Hi, they are doing all the tests for carcinoid syndrome, 5hiaa urine, methyl histamine, etc., got a full body CT on weds. I have no pain anywhere and the gi issues have actually gotten a bit better now that I am on day 10 of the xifaxan... maybe i did have a little sibo going on, but that still wouldnt explain all the other symptoms i am having :(
What test finds pancreatic cancer? a pancreas insufficiency test?
As for masto, I actually brought it up after reading about it... I have had a slight rash appearing very sporadically on my trunk, not raised, not itchy, dont even know its there unless I lift my shirt... appears maybe once every 4/5 days and might be there for 20-30 mins. then just fades.. I have kind of thought it might be related to whats going on but none of the docs I have seen (and its been many) really think much of it, derma coudlnt identify it because it never seems to happen in office, they just see pics or they would biopsy it.
I am actually seeing Dr. Akin who is probably one the the top two masto docs in the world, he doesnt really think its that because I dont have the accompanying anaphalytic reactions or allergies to stuff but he ran the tryptase any way.
I'm very sorry about your pancreatic cancer, and while it never hurts to rule things out, you can't say for certain that pg600rr's issue isn't thyroid related.
It's very unfortunate that this happened to you, but that doesn't mean that everyone with those symptoms has pancreatic cancer. I've had them myself at different times and don't have pancreatic cancer.
He already said he didn't have skin lumps.
Also, mastocytosis usually presents with skin lumps. Has your skin changed at all? Just curious as to why they suspect this.
Unfortunately your problems are not thyroid related. I spent 3 months searching down that path with no results. My story is the same as yours, felt nauseous on and off for about 7 months then it hit me. Bloating, gi issues, couldn't eat for 2 1/2 weeks,flattened fingernails from malabsorption, and everything else u described, I have some mild pain in upper abdomen on left side and middle back pain that I believe is being caused by my pancreas. Pancreatic cancer is not detectable untill it is too late. It causes low blood sugar and heart palps. You can research it a little bit and see if it fits,try gastrinomas, if so u will b ahead of the game. Best chance is early detection.which is the only reason I am telling you this, it is not to scare u. It is extremely rare in persons our age so a diagnosis is impossible. It could also b your gallbladder, mine however is perfectly fine.
Yes, most likely diabetes would have shown up in glucose blood work. Hypoglycemia often doesn't show up, unless you are having an episode of low blood sugar, which can cause the light headed, dizzy feeling.
I am def. going to bring it up when I see her... I think both diabetes and hypoglycemia have been ruled out, those would have shown up in blood sugar levels, glucose, correct? I have had a ton of blood work and diagnostic tests done over the past two months, now even testing for rare things like tryptase level for mastocytosis, etc.
Your thyroid test results would point more toward hypo, than hyper, but without an FT3, it's hard to say.
I'm glad you trust your doctor, but do be aware that even the "good, well respected" doctors often don't test/treat adequately, but hopefully, she will be amenable to testing the FT3, along with the FT4 and TSH again.
Not all hypo's have weight gain; some even have weight loss. Hypo also causes a lot of GI issues. You may be in the early stages of a thyroid condition and it could take a while for the blood tests to catch up with symptoms.
Some of your symptoms (weight loss, light headedness/dizzy) are suggestive of diabetes or hypoglycemia; has this been ruled out?
It's good that she ruled out addison's but there can be other issues with the adrenals. If addison's was the only issue, you may be okay with just the morning cortisol.
I am seeing her again this week anything you think I should ask/mention? I'll def. bring up the FT4 being on the low end of normal and maybe see if she wants to recheck it and run the FT3...
I am def. not hypo tho...never had any weight gain issues ( I would think that would be a symptom in all hypo)
awesome, thanks for the info, the endo is @ Mass. Gen and they tend to have very good docs, I like her a lot and def. have faith in her but never hurts to get thoughts on the tests.
She was strictly doing the cort test to rule out addison's and since 8 am is when its at its highest point, I guess she just wanted to make sure that number was where it should be, and didnt have to go through with the ATCH stim test. They def. have the 24 hour cort test tho.
Would my numbers point to hypo or hyper in thyroid? the problem is with what my current symptoms are, they reflect some from both ends of the spectrum..
Since this began some include:
BP lowered a bit (was around 130/85) now runs 115/70
tend to get cold hands/feet a lot
dizzy/lightheaded
when it first started, was having a lot of GI issues, wasnt eating, lost about 15 lbs. in two weeks, since then have lost 5 in about 5 weeks even though I am eating (they did an upper scope and found esophagitis and a few minor ulcers)
I have a couple of thoughts, here......... first off, just doing a morning cortisol is not going to tell you anything constructive.. Cortisol normally goes up/down at certain times of the day, so it naturally, fluctuates. Testing it only once, is a waste. We hear that the best test to do is a 24 hr saliva test that will tell whether or not your levels go up and down like they should over the course of the day. Many doctors do not recognize the saliva test, and most insurance companies don't pay for it. While your levels may be right where the doctor wants them, first thing in the morning, you have no idea what they are doing the rest of the day......
The second thing I see, is that while your FT4 is "in range", it's very low in the range; and there is no FT3 result. FT4 is not used at the cellular level; it must be converted to T3, then only a certain amount of that is used at the cellular level; the rest is bound by protein that renders is unusable, which is why you need to know the amount of the "free" T3 (unbound and usable). If you don't properly convert FT4 to FT3, your levels won't be high enough and you won't feel well.
Many of us find that we need FT4 to mid range, or higher and FT3 to be in the top 1/3 of its range.
Hi, I too have had strange symptoms going on for about 6 months similar to yours. I couldnt eat for 2 1/2 weeks in the beginning and had burping/bloating and every other symptom you described. One weird question for you: did you happen to develop any lumps under your skin? Mine are mostly on the tops of my forarms and torso area. There are many of them everywhere and doctors cant explain why. They are in the fatty tissue. They def. came sometime in that 3 week period of not eating. Have not felt good since and had every test known to mankind. My tsh was 3.4 and I have a nodule on thyroid.