduling it is going to take until October 3rd to get a plan in action but I will again keep calling for cancellations. I spent over an hour with him looking at the ultrasound pictures of my thyroid, got a brief examinations, answered a ton of questions, and watched him draw lots of diagrams while explaining anything and everything about the thyroid. He even has a sense of humor- what a keeper.

I have a fine needle aspiration scheduled for September (what a long wait) to rule out cancer on the nodule on my thyroid and an MRI scheduled for August. He wants to scan my head to be sure the pituitary is ok. My T4 is higher than it should be (didn't get the copy of the labs yet) and he said something about my TSH not working right. The brain fog is such a treat, I knew I should have written it down as soon as he said it but I was so interested in everything he was talking about I didn't want to interrupt. Anyway, he wants to be sure there are no nodules on the pituitary that may be producing their own TSH and causing problems.

I had blood drawn again and I must have been with the scheduler for over thirty minutes trying to get my lab order right. Part of it was a new system they were working through but apparently the labs are not the regular run of the mill kind and she wanted to be sure all the instructions made it down to the lab correctly. There are some that go to Mayo which I found interesting. The following was on my lab orders: TSH, T4 free, T3 free, T7 (thyroid index T7 for OB), HBR (heterophile blocking reagent), prolactin, Misc. test for Free T4 by equilibrium dialysis (send to Mayo), and 2nd Misc. test for alpha subunit pituitary glycorprotein hormones- serum 903 with a note to the lab to calculate TSH to alpha subunit molar ratio.

Any comments about what the above labs are checking for would be appreciated. Looks like my summer and most of fall will be spent rationing my time since I continue to have very little energy to do even the most basic daily chores. At least I'm headed in the right direction!

JFR · Post by **JFR** » Sat Jul 27, 2013 5:28 am

Hi Deb,

I have no knowledge to add but am very happy you finally found a doctor to listen to you. It's both encouraging (finally you have found someone willing to help you figure this out) and discouraging (that so many doctors simply didn't listen to you or take you seriously).

Jean

Post by **tex** » Sat Jul 27, 2013 9:27 am

Hi DebE,

Well how about that? Finally, things are going your way. I don't have any insight to add, except to agree that your doctor seems to know what he's doing, so I can't help but be very optimistic that he's going to get to the bottom of your long-standing thyroid issues.

I agree that's a long wait before treatment can begin, but at least now you have something postive to look forward to.

Best of luck with this,
Tex

MBombardier · Post by **MBombardier** » Sat Jul 27, 2013 4:36 pm

Deb, you should probably ask him to do the two antibody tests to see if you have Hashimoto's. A good thing about them (if you do have Hashi's) is that as you treat and your symptoms improve, you can see if what you are doing is also lessening the antibodies' attack on your thyroid.

Marie · Post by **Marie** » Sat Jul 27, 2013 8:28 pm

DebE,

I'm sorry you've had to wait so long to find a doctor with a comprehensive understanding of the thyroid and pituitary, and one really willing to listen to your symptoms. With that being said, congratulations!!!!!!! It seems you're finally going to get some good insight. Thanks for mentioning the tests ordered. I may ask my endo about those, particularly the pituitary one.

Wishing you success ahead!

Gloria · Post by **Gloria** » Sat Jul 27, 2013 8:42 pm

Great news, Deb! Hopefully the end of your long journey is almost over.

Gloria

DebE13 · Post by **DebE13** » Sun Jul 28, 2013 1:26 pm

Thanks all! I've had a very odd weekend. It may not be the best way to describe it but I feel very disjointed. Yesterday I had a productive morning but fizzled early afternoon. I pushed myself to get some around the house stuff done and took a nap at five. Well, I didn't wake up until 7:30 pm so I missed dinner. I'm afraid to eat after 6:00 because of my MC. I really couldn't shake feeling tired so I watched a bit of tv and was in bed before nine (and I wonder why I don't get anything done). This morning I have the same tired feeling. I had to finish some yard work and got a bit shakey and just feel out of it. If I close my eyes I almost feel like I'm in a boat- it's a constant movement. I'm feeling like I'm three seconds behind myself and can't concentrate long enough to get stuff done. I gave up balancing the checkbook because it was just too hard to think. I'm also finding I'm aggravated quite easily but figure its just the situation, although its over things that wouldn't normally bother me. It's odd because somewhere inside is the me that's on top of things and realizes what's going on but I'm stuck in a body that's moving at a snails pace and I can't change it. I feel like I have a buzz going but I don't drink and its not pleasurable.

I had an appointment tomorrow for the MRI but postponed it for a few weeks when I found out the biopsy couldn't happen until September. Also I didn't want to ask off from work again. I think I may call and see if they still have that opening then call the endo's office and beg to get in sooner. Getting all the results and working out a plan in October seems like something I can't wait for. Maybe if I talk to the nurse I will have better luck than with the schedulers ??? It's worth a try at least.

WD has become so bad I started entocort today. Disappointing and I'm a bit nervous to see if it looses its effectiveness or not but there's so much else going on I think I need to focus on my thyroid then my MC. I have a full bottle so I might as well try to find some relief there.

Post by **tex** » Sun Jul 28, 2013 2:35 pm

Hi DebE,

I'm sorry to hear that you're having those symptoms. Since you're having WD, I'm wondering if your neurological symptoms, irritation,etc., might be due to a potassium deficiency, or possibly a deficiency of some other electrolyte. Can you eat bananas? They're a good source of potassium if you can tolerate them and you happen to have some available.

Are you eating enough? Could hypoglycemia be causing some of your symptoms?

I hope you feel better soon.

Tex

DebE13 · Post by **DebE13** » Sun Jul 28, 2013 3:50 pm

Thanks Tex,

I think bananas are ok. It's so hard to tell what does and doesn't bother me because I had WD even while on entocort but had somewhat Normans too once in a while. I eliminated bananas for a while and noticed no difference in my habits. I've not had a problem eating at all, probably the opposite. There are times I'd be better to skip a meal to let my guts rest but I am driven to have breakfast, lunch, and dinner with snacks. I've been trying to just stick to 3 meals to give my digestive system a rest between meals. When I feel good I tend to munch all day long, at least when I'm not at work.

I am at 138 lbs right now and at 5'3" I could even stand to loose a few pounds but is not a priority to me at this point.

I really don't know. I figure I'll wait and see what happens with the endo and hopefully things will start to fall in place and then focus on finding what's left in my diet that's causing the WD. I'm hoping I'm not one that will need meds for life but I'm disappointed I didn't have better results after stopping the entocort. Although, I'm not ready to give up on the idea of managing my MC through diet alone.

I'm in a hurry up and wait mode.

Leah · Post by **Leah** » Sun Jul 28, 2013 7:22 pm

I would definitely try to get the tests and in to see the Endo earlier. You should call and explain exactly how you are feeling and tell them you are a bit frightened. ...That might get them movin' a bit faster for you.
hope you get to the bottom of all this soon.
Leah

carolm · Post by **carolm** » Mon Jul 29, 2013 8:57 pm

Deb-- I can't help but feel optimistic for you as your doc looks at all the thyroid issues. Hang in there. I'm sorry about the WD. Entocort should help. Try to stay hydrated while on steroids and like others have said take vitamins. Keep us posted.

carol

DebE13 · Post by **DebE13** » Tue Jul 30, 2013 4:38 am

Thanks Leah, I spoke with the nurse and the best she could do was Sept. 9 with a follow up on the 12th. It still seems like forever but is much better than Oct 3rd.

Thanks Carol, as much as i wanted to stay off entocort no matter what, i just cant handle everything thats going on right now. It's a real stress on the family when I never have a good day. Although, it has been years with the thyroid symptoms so I cant give up a month shy of finding answers. But as you know, giving up isnt an option since it wont change the situation.

brandy · Post by **brandy** » Tue Jul 30, 2013 5:51 pm

Hi Deb,

Thanks all! I've had a very odd weekend. It may not be the best way to describe it but I feel very disjointed. Yesterday I had a productive morning but fizzled early afternoon. I pushed myself to get some around the house stuff done and took a nap at five. Well, I didn't wake up until 7:30 pm so I missed dinner. I'm afraid to eat after 6:00 because of my MC. I really couldn't shake feeling tired so I watched a bit of tv and was in bed before nine (and I wonder why I don't get anything done). This morning I have the same tired feeling. I had to finish some yard work and got a bit shakey and just feel out of it. If I close my eyes I almost feel like I'm in a boat- it's a constant movement. I'm feeling like I'm three seconds behind myself and can't concentrate long enough to get stuff done. I gave up balancing the checkbook because it was just too hard to think. I'm also finding I'm aggravated quite easily but figure its just the situation, although its over things that wouldn't normally bother me. It's odd because somewhere inside is the me that's on top of things and realizes what's going on but I'm stuck in a body that's moving at a snails pace and I can't change it. I feel like I have a buzz going but I don't drink and its not pleasurable.

This sounds like my life last year. (to a "T"). Routine tasks on the job that normally take me a minute on the job took about 20 minutes last year--for week after week after week. Suggest read the recent metanx threads at top of forum. Getting my iron back up also helped with the brain issues. Please note I don't think my situation was thyroid related.

Sounds like your new doc will be hopefully getting to the bottom of things.

Regards, Brandy

DebE13 · Post by **DebE13** » Tue Jul 30, 2013 6:29 pm

Thanks Brandy, I will keep that in mind. Whatever the cause, I just want it corrected but its good to know that the thyroid might not be it. Figuring out and managing MC is tough enough.....

Today I had to take my son to a specialist 2 1/2 hrs from home one way and I didn't think I was going to be able to drive after 20 minutes behind the wheel. Again, the equilibrium thing made me feel like i was going to drive into the ditch. The lines on the road and pavement whizzing by made me very light headed and brought on a bit of motion sickness. At a point I was going to pull over because I was not confident of my ability to keep my passengers safe with me behind the wheel. That led to a bit of I internal frustration since this trip was about my sons health, not mine and I didn't want any attention put on me. I was able to drive as long as I didn't keep my gaze in one spot for any length of time. It seems everything peripherally causes me to feel off balance.

It makes me want to jump up and down and tell them I need to get in NOW but since they're the first to actually listen to me I don't want to start off on abad foot by being a pain since they already bumped my appointment up.

Now that I'm home safely on my couch it seems almost comical how uncomfortable my trip was. If it wasn't the tippy driver feeling it was a sharp pain in my shoulder blade that wouldn't go away. The only way I could tolerate the sharp pain was to wrap my left arm around the headrest while driving. To make it worse, my hemorrhoids didn't care for the five hours on my seat. I squirmed the whole time. I must ave looked like an idiot! I guess if you are in a Mom mode you do anything.

I have my MRI tomorrow so I'm actually glad I'm feeling so crappy. I hate to think of all the bad, scary things that it could be but hopefully it will offer some insight to what's going on. A previous doctor advised me against an MRI because of the expense and that it could open up can of worms. I'm still trying to get a handle on that comment.