Previously I was told that I just might have some thyroid issues and there was an error in antibody readings they gave me. Yesterday, I was told by my PCP, that he thinks I have a Pituitary tumor. My readings are as follows:
TSH - .24
Free T3 - 5.1 (2.77-5.27)
Free T4 - .90 (0.78-2.19)
LH - 57.2 (14.0-95.6 Midcycle)
Prolactin - 17.2 (2.8-26)
Thyrobglob AB - .9 (0.0-14.4)
TPO AB <0.3 (0.0-3.9)
TSH Receptor AB - 7 (0-9)
He has repeated my tests 3 times and each time my TSH has been low, and each time my T3 & T4 have been normal which is why he says the tumor. I have an MRI on Oct 2nd and I'm worried. I have been sick for 3 years, I was even in Congestive Heart Failure when they first realized I was really sick. Then they got that under control but I have not been well since! I can't tell you how many times, I've had strep throat, then virus after virus, I've been on more antibiotics than a person should be and it scares me!!! I have lost over 45 pounds and I feel like I'm on pins and needles all the time! I have to tell myself to relax because if I don't pay attention to myself, I find my head, down into my shoulders and the muscles so tense that I get horrible headaches! I'm stressed all the time and I cannot stand the cold!!! The girls at work will laugh at me becasue it will be 73 degrees in the office and I'm absolutely FREEZING!!! I don't get it!! They put me on a cancer medicine that helps with nausea and vomiting because I'm always sick to my stomach! It helps but doesn't make it go away! I can barely get my body rolling these days~I'm just exhausted in all areas, emotional, physical, you name it, I'm wiped out! I asked the doctor about this tumor and what to expect and he said radiation and surgery. His office is setting up an appointment for me to meet the endocrinologist. I've read several of your entries and I have to say, I'm really nervous. My boyfriend tells me to stop my unecessary worrying, but is it unecessary? I don't think radiation and surgery is uneccessary! Can you shed some light on me please???
Your doctor said you need radiation and surgery already?! Run away from that doctor and run away fast fast fast!
Yes, your TSH is suppressed, but eh, I have seen lower. Why I tell you to run is for several reasons. He has not identified *what* kind of tumor that you have. He has not run full panels on the pituitary (not done cortisol or growth hormone). Many tumors can be treated with meds these days and avoid surgery and BTW, radiation is a last resort as it kills the pituitary for the most part and can make you take more hormones or render you panhypopituitary. You need to see a proper neuro-endo so that you get the right testing, the right MRIs or other imaging and that way you get diagnosed right - not just scared to death. You may or may not need surgery - but you sure need some medications to get you stable and this guy has not done the tests.
Losing weight, vomiting BTW - all point to Addison's, not a pituitary tumor. The endo should run a ACTH stim test, get you on the right meds, and you will get better. Do you crave salt?
TSH is made by the Pituitary gland. Generally when your T3 and T4 are low TSH goes up to try and stimulate the thyroid gland to increase the T3 and T4.
Because your TSH is not going up, as it would in a healthy person, your doc is looking at the pituitary gland or hypothalamus (which makes TRH) as culprits. This makes sense to me. Good luck!
Thank you so much for your comment! I'm just learning about all of this and it's so overwhelming! But I just want to get to the bottom of my problems because I'm sick and tired of being sick and tired! :) So the TRH is what? I do remember him saying something about the hypothalamus but he focused more on the pituitary gland. I have the MRI scheduled for October 2nd. I'm really anxious and just want to hurry things up! Thanks again....
That is how all the endocrine system works - the hypothalamus puts out a hormone, the pit then puts out another hormone, then the gland itself does and they all sense and adjust - it is called feedback loops. The glands and all get feedback and everything loops back.
You know, I just thought of something. I wouldn't call it skin darkening for sure,but I do "flush" in the exact same places on my face and left side of my neck down to just above my breasts. It does it almost all the time, but not anywhere else. The doctor did notice it but I was running a fever at the time and he asked me to "watch" it. I'm looking at it right now, but it's red, almost like you would think my blood pressure was up. But it's not. You think that has anything to do with any of this?
I have the SAME symptoms you have on a daily basis as far as low TSH, cold intolerance, flushing of skin, nausea pretty much you name it. I also have been getting random bruising all over my legs even if I dont bump into anything. Majority of tests they have run arent showing anything. Thyroid tests the past 2 they have done out of the 3 have been low TSH. But I think I have a much longer list of symptoms unless you are leaving some out. Nonetheless, as I am kind of in the same situation. I have learned not to take the doctors word for it always. So if he "thinks" you have a tumor I would make him prove its a tumor before I received any radiation or any medication to treat it.
The more tests or MRIs you can get to prove that it is a tumor the better.
I dont believe in any single diagnosis I have been given because so far they have in one way or another conflicted with what another doc will say or the treatment for a few of my symptoms make some other much worse.
I had my cortisol checked on 17JULY it was at 6.8 UG/DL for the morning time which i was told it way too low for the morning time.
I had it checked again on 25SEP it was 8.5 UG/DL for morning time which is still just under low the range for the morning time is 8.7 to 22.4
my skin is way more pale than it is tan
Ill see endocrine doc tomorrow to follow up for all these tests
vitamin B12 came back normal
folate came back normal
I seen that they are also checking me for Celiac Disease and checking my chomogranin A levels
I will upload these newer labs too when I get all of them back some still say "pending"
Honestly all the doctors Ive seen so far are stumped and dont know. My primary doctor stopped running tests on me. He keeps checking my glucose because he thinks I have diabetes or something. Also when I see him he says "what your describing sounds like panic attacks" but I tell him Im not in a panic when it happens nor am I anxious then he responds wth a "well panic attacks can happen for no reason at all"....
I went to a Lyme specialist and his diagnosis based on clinical and a few labs he did was Chronic Lyme Disease with 2 Possible Co-infections being Bartonella and Babesia. I dont remember a tick bite and my other doctors wont confirm or deny if it is or not nor are they running tests to figure out for sure if it is.
So as of right now Im stuck in a situation where I dont know what is wrong. My doctors are still working it while I seem to be getting worse. My thyroid lab and cortisol are the only things that have really shown any abnormal results.
All my labs Ive had done are in my Albums except for the most recent.
Ill post tomorrow what my Endocrine specialist thinks, I think she will be the one to figure this out.... Im hoping!
My heart is definately with you! I pray she finds out what is wrong with you! 3 years ago I had a virus and went into Congestive Heart Failure! I was so sick I went on temporary disability. I could barely get from the couch to the bed sometimes without it being a breathing problem! But they put me on all kinds of cardiac meds and that part got better! BUT...ever since then, I have had virus after virus, low grade fevers ever since...throwing up all the time....nausea everyday....the cold thing...even when it's not cold but you cant' tell my body that....sometimes I'm soooo cold I have to take a very hot bath just to warm up! No one in the 3 years ever did a thyroid check until I got this new doctor. He ran it immediately and when he saw the TSH at .24 he immediately ran it 2 more times and all the others , the Free T3 and T4 to assist him. That is why he believes it's the tumor and that's why he ordered the MRI. He said he would be VERY surprised if he is wrong and if he is, he is going to order the thyroid scan. He wants me to have all the tests he can do before seeing the Endo doctor. I got the call today and my appointment is not until November 17 for the Endo. I'm soooo tired of being sick that I wish I could move it up some, but I guess patience is a virtue???? LOL
Yeah back in 2005 I got what the hospital called "viral gastroenteritis" kind of a general thing they call it when they dont know. But since then Ive had the fatigue and bowel problems. the gastroenteritis went away after a few weeks. But its like it never went away completely you know? My body always feels like there is something odd or wrong with it. doesnt feel right. Then march of 2009 I started having cardiac problems, the docs started running panels on me and checking me for heart attacks. Ive been a runner for the past 5 years so my blood pressure has always been pretty good as well as heart rate. My blood pressure starting in march went up in the 170/105's from time to time, then on a daily basis sat around 140/90. heartrate always around 95+ then id have episodes where my hands would tremor, shocking sensation in the chest, tingling and loss of sensation in extremeties not always though. When its cold out, I get COLD! Other times when Im having those flushing times at points in the day though I can be out in 50 degree weather with no jacket and be fine because my body is heated probably by adrenaline running around or something.
My body temp never really goes over 97.8 , today at the Endo.. the thermometer took soooo long to read my temp and came out to 96.8. But most docs are like, well your body "just runs cooler". Endo doc didnt say anything about it, not the first time it gets that low.
Endo doc looked at my labs but didnt receive all my labs back so I have to go back on Nov 4th. But from the thyroid labs. My TSH was at 0.25 T3 and T4 were in the normal range. She said something about "subclinical Hyperthyroidism". She really didnt break it down in dummy terms too much for me and was very short with her answer when I asked about certain things so Im figuring she doesnt want to elaborate on anything until she sees those other labs and is certain about it.
She also put in to redo a bunch of my labs. I cant remember all the ones she wanted to do but I know Thyroid again, Testosterone, .. it was like 6 more labs. Ill find out what they were and the results next week before I even see her.
My Vitamin B12 was around 320 something which she said the range is between 200-1000 or something so she said I need a little bit more vitamin b12. Apologize Im trying to remember some of this off the top of my head.
I havent had any episodes lately, my last was about 3 weeks ago while I was in the air terminal listening to music and playing with my phone waiting for the plane to arrive. It started up and soon as I realized it was happening I didnt want to create a scene in the airport so I went to the restroom. My body was trembling so all i could do was wait it out. Didnt last that long but still is pretty annoying when it does happen. My doc believes they are "panic attacks" but I honestly dont. I believe I could have them but the situations im in when they happen just dont go along with it.
Hope the best for you as well, Ill let you know what my docs come up with.
I also need to follow up with my Lyme doc as well to see what he has to say. I read an article called "Advanced Topics In Lyme Disease" by Dr. Burrascano. Mentions some things in there about how the Hypothalamic-Pituitary Axis can be affected by Chronic Lyme.
My MRI came back negative! So now he's going to order the thyroid scan. Now, if that comes back negative, then what should I ask for next? If my TSH stays low, and my T3 & T4 stays normal....then what? I've now lost over 50 pounds! Already catching another virus or something and it hasn't been 3 weeks since strep throat!!! But that's exactly how it's been, for 3 years!
Oh my gosh! You have really been through the ringer! I just hate it when they use the "panic attack" thing! Actually it pisses me off! I have worked in the medical field for years and I have seen WAY too many times that they say that and then later they find it's something serious! The sad part is that there are so many hypochondriacs out there that they get in the way of us sick people so by the time we get to the doctor, they are burned out and just assume we're another one. I can't stand that! You clearly are running abnormal labs and that's what mine are doing! My TSH stays low and now I've lost over 50 pounds! I love it, I needed to loose it, but it's just dropping off! My skin is just hanging and because I'm so sick all the time, I dont' have the energy to exercise! So what does a person do? Can you tell me more about what she meant by "subclinical hypertyroidism"? Maybe I need to ask about that too! I want all my labs done before I see the endo because it's too hard to get scheduled so many times and so far apart! I want to feel better now!!!! Or at least in the next year! hahahahah. I've said this so many times but I'm sick and tired of being sick and tired.
by "subclinical hyperthyroidism" i believe it just means your TSH is supressed but your T3 and T4 are still in normal range. I think it means before the disease begins, like catching it before the symptoms start but not really in my case considering thats how I know something is wrong because of the symptoms.
Ill let you know what the rest of these labs come back as. Cant get them till start of next week so we will see.
just becareful what you allow doctors to prescribe you and what you let them do to your body. They make mistakes to. Even if they diagnose me with hyperthyroidism or whatever, Im not letting them take my thyroid or kill it off some or go on pills just yet. I want to find out why it all of a sudden started. My thyroid was fine in April of this year.
I dont want anything removed or messed with if it doesnt need to be you know? With this **** ive been through with these docs and see more misdiagnosis from them, Ill allow them only to do labs haha
On waking up I had loud ringing in the ears. Nothing in my bedroom was on to cause it and it seemed to surround me but eventually dulled down. This was the morning I started the antibiotics but before I took them that morning.
I wonder if your cortisol might actually be low vs too high? And that the nausea is maybe related to that? Getting cold and having fatigue are some of the symptoms of low cortisol. You might ask you endo about his/her thoughts on this.
Just a thought.
but we already knew this didnt we. hahahahahhahahah !!!!! YES WE DID!!!!! Too bad THEY don't know we already knew it!!!! That was great !!!! Thank you!!!! Thier answer to everything! You know, since your lymphocytes are so elevated and then you have the swollen lymphgland....has anyone biopsied that and made sure you don't have cancer? I mean lets face it....lymphoma....cancer that travels in the lymph system....you need it checked!! I know that when you're sick your glands can swell, that's what they tell me too, but no one has ever checked mine either even though I ask them too because the gland on the right side of my neck stays swollen, very rarely even lowers but can't get them to check it! Now they did to a CT of it and said it was negative but I was told the only SURE way is to biopsy it. They have found two small tumors on my right lung and they say it's nothing. I had a large tumor that they removed on my left hip...it was benign...so even with the swollen lymph gland they have no desire to look further...I don't know hv2laf, I tend to think that we just have to keep searching for a doctor that listens. I love mine right now and since my MRI came back negative, he is now scheduling the Thryoid Scan. He is wonderful! Let me know how things go with you! I love your scense of humour!
yeah. Everytime I go in and suggest something to my doctor he thinks Im over thinking it and of course I think he is under thinking it. My primary doctor is the one who believes im having panic attacks, so me suggesting cancer to him he would look at me with that stupid look on his face like Im just a paranoid patient of his.
I dont know if its because Im fairly young to have anything going on. Most people that make those comments to me "your too young to be having things like this go on".
Cancer has crossed my mind but its not the top on my list. We have run many many labs but nothing coming back positive. Then the rest of the labs are all over the place and one lab contradicts the other. Like they look for a tumor with one blood draw, it comes out high indicating there MAY be a tumor then they follow that up with another with should come out High as well or retest and it comes out way too LOW.
Ive had pretty much an MRI of my entire spine as well as brain. Had a small hyperintensity show up on T2 Weighted image. They were looking for MS, but the comments on it just said the "hyperintensity was of uncertain etiology" or something like that. Pretty much that they werent sure but they dont think it is.
I am sticking with my Lyme doctor for now, I completely fit in the Lyme category. Until my Primary doctor can prove otherwise. I see my doc this coming week so we will see what he wants to try next. Im going to try and get him to order a B. Dunaci and B. Microti and Babesia FISH antibody lab. Of course after I show him this CBC and basic metabolic panel showing im sick with something :)
By the time this is said and done I might go searching the medical field for a job, Im just learning so much. haha
Sleep Study Neurologist - Says I do not have sleep apnea, but wants to check me for Narcolepsy because my "sleep paralysis" and always fatigued i guess are early signs. So I go back in for another night stay, then the following day have to stay and take naps throughout day.
2nd Opinion Neurologist - Finally got to see this doctor. Though she wants to review my full medical history so I gave her my records which date back to 2005 of symptoms. She said for sure she needs a Nerve Conduction Study done for the decreased sensation to pain I have in my foot as well as tops of hands and back. Follow up for results for that will be about 1 month +.
My primary doctor - we did a quick run over of my symptoms again. He examined my back for the back pain and muscle spasms I have. Scheduled for physical therapy to try and help relieve some of the muscle spasms in the mid and upper back. He noted that so far the only official diagnosis I have had is from the Lyme doctor I seen. I asked him if he could do a Lyme western blot again through the lab he uses because we got into it about Igenex Labs awhile back. He said yes he could see about ordering that he needed to talk with lab tech first. I went in to get blood drawn and I dont think he ordered that one I asked for but ordered either a Lyme PCR or the Multiplex PCR.
Has anyone here had that done before? what are my chances actually hitting on that. I hit Negative on the ELISA test, I hit positive and IND on quite a few bands on the Lyme Western Blot. Since Im on antibiotics I would have a good chance of the lab detecting dead bB bacteria wouldnt I? Should be pretty specific. I think itll be Qwest Labs that does it not sure.
i have already seen a Lyme Specialist he diagnosed me with Chronic Lyme. The problem is other doctors and specialties such as endocrinology, neurology, and even my own primary care doctor wont acknowledge it. I show them the labs done. Western Blot showing antibodies, bloor smear showing bacteria attached to my red blood cells. None of them can give an answer but none of them want to even do a work up of Lyme on me. Its just making wonder if it actually is Lyme or what or maybe these doctors I see are pretty lost.
My doctor does not believe its Lyme because I havent been to the East coast, remember being bitten by a tick, and my ELISA lab was negative. So I dont know If im having cross reactions with anything else.
Its just a touchy subject so Ill sit beside Lyme diagnosis, but I am keeping an open mind for other possibilities you know?
So we are getting into the winter months, its getting colder obviously.
Since it started getting colder I did notice that while outside my hands will turn a light bluish color but not only that I get these "highlighted" looking spots on my hands. They appear orange in color or more of a high area of skin usually rounded in shape. Once I get inside though It seems to go away.
My hands and feet still will get cold while inside, even at times when my core (chest abdomen) feel like they are on fire from all the heat flushing I get.
Can't you just stick with the lyme doc and get treated - so you can just get better via treatment for that and resolve the issues that can be resolved - as for the docs that are giving you a hard time, time to doc shop.
i am sticking with the Lyme doc. Just the only problem is, its at my own expense. My insurance wont cover it because my primary doc wont refer me out to him. Or I should say he is not in my list of providers covered by my insurance. (This is military insurance, Tricare by the way).
Ive paid well over $1000 out of pocket for visits and labs to have my insurance deny all my claims. It just *****. At least they cover the antibiotics otherwise id be SOL.
Because my Lyme doc Im paying is not in my insurances list of providers they wont pay, also because my PRIMARY doc didnt refer me out to him. (this is military insurance TRICARE by the way)
Ah yes, I have seen many docs and even paid for a surgeon once at my own expense so been there, done that.
Gotta find a primary and convince him that there are things going on - but alas, some have no time or inclination to understand or help. Sad that we are the losers on that.
I dont know if you seen the webcast from the IDSA.
They are going to be releasing new guidelines for diagnosing and treating Lyme because their last guidelines that were released by the board. Board members held a biased opinion on Lyme from my understanding. Now they HAD to include new board members who are Lyme literate then they broadcasted their annual meeting with about 16 doctors from all over the U.S. who would like to express their opinions on the changes that need to be made to the guidelines. A doctor from the CDC also was there to answer questions they had.
IDSA Lyme guidelines are used by most doctor or insurances when it comes down to Lyme or looking into Lyme as far as treatment.
cant wait for it to come out though suppose to be by the end of this year. Id like to see their new findings since most of the data/research is dated back to 12 years old.
Well I just had my Ultrasound of my Thyroid and this is what it says:
Scans throught he thyroid were obtained and demonstrate multiple hypoechoic nodules. 1 in each lobe of the thyroid and 1 in the isthmus; all of which measure less than 5 mm in diameter. Right lobe measures 45.9 x 16.2 x 14.9mm, left lobe 30.4 x 12 x 10.4mm. Isthmus measures 5.1mm.
Mulitnodular goiter without other abnormality
I have an appointment with the Endocrinologist on Tuesday. Can anyone tell me about this?
Sounds fairly large. Do not let the endo just test TSH and T4 - get all the thyroids checked -T3, free T4, Free t3, and the antibodies too so you are in a better position to know what is really going on there.
It may go down with treatment, but some have to be biopsied (with a needle, had it done many times, sounds worse than it is) and analysed to be sure what it is, and don't just let the doc dismiss you - that is one unhappy thyroid.
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