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Post by curlysue on Nov 21, 2008 15:16:10 GMT -5
I have a 4mm pituitary adenoma and am getting a real run-around with the doctors who know less about it than I do.
In the last several months, my testosterone was tested as borderline low, my estrogen as low, my progesterone as none, and my igf1 as low (each tested only once). My cortisol and prolactin and T3/T4 were within range when each was tested once. My thyroid used to consistently test as quite low (5.74 at the lowest tested), but every time we've tested it in at least the last year, the count goes up again, with jumps in as little as two weeks between tests. The last test several months ago had it at 1.09. I have not taken any hormone replacements or therapies. Hashimoto's and goiters were ruled out. I've been complaining since at least 2004 of the same symptoms but have only now been tested for and diagnosed (by MRI) with the microadenoma.
I'm trying to find information specific to adenomas of this size, as I haven't located any yet. I'm reading up in order to best advocate for myself before meeting with my new endocrinologist next Tuesday.
Some specific questions I'm looking to answer: 1. Do treatment suggestions change if a tumor of this size is TSH-secreting or is not hormone secreting? If so, how? 2. How is it determined if a tumor is TSH-secreting in a hypothyroid person? Could it create a false normal reading? 3. What is the general accepted action for tumors of this size? Wait and see? Surgery? Something else? 4. What tests are typically ordered at this point? 5. Is it common to have fluctuations in the hormone levels when an adenoma is suppressing pituitary function? Or is it expected that once down, they'll stay down?
I understand that the general norms will then need to be applied in my specific case, as I expect to do with my doctor next week, but I'm just trying to read up on what that general norm is at this point.
Thanks for any help! Susanna
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Post by Chris Jackson on Nov 21, 2008 15:41:04 GMT -5
Check in more stickies in the pituitary stickies I have a list of sites pertaining to pituitary tumors. Also a link to a pituitary surgery (1 hour video, surgeon has Graves, yikes). If you haven't gotten opinions on all your hormone tests, go ahead and post them with the ranges.
The size of your tumor is concerning, but of course not big enough to operate. You are luckily a long way from that. Generally, there is little flucuation in hormone levels. You do want to do yearly MRI's to make sure it doesn't continue to grow. Most pit tumor stay at or below 5 mm. The odds of it being a TSH secreting tumor are pretty low. I've seen no more than 3 cases in 5 years. Again post all your thyroid tests with ranges so we can see what is happening. A fluctuating TSH usually means Hashimotos and I have seen a few Hashi's with pit tumors. Most TSH secreting pit tumors, TSH will be no higher than 3.0 and doesn't fluctuate like that.
If you haven't had prolactin, GH, igf-1, ACTH, cortisol, DHEA-s, LH and FSH (with all sex hormones), maybe even vasopressin, ask for them.
You're welcome, Chris
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Post by curlysue on Nov 21, 2008 17:02:37 GMT -5
I've just managed to get a copy of some of my labs from my last endocrinologist. I still don't have early labs from my GP dating back to 2004 as they can't find them. That's when my TSH was usually tested between 4.5 and 5.75. In the last year, you'll notice that it has been under 3 and going higher. The endo thought Hashimoto's would be the cause of it, but he was surprised to rule that out.
He said that there's no chance that I have Hashimoto's as I don't have the antibodies. But then he also said there's no chance I have a pituitary tumor because my prolactin counts are fine, so who knows.
He wanted to put me on daily shots, gel, pills, and a patch to make up for the hormone deficiencies. My cardiologist suspects that it is implicated in my exercise intolerance and my tachycardia and my neurologist thinks it is implicated in my migraines. If this thing is causing or affecting so many things at 4mm, then why is it too small for surgery?
I can't figure out how to add the labs, which are 6 pages of tif files. Any advice on that?
I'm so happy to be able to have a normal conversation with someone about this!
Susanna
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Post by Chris Jackson on Nov 21, 2008 18:03:56 GMT -5
Endos are so amusing and always make things so difficult. He's only looking for a prolactinoma tumor. What ignorance! Most pit tumors cause low hormones, not high anyway. There IS a chance you have Hashi's with a pit tumor, it can happen, I've seen it. Post those antibody tests if they gave actual values, otherwise they are worthless and need to be done with a lab that does give actual values. If you have TPO and says less than 20, well, 19 I consider Hashi's. I consider 5 the beginnings of Hashi's. Most Hashi's are in range on the antibody tests. You are supposed to have zero antibodies, but many people have 1 or 2. The range can go up to 30 though. Most Hashi's don't go above range, so they don't get diagnosed Hashi's.
I've never seen where fluctuating TSH that wasn't Hashi's, period!! You need to find an osteopath as your endo won't be helping you, they never do...unless you have diabetes.
Your migraines may be caused by high blood pressure caused by low aldosterone. Low aldosterone can cause headaches and migraines. When I started researching aldosterone in my med books, I figured out right away that low aldosterone must be the cause of migraines and headaches. I've told many with migraines to immediately drink salt water. In years of telling this, all but one reported their migraine episode disapeared. You try that. If you have salt craving, hard to handle heat, excessive sweating and urination, you likely do have low aldosterone.
You're have to type in your labs. Hormones, antibodies, sodium and potassium is all you need to post really.
Normal conversations and common sense I try to aspire to. Chris
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Post by curlysue on Nov 21, 2008 18:51:17 GMT -5
OK, I'll get to typing the labs this evening. I don't have salt cravings--rather have an aversion to it. I also don't have frequent urination and have a rather low amount of sweat. (Ladies don't sweat anyway, we "glisten!" My cardiologist had me increase salt intake and my neurologist told me to decrease it. Neither made a difference. The endo thought I might have high blood pressure causing the migraines (which are mainly vestibular), but the cardio and neuro both said no and that they'd be more concerned with me having drops in blood pressure causing faintness. It is a huge disaster.
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Post by Chris Jackson on Nov 21, 2008 18:56:45 GMT -5
Sometimes hypothyroid can mask low aldosterone and then when they get going on the Armour, the symptoms can rear up. Keep that in mind that could be your case. Where there is low cortisol, low aldosterone is right behind in the vast majority of cases.
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Post by curlysue on Nov 21, 2008 20:03:27 GMT -5
I still don't have some intermittent tests that were done by my GP or any of my early tests. As I mentioned, my TSH was consistently hypo around 2004-2005, then went untested in 2006. It looks like my endo wasn't being exactly honest in his summaries of recent tests with me, either. If I got some of the ending letters wrong (an m instead of an n or whatever) it is because the fax is too difficult to discern, but it isn't important so I didn't go look them up.
Susanna
T3 5/1/2008: 1.30 in range of 0.6-1.81 ng/mL 11/03/2008: 135 in range of 97-219 ng/dL (total)
FT3 5/1/2008: 2.9 in range of 2.3-4.2 pg/mL
FT4 12/14/2007: 1.24 in range of 0.89-1.76 ng/dL 5/1/2008: 1.27 in range of 0.89-1.76 ng/dL 9/22/2008: 1.1 in range of 0.8-1.8 ng/dL 11/03/2008: 1.3 in range of 0.8-1.8 ng/dL
FREE TESTOSTERONE (direct) 5/1/2008: 1 in range of 0-2.2 pg/mL
TTE 5/1/2008: 21 in range of 20-75 ng/dL
FSH 5/1/2008: 7.5 in unknown range of 2.5-10.2 follicular, 3.4-33.4 mid-cycle, or 1.5-9.1 mIU/mL luteal 11/03/2008: 5.8 in unknown range of 2.5-10.2 follicular, 3.1-17.7 mid-cycle peak, 1.5-9.1 mIU/mL luteal
TSH 12/14/2007: 2.96 in range of 0.35-5.50 mIU/mL 5/1/2008: 1.09 in range of 0.35-5.50 mIU/mL 9/22/2008: 2.32 in range of 0.4-4.5 mIU/L (3rd Generation) 11/03/2008: 2.61 in range of 0.4-4.5 mIU/L (3rd Generation)
LH 5/1/2008: 5.9 in unknown range of 1.9-12.5 follicular, 8.7-76.3 mid-cycle, or 0.5-16.9 mIU/mL luteal 11/03/2008: 5.2 in unknown range of 1.9-12.5 follicular, 8.7-76.3 mid-cycle peak, 0.5-16.9 mIU/mL luteal
PGN 5/1/2008: <0.20 in unknown range of 0.41-1 follicular or 0.41-16.8 luteal
PROLACTIN 9/22/2008: 9.1 in range of 3-30 ng/ML
ESTRADIOL (E2) 5/1/2008: 79 pg/mL in unknown range because dr didn’t note the point in my cycle. Ranges of ND-160 follicular, ND-84 follicular days 2 to 3, 34-400 periovulatory >2 days, 27-24 luteal 9/22/2008: 71 in unknown range of 12-212 follicular, 18-480 mid-cycle, 0-247 pg/mL luteal 11/03/2008: 116 in unknown range of 11-212 follicular, 18-480 mid-cycle, 0-247 pg/mL luteal
SODIUM (NA) 12/14/2007: 14.1 in range of 13.5-15.2 mmol/L 5/1/2008: 14.6 in range of 13.5-15.2 mmol/L 9/22/2008: 13.8 in range of 13.5-14.6 mmol/L
POTASSIUM (K) 12/14/2007: 4.3 in range of 3.5-5.5 mmol/T 5/1/2008: 4.2 in range of 3.5-5.5 mmol/T 9/22/2008: 4.6 in range of 3.5-5.3 mmol/L
THYROID PEROXIDASE ANTIBODIES 9/22/2008: 10 in range under 35 IU/mL
ALPHA UNIT 9/22/2008: 0.3 in range of 0-1.5 ng/mL or 0-3.7 ng/mL in hypothyroid subjects
IGF-1 11/03/2008: 108 in range of 138-410 ng/mL
OTHER ABNORMALITIES 12/14/2007 Blood Glucose 100 in range of 65-99 mg/dl HDL 36 in range of 40-150 mg/dl when LDL was 66 in range of 0-99 Vit D 1,25 Dihydroxy 62.3 in range of 15.9-55.6 pg/mL
5/1/2008 Blood Glucose 106 in range of 65-99 mg/dl
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Post by Chris Jackson on Nov 21, 2008 20:17:26 GMT -5
I knew I was right. I never miss it. Flucutating TSH always points to Hashi's and your 10 for TPO shows you ARE Hashi's. Your free tests show undertreatment or no treatment. Get other opinions of your thyroid tests on Realthyroidhelp.com.
Your sodium ranges I'm not familiar with. Your first two potassiums suggests you could have secondary AI, but the third leans to primary. This can happen with several potassium tests in secondary, most high, a couple low. Igf-1 is very low. Wierd range for that. I use 150-350. Get GH tested. Your sex hormone tests, FSH and LH I can't comment unless menopausal. If the glucose were fasting, then you have a problem there. You should have had fasting insulin too. if fasting you could have pre diabetes II, but without Insulin, can't rule that or diabetes I in or out. I don't look at prolactin unless it is at the very bottom of range for predicting other pit hormone could be low. Is nothing to be concerned about except for mothers who want to breast feed.
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