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Old 12-30-2009, 05:00 PM   #46
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Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss

I would urge you to get copies of your labs. Many, many of us have been told our thyroid results are "normal" only to find they aren't normal for us or that the labs ordered were useless. And if they were normal why start you on the synthetics?
I don't know why you had such an immediate negative reaction to the T4, it has a pretty long half life and generally takes a long time to build in your system (and to leave it). Its possible that it was the T3 that messed you uo because it's a very fast acting hormone. Labs will tell you a lot about this from a thyroid angle though.

 
Old 12-31-2009, 07:15 AM   #47
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Cool Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss

You are doing your due diligence, but there are still some things missing. As one other member asked you, but I did not see a response, is did your Dr. get your reverse T3 level?? This level can't be ignored... Most Dr's don't give a hoot about RT3, but that is demonstrating their ignorance, high RT3 needs to be delt with!! Guess what, high RT3 mimics a thyroid condition, even when T3 and T4 are in the normal range. Guess what else happens.... Low Testosterone.... The only T level that is significant is your free Testosterone level, this is the level that travels freely around your body nourishing all of the cells in your body, to improve mucle mass, stamina, strength, and lastly, libido. I've been on Androgel, Testim, and other products to improve my T level, but each time I got it up, it would fall like a rock each time I stopped, why? Because my RT3 was still way too high, you should be taking Cytomel only!! Not the other med. Once you get what I strongly suspect is a high RT3 level back down, you will not achieve your desired results! Just humor us, we are all trying to help you, as well as educate others. What is your RT3 level??

Hope to hear from you soon,

Duckski44

 
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Old 12-31-2009, 10:32 AM   #48
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Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss

HI Ducksi44, Javelina:

Thanks for your help and interest. I don't happen to have the actual numbers with me. I discussed the results with the doctor when he got the blood test analysis. I have to meet him again in mid January, and then I will ask an for actual copy of the results.

Once i have the blood test numbers, I will post them here so I can have your thoughts and suggestions.

I agree on the Cytomel suggestion. Cytomel felt really good, like the right amount of energy kick and vitality. It's when I added Synthroid a few days later that things got scary.

Thank you, and best wishes for 2010. Hope your new year is much better than the one we are leaving behind. At least for me 2009 was awful, so I look forward to a new beginning.

HAPPY NEW YEAR!

 
Old 01-04-2010, 07:10 AM   #49
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Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss

Thanks for the response and well wishes. I really hope you get this thing nailed down! I'm hopeful that 2010 will be a good one for the entire group! One last thing, when you get your labs at the middle of the month, please check out the RT3.. If Reverse T3 is not on your lab report, please question why?
The response may be " we don't check RT3!" If you run into this wall, please insist that you do get your RT3 checked!

Good Luck!

Hope to hear from you later in the month,

Duckski44

 
Old 01-31-2010, 04:47 PM   #50
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Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss

Quote:
Originally Posted by duckski44 View Post
...One last thing, when you get your labs at the middle of the month, please check out the RT3.. If Reverse T3 is not on your lab report, please question why?
Hi Ducksi44, Javelina:

Quick update on my story: I got a copy of the blood test from doctor "A". I tried Synthroid again, with the same disastrous results. That drug is not for me.

In the meantime I saw another endo doctor for a second opinion. Let's call him doctor "B". This doctor is convinced my problem is not so much thyroid, but adrenal, so he conducted several tests to measure my adrenal function, and a new full test for thyroid. He would like to compare it with the blood test that doctor "A" ordered in December. He mentioned that my adverse reaction to Synthroid may point in that direction.

Anyway, here are the results from the blood test ordered by Doctor A in December 09. Please take a look and let me know what you think from these numbers:

PANEL 1
  • GGT: 18.o u/L (0-55)
  • Magnesium: 1.9 mEq.L (1.7-2.6)
  • Uric Acid: 5.5 mg/dL (3.5-7.2)
  • Phosphorus: 3.6 mg/dL (2.5-4.5)

LIPID
  • Cholesterol: 197 mg/dL (0-200)
  • Tryglyceride: 106 mg/dL (0-150)
  • HDL: 46.7 mg/dL (40-70)
  • calc LDL: 129 mg/dL (0-100) TOO HIGH
  • LDL Direct: 119 mg/dL (0-100) TOO HIGH

(Surprisingly high cholesterol levels for someone in shape who still works out at leats 3 times per week. The test was not taken under fasting conditions, though, but in the afternoon, 2 hours after lunch. This may have had some influcence on the results.)

TSH
  • TSH: 1.66 mlU/L (0.5-5)

T7
  • T-4: 10.6 ug/dL (4-11)
  • T-Uptake: 37% (25-39)
  • FTI: 3.9 index (1-4.2)

FREE T3
  • Free T3: 326 pg/dL (230-420)

THYROID ANTIBODIES
  • TPO Antibodies: 2.2 lU/ml (0-9)
  • TG Antibodies: 0 lU/ml (0-4)

HORMONES
  • LH: 2.5 mlU/ml (2.2-29.5)
  • FSH: 4.3 ulU/ml (1-10)
  • Prolactin: 7.5 ng/dl (4-17)

TESTOSTERONE
  • Total Testosterone: 297 ng/dl (286-1511)
  • Testosterone Free percentage: 1% (1-2.7)
  • Free Testosterone: 31.2 pg/mL (50-210) VERY LOW

VITAMIN D, 25-OH, LC/MS/MS
  • VITAMIN D, 25-OH, TOTAL: 31 ng/mL (20-100)
  • VITAMIN D, 25-OH, D3: 31 ng/mL
  • VITAMIN D, 25-OH, D2: <4 ng/mL

DHEA-SULFATE
  • DHS: 189 ug/dl (88-480)

PSA
  • PSA Total: 0.4 ng/dL (0.0-4.0)

CORTISOL
  • Cortisol: 8.86 ug/dL (7-23)

HgbA1C
  • HgbA1C: 5.1% (4.2-6.3%)

ESR
  • SED RATE: 50 mm/hr (0-20) TOO HIGH

PEPTIDE
  • C-Peptide: 1.4 ng/mL (0.8-3.1)

COMP METABOLIC
  • Sodium: 139 mmol/L (130-150)
  • Potassium: 4 mmol/L (3.5-5)
  • Chloride: 102 mmol/L (95-107)
  • CO2: 25.5 mmol/L (24-34)
  • BUN: 19.3 mg/dL (7.9-20)
  • Creatinine 2: 1.0 mg/dL (0.8-1.3)
  • Glucose: 85 mg/dL (70-118)
  • Calcium: 9.3 mg/dL (8.6-10)
  • Protein2: 6.9 g/dL (6.2-8.5)
  • Albumin: 4.7 g/dL (3.5-5.3)
  • SGOT (AST): 21 u/L (0-35)
  • SGPT (ALT): 23 u/L (0-45)
  • Alkphos: 88.5 u/L (53-128)
  • T Bili: 0.7 mg/dL (0-1.2)
Woahh! That was a lot of work to transcribe!
Please, any of the whiz kids in the board, let me know your thoughts about these numbers. Thank you!

Last edited by Julius2009; 01-31-2010 at 07:25 PM.

 
Old 02-01-2010, 09:11 AM   #51
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Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss

Hi, I've commented on the ones that I have any clue about
Looks like hypothyroidism and adrenal fatigue to me.

Magnesium: 1.9 mEq.L (1.7-2.6)

This looks low, did they do a RBC level? I'd take Mg citrate to bowel tolerance to get this level up.

HDL: 46.7 mg/dL (40-70)
calc LDL: 129 mg/dL (0-100) TOO HIGH
LDL Direct: 119 mg/dL (0-100) TOO HIGH


These are out of whack, usually do to hypothyroidism

TSH
TSH: 1.66 mlU/L (0.5-5)


This is a bit high, should be below 1.5 but TSH is not a good test for hypothyroidism in many cases.

T7
T-4: 10.6 ug/dL (4-11)
T-Uptake: 37% (25-39)
FTI: 3.9 index (1-4.2)


These are pretty useless unfortunately

FREE T3
Free T3: 326 pg/dL (230-420)


This is only 51% of range, should be much higher for most of us to feel good, closer to the top of range

THYROID ANTIBODIES
TPO Antibodies: 2.2 lU/ml (0-9)
TG Antibodies: 0 lU/ml (0-4)


No evidence of autoimmune thyroiditis

HORMONES
LH: 2.5 mlU/ml (2.2-29.5)
FSH: 4.3 ulU/ml (1-10)
Prolactin: 7.5 ng/dl (4-17)


These don't seem to indicate any pituitary problems

TESTOSTERONE
Total Testosterone: 297 ng/dl (286-1511)
Testosterone Free percentage: 1% (1-2.7)
Free Testosterone: 31.2 pg/mL (50-210) VERY LOW


Low T can often be from adrenal and thyroid issues

VITAMIN D, 25-OH, LC/MS/MS
VITAMIN D, 25-OH, TOTAL: 31 ng/mL (20-100)
VITAMIN D, 25-OH, D3: 31 ng/mL
VITAMIN D, 25-OH, D2: <4 ng/mL


Your D is quite low, needs to be above 50. I'd suppliment 6-10,000 iu daily to get these level up

DHEA-SULFATE
DHS: 189 ug/dl (88-480)


I'm not positive but this seems a little low in range but likely from adrenal fatigue

CORTISOL
Cortisol: 8.86 ug/dL (7-23)


This is low in range and indicates adrenal fatigue. I'd follow up with a saliva cortisol test,


ESR
SED RATE: 50 mm/hr (0-20) TOO HIGH


You've got some inflammation going on, can happen with hypothyroidism or some other cause


COMP METABOLIC
Sodium: 139 mmol/L (130-150)
Potassium: 4 mmol/L (3.5-5)


These are low in range, again a sign of adrenal issues

Too bad they didn't do ferritin and B12 levels too... I think you do need some further adrenal testing (saliva) and thyroid hormone replacement preferably with something containing T3 (desiccated thryoid or T4/T3 combo). I'd also test your Reverse T3 levels to see if this is an issue for you.

Last edited by javelina; 02-01-2010 at 09:13 AM.

 
Old 02-01-2010, 04:47 PM   #52
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Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss

Thanks for your reading, Javelina. It's very interesting that one doctor thought thyroid, but the second one bets it's adrenal. The cortisol, DHEA and Testosterone levels are definitely low.

I was quite surprised by the out of whack cholesterol levels. Seriously insane for someone that eats mostly a healthy, balance diet, and still exercises 3 or more times a week, despite the fatigue. It's troublesome.

Regarding the high ESR, yes, I'm still healing from a major spinal operation from last year, so that may be it.

 
Old 02-01-2010, 07:19 PM   #53
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Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss

Quote:
Originally Posted by javelina View Post
Too bad they didn't do ferritin and B12 levels too... I think you do need some further adrenal testing (saliva) and thyroid hormone replacement preferably with something containing T3 (desiccated thryoid or T4/T3 combo). I'd also test your Reverse T3 levels to see if this is an issue for you.
Hi Javelina,

The second doctor, or Dr. "B", ordered a second blood test including Ferritin, and a hormonal saliva test to measure adrenals. I had those tests last week, and results should be ready soon. I can't wait to start treating this thing, whatever it happens to be.

Last edited by Julius2009; 02-02-2010 at 07:05 AM.

 
Old 02-09-2010, 03:08 PM   #54
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Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss

julius i live in new jersey and i have been trying to find a competent doctor for years. i am a 20 year old male, and i noticed art age 18 i was losing strength fast. i am very into working out and i became progressively weaker each and every workout. i have hand trembles, stuttered speech sometimes,clumsy walking,headaches everyday,severe brain foggynes..and oh yeah did i mention muscle weakness...also i have skin problems, and that pins and needle stuff too. i cant sleep i get injured easily etc. i also have bad vision and see floaters a lot also. i also have extreme brain fog.i feel so retarded. i had a job at a christmas store stocking shelves and i couldnt even stock properly or comprehend what she was saying..i feel like my head is empty..but its filled with headache causing tumors i feel .

anyway i looked into low testosterone last year and it turrns out i was on the low range of the normal scale. my doctor told me that was still normal (and this ****** me off because the scale is used for 100 year ol men as well and im BARELY at the bottom of it..i had a score of 270 ona scale of 240-1000)
anyway i figured out that i should find out why my test was low. i self diagnosed myself with a pituitary tumor and ordered an mri the next day.
it turns out iwas right. i had a 2mm pituitary tumor.

the doctors refused to remove it and said it was too small to cause my symptoms, and iahvent found one that will remove it. they say its all in my head.

i have found a doctor that is willing to give me tesosterone cypinate injections but i doubt that will help my symptoms and will probably harm me worse.

i was wondering if you could private message me the neurologist you went to see in new york. he sounds decent. ive been to useless endos, useless internists, useless neuros..might as well try him. before i try testosterone im gonna get another blood test. ive had two already but its been a year. im getting my prolactin,lh,fsh,th,estrogen,total test,free test all checked. im hoping atleast that the doctor ordered all fo those because i requested them. i forgot to ask for thyroids.

Last edited by braindeadson; 02-09-2010 at 03:11 PM.

 
Old 02-09-2010, 03:32 PM   #55
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Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss

Braindeadson, are you saying you're getting no treatment for your pituitary adenoma? They didn't at least start you on any tumor shrinking drugs? That's just not right.

There's an excellent site called Pituitary Network Association (pituitary.org) that has a lot of good resources and info about diagnosis and treatment of pituitary adenomas and they recommend going to a top medical center for proper work-up and treatment, one with a pituitary endocrinologist associated with a neuroendocrine or pituitary unit with a pituitary testing facility.

 
Old 02-09-2010, 04:08 PM   #56
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Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss

Quote:
Originally Posted by javelina View Post
Braindeadson, are you saying you're getting no treatment for your pituitary adenoma? They didn't at least start you on any tumor shrinking drugs? That's just not right.

There's an excellent site called Pituitary Network Association (pituitary.org) that has a lot of good resources and info about diagnosis and treatment of pituitary adenomas and they recommend going to a top medical center for proper work-up and treatment, one with a pituitary endocrinologist associated with a neuroendocrine or pituitary unit with a pituitary testing facility.
well,my mri report says PROBABLE 2mm lesion or pituitary microadenoma. Supposedly it was small enough that they couldnt see it when they showed me my films. this was all done last may. i just gave up. im tired of it!
since the adenoma was soooo small, they said that it wasnt causing my symptoms. its funny how i self diagnosed myself, with both low tst,and a pit tumor, yet its all in my head right?
well apparently it is in all my head..i just wish this knowledge was in the docs.

ive been to pituitary.org before, and ive spoken to a women named rumpled who lives in nj as well. she said that even doctors on there arent that great. =( im scared that due to the size of the tumor being so small, and the fact my mri says its only probable..and not even definite..that iw ill never get help.

i just feel so brain dead..i can hear the wind passing in from ear to ear on windy days ha.

idk whether to go through with the testosterone replacement. id rather treat the cause and remove this tumor, yet that doesnt look like its going to happen. i wish i had a giant tumor, then theyd remove it.

i might have to get an mri for a sternum injury i have. i havent gotten a brain mri in like a year, can i get both done at once? my ortho wasnt much help for my chest injury. xrays showed nothing was wrong...and he didnt even suggest mris. doctors just go byu the books and not their patients desires. it makes me wonder about medical schools.

Last edited by braindeadson; 02-09-2010 at 04:12 PM.

 
Old 02-09-2010, 04:46 PM   #57
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Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss

I'd do a repeat MRI just to see if its changed. The pituitary site says that early detection is the key. I've got a friend who had many signs and symptoms of pituitary problems for years that were ignored by her docs including high prolactin levels and finally they did an MRI and found a 1.1 cm adenoma. When they get that big they are usually inoperable. She's on drugs to hopefully shrink it. She's now got adrenal insufficiency, hypothryoidsim, and vision problems because its pressing on the optic nerve.

I hope you get some answers soon.

 
Old 02-09-2010, 07:17 PM   #58
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Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss

Quote:
Originally Posted by javelina View Post
I'd do a repeat MRI just to see if its changed. The pituitary site says that early detection is the key. I've got a friend who had many signs and symptoms of pituitary problems for years that were ignored by her docs including high prolactin levels and finally they did an MRI and found a 1.1 cm adenoma. When they get that big they are usually inoperable. She's on drugs to hopefully shrink it. She's now got adrenal insufficiency, hypothryoidsim, and vision problems because its pressing on the optic nerve.

I hope you get some answers soon.
well they didnt want to help me with my last mri so im not sure if theyll ever want to remove it lol. thats why im thinking of just doing hormonal replacement. at least itll hopefully make me feel ok. and i can atleast get gains in the gym.

ive also heard that they will say no change has occurred on peoples mris even if there is a change has anyone ever heard this?

can i get both the sternum and the brain mri at once? i honestly am not sure what else to do since no doctor will remove this tumor =9/

 
Old 02-10-2010, 07:18 AM   #59
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Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss

You can have different parts of the body MRI'd at the same visit. But each part requires a whole sequence so it will take a while.

If your adenoma is discernable on the new MRI and the radiologist has a copy of your last MRI he will compare the two. I think radiologists tend to call it as they see it and will say if the adenoma has gotten larger. Also I was told by my neurologist to avoid the open MRIs if you want a better image. They tend to be less sensitive. There are different grades of sensitivity with MRIs and you may want to research this. Some do slices that are >1 mm and if your tumor is tiny you want the most sensitive imaging available.

If you have proof positive that it has grown then you will have better luck with getting treatment. My friend I was describing ended up having to go to large famous medical center in her state to get good care, her local endo and neurosurgeon were not good at all. I would consider travelling to the Mayo or Vanderbilt or some other reputable facility if I were in your shoes.

 
Old 02-10-2010, 12:17 PM   #60
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Re: Help! Severe brain fog, lethargy, sleep & skin problems for a decade! Thyroid iss

thanks for the advice about the mri imaging. what kind of mri would you reccomend? i know last time i was enclosed and got with/withoutcontrast. idk what you mean by slicing?? but yeah id like the most advanced mri available. if you can tell me what kind to get ill get it for my chest and brain. i live in manalapn nj if you know any facilities by there that offer the best let me know! im not to educated on mris.

the scary thing is mayo is useless and thats supposedly the best place to go for illnesses.
somme people ive spoken to on another forum have told ne that mayo has told them the same thing i was told by my neuros and by robert wood johnsoin.

but i guess they dont lnow anything when it comes to pituitarys. they are probably good at surgerys, but other than that they are clueless. ive been to robert wood johnson before and they were very rude to me also.

Last edited by braindeadson; 02-10-2010 at 03:50 PM. Reason: please do not post websites except as described in the Posting Policy

 
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