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Old 02-16-2009, 02:09 PM   #1
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Question Help! Confused about thyroid results and lab ranges

Hello, I'm 35 and have been experiencing a lot of odd symptoms for the last several months. Since November or so, I have been very tired and unlike myself. My oldest daughter had a mono like illness before all the holidays and I thought I might have caught it because i was so tired. I have had trouble concentrating. I do have a family history of thyroid issues, my mom had a goiter removed in her 20's, and my dad was hypo. I have other family members who are hypo also. I have always watched my thyroid for changes because of it. Recently I have been experiencing a fast resting heart rate, heart palpations, extreme anxiety and even panic attacks. I had a near fainting episode and had to go to the ER one night because of it. The Dr saw my heart rate and did a thyroid panel. This was in January.
My 2005 TSH results were .75
my 2006 TSH results were .99
my 2008 TSH results were 1.01 (range .49-4.67)
my FT3 was 3.75 (range 2.50-3.90)
my FT4 was 1.11 (range .61-1.12)


in the ER just a month ago, I had a TSH of 2.9
my Ft4 was .89 (all same range scale)

I had a nuclear stress test, EKG, Echo done there too. Most came back normal with only a borderline mitral valve prolapse found. They are going to do a tilt test for POTS (posturial orthostatic tachycardia) which is an autonomic nervous system imbalance. It can be brought on by mono... but this is not confirmed. I am afraid of being mis diagnosed.

My question is this, how come when i ask Dr's, my GP, the ER dr , my gyno, and a cardiologist, they all just give me the "your in normal range" routine. But how can a persons TSH go from .75 to 2.9 and they not take that into consideration? Especially now that i am symptomatic. The cardiologist who read my stress test asked me if I had my thyroid completely checked. I also have another question: I have recently discovered that different labs use different ranges and that the new standard went from the 5.0 TSH scale to a new 3.0 one. If that is true, than isn't my 2.9 awfully close to the upper limit of that range? Even my FT4 in 2008 was at the top of the range! Why didn't any Dr do anything? I mean if you look at the complete picture, my ranges have changed drastically in 4 years. I do have an endo appt this week because i also have a slightly elevated glucose reading and my dad is a diabetic. I have my eye on my sugars too.
I have not felt right since turning 35. My hormones are going crazy i think. I have facial hair I have to pluck everyday or I'll have a go-tee! I have cysts on my ovaries and it could be possibly PCOS although i have never experienced any infertility, and my cycle is like clockwork. But my PMS is taking over my life as is anxiety. I have times where I am racey and can't settle down, and then there are times I am so tired and completely unmotivated. Can someone shed soem light on my labs, and the new range scale and what tests for thyroid, adrenals, pituitary should I ask my endocrinologist? I am so confused and just know most of my problems are some sort of hormonal issue. I mean, is it possible that even though "with in normal range" on a piece of paper, that those results were not normal for MY BODY, and are causing my symptoms? How do you get a Dr to HEAR YOU??

 
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Old 02-17-2009, 11:24 AM   #2
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Re: Help! Confused about thyroid results and lab ranges

Get tested for Hashimoto's thyroiditis. I did all you have done and the tilt table test and more. It was my Hashimoto's and a need for my thyroid function to be killed off/suppressed. Things were put off by the MDs saying you are NORMAL for so long that my adrenals suffered a collapse as well.

If you havenent had your adrenals tested of your thyroid antibodies tested... do so.
Adrenal basic test codes: ACTH and cortisol (These should be fasting state before 9 am)
Thyroid antibody test codes: TPOAb and TGAb.

MG
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Old 02-17-2009, 11:30 AM   #3
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Re: Help! Confused about thyroid results and lab ranges

thanks for the reply, I was hoping someone would reply before my appt tomorrow to the endo Dr. I just want to feel like myself again. This is so scarey when Drs dont use the new scale to diagnose patients. Unbelievable! I have been reading alot about thyroid symptoms with anxiety, heart palps, dizziness, coldness etc all what I have been experiencing. I sure hope my Endo is a good one who listens to how I feel, not just how I look on his range scale.....how did you ever get diagnosed? Is there anything i should particularly bring to his attention?

 
Old 02-17-2009, 12:08 PM   #4
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Re: Help! Confused about thyroid results and lab ranges

How did I get diagnosed? You asked the BIG question. Well I did it myself after having MDs lead me about by the nose for five years telling me.. YOUR NORMAL.

I argued and ordered my past MD to test the thyroid and then thyroid antibodies when I learned of my extensive thyroid family history. My mother and her four sisters all have thyroid autoimmune issues (One pure Graves, 2 Graves/hashimoto's, 2 pure Hashimoto's). Then there is my great aunt, grandmother, great grandmother, great great aunt.. I can go on.. the thyroid mess has been in the works for generation. My main issue was that my mom and her sisters were ashamed of their illness and didn't share with their children. We had to stumble about on our own until we discovered the source of our issues.

So I had the TSI, TRAb, TPOAb, and TGAb tests run. July 2007 I can back positive for both Graves and Hashimoto's. I was the next generation of thyroid dysfunction, but even with all the symptoms my TSH was normal so no treatment was necessary. Well NORMAL is not ALWAYS OPTIMAL!

I HAVE went through and discarded four Endocrinologists.. and settled on an integrative medicine Internal medicine MD that listens and treats me after six months of chasing my endocrinologists tail and chewing on the Hashimoto's bone.. KNOWING it was the source of many of my issues. My IM was willing to perform the lists of tests I dragged in and started me on thyroid meds given my EXCESSIVE levels of thyroid antibodies and LOW FT3 and Ft4 levels.. despite a TSH of only 2.077. We have come to trust each other and work as a team. My MD took 3 months to come around, but as each list of tests I brought in proved I had an intuitive knowledge of what was going on with my system by my symptoms.. my MD now tells me she is my script jockey and asks what I need and when. I put the pieces together for my Hashimoto's, Graves, thyroid eye disease, hypoadrenalism, PCOS, and Insulin resistance. I am lucky that my blood work backs me up on this...

Before getting my current MD a year ago, I was on the prove it isn't X kick. I have an allergist/immunologist, a dermatologist, cardiologist, neurologist, neuro-opthamologist, MFM, IM, Endo (on hold til I find the next candidate), OB-Gyn, ENT, GI.. you get the picture. Each tried to find out the cause of the symptom in the organ/system and would come back with.. take these meds.. we are clueless. My Neuro-opthamologist keyed in on the thyroid eye disease and migraines being hormonal and thyroid in origin. The Endo was notified and responded with the canned the TSH is normal.. her thyroid is not an issue. The cardiologist thought beyond a shadow of a doubt that it was POTS.. but tessting proved that it wasn't.. the only thing not normal was my thyroid levels at 5thyroid antibodies. My neurologist, neuro-opthamologist, and cardiologist.. said it is her thyroid.. and the Endo's denied. it, I used my reports and notes from my other MDs pointing fingers at my thyroid, I came loaded with over 100 journal articles on Hashimoto's and related issues. My integrative medicine MD went over the information, didn't quibble over the list of tests i wanted. Order the blood work, prescribed a script for 50 mcgs to get me started, and ordered a thyroid ultrasound. She was disgusted that the MDs hadn't prescribed the meds before then. Proof was in my bosies response, my HR and BP dropped the same day I started meds. I am now on 100 mcgs a day.

Symptoms began with the 50 mcgs of T4, but I still didn't feel right. We tried bumping the T4 to 75 mcgs and drove me hyperT in T3 while I was hypoT in T4. This was a red flag for my MFM, he said I needed my adrenals tested. So we got the works done and I can back hypoadrenal. This was tested and identified via blood serum ACTH levels being high and Cortisol levels being low normal. Saliva cortisol levels were in the tank for me. DHEA, B12, and vit D testing was done as well. Taking the prescribed hydrocortisone tablets showed and instant turn around on symptoms and allowed my thyroid Ft4 and Ft3 levels to balance out and my T4 dosages to increase. So I thought this had to be perfect, i wll start losing weight.. etc. NOPE blood work indicated that I had PCOS.. high DHEA, estrogen, and testosterone.. plus my mentraul cycle symptoms from HADES. I just thought periods were ment to be rough. But my SIL who is an OB said look into PCOS your symptoms fit. So we tested for insulin resistance and my IGF and reactive hypoglycemia cinched that diagnosis and the uterine ultrasound cinched the PCOS..

Diagnosis and treatment came from staying firm. Learning all I could and pushing my MDs to test appropriately and treat aggressively. I am 33. I began my suffering during pregnancy with my son when I was 27. My son is six and now is able to see me as a functional human being. His first four years I was just Zombie mommy. If you look up my thyroid care and concerns about the word thread series you will get my lectures on how to read and interpret test results.. why certain tests are important and more. The two basic ones are weeks 2 and 3.

I hope this helps you.
MG
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Old 02-17-2009, 12:43 PM   #5
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Re: Help! Confused about thyroid results and lab ranges

well I certainly share your determination in finding out what is wrong with me. !! Wow, you have been thru ALOT! If the TSH scale range can be so whacked, do all the others too? I mean how do you know if you can trust any test result?
Sounds like they are trying to take me down the same road. My glucose tests have been slightly elevated, 104 in aug of 2008 and in Jan of 09' 118! My dad is diabetic so I am watching that. I too have somehting like PCOS. I have never had fertility problems or irregular cycles, so my OBGYN has not totally diagnosed me with it, but I have had very painful ovarian cysyts for years. He said all my chin hair and hormone issues are normal for my age, and my ovaries are just acting spuraticly. Basically just take an advil and deal with it. Oh the mood swings! Aggitation, anxiety, depression during my monthly cycle. Sounds like you understand this completely. I have felt the last few years somehting was wrong with me and i was feeling right, but I'm a mom so just put my little complaints on the back burner because the docs didnt seem worried abt it, then why should I. Like I said, my mom had a goiter removed in her 20's, is that hoshimotos? My dad is hypo, so I have been watching my thyroid change drastically over the last 5 years. The TSH has gone from .75 to 2.9. now. My FT4 in 2008 was 1.11 and the scale was (.61- 1.12) i was at the upper limit then. Now my FT4 is .89......what does that mean? my FT3 in Aug 2008 was 3.75 (range was 2.50-3.90) upper edge of range too. No one did anything in August. I gained abt 15 lbs over last summer, but oddly, have lost it without doing anything over the last 3 mos or so. Did you have heart palps, racing heart rate, dizziness, lightheadedness, frequent bowel movements, ice cold extemities, severe chills, panic attacks? those are some of the most bothersome I have, not to mention mind fog, trouble concentrating, forgetting words...etc? Ay! Is there no governing body in medicine that sets a range and makes sure Drs follow it? I mean how can we trust anything we get tested for? All I can do is just hope for the best tomorrow at the endo and hope he is all ears! Thanks for the information, I really appreciate it. Thanks

Last edited by kbennj; 02-17-2009 at 12:44 PM.

 
Old 02-17-2009, 04:14 PM   #6
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Re: Help! Confused about thyroid results and lab ranges

NO joke! My hairstylist was the first to notice that there was issues with my thyroid! She saw that the hair was getting coarse, dry and brittle! She said it was most common in her clients who had thyroid issues... This was before the nodules had grown to where they could be seen on my neck!

BUT I didn't believe there was a need to see a Dr until thing got worse and there was a visible nodule that was th root of my problems!

 
Old 02-18-2009, 10:32 AM   #7
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kbennj

Hi, you seem extremely knowledgeable on thyroid topics here.
Not by desire, but out of necessity. My own situation and years of under treatment of my mother and her sisters, my grandmothers, great grandmothers.. you get the idea. Well i have the technical know how and the MD network to question and get answers. I am NOT a MD. I am just and educated sufferer that has a couple of MDs in the family. I discuss everything with my family MDs as well as my MDs of record. It takes time to assemble the right MD team. I just refuse to accept something as fate and just live with it. There is a way to fix or manage any problem.. we just have to get the right MD in our corner. My MDs have learned that my free time will be spent in research to make me better. I save them time and keep them up to date with treatment and policy changes. All in all it is a good partnership.

I am just freaking out ever since my near fainting episode in January. I have been to the ER with what I thought was a heart attack issue, but after all the tests, what they found was a borderline mitral valve prolapse they said i've had my whole life that is mild.
First off, take some deep breaths and try and relax. You are not alone and what you are feeling may be a result of many things from a bad medication effect.. have you looked at the Xanax you take? Or it could be endocrine in origin. I do not think it is your heart. I have a heart murmur too. Mine has been detectable since birth and is more severe. It never slowed me down, despite many an MD telling me to take it easy. *snort* I am one of those that loves to argue and disagree. If an MD tells me to take it easy, I may try a 10 mile hike.. just to prove I can. My murmur is pretty severe on the murmur scale. I just have these periodic hiccups every hour as CO2 builds up in my system and requires a release and circulation issues to my hands and feet. Being hypothyroid aggravates the circulation and heart issue. My friends and family get a kick out of my single hiccup every hour at the same time. I some times wonder if I do it in my sleep.. but that is another topic. Back on point, I doubt the fainting would be the result of your mvp or murmur.

At the time you fainted:
What was your blood pressure at the time?

What is your normal resting heart rate and body temperature?

Can you share your TSH, FT3, Ft4, ACTH, cortisol, TPOAb, and TGAb levels with me? This will give me a baseline profile on the main thyroid aggravants.

I doubt it has anything to do with this. The Dr reading my stress test asked me if I had my thyroid completely examined. I am going tomorrow to my first endo appt. I am so frustrated by this range scale debate?
Be firm with your Endo. Go in with a list of questions and refuse to leave or be pushed out the door until all your questions are answered. Start out with the questions, " What do you consider an optimal TSH value? (Answer: About 1)

What do you consider the normal TSH range to be? (Answer: 0.3-2.5 or 0.3-3.0, when dealing with pituitary or autoimmune thyroid issues TSH is often suppressed and anything over 2 can indicate hypothyroidism."

Do you test Free T3 and Free t4 values? (Ans: Yes)

Do you believe in giving a T3 supplement when there is a conversion issue or T4/T3 imbalance? (Ans: Yes)

These are my intro volley when i am interviewing a new Endo. Yes I consider my first appointment and interview of the relevant MD. If they are not up to snuff, I do not go back. I have asked for the MD to fill out my check out sheet and walked out on him before. But that is me.

Let the Endo know that your father went hypothyroid at the age of 35. Let him know your mother's thyroid was removed at the age of 20. You have a genetic predisposition to thyroid issues. This smacks of an autoimmune thyroid condition. If you haven't had testing for Graves and Hashimoto's, request that the MD run a TPOAb, TGAb, TSI, and TRAb antibody profile. knowing your tests and laying them out for your MD will get his/her attention and may change your patient MD dynamic. Most MDs brush you off unless you can talk the talk. Also come with a self-addressed stamped envelope and request a COPY of the actual lab results mailed to you when they arrive so that you can have them when you go see your other X specialists.

In my heart rate was 198 at the cardio office. I was nervous, but had taken a xanax before i came.
This is not good. Before getting my adrenals and thyroid supplemented, sittig up would jack my HR to 120. If I walked, ran, or did my martial arts I was looking at spikes in the 260 to 300 range. When thyroid and adrenal hormones are off and unable to respond efficiently to physical stimuli your heart can manifest tachycardiac behavior and irregular rhythms.

I have a whole list of adrenal, pituitary, thyroid, cortesol and sugar tests already printed up to hand to my endo tomorrow. Just wondering how you got diagnosed?.
How? Five years of complaining of symptoms with no relief despite my many specialists. They could patch my symptoms with meds.. but they couldn't cure them. In the end to get my thyroid issue diagnosed I had to argue and finally threaten my MD with negligence given my family history to get him to run an antibody panel on me given my family history of thyroid dysfunction. My closing line was given my family history and textbook symptoms PROVE ME WRONG and run the bloody TPOAB, TGAB, TRAB, and TSI. If they come back negative I will drop it and live with it. I came back positive in all of them. Then even with my antibody levels sky rocketing and having BOTH Graves and Hashimoto's, my MD said, "NOT your thyroid.. your TSH is normal." He was right about seeing the Endo being a waste. I have been through four and am going to discard a fifth. I still left the MD that diagnosed me with hashimoto's, because he refused to proactively treat my thyroid issues. Finding a forward thinking thyroid treating MD.. be they a GP, FP, IM, Endo.. etc is a difficult task. I admit I have lost my faith in Endos, The ones with in 200 miles of me are not thyroid specialists. So with my only issue being Excessively high antibody levels and suboptimal thyroid hormone levels I had to do the MD shop and walk. My cardiologist was the one that helped point me to the MD that diagnosed and treatment as secondary hypothyroid, reactive hypoglycemic, hypoadrenal, insulin resistant, PCOS in addition to the Graves and hashimoto's I had walking in. It took me seven months of aggressive MD shopping to find her. She believes in treating symptoms as well as blood levels. Normal for one is not often normal for another.. unless you are talking about family members. You have two that can help you out. i will be moving this summer to another city. I will be driving 100 miles every 2-3 months to have my endocrine issues treated by my current MD. I will look for a new MD around Knoxville though.. but the prospects are slim up there as well.


My mom had a goiter removed in her 20's, is that hoshimotos?
Goiter just means for some reason her thyroid grew to an unusually large and restricting size. The result required removal. This can happen in either Graves or Hashimoto's patients. you would have to determine if your mother was tested for either and if the thyroid was hot or cold upon removal. Getting a copy of your mother's thyroid records and history will help in your treatment. What TSH level is your mother optimal at? When you mother was your age, where was she in TSH, Ft3/T3, Ft4/T4 range? Get your mom to help you out here. Check on other family members as well. Aunts, Uncles, grandparents. Make a thyroid sufferer family tree.

My dad was diagnosed hypo at abt my age. (i'm 35). This could be Hashimoto's. You need to get his blood work and thyroid statistics as well. how much thyroid medication are they taking, what is there current and past TSh, Ft3/T3, Ft4/T4 levels? You may not be the only one under treated and having issues.

So I got my diagnosis through shear stubborness and an inability to quit despite my early MDs saying, "Your Normal with a glance at my TSH." Some things that I did that helped: keeping a daily symptom log including thyroid symptoms and severity and stats HR, T, BP. I took my vitals morning and night with spot checks when my heart or system would feel under a lot of stress. I got a physical trainer and nutritionist. I logged my daily exercise regime and food intake. I follow weight watchers. I logged all my meds. I made sure that the MDs could not point a finger at my lifestyle or diet. When the MD can not say you are just eating poorly, you are lazy and need to exercise more then they have to start looking at it more seriously. When you are serious and professional in your attack and documentation of your issues your MDs will change their perspective on you as a patient. When it all came down to it.. even the Endos say my issues are metabolic.. they were just not up to diagnosing me.

I also researched and went in to my MDs with referred publications from medical journals on the latest treatment regimes and care for my given issues. I also came in with lists of tests and firmly requested the MD order them in order to have a thorough data set to go by and treat me from. You are in the driver seat and you must manage your care as competently as you can.

My integrative medicine MD and I worked as a team to run the right series of tests to determine all my issues. You need that one MD that will work with you as well. My last issue was determined in October. Now we hope that the PCOS, reactive hypoglycemia, and Insulin resistance were the last in my line of disorders.... but I won't hold my breath. I will however keep up with my diet, exercise, and symptom logs. Doing so keeps me on track and allows me to detect when my medication levels are off and an adjustment is needed.

Good luck. I hope that my experiences can help save you some suffering and that you get to the source of your issues soon.

MG
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Old 02-19-2009, 08:00 AM   #8
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Re: Help! Confused about thyroid results and lab ranges

well, I went to the Endo yesterday. I have to say I really like him! He is a very good listener and when i asked him about the different range scales being a concern for me in my diagnoses, he just said, " I don't treat people for how they look on paper, I treat them by how they feel. I could have 50 patients all with the same thyroid numbers on paper, byt they all won't FEEL the same. Some will have symptoms, some won't." so I was very relived I think The Lord was watching over me when he brought me to this Dr. The Dr said he definately suspects thyroid issues here, but is hestent right this moment to give me any thyroid because of my already fast heart rate. My heart rate in the office was 128. He said I am experiencing symptoms of both hyper thyroid and hypo thyroid and being that I have a tilt table test scheduled with a cardiologist on the 27th, he wants to wait until then to do anything. I agree, I want an accurate tilt test. He said, lets see how that turns out we'll see what my cardiologist wants to put me on. He may put me on a beta blocker for the POTS or just my heart rate, and then my endo would feel more comfortable giving me somehting for the thyroid. He did call for a ton of bloodwork, man I went this morning for it, they took 5 huge viles from me!!! GEEZ! I know for a fact he did antibody tests, FT3 and FT4, TSH and I'm not what else, I think adreneline tests and my glucose because I have had higher fasting blood sugars than is ideal. SOooo, I have to wait a pinch longer, at least 4-5 days to see what the blood tests show. I will have the results of that at the tilt table test to tell my cardiologist and then I also am interviewing a new family Dr on March 5th. So hopefully I can assemble the right team here. Thank you so much for all of your wonderful details and insights on this. If you don't mind, I would like to share my blood work with you when i get it to see what you think. I can't tell you how much it helped me. Thanks again, Kathy

 
Old 02-19-2009, 09:10 AM   #9
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Re: Help! Confused about thyroid results and lab ranges

kbennj;
Well, I went to the Endo yesterday. I have to say I really like him! He is a very good listener and when i asked him about the different range scales being a concern for me in my diagnoses, he just said, " I don't treat people for how they look on paper, I treat them by how they feel. I could have 50 patients all with the same thyroid numbers on paper, but they all won't FEEL the same. Some will have symptoms, some won't."

This is a good sign. This MD recognizes that each person has a different optimal level and must be treated individually. As a result he may be a keeper. You lucky duck.

The Dr said he definitely suspects thyroid issues here, but is hestent right this moment to give me any thyroid because of my already fast heart rate. My heart rate in the office was 128.
I would look into getting on a mild betablocker like pindolol. It will not effect that tilt table test and only help with the tachycardia symptoms you are experiencing. The other thing that may help is going on a LOW iodine diet. Go for non-iodized salt for a while. This will calm any hyperT thyroid effects.. but the hypoT ones will magnify.

Do you crave salt often? If so you may have an adrenal issue and you do not want to cut out salt.. just minimize the iodine.

He said I am experiencing symptoms of both hyper thyroid and hypo thyroid and being that I have a tilt table test scheduled with a cardiologist on the 27th, he wants to wait until then to do anything. I agree, I want an accurate tilt test.
It can be scary. The had to give me nitroglycerine and my heart did not respond as expected. I was laid low by the tilt table test. I wish you the best there. the worst was it triggered this all over body chill, shakes, and sweating. My BP also about bottomed out. The MD said only my stubborness kept me from going under. I was VERY close to blacking out. Are they going to do the IV epinephrine study along with the tilt test. That is a fun one. Mine was flat lined and indicated my adrenal duds.

He said, lets see how that turns out we'll see what my cardiologist wants to put me on. He may put me on a beta blocker for the POTS or just my heart rate, and then my endo would feel more comfortable giving me somehting for the thyroid. No harm there and it is near at hand. Many MDs want to play it safe when there are hyperT symptoms in the mix. They would rathe a person be hypoT in nature than hyperT. Less trauma to the heart.

He did call for a ton of bloodwork, man I went this morning for it, they took 5 huge viles from me!!! GEEZ! My record is 15 viles. I was fasting at the time and GLAD I brought food with me. That was more blood than when I donate.

I know for a fact he did antibody tests, FT3 and FT4, TSH and I'm not what else, I think adreneline tests and my glucose because I have had higher fasting blood sugars than is ideal. Well he should get the lab results back in his office in 7-10 days. You can bother his staff for a copy then. Then you can share with us and we can tell you what our experience thinks is up.

Your welcome Kathy.

MG
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