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Need Help, Sorry So Long but need opinions.

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Old 08-15-2009, 04:39 PM   #1
Join Date: Aug 2009
Location: Albuquerque, NM
Posts: 2
LostLinz HB User
Need Help, Sorry So Long but need opinions.

Hi All,

I'm new here but I've been reading alot and you've been so helpful!!! I can't begin to tell you how much better it makes me feel to know there are others who feel just as hopeless and helpless as I do. That sounds bad I know!

I need to know what to do next so that my Doctors can't brush me off. Sorry so long but want to give you all a complete picture.

I have been sick and getting sicker since I went through puberty at age 12, I'm now 28. The last 2 to 3 years have been horrible and getting progressively worse.

At the end of June of this year I finally had to quit my job because I could no longer function well enough to do my job.

My symptoms all fit Thyroid, Addison's, Hashi's, and gosh knows what else.

I'll list my main ones.

My doctor when I was a teenager tried to brush my symptoms off on my Mom as Chronic Fatigue, my Father had it for years.

Finally when I was 16 he put me on Thyroid medication saying I had Wilson's Syndrome because my body temp has always been between 95 and 97 degrees and was gaining weight. But my Thyroid tests always came back fine. I tried the medication, a more rare one I believe because we could only find it at one pharmacy in town, L-Thyronine, really don't remember if that is the right name or not.

I took it for 2 years and it really didn't do much. After coming off it I had severe Hypoglycemia for 2 years.

My menstrual cycles have always been whacky. I skipped a year when I was 19. Now they range from 20 to 40 days apart and lately have only lasted 2 days.

2 years ago I had a 5 month episode where I could not lay down flat without becoming violently nauseated.

I am in good shape, before the last few months I walked 5 miles a day. I still walk as much as I can but it isn't much these days, after a few minutes I feel like passing out. I'm 5'11'' and on the thin side right now, food doesn't taste good lately.

My hair is falling out in handfulls.
I'm exhausted to the point I can't move my legs and arms.
Have episodes where my muscles tingle and feel paralyzed/they are un-ruly.
Heart Palpitations.
Change in appetite, I can no longer stomach meat or fatty foods.
Daily headaches.
Constant Thirst.
Swelling in hand and feet and joint pain in fingers.
My legs feel like I've run a marathon, very jello-ey.
Just getting up from sitting has me out of breath.
Extreme exercise intolerance.
I either sleep 10 hours and it's not enough or I fall asleep quick and then wake up a couple hours later restless.
Constipated so matter how much fiber I eat, I eat mostly fruit.
Heat/Cold Intolerance.
Mood swings.
Dry Skin.
High Cholesterol, though I could be the poster child for eating right, I eat nothing fatty or fried.

So here are the recent tests.

New Primary Care Doctor who I love ordered the following in early July and then referred me to an Endo.

I was fasting and these were done at 8AM.

Complete Metabolic Panel (all was completely normal)
Lipid Panel
Trig. 97 (<150)
Cholesterol 242 (<200) HIGH
HDL 64 (>40)
LDL 159 (<100) HIGH
CBC plus Differential
all normal except:
Platelets 424 (150-400) HIGH
Eosinophils 7 (0-5) HIGH

Autoimmune Screen was negative

Acute Hepatitis Panel was negative

Total T3
86 (84-172)
7.3 (4.7-11.0)
0.694 (0.40-4.5)

Vitam B12/Serum Folate
B12 was 433 (200-1100)
S. Folate was 10.5 (5.0-20.00)

Celiac Disease Panel was Negative

Urine Culture was Positive for protein

Vitamin D, 25-Hydroxy
Total of D2 and D3 was low at 22 ng/ml so they started me on prescription 50,000/IU 1x per week for 12 weeks.

Now for the next tests ordered by the Endo who I like but he's not exactly the easiest person to talk to.

These were done on July 17 at 8AM and I was fasting.

was 6 ug/dl (4-23)

was 9.7 (follicular phase 9-175)

was 27 (12-137)

was 6.7 (follicular phase 1.1-11.6)

was 7.5 (1.9-25.0)

Thyroiditis Group
Anti-Thyroglobulin was <20 (0-39)
Anti-TPO-Ab was <10.0 (0-34)

Vitamin B12
was 478 (200-1100)

was 84.5 (0-87)

was 272 (117-329)

Metanephrines, Plasma
these were normal

Methylmalonic Acid tests were normal

Urine Microalbumin/Creatinine Ratio
was 54.8 (0.0-20.00) HIGH

So after these tests and my continued worsening symptoms the Endo agreed with possible Addison's and ordered more tests including the ACTH Stim Test. He is also going to be sending me for a muscle biopsy to test for Mytochondrial Myopathy.

Just had the stim test plus others yesterday August 14, only have some of the results so far but here they are.

This was all done fasting, and base levels were taken at 7:55 AM.

Base ACTH: Pending

Base Cortisol was 9.8 ug/dl
30 minute Cortisol was 21.6 ug/dl
60 minute Cortisol was 24.8 ug/dl

He also ordered these tests that they drew from base levels at 7:55 AM:

Free T3 was 2.1 (1.6-5.6)
FT4 was 0.9 (0.8-1.6)
TSH was 0.984 (0.40-4.5)

Manual ESR was 14 (0-20)

Iron and TIBC
Iron was 33 (45-150) LOW
Iron Sat. was 8 (15-50) LOW
TIBC was 402 (228-428)

Estradiol Pending

Ferritin was 29 (12-137)

Acetylcholine Receptor AB Panel is Pending (not sure what this is)

Re-Tested Vitamin D which is up now to Total = 55

also tested CK which was 69 (20-212)

I will update these when the rest come in on Thursday this week.

Now in the meantime last weekend my balance became compromised. I don't want to say I'm dizzy but my equilibrium is off and I fell while on a walk. Went to my primary and now she's also worried about my symptoms pointing to MS!!! So she scheduled me with a Neurologist which I can't get into until October 3rd.

I don't see the Endo again about these results until September 8th.

Can you all please give me your opinions based on the results so far.

I need to have as much researched as I can before I go back to the Doc. He's very hard headed and opinionated and won't like me much telling him what I think so I need my ducks in a row.

I will post my ACTH Stim results on the Addison's Board as well.

Thanks so much and I hope to get to know you all.

Last edited by LostLinz; 08-15-2009 at 09:59 PM.

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