Long Time Thyroid Drama

[HumStar]

I'm sure you have all heard all this before.... I was diagnosed with Graves at 24... now 50... took the Radioactive Iodine way back when.... spent a couple of years without thyroid replacement (don't ask... bad advice by caregiver).  Have literally spent the last 26 years trying to get it together physically...

Situation:  got up to 250 mg? a day Synthroid, 25 mcg? Cytomel daily.  Now: seeing a Endocrinologist who has me back down to 125 mg? of Synthroid and 15 of Cytomel.

Levels: "in the normal range"  don't have the reports

Symptoms:  Weight gain - 250 (yuck) up about 20 lbs or so... Diarrhea (we ARE sharing aren't we :)... massive joint pain, especially hands, knees & back... muscle weakness... constant headache...racing heartbeat...trouble breathing...memory glitches... concentration issues.. no energy...insomnia... exhaustion...(I know it makes no sense... I am tired, but can't sleep - unless I take Ambien)

Soooo I teach math, and feeling like this sucks.  It's getting worse....

Tests have ruled out: lupus, cushings, heart disease, asthma or any other lung issue...

Anyone have a clue? Normally I'm a very physical person, ride ATVs (not the utility kind either), snow & water skii, coach cheer, volunteer with lots of stuff, play baseball, and professional photographer.  Right now, I feel like a couch potato, cause everything else I do hurts me (like breathing or walking or watching TV), or I cramp up -muscles - and can't breathe.

Thanks in advance for any direction to investigate.  It feels like everything has been tested, but there must be something...

[HumStar]

OK.... here are my numbers....

TSH 0.19
FT4 1.00

I take 150 mcg Synthroid & 5 mcg Cytomel daily & 10 mg Zolpidem (generic Ambien) at night.

I usually take 50 mg Cozaar, but was told to stop for a while and see if my Blood Pressure went up (it has).

Lupus & Cushings Disease have been ruled out, along with a multitude of other dramas such as heart disease, lung disease, and most every other little thing.

My CT Scan (to rule out Cushings) showed a slightly prominent liver and spleen (hepatosplenomegaly) and slightly 'full, but certainly not large' adrenal glands.  Also I have a 'meningiomata like' that is suspected to be a 4.5 cm fibroid in the uterus.  I have had these before and had them removed...My gallbladder, kidneys, and pancreas are normal and my gut is unremarkable.... (I will have to get going on my Abs of Steel video soon).

My Vitamin B12 test came back with a 299.  My Vitamin D test came back with a 16.0

I have been told that I will need 50,000 IU of Vitamin D 3 times a week (injections?) and 1000 mcg of B12 daily either under the tongue or melting form or injections.  He (my endo) wants me to start immediatly.

Symptoms continue:
Weight Gain (most depressing)
Muscle Pain and fatigue
Joint Pain
Diarreha - 30 minutes or so after eating - usually pretty pale colored (ewwwww)
Headache - gets worse during the day - but is there when I wake up
Random racing heartbeat - while resting and while doing things
Trouble breathing, when walking on flat ground or otherwise
Unstability (not mental....but there are those who would argue that), but physically - I walk into the walls :) drunk style.
Insomnia - tried it without the Ambien night before last, and it didn't work... long sleepless night
Memory issues - not really forgetting things, but not remembering on time either
Exhaustion - mentally and physically
Slightly Pissed Off - feeling... is that menopause?
Dry eyes...

Have I got everything????  

Original diagnosis - 1984 - Graves - took Radioactive Idoine way back when.  Have been up and down with this since then, but lately it has been pretty rough.  Also had a hard time with loosing hair for about 4 months.  All the new stuff is about 2 inches long now and I have a lot of hair, so most people didn't notice.  That seems to have stabilized now... so I don't include it on the 'current' symptom list.

So, there you have it.  All the drama that is my life.  It sucks, I know that, and I live 5 hours from the middle of nowhere.  They still look up Graves in a book at the doctors here.  

Any clues from the experts who live this?

Thanks in advance.
Teresa

[skymax2000]

Get copies of your "normal" tests and look at it yourself. Your symptoms sound like hyperthyroidism. I have Graves/hyper. Post your numbers here.