I have had two tests lately where my IGF-1 was 396, then 407. My doctor said that is just "slightly elevated" and is not too concerned, they are going to test again and do a glucose suppression test though. My cortisol was way high but responded to a dexamethasone suppression test. My T4 is low but so is my TSH. Ferritin is low to. Has anyone had these symptoms? Does all this point to a pituitary tumor or something else? I feel like my doctor is not moving very fast on this and it is frustrating because I am a bit scared.
I had a pituitary microadenoma in the past. I've also had low ferritin (iron body stores) before. Do you have any irregularity in your menstrual cycle, like spotting, skipping, heavy menses, etc.?
Pituitary tumors are very common and I don't think it is out of line for you to be wondering if you have one and to want to get it ruled out.
With a low T 4, you would ideally expect that your TSH (pituitary hormone for thyroid stimulation) would not be low. Elevated IGF-1 even if slightly elevated is something that should not just be overlooked while looking at your whole picture. There are other tests you do not mention as the doctor having run. Endocrinologists often can be frustrating.
If you want to try to get a pituitary tumor ruled out at this point, you might ask your doctor about a dynamically done pituitary MRI (with and without contrast) to find out if it shows anything (an important diagnostic too though some pituitary tumors sometimes can be missed on MRI).
Thanks for the info. I have had very heavy menses for the last year or so - so much so that that was the first think I contacted my doctor about. Good information - thank you. I will pursue getting that MRI.
I am taking 325mg ferrous gluconate 3x per day as prescribed by my doctor.
I take 500mg Vitamin C with Rose Hips with the iron because I read that this helps with absorption. I was retested once after a three month period and the levels were better but still not within the normal range so I will keep taking the iron until I am at optimal levels.
They have not tested my LH or FSH - they tested my estrogen, progesterone, testosterone, and prolactin - all were within normal ranges but they said that this is highly individual since we don't have a baseline from before I had symptoms. I had a miscarriage a little over a year ago - I am thinking that this could have been because of my hormone issues.
Well, I would recommend getting FSH and LH levels checked. The FSH you are supposed to get tested with certain timing as it relates to your cycle. I learned I was not always ovulating this way.
Check with your gyn dr. (if your endocrinologist isn't bothering) to see if they will test these pituitary hormones for you. That's where I had gotten my FSH tested before a microadenoma was ever discovered. (My microadenoma was likely a prolactinoma though.) I had many irregularities with my menses, though I don't know if there was any connection with the microadenoma.
Oh, and did your doctor order testing to see how well your iron is being absorbed by your body? Three months at three times a day and it still wasn't in normal range sounds to me like further testing is warranted. I took iron multiple times a day for awhile, but was able to cut back.
I had a hematologist do further testing on me because not only could I not figure out the original cause of my anemia which came long after a complete hysterectomy, but also because it seemed like my iron levels had begun to barely creep up with the iron I was taking (which was at that time less than what you are taking).
Thanks for the advice! I will post an update when I have some new info. I will definitely push for these tests. Doctors seem to have so little motivation to find out what is wrong, I can see I am going to have to push to get proper care.
Those IGh-1 levels are actually high. That is tested for patients with Acromegaly. To much growth hormone usually caused by a pituitary edonoma. The high end of normal is around 245. I would pursue them looking into acromegaly. ;-)
Thanks - I definitely will. They ran another blood test on Nov 7th but still no results- there is a national shortage of the reagent they need to run the test. But I will do everything I can to make sure they do imaging to look for a tumor.
I would seek out a pituitary doctor at a pituitary center - find a neuro-endo. They can do the proper testing and the proper type of pituitary MRI that you need. As this is your first you need a dynamic pituitary MRI to make sure you have the best chance to show any lesion (it can show up smaller ones) as well they are typically more experienced in reading the films.
Do you have any of the physical signs yet? The doc may be waiting - ack! - for those to show up and now the push is to treat before those mostly irreversible traits show up if they can. Why they want to wait until a 6 year old can diagnose you is beyond me.
You can also contact the Magic Foundation (search for it) and they have at least one person there that had it that you can talk to. The link is also in the health pages and other info there may be helpful.
I will keep that idea in reserve in case I need it. I have Kaiser so I don't have a lot of control over who I see, but I can demand second and third opinions, from what I understand, within Kaiser and if necessary outside of Kaiser once I have gone through those hoops. I am hoping I can get my endo to do the dynamic MRI.
Signs and symptoms - I have gained a lot of weight in a short period of time, and even though I am exercising every day I get no gains in strength or endurance, in fact working out leaves me with leg tremors and almost seems counter-productive at the moment. Some subtle changes in my face, my mom mentioned that my face looked different a couple of months ago. Rings not fitting but that could be the weight gain. I also have tested positive for elevated TPO AB but my thyroid hormones are low normal, so they won't treat that. I have had quite a lot of hair loss, acne, weakness and fatigue, heavy periods... some of this could be due to the low ferritin. I'd just like to get it sorted out! :)
Medical history - in 2003 I was paralyzed by ADEM, which is an autoimmune demyelinating disease. I recovered pretty well, just suffer from some incontinence and minor neurological issues ever since.
Anyway, thank you for the advice, I will look into those sources if I can't get my endo to do the proper testing.
I would exhaust your kaiser options and then demand you can go out of network for an expert that they pay for - as you need it. If you can take pics and notice the subtle changes (been to conferences and they show progressions) and even your dentist can pick it up. People progress differently and the damage - eek.
Note on the MRI - get the proper order and call ahead and make sure the MRI place has done them before. Not all places are skilled at doing them.
I wonder if the auto-immune disease is related... so many of us have other diseases going on.
I don't know... I have recently stopped eating gluten and dairy because of being low in B12, D, and having the low ferritin, plus being diagnosed with Hashimoto's. I also recently developed an allergy to pine nuts and pistachios. It seems like a bunch of stuff, I know, but I thought maybe there is something in my gut that is preventing me from absorbing nutrients that could have led to all of these different deficiencies, and also ramped up my immune system. Whether that could be related to elevated IGF-1 and a possible pituitary adenoma, I have no idea (and I don't think anyone else does, either!) =) But it's certainly worth cutting stuff out of my diet and seeing if it helps. Getting my b12 and iron should help with the energy levels, and increasing D should help with the auto-immune stuff. Ack. I feel like a crazy person. But I have to try to do what I can, and that means learning what I can and trying what I can as well as leaning on my doctors to take a more aggressive approach to finding out what is wrong.
I have to say I really appreciate the willingness of the community members here to help each other out and try to provide pieces to the puzzle. It's amazing what people can endure and how you can turn anything into a positive and an opportunity to help others. :)
B12 is a funny thing - have the doc check you for pernicious anemia and you may have an absorption issue that is unrelated to gluten. You just cannot absorb B - so you would need shots or patches. My mom had it and well it is pretty common. Iron is a bear - I get that and the best way is diet as the supplements have side effects that are horrid.
I would be careful about cutting too many things out too quickly - be methodical - you are already deficient and the diary, well wouldn't that help boost the D?
The dairy gives me gas - I have already tested that, so it stands to reason it could be affecting my absorption of other things. So I am taking a cal/mag/d supplement. Getting sunlight is of course the best way to increase D, but I won't get a lot of that until next spring.
You could have lactose intolerance? Try lactaid type products? I am low in D - I take a lot of D3.
I cured my Hashimoto's! I had my thyroid out. I don't know any surefire way - healthy living helps but auto-immune stuff is tricky. It is true that once you have one you are likely to get another but what other(s) you may get is a guess.
My main issue was my pituitary - but yeah - once I took out my thyroid, I could finally balance things. It was the strangest thing. I always thought I would be better off with part of my thyroid. I had half out at 20. The rest out at 40. Then my pit wacked a few years later - then adrenals out 2 years after that. It still actually took a few years after that for the antibodies to go away!
Glad to hear it. I hope you get a good one and it answers some questions for you - but lab works is also needed in conjunction with it to really know the whole story. I don't know why docs are so reluctant to run labs these days...
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