I hope that someone can offer me some advice - I feel like I'm running out of options. Here is my history:

Diagnosed 1989 with MVP
1990 experienced severe fatigue for the 1st time.

That fatigue only lasted a short period of time and then would come and go until about 1998. I have experienced extreme fatigue for about 5 years now.

I have had my thyroid checked numerous times, B12 deficiency checked, anemia, menopause, hormone levels and others that I don't even remember. My Doctor finally sent me to Rheumetologist and one of the tests revealed an elevated CPK enzyme. I had an EMG done but everthing was normal.

I have pain in both shoulder blades, goes through to my chest, sharp pains that run across my chest, pain in my left arm, pain that runs down my left side. I have had shortness of breath, and a different type of palpatation than I usually have.

I am a healthy person in all other aspects, normal blood pressure, normal cholesterol, normal weight, and very rarely get sick. It's just this fatigue that I am having a hard time dealing with. There are so many things I want to do but just can't because of the fatigue.

I went to the Rheumetologist in November, had to wait six weeks to have the EMG and now have to wait 4 more weeks to go back to the Rheumetologist. I'm running out of options-it seems like whenever I would go to my regular Doctor I would have to tell him what I want done. I just want my life back.

Any advice?

Hi,
You say you've had your thyroid checked, but what did they check? If they just did a regular thyroid panel you can have normal results and still have a thyroid problem. If you have never been checked for thyroid antibodies I would request that, as well as FT3 and FT4. Do you have any other symptoms that may be thryoid related? cold or heat intolerance, muscle aches, dizziness, brain fog, forgetfulness, weakness etc.

When I had my thryroid checked in August, my TSH, T4, T3 and Free T4 was checked. The Rheumetologist checked my thyroid in November but I did not ask what specific things he checked. He was very familiar with thyroid disease because he said his wife exhibited the same symptoms I had and he discovered she had a thyroid problem. I will call and see if the anitbodies were checked. I do stay cold most of the time, muscle aches I have (my CPK enzymes came back elevated) and I do have weakness. It is so irritating to want to do things but cannot because of the fatigue and of course like many people that post on the board-the Doctors just brush you off.

With those symptoms there is a good chance you have a thyroid problem. Chances are they did not check for antibodies, many many people have tons of symptoms and their thyroid results are "normal" and after a lot of suffering they finally get the antobodies checked and find they have thyroid antibodies.
I too had normal results with a lot of symptoms, my reg doc saw nothing wrong, sent me to an endo for a blood sugar problem and she immediately sent me for more testing on my thyroid and found I had antibodies.

Have you ever had your blood sugar checked? Thats another thing that can cause those same type symptoms and low blood sugar is common with MVP from what I have found out.

Right now I am waiting for test results on my heart, wore a monitor for 24 hours and had an Echo done, not sure what I have but I have been getting skipped beats with a strange feeling in my throat, my brother has MVP so we suspect thats what I have.

Hope you can get some answers, the fatigue is not fun, been there done that, too many times, still get times when I feel like I just need to sit and have no energy.

Take care :)

DEA-
Thank you for your response - I'm sorry I haven't responded sooner.

I was not able to reach my Doctor last week but will try again on Monday. If the antibodies test was not done, I will request that one be done. I have read some about the antibodies and found that it comes in waves, which could explain why there are some days I cannot get off the couch and other days I'm fine. I am so tired of the fatigue I'm tired of the years it has taken away from me. What type of medication do you take for your thyroid and how long did it take for you to start feeling better?

Have you heard from your test results? I hope everything is fine.

Take Care.

Hi,
You are right about the antibodies attacking in waves, even when you are on meds it still will happen, but not as bad.

I started on Unithroid about 2-1/2 years ago, felt o.k., not great though for about 1-1/2 yrs, then this past summer my reg dr changed me to Thyrolar which is a T4, T3 med because my FT3 levels were low. I still was having problems so I went back to my endo, he took me off Thyrolar because I then had too much T3 and put me back on the Unithroid and added Cytomel which is T3 but not as much as I was getting in the Thyrolar. I have been on the new meds now for about 8 weeks. I did notice a lot of difference once on a T4 T3 combo.

I have Hashi's, so I have the antibodies, I still don't feel real good, some days are better, some are worse, but I don't have all the symptoms I did have before starting on meds and I don't get colds as often, before being on meds I would gets colds all the time and every winter I'd get the flu. Also I am hypoglycemic so that adds to the feeling crappy :(
If you have a thyroid problem and they put you on meds, it will take 4 to 6 weeks for them to really kick in and then you will notice the symptoms subside slowly, but it will get better.

I am suppose to go to the cardiologist tomorrow to find out the results of the tests they did. Yesterday and today the skipping has been a little worse :( maybe its anxiety over the upcoming results :eek:

Take care, hope you feel better soon.

DEA-
Have you been diagnosed with MVP or is that what the tests were for? I know when mine was found I was very short of breath-felt like I could not get enough air into my lungs. Also, I had palpatations-mine only acted up when I was in severe stress, my brother dying and then again when my mother was dying. The shortness of breath has started again - I don't know why and the palpatations are different. Maybe it is all tied in together.

I feel bad about complaining because I don't have close to the problems that you and others have-I am healthy except for the fatigue. But the thing about fatigue is when you are so effected by it it effects your whole life and you are not able to do anything, a nap doesn't help. When it is the worst, it feels like when you are very sick with the flu or a virus and your energy is zapped. Usually the next day after one of these episodes I feel better but tired and weak. But at least I can function.

Hope everything goes well tomorrow.

Hi :wave:
No I wasn't diagnosed with MVP yet, that is what the tests have been for, to see if thats what I have.
I did go to the doc this morning, he said its not MVP, but I have extra beats in the upper and lower chambers, he said its nothing serious and suspects that my thyroid is causing it since I have had a lot of fluctuations with my thyroid lately and he said the dizziness I have been getting is most likely the thyroid also.

I think that if your breathing problems and palpatations are different than before that is may be your thyroid also, breathing problems was one of the main symptoms I had when I was diagnosed with thyroid problems.

I know what you mean about fatigue, its absolutely no fun and does affect everything, when you feel so tired and worn out its hard to do anything.

I hope you will be feeling better soon :)

DEA-
I'm glad for you that it was nothing serious. I still not have found if my antibodies were tested. I called the Doctor's office today to find out but the lady that answered the phone said she was the only one there and she was trying to do everything. If I don't hear anything in a day or two I will try again.

I want to explain my fatigue to you to see if this is how you felt:
My fatigue is so bad that I don't even feel like talking on the phone, I can't do anything that requires thinking, such as paying bills, balancing a checkbook, etc. Saturday I probably was not off the couch more than 3 to 4 hours out the 15 hours I was up. I had so many things planned for that day that I really enjoy but COULDNOT do them. Sunday I was feeling better and got alot of my regular work done.

What it feels like when I am so fatiqued is like when you are sick with a virus or the flu and you don't have energy to do anything and don't feel like putting up with anyone. The next day I am still a little tired but I can function, it feels like with just a short nap I will be fine. I was also a little weak but as the day progressed I was much better. It feels like you do when you're getting over being sick. Today was okay, not a real productive day at work but an okay day.

Yep, that is a lot what it is like, you just don't feel like doing anything. I know I have read other posts on the thyroid board where others have said they were sooo fatigued, some hurt and could barely get out of bed. I had a lot of weakness, just felt like I couldn't even stand up for any length of time.

Hope you can get some answers from your drs office, and ask for what the results were of the last tests they did on your thyroid and the lab ranges from that lab, sometimes they say they are normal, but a lot can depend on where in the range they are.

Take care, :)

Thanks - I will let you know what I found out!