Hi. Posting on the Brain Tumor thread may be a little, but I was interested in anyone weighing in on early symptoms of pituitary disorders.
Symptoms started with "pulling my back" in June 2010. Before that, I noticed more soreness after workouts & my muscles were tighter. After the muscle pull, the back pain never went away. It is soft tissue. Although there are some small bulging discs & mild degenerative changes these are not the cause of the pain. The fascia is rough, not smooth (not just on my back but just about everywhere… getting tendonitis in places & am loaded with trigger points. However, I do not fit fibromylasia (sp?). I now see a very, very good PT and he found that my sacrum is being pulled (rotated) by ligaments & the spine is following. No clue how or why that would happen but undoubtedly a big source of the trigger points & soft tissue pain in that area.
Then, 2 months ago my arm went numb... then 2 days later my right foot... then 2 weeks later my left foot. and everyone just kept saying that I had mechanical issues, had a tendency for nerve entrapments, etc.
Due to mutual scheduling conflicts it took about 4 weeks to see my Endo (HypoT for 5 years now). He went through a litany of symptoms - none of which I had except the neuropathy bothered him. He said a "tendency for nerve entrapments" made no sense. (Thank you!) Labs came back as below. MRI of the pituitary is tomorrow.
How much of these soft tissue, neuromuscular problems could be caused by the IGF-1 level (or any of the other hormones)? Neuropathy yes but my earlier (yet still present) symptoms of tight muscles, trigger points, fascia pain... and this thing with the rotated sacrum??? Could this all be a result of these hormone levels and it's been going on longer than I thought? And can it also cause jittery symptoms? I talk to my Endo later this week but thought I'd pick your brains (no pun intended) for any talking points. Thanks in advance!
Oh, and whether or not there is a tumor, I will be going somewhere out of town for a work up. There are too many neuromuscular issues unresolved and my local medical community is picking me apart like a Thanksgiving turkey. I need to go to one place for a total evaluation. I'm thinking Johns Hopkins... and suggestions?
Here are the labs:
IGF-1 taken on 11/27/12: 403
IGF-1 taken on 11/30/12: 368
Below taken on 11/30/12:
You do need a good neuro-muscular work up it seems with all that going on - any EMGs or the like in the battery of testing?
It is hard to tell the IGF-1 without the range - they would be on the higher side at my lab. IGF-1 though can pulse so, for instance, an insurance company will not pay for supplementation based on the test as it not reliable enough so you have to have a stimulation test. That would be a step in diagnosis if a tumor does not show up.
I hope you are getting a proper pituitary MRI - as in dynamic pituitary MRI. It has a better chance to show a smaller lesion. Even a tiny one can cause lots of problems. Were your tests taken at 8am fasting? Was the ACTH in a chilled tube and spun immediately? Your thyroid testing is useless - you need free T3 and free T4 to see what they thyroid is doing and some antibodies. Did they use the new (.3 to 3 range) or old one? They really did not do many endocrine tests.
No fasting - no suppression tests. My Endo said we'd do some preliminary testing including the MRI. He may very well refer me out from this point - especially if the MRI shows something. The MRI is only of the pituitary not the entire brain and is with & without contrast... that's all I was told. I consulted with a regular Neuro (made it before the pituitary issue came up but appt. was after the IGF-1 results) and his PA flat out said they'd never seen a pituitary tumor patient present like me - no connection... the Neuro shrugged his shoulders & said "possible" my symptoms are due to the pituitary/hormones. I asked him how many he's done and he said 1-2 a month over the past 10 years...so he was quickly crossed off the list. Like I said, I'm going some place... not sure where. I was thinking Johns Hopkins but a family friend who's a Dr. discouraged that. IDK, maybe Cleveland Clinic. What I need is a neuro-muscle work up that will include catching any issues that may not be attributed to the pituitary issue as I feel there may be a combination of things. Barnes-Jewish is closer for me & I know their surgical services are good, but not sure about using them for a total work-up/diagnosis.
You guys have a great forum here.
Neurologists typically don't treat pituitary - they are not trained in it. Check out the MRI report and see if it was *dynamic* or just remember if they took you out for contrast. If they took you out of the machine to give you contrast, the MRI was not a proper pituitary MRI. And loads of my buddies have been told the MRI was normal and when a surgeon looked at it, they found something - they little buggers hide. Hence why the high quality, good MRI is needed and a good radiologist or surgeon is needed. I do my testing typically 8am fasting - except when other times are needed.
Your first choice in hospital IMHO is better than the second from my buddies going around to places. The third is not one I know about for endocrine.
Well, MRI came back normal and Endo said labs (including GH) are normal.... excpet IGF-1. He suggested the IGF-1 could be a false positive and was disappointed that I am no closer to an answer. He was relieved to hear that I had the resources to go outside our area and suggested Mayo Clinic for a good, well rounded, cross-departmental work up... as he suspects,too, that I may have more than one thing going on. Still not sure if high IGF-1 could cause the peripheral neuropathies, multiple tendonitis, soft tissue pain, etc. I don't seem to have any of the other classic acro/pituitary symptoms. Anyone here heard of these symptoms?
IGF-1 can cause those issues. I would find a pituitary center or an endo close by for more testing. GH is not what the body uses IGF-1 is and both pulse from what I understand (hence why a stim test is used). Have you read up on acromegaly?
I went to Mayo - they did not help me or anyone I know - maybe they will help you.
Gee, that doesn't sound encouraging (re: Mayo).
I'm not sure where to go. I really do need a complete work up - endo, neurological, etc. I can't seem to find one place that everyone I talk to says "YES. That's the place." Since I'm traveling I feel like I have one shot at this.
I've read up on acromegaly. And that's what my endo originally thought I had although he thought it was weird that I would have so much peripheral neuropathies "early on" without any of the other symptoms. I guess most acro patients have some neuropathy (maybe carpal tunnel syndrome) and then also have joint problems & other symptoms. But my symptoms are isolated to soft tissue (tendons, ligaments, muscle) which then compress on nerves causing multiple neuropathies (arm, shoulder, ankle, hip)... but without joint pain or other acro symptoms. I have not ruled out anything nutritional as well.
I would contact someone at the magic foundation - they have someone who is dealing with it and knows people with it and that person can tell you more. The problem with endos is that they think the constellation of symptoms is *X* when they actually span to *Q to Z* in real life - I know in dealing with my diagnosis and my docs, they expected certain things and I did not have them, but I really did have the disease, so it takes a very very experienced doctor in a fairly rare[ly diagnosed] disease to figure it out. I have only met people with acro a few times but they seems to be just as varied as the people with my disease - Cushing's - so I have to assume they were just as ticked as we are/were.
Lots of the larger university hospitals can do the complete work up - but don't get your hopes up that you can do it in one trip. It takes time to work on one area, test, evaluate and all. I sort of got that at Mayo, true, but I came out of it with that I had a probable gyne issue, needed thyroid pills and a different shampoo. Just ignore that tumor. Really? But that was me - it could be really different for you.
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