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10/11/2010 07:39 AM

trying for a diagnosis

hbg
Posts: 12
New Member

Hi all, This might be a bit long, apologies up front.

I've been feeling exhausted since Xmas 2009, when chronic hives also showed up and about 5 pounds of weight gain. My internist ran a blood test, and found I had low carbon dioxide, a TSH of 5.4,and tachycardia (resting pulse of 105-115), but low BP. Processed paperwork for me to go on 60 days of short term disability from work. Recommended me to an endo, who said "hypothyroid", and sent me home with Synthroid. Recommended me to a cardio, who ran stress echo's, and found normal heart valve function and flow, but rapid heart rate and low BP. Sent me home with beta blockers.

First three months of resting and taking the meds...fairly good response. Still exhausted, and hives, but slower heartrate. Weight gain still going up, diarrhea and swelling in hands/feet. 3 months later, new blood draw. TSH now .8, but I feel lightheaded and shaky and still gaining weight and water. Now starting to feel symptoms of hypoglycemia if I don't eat every 3 hours. Internist runs a test for Cushings (negative) but shows "low" cortisol of 7. 3-hour glucose tolerance tests show normal results, but I crashed HARD 2 hours after the test was over and had to go home and sleep it off. 24-hour urine cortisol, low normal. Plasma cortisol tests at 9. Still weight gain. Now have gained 25 pounds in 5 months. "Meds can't be causing the swelling or symptoms you have". No change in meds. Come back in 3 months.

Lightheadedness and tingling my hands and up both arms. Cardio changes my beta blockers; tingling stops. My cardio has suggested possible adrenal insufficiency. My endo dismisses all my symptoms because my TSH is normal.

I've made an appt for a second endo opinion with a physician at Baylor in Dallas. I feel like the hypothyroid, hypoglycemia, fatigue, weight gain, etc..are all symptoms of a problem we've not found the cause of yet.

I'd appreciate any feedback on this.

hbg

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10/11/2010 07:49 AM
teri72193
teri72193  
Posts: 1264
Senior Member

Sounds like you are going through a lot. So sorry to hear about this. I know for myself I used to have hives all the time before being diagnosed, not so much anymore unless I am having at true allergy to something. I have often thought that (and keep in mind just my random thoughts), our auto immune disease tries to fight off anything that it deems as "foreign" and could cause hives or other things. This is just something I have noticed about myself. Our immune system tries to kick in, but of course it can't without aid, so I am just not sure. I am seeing a cardiologist next week to also address some of these same issues. Please keep us informed of how you are doing.

10/11/2010 10:28 AM
crz49
crz49  
Posts: 1141
Senior Member

...never had hives; have gone through the entire other list of symptoms with similar blood test results.

Was dx'd w/AI in Jan and felt GREAT until May when I took my final dose of morphine (was on it for several years for pain management, rx'd by a pain "specialist"Wink I felt better when I was on the low doses of morphine...no pain and more energy; was able to think clearly, the whole nine yards.

5 months later and tons of fatigue increased, facing my 5th back surgery Nov 29, there is still no concrete dx. "Stress", "Your thyroid functions are normal", "Your heart is fine", "You have good blood".

It's frustrating and disheartening; I sincerely hope your new endo sets you in the right direction.


10/11/2010 11:52 AM
teri72193
teri72193  
Posts: 1264
Senior Member

Corri:

I was hoping you were doing better! I am so sorry tat you are not feeling better. I might be facing back surgery too. Has it helped you at all?


10/11/2010 12:31 PM
crz49
crz49  
Posts: 1141
Senior Member

Sorry to hear you may be facing back surg, Teri. It's NO picnic.

To be honest, 3 of the 4 helped...but just a little. The last one I had levels L3,4 and 5 stabilized with a bone graph, screws and rods. I had to have a special back brace made (out of a plaster cast of my body) to wear all the time during waking hours for 3 months.

The upcoming surgery is "only" a laminectomy; I won't need a brace. HOWEVER, I SHOULD have the screws and rods put in at this level also, but I don't have health insurance. He said I could wait...but not too long.

What levels might you need the surgery?


10/11/2010 12:35 PM
teri72193
teri72193  
Posts: 1264
Senior Member

It would be double hip replacement and then I have bulging discs in my lower back that are pinching a nerve in my left hip, I can hardly walk right now. Not sure what the numbers are. That is so horrible that you have had all of that done, you poor thing, I hope that this one goes well for you Corri, I will be sending warm fuzzy thoughts your way.

10/11/2010 01:05 PM
ITeach91
ITeach91  
Posts: 1872
VIP Member

Hi hbg and welcome to our forum,

You have come to the right place to get some good information on adrenal insufficiency. It's a good hunch on your part that you are adrenal insufficient because though I am not a doctor, you have many indicators that there is a problem here.

First of all, hypothyroid can affect adrenal insufficiency - treatment for hypothyroid sometimes makes a latent condition with a low cortisol much worse. The second indicator, your blood test, came back a borderline normal of 7 (6 is the bottom of the range for an 8 a.m. test). With a 7 in the early morning, cortisol drops throughout the day so you probably feel much worse by mid-afternoon and evening!

You mentioned fatigue, usually our number one symptom but other things can cause fatigue, including thyroid situations. However, you also mention diarrhea and hypoglycemia and those are also symptoms (or results) of adrenal insufficiency. Do you ever have the feeling that your large muscles (like in your thighs or upper arms) are tight, kind of crampy? Like you have to rub them but it doesn't help? Other symptoms we have when cortisol low include "foggy" thinking, blurry vision, lightheadedness, etc. It can also cause very low bp. As far as the tachycardia, that's not the norm but we have had a couple of people here on the site who have dealt with that. Any endocrine disturbance can cause that.

The only thing that doesn't fit with AI here is the weight gain, are you sure it is not water bloat? AI can disturb sodium/potassium balance - some of us resort to eating salt from time to time to try to restore that balance, which can also make low bp worse.

The other thing I want to mention - is that some people have stated they need T3 replacement as well as the synthroid (which is T4). The first thing I need to tell you is that you need a new endo but you already know that. Don't get discouraged, I had to go through three of them before I found someone who could actually help me. The other recommendation I have for you, is because of your many symptoms, an integrative doctor might be helpful. They look at the body as a whole and often pick up on clues and diagnoses that specialists miss. I had one who helped me to prove to my endo that yes, I was hypothyroid...which should not have been a surprise since my pituitary is not working due to a cyst!

Post any questions you have. I hope you find answers very soon so you can begin feeling better.

Deb


10/11/2010 01:18 PM
crz49
crz49  
Posts: 1141
Senior Member

Hey, Deb!

I've been having those thigh and upper arm symptoms for the last 5 MONTHS...I was blaming it on my back! hmmmmm....and here I sit...new doc (not to be seen 'til Oct 26, and no endo)

scary Sad


10/31/2010 07:03 AM
hbg
Posts: 12
New Member

ITeach,

Yes my original endo tried to but me on lowest dose of cytomel (T3) but the side effects were so bad, they took me off in 4 days. Watery diarrhea, no sleep, and the shakes, but I lost 5 pounds in water. So unfortunately that experiment didn't work. I've also read sometimes, if your cortisol level is too low, it can't correctly process the T3 hormone or there is a problem in the T3 conversion.

My appt with a new endo, who is also a D.O. is on Nov 9. Hope I can get more answers. I've also purchased a blood sugar monitor to see if what I'm feeling in afternoon/evening is actually hypoglycemia or not. It gets better if I eat but it doesn't last, and I wind up eating every 2 hours or so and mostly something with sugar, not salt. I've not had any salt cravings but I've never really liked salty foods in general.

hbg


12/03/2010 07:20 AM
hbg
Posts: 12
New Member

Well, turns out the trip to the DO in November was pointless. He ran an ACTH stim test, my results tripled after 60 minutes (which I guess is good). He also ran free T4, free T3, TSH (3.4) and testosterone (all results within range but on the low side). He also did an ultrasound of my thyroid and found nothing. So his "treatment" plan was " no treatment needed at this time". Sad

I've tried to read up on RT3 issues and tried dosing with 5mcg T3 only. Seems I can't tolerate that at all...day 2 was jitters, shakes, nausea, and upset bowels. Sad I'm at a loss. I suspect I have something going on with my adrenals, but I can't get a dr. to agree with that, so I'm struggling with no help. Any suggestions? Is there a Dr in the Austin, TX that has helped anyone on this board, i.e. recognizing adrenal fatigue or insufficiency issues (even if they dont show up in labs)? I'm not even really sure I have thyroid issues -- might all just be due to low adrenal function. Really Really Frustrating!

hbg

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