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Avatar universal

At my wits end...

I am very upset with doctors. I have hated to go to doctors for the last 10 years because they just treat the symptom at hand and don't want to listen that they are recurring symptoms. When I explain my fatigue, they act as if I'm lazy. And since I have a diagnosis of bipolar (under control for 12 years and followed by a psychiatrist closely) they seem to think that everything is in my head. I do know this because, even though they won't say it to my husband or my face, it is in their write-ups.
About 3 months ago I was diagnosed with a B-12 deficiency (my labwork came back as 155). The doctor said that this explained all of my complaints: extreme fatigue, severe diarrhea (>8 times/day), shaking extremities, heat intolerance, vomiting, and migraines. I also had severe lower back pain and a constant low-grade temperature around 99.5F (my normal is 97.2F). This all came shortly after I was married so I had a witness this time to all of the yuckiness. My husband was the one that convinced me to try the doctors again, particularly since we are going to start planning a family.
I had a B-12 shot and nothing happened. About 2 weeks later we went back and were referred to a gastroenterologist for the diarrhea. The GP was worried about pernicious anemia. The doctor did a colonoscopy, upper GI series, and a small bowel series. Nothing seemed to be out of whack except I had GERD and was diagnosed with IBS.
But that did nothing to stop any of the symptoms and they just continued. They also did biopsies and did not find anything wrong. Blood work ruled out Celiac's disease. Thye said that the pernicious anemia was ruled out by one of the biopsies.
So I was back to square one. I tried to deal with everything myself and continued the monthly B12 injection. After 3 months it was up to 200 but I was still having all of the original symptoms. I also had a high WBC count so the GP sent me to a rheumatologist. After testing me for fibromyalgia he didn't want to diagnose me with it due to a lack of "certain tender points".
I am back to square one yet again. My husband won't let me give up but I am so frustrated. Is there any advice that you could give me? The symptoms are really bad. Plus, I chronically get sinus infections and bronchitis. I am worried that I'll get one of these on top of everything! :(
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Avatar universal
Actually, I have my last test results now. I am going to a doctor in NJ because the constellation of symptoms plus my history suggests disseminated lyme disease! Haha - it took my wonderful gynecologist to suggest this when I went in for spotting that was a bit much compared to normal. She said that my cervix was not even 1/2 the thickness it should be at that point in my cycle. I was shocked. She said that it isn't able to heal itself and that the only other patient she'd seen with the same thing and my constellation of symptoms was a case of disseminated lyme. We took over an hour and a half to review my labs, talk about my history, and then her explaining why my B12, vitamin D and cervix were problematic. Most of this is because of the way the vitamins and other hormones like estrogens are being processed (or not processed). Thyroid issues are also part of the whole complex. She truly made my day simply by talking to me. What really surprised me was that I was an 'emergency' squeeze in at the office and she took SO MUCH TIME with me. She also told me that if they diagnosed it as lyme, she wouldn't mind being my primary care physician here.

My Thyroid Panel
TSH f      2.470 mcIU/mL
TBI         1.4 TBI UNITS (this is only slightly high and I don't even know what it is)
T4           9.3 mcg/dL
T3 Total   161 ng/dL
FT4I         6.6 mcg/dL

She also said that she was up-ing my B12 to once a week! I was so happy and it has gven me some extra energy! I was so happy for the entire day. Of course I over did it and have been almost comatose since wednesday! :(
By the way - I haven't gained or lost any weight. Completely maintaining. Even though I'm not eating nearly as much as I was. That's why the GI doc said "you certainly don't have a malabsorption problem because you are overweight.". It really angered me. I weigh 151 lbs at 5'1" but anyone that looks at me thinks I'm about 130 because of where I carry it. I also have (had) high muscle mass from 15 years of gymnastics.
Helpful - 0
865758 tn?1285952904
I too am a thyroid sufferer and let me tell you when I first read your post I immediatly thought of the thyroid.  I have many of the same symptoms you have.  I went undiagnosed for 7 years because there is such a controversy of what is considered "normal" for a thyroid.  If you do not kow your resutls, I would encourage you to get a copy.  I was told for a LONG time that mine were normal when in turn most doctors don't do the appropriate tests and don't know the accruate "normal" range.  If and when you get a copy of your results I would be happy to give you my advice.  Good luck!
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Avatar universal
Hi.
On reading this post i automatically thought thyroid?
Then you said your THI was a little high, what is a THI, as i am a thyroid sufferer and have never heard of a THI, do you mean TSH?

Have you had your adrenals glands checked?

May i ask have you either gained or lost any weight?

Have you had an ANA or DNA antibody blood test done?
Low vitamin D and B12 Deficiency can go along with thyroid disease.
Also have you had any thyroid antibody blood tests?

Sorry to ask a lot of questions its just im trying to get a better picture, just so i can help you.
Good luck
Nicola
Helpful - 0
Avatar universal
Yes, twice! My thyroid results (complete panel) came back normal except my THI was one tenth of a point high. My doctor said it is just fine!
I had to go back to my rheumatologist because I started having muscle spasms that pulled so hard they felt as if they were pulling out my bones from the joints. I now can't even hang my arms because they feel like they are pulling. The spasms have gotten so bad that when I turn my neck I see black spots so big they look like bugs.
He did tell me that my Vitamin D was low and that I had osteoarthritis in my joints. But nothing more! I am ready to give up and just live like this!
Helpful - 0
1393451 tn?1282878028
Has your doctor done a complete Thyroid panel? I only ask because a lot of the symptoms you describe a friend of mine had.
Helpful - 0
Avatar universal
Unfortunately, I can't help you, but I can understand where you are completely. I'm kind of in a similar situation. It is *really* frustrating when they assume that having a mental illness means you can't have anything else, too.
Helpful - 0
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