Aa
Someone please help!
Quick History:
As a child I was thin, had a hard time putting on weight and ate round the clock. My biggest issues were Chickenpox at age 6 which I almost died from being there were too many on my little body (some were stacked 3 high, and I had them everywhere...even in the no-sunshine areas and internally) and the occasional sinus infection.
About 5 years ago I came down with Mono and was fully recovered within 3 months of getting it (2003). A year later I moved to Hawaii and had rampid problems with MRSA to the point of having to quit school as it was endangering my life to continue going to campus. By Spring 2005, I was having swallowing issues and it was then doctors realized I had a cyst and nodule in the right lobe of my thyroid. June/July 2005, I ended up in the ER several times for unknown causes. I was shaking/convulsing, had cold sweats, extremeties felt like they were asleep (pins and needles feeling), every muscle in my body ached like I'd run a marathon...all this was summed up by the ER as Viral. Although my bloodwork came back absolutely normal. NO elevations in the white cell count. I was re-referred to the Endocrinologist. He suggested that even though my levels were in the normal range he wanted to follow my condition. So a few biopsies (all normal) and ultrasound's later...he noted I was Hypothyroid (based on symptoms and comprehensive medical history of symptoms) even though the lab work would suggest otherwise. He also said he suspected Addison's based off of the ER visits and other long-term complaints made throughout my life found in my medical record. He ended up retireing a year later before we really delved into finding out whether he was right about Addison's or not. My current doctors and Endocrinologist won't even call my case Hypothyroid as they are "by the book" doctors and won't consider symptoms. We are now battling infertility (PCOS).
I need help. I am at my wits end with doctors and especially the ones who when I walk in the door they know more about what my body is feeling than me (apparently). They turn off their ears, look at my labs, and tell me my educated brain is not right in its conclusions. Yes, if I seem a bit jaded it's because I am. 4 years of dealing with doctor's who won't listen, being referred to every doctor under the sun, and still no help. I have a 19mo old and I can barely function during the day let alone try to keep up with my very energetic child. I need a doctor who is willing to help me and listen to me. I need the whole thyroid issue put to rest once and for all.
Any suggestions/comments/or even questions would help greatly!
Thank you!
KD9ER
As a child I was thin, had a hard time putting on weight and ate round the clock. My biggest issues were Chickenpox at age 6 which I almost died from being there were too many on my little body (some were stacked 3 high, and I had them everywhere...even in the no-sunshine areas and internally) and the occasional sinus infection.
About 5 years ago I came down with Mono and was fully recovered within 3 months of getting it (2003). A year later I moved to Hawaii and had rampid problems with MRSA to the point of having to quit school as it was endangering my life to continue going to campus. By Spring 2005, I was having swallowing issues and it was then doctors realized I had a cyst and nodule in the right lobe of my thyroid. June/July 2005, I ended up in the ER several times for unknown causes. I was shaking/convulsing, had cold sweats, extremeties felt like they were asleep (pins and needles feeling), every muscle in my body ached like I'd run a marathon...all this was summed up by the ER as Viral. Although my bloodwork came back absolutely normal. NO elevations in the white cell count. I was re-referred to the Endocrinologist. He suggested that even though my levels were in the normal range he wanted to follow my condition. So a few biopsies (all normal) and ultrasound's later...he noted I was Hypothyroid (based on symptoms and comprehensive medical history of symptoms) even though the lab work would suggest otherwise. He also said he suspected Addison's based off of the ER visits and other long-term complaints made throughout my life found in my medical record. He ended up retireing a year later before we really delved into finding out whether he was right about Addison's or not. My current doctors and Endocrinologist won't even call my case Hypothyroid as they are "by the book" doctors and won't consider symptoms. We are now battling infertility (PCOS).
I need help. I am at my wits end with doctors and especially the ones who when I walk in the door they know more about what my body is feeling than me (apparently). They turn off their ears, look at my labs, and tell me my educated brain is not right in its conclusions. Yes, if I seem a bit jaded it's because I am. 4 years of dealing with doctor's who won't listen, being referred to every doctor under the sun, and still no help. I have a 19mo old and I can barely function during the day let alone try to keep up with my very energetic child. I need a doctor who is willing to help me and listen to me. I need the whole thyroid issue put to rest once and for all.
Any suggestions/comments/or even questions would help greatly!
Thank you!
KD9ER
You mean they don't get their Ph.D in "Not listening"??? :) I wish there was some sort of BBB for doctors! Kind of like that 1-800 Dentist thing. Except it should be for doctors. :)
Just keep in mind, it is the drs that are closed minded. If they opened up their minds, they might have to do something other than take out a pen and write a rx. they might have to test and then evaluate those tests, or lheaven forbid listen to the patient...oh no!!
Didn't you know there is a mandatory class they take..."How to block out your pts words, while pretending to be listening." there is a 101 and a 102 and even a 103 for that one.
Didn't you know there is a mandatory class they take..."How to block out your pts words, while pretending to be listening." there is a 101 and a 102 and even a 103 for that one.
Hi,
Looks like you are getting great advice from all the above posters!
WELCOME to the Thyroid Community!
Cheryl - Co Community Leader
Looks like you are getting great advice from all the above posters!
WELCOME to the Thyroid Community!
Cheryl - Co Community Leader
The Aug.09.05 Cortisol test was a fasting test done in the am at 0830. There were no other tests that day. No estrogen...birth control...etc. I changed nothing in my routine.
Thank you for the Saliva Test info!!! I am looking into that. :)
I have felt the lump in the throat feeling since March 2005...I went in to the docs because of swallowing issues. They said it was the cyst causing the feeling but it never went away, it only felt a little less obvious after they drained it. I had the cyst drained 5 times over a year. The final time (Mar 2006) the cyst was mostly solid...no fluid to pull out even with the 23 gague needle. I've had FNA's done pretty much annually since 05. The last was earlier this year. All come back normal no "hot" or active nodule indications. The lump in the throat issue is why I want the Right lobe out. If I have a shirt on with collar I feel like I'm being strangled! I hate it! My husband can't even touch my throat because I feel like anything touching it sparks that feeling. I have even stopped wearing my necklaces. I get pangs of pain at least once a day. I haven't found any pattern to it. Most of the time I'm sitting still with my head facing forward...??? My Endo said it was the nodule causing the pain. Is she wrong??? Or could she be wrong?
My lab tests for my HcG are never right. I was 12 weeks pregnant with my son when the blood and urine finally popped positive. They'd done weekly tests from mid March 06 until it popped on May.01.06! When they did the ultrasound there was the hearbeat, and a fetus at 12 weeks! Since my son, I've miscarried 3 times. I was on the IUD (Mirena) and it pushed my body into hyper-drive for producing fertile eggs. The first time I miscarried I was not even 8 weeks. The second time I was 11 weeks. There were 3 definate embryo sacs and 2 more possible. The third time was cause of them taking the IUD out at 5 weeks. I know the IUD was what caused the miscarriages, but the hormone from the IUD is what caused my body to act as if it were on Clomid! I was on the IUD from March 2007 to January 2008.
The fact that my pregnancy hormones are off this far only furthers my belief that other hormones are out of whack. But the doctors deny this. They just switch my due date to reflect a 6 week positive pregnancy test and tell me I'm not as far along as I thought. Thanks to them my son was 3 weeks over due (21 days exactly) and I abrupted after 1 month of 2 minute contractions all day, every day. I was walking, talking, and joking through the contractions so they were not the "real" thing according to the OBs. Even after abruption they made me push him out!!! This is the level of docs I'm working with.
As far as age, I am only 24. I know this plays a huge role in why they are not taking me seriously. A lot of my docs believe you can't have problems like this at this age. :(
Thank you Stella5349! I am still trying to learn all the terminology, but will definatly go grab some books on Thyroid/Adrenals! Thank you for the suggestion! I will start requesting some more lab work too!
-KD9ER
Thank you for the Saliva Test info!!! I am looking into that. :)
I have felt the lump in the throat feeling since March 2005...I went in to the docs because of swallowing issues. They said it was the cyst causing the feeling but it never went away, it only felt a little less obvious after they drained it. I had the cyst drained 5 times over a year. The final time (Mar 2006) the cyst was mostly solid...no fluid to pull out even with the 23 gague needle. I've had FNA's done pretty much annually since 05. The last was earlier this year. All come back normal no "hot" or active nodule indications. The lump in the throat issue is why I want the Right lobe out. If I have a shirt on with collar I feel like I'm being strangled! I hate it! My husband can't even touch my throat because I feel like anything touching it sparks that feeling. I have even stopped wearing my necklaces. I get pangs of pain at least once a day. I haven't found any pattern to it. Most of the time I'm sitting still with my head facing forward...??? My Endo said it was the nodule causing the pain. Is she wrong??? Or could she be wrong?
My lab tests for my HcG are never right. I was 12 weeks pregnant with my son when the blood and urine finally popped positive. They'd done weekly tests from mid March 06 until it popped on May.01.06! When they did the ultrasound there was the hearbeat, and a fetus at 12 weeks! Since my son, I've miscarried 3 times. I was on the IUD (Mirena) and it pushed my body into hyper-drive for producing fertile eggs. The first time I miscarried I was not even 8 weeks. The second time I was 11 weeks. There were 3 definate embryo sacs and 2 more possible. The third time was cause of them taking the IUD out at 5 weeks. I know the IUD was what caused the miscarriages, but the hormone from the IUD is what caused my body to act as if it were on Clomid! I was on the IUD from March 2007 to January 2008.
The fact that my pregnancy hormones are off this far only furthers my belief that other hormones are out of whack. But the doctors deny this. They just switch my due date to reflect a 6 week positive pregnancy test and tell me I'm not as far along as I thought. Thanks to them my son was 3 weeks over due (21 days exactly) and I abrupted after 1 month of 2 minute contractions all day, every day. I was walking, talking, and joking through the contractions so they were not the "real" thing according to the OBs. Even after abruption they made me push him out!!! This is the level of docs I'm working with.
As far as age, I am only 24. I know this plays a huge role in why they are not taking me seriously. A lot of my docs believe you can't have problems like this at this age. :(
Thank you Stella5349! I am still trying to learn all the terminology, but will definatly go grab some books on Thyroid/Adrenals! Thank you for the suggestion! I will start requesting some more lab work too!
-KD9ER
I have been tested for Ciliac when my son was thought to have it over a year ago. Turns out he's a severe GERD baby. He's good though. I was negative. My 1st Cousin has Celiac Disease and Chrones (sp?)... I know the right diet can help tremendously in Celiac. My cousin was not supposed to live past 5! He's 17 and about to graduate high school! :) He's been so healthy since being mostly homeopathic meds. There were a few years where we didn't think he'd make it, but my Aunt knew the doctors were wrong, pulled him from the hospital at 40lbs (down from 100lbs) and took him to the Homeopathic Docs. He walked back into Children's Hospital not 2 months later and the docs almost died! They couldn't believe he was still alive and almost back to his regular weight! :)
There are some awesome support sites out there for Celiac's! Check them out through Google Search. They even post great recipe's! :)
There are some awesome support sites out there for Celiac's! Check them out through Google Search. They even post great recipe's! :)
I'm very new to all the lab test lingo. Half of those tests mentioned above I've never heard of.
I did find a few:
- Free T3 (June 26, 2007) Result: 4.3 pg/mL (our lab range: 2.3-4.2).
- Cortisol were all fasting and all in the AM before 9am...both were taken around 8:30am. Both measured by ug/dL.
- Gliadin IGA June.26.07 @ 310pm: 8 units
- Gliadin IGG June.26.07 @ 310pm: 1 unit
- Protoporphy June.26.07 @ 310pm: 41 ug/dL
- Thyroid PER Jul.12.05 @ 1129am: 0.08 Index (lab range: 0-.79)
- Phosphorus Oct.04.05 @ 0735am: 4.6 mg/dL
- Alk Phos May.17.05 @ 0953am: 17 U/L
No results for the following:
-ACTH
-DHEA
-ANA
-Auto Immune
-Globulins
-TSI
-FSH
-Vit B
-Saliva
I did find a few:
- Free T3 (June 26, 2007) Result: 4.3 pg/mL (our lab range: 2.3-4.2).
- Cortisol were all fasting and all in the AM before 9am...both were taken around 8:30am. Both measured by ug/dL.
- Gliadin IGA June.26.07 @ 310pm: 8 units
- Gliadin IGG June.26.07 @ 310pm: 1 unit
- Protoporphy June.26.07 @ 310pm: 41 ug/dL
- Thyroid PER Jul.12.05 @ 1129am: 0.08 Index (lab range: 0-.79)
- Phosphorus Oct.04.05 @ 0735am: 4.6 mg/dL
- Alk Phos May.17.05 @ 0953am: 17 U/L
No results for the following:
-ACTH
-DHEA
-ANA
-Auto Immune
-Globulins
-TSI
-FSH
-Vit B
-Saliva
have you been tested for gluten problems? (i cant spell it but) celiacs have a hard time putting on weight my brother-in law was like that and has to be on a gluten free diet,. just a thought.
In 2005, your TSH may be was to high for you even being in normal range but now is OK, how about you free T3, have you tested it? PTH?, the cortisol looks ok is 10 micrograms/dL? and phosphorus ? If they suspected Addison what else they asked you? usually potassium is high in addison.. ; but did they asked you for ACTH test? DHEA? What about autoimmune diseases? Did you tested for ANA's? and thyroid antibodies? (TPO and anti-Tg)? I think your cyst is quite big, when was the last time they biopsy you?
When people have symptoms, normal analyses aren't enough, may be they did a full pannel of analyses , but have you checked your Globulins? (IgG, IgE, IgA, IgM
When people have symptoms, normal analyses aren't enough, may be they did a full pannel of analyses , but have you checked your Globulins? (IgG, IgE, IgA, IgM
Ok from what I am seeing on the cortisol/ Addisons theory. Personally I do not think you have Addison's - it just doesn't seem to show that in your blood work. BUT it definately shows you are having adrenal "distress" or fatigue. Addisions usually has a very very low cortisol level like 4 that doesn't get better without HC.
Your ranges for TSH is completely outdated - AACE is .3 - 3.0 NOT 5.10 ( for heavens sake most feel like death even above 3.0 )
let alone normal at a 5.0!! Give me a break - (tell your lab to get with the times!!)
Now a day doctors will ONLY DX an abnormal cortisol with Addision's or they dismiss the case entirely.
and most do not look at "fatigue" as a problem. Grrrrrrrr!!!!
Please research more on the adrenal fatigue area - I suggest Dr James Wilson's Adrenal fatigue Syndrome. Either google it - or definately go and buy the book and take the symptom related tests to prove your case. I am betting this is your problem with your cortisol and causing you some of these symptoms.
Now with the theory of adrenal fatigue IF you look at the consistant TSH values you are in the high ranges of normal until Dec 06. Then you plummet to a hyper range. Most symptom free thyroid patients feel at their best around the 1.0 TSH values. I see you all over the boards which would make me think there is a great possibility of an autoimmune antibody situation. Too bad the doctor who cared is retired - you need to move forward with antibody testing. Letting these antibodies go out of control as I suspect CAN cause adrenal distress and will knock you down eventually too.
Hmmmmmm I am looking at the wonderful reading you had on cortisol on Aug 9 2005 do you recall when exactly you had that done at what time? Were the others tests around the same time too? Did you change anything like adding estrogen or????
I think to really dig deep into a possible adrenal situation you will need to buy a 24 hr saliva test - get it at canaryclub/dot/com and do the test and ship it out yourself. It will run about $240 and you need to preform ALL the tests indicated on the box. All FSH-cortisol-everything!!
A TPOab testing and a TSI test is absolutely necessary for you. I believe (and this is just a patient's guess) that you have Hashimoto and possible Grave's antibodies floating around that is adding to your grief. I am also thinking it definately would not hurt to run a Vit B deficent test too.
May I ask if you have ever noticed swelling or a tightness around your neck? Like a lump in your throat or comparsion feelings?
Your BBT is abnormal as you know which definately indicates to me you are sub clinical hypothyroid - even if your TSH is reading if normal after your tests in December 06. again this could be the Hashi antibodies causing all these problems but not showing on labs. AGAIN this is ignorant physician care when they only go by labs and NOT symptoms to further test!
Did anyone indicate a possible "hot" nodule situation to you? I see you must of had some scan to have measurements of it. What else did the scan say? was there any solid mass? Was an uptake done or any FNA done on the actual nodule?
This can be unraveled - it will take time and a doctor who is totally knowledgable on thyroid will be of great help. Stay away from the endo - diabeties!!!!
BTW your glucose and everything else - to me - look good. I do not believe your thyroid is 99% the problem - I believe it is your adrenals about 75% and then your thyroid - maybe 20%
Depending on your age I think you may also be indicating a hormone imbalance that only the saliva test would pick up. Betting - I think your are reaching a change in FSH - I think.
These are my thoughts. Usually I miss something that another member may pick up - I covered at least what I think is logical-
Hopefully more members will stop by this post and reply too.
Your ranges for TSH is completely outdated - AACE is .3 - 3.0 NOT 5.10 ( for heavens sake most feel like death even above 3.0 )
let alone normal at a 5.0!! Give me a break - (tell your lab to get with the times!!)
Now a day doctors will ONLY DX an abnormal cortisol with Addision's or they dismiss the case entirely.
and most do not look at "fatigue" as a problem. Grrrrrrrr!!!!
Please research more on the adrenal fatigue area - I suggest Dr James Wilson's Adrenal fatigue Syndrome. Either google it - or definately go and buy the book and take the symptom related tests to prove your case. I am betting this is your problem with your cortisol and causing you some of these symptoms.
Now with the theory of adrenal fatigue IF you look at the consistant TSH values you are in the high ranges of normal until Dec 06. Then you plummet to a hyper range. Most symptom free thyroid patients feel at their best around the 1.0 TSH values. I see you all over the boards which would make me think there is a great possibility of an autoimmune antibody situation. Too bad the doctor who cared is retired - you need to move forward with antibody testing. Letting these antibodies go out of control as I suspect CAN cause adrenal distress and will knock you down eventually too.
Hmmmmmm I am looking at the wonderful reading you had on cortisol on Aug 9 2005 do you recall when exactly you had that done at what time? Were the others tests around the same time too? Did you change anything like adding estrogen or????
I think to really dig deep into a possible adrenal situation you will need to buy a 24 hr saliva test - get it at canaryclub/dot/com and do the test and ship it out yourself. It will run about $240 and you need to preform ALL the tests indicated on the box. All FSH-cortisol-everything!!
A TPOab testing and a TSI test is absolutely necessary for you. I believe (and this is just a patient's guess) that you have Hashimoto and possible Grave's antibodies floating around that is adding to your grief. I am also thinking it definately would not hurt to run a Vit B deficent test too.
May I ask if you have ever noticed swelling or a tightness around your neck? Like a lump in your throat or comparsion feelings?
Your BBT is abnormal as you know which definately indicates to me you are sub clinical hypothyroid - even if your TSH is reading if normal after your tests in December 06. again this could be the Hashi antibodies causing all these problems but not showing on labs. AGAIN this is ignorant physician care when they only go by labs and NOT symptoms to further test!
Did anyone indicate a possible "hot" nodule situation to you? I see you must of had some scan to have measurements of it. What else did the scan say? was there any solid mass? Was an uptake done or any FNA done on the actual nodule?
This can be unraveled - it will take time and a doctor who is totally knowledgable on thyroid will be of great help. Stay away from the endo - diabeties!!!!
BTW your glucose and everything else - to me - look good. I do not believe your thyroid is 99% the problem - I believe it is your adrenals about 75% and then your thyroid - maybe 20%
Depending on your age I think you may also be indicating a hormone imbalance that only the saliva test would pick up. Betting - I think your are reaching a change in FSH - I think.
These are my thoughts. Usually I miss something that another member may pick up - I covered at least what I think is logical-
Hopefully more members will stop by this post and reply too.
Unfortunately my GP is not too good. She only focus' on one problem at a time and she thinks there is nothing wrong with my Thyroid besides the Cyst and Nodule. Go figure. Right now she's focused on my Infertility. Which, to me makes it all related but the doctors I deal with would rather diagnose me with 10 different problems then 1 or 2 that encompass everything. It just seems weird. They don't listen.
My Endo is decent. She listens, but also thinks my Thyroid function is normal. She's a "by the book" doc. This is why I am so frustrated. I believe a good 85% of patients are probably text book cases, but there are those of us out there whose body's function at a different level. Is it wrong for me to be so strong-willed with my health? I just feel that my Thyroid is 99% of my problem. I feel it in my gut. But how do I get the people with the Ph.D's to listen????
I was told to look into the Basal Body Temp as it is supposed to be more accurate than blood work...and since I was diagnosed with PCOS, I started charting it to find my ovulation cycle. My resting BBT is 92.3F! It's supposed to be no lower than 97.3F!!!! I am obviously WAY outside the norm on this. Yet again the doctors will not listen to this theory as blood work is sooooo much more accurate in their eyes. Funny how I was 12 weeks pregnant before my blood work and urine actually came out positive. This all confirmed by an ultrasound. I keep looking at the trend with my hormones and all of them are off...so isn't it logically possible that the results of my blood work might not be text book?
Sorry for the rant. I hope I can get some answers. Any suggestions???
My Endo is decent. She listens, but also thinks my Thyroid function is normal. She's a "by the book" doc. This is why I am so frustrated. I believe a good 85% of patients are probably text book cases, but there are those of us out there whose body's function at a different level. Is it wrong for me to be so strong-willed with my health? I just feel that my Thyroid is 99% of my problem. I feel it in my gut. But how do I get the people with the Ph.D's to listen????
I was told to look into the Basal Body Temp as it is supposed to be more accurate than blood work...and since I was diagnosed with PCOS, I started charting it to find my ovulation cycle. My resting BBT is 92.3F! It's supposed to be no lower than 97.3F!!!! I am obviously WAY outside the norm on this. Yet again the doctors will not listen to this theory as blood work is sooooo much more accurate in their eyes. Funny how I was 12 weeks pregnant before my blood work and urine actually came out positive. This all confirmed by an ultrasound. I keep looking at the trend with my hormones and all of them are off...so isn't it logically possible that the results of my blood work might not be text book?
Sorry for the rant. I hope I can get some answers. Any suggestions???
LABS: (TSH Norm Range for Lab: 0.35-5.10)
May.14.2005 TSH 2.351
May.17.2005 Sodium 139
Potass 4.3
Cortisol(am) 10.0
Jun.15.2005 TSH 2.647
FT4 1.1
Jul.12.2005 TSH 1.439
Aug.09.2005 Cortisol(am) 17.9
Oct.04.2005 TSH 2.485
FT4 1.0
Glucose 91
Sodium 140
Potass 3.6
Calcium 10.0
Dec.06.2005 TSH 0.916
FT4 1.1
Apr.28.2006 TSH 1.455
FT4 1.0
Glucose 88
Sodium 140
Potass 4.1
Calcium 10.0
May.01.2006 Glucose 77
Sodium 139
Potass 4.0
Calcium 9.5
Jan.27.2007 TSH 1.421
May.04.2007 Glucose 99
Sodium 139
Potass 3.9
Calcium 9.8
Jun.26.2007 TSH 1.797
FT4 1.2
Feb.22.2008 TSH 1.471
CYST: 4.2 x 1.7 x 3.2cm
NODULE: 1.4 x 1.2 x 0.7cm
May.14.2005 TSH 2.351
May.17.2005 Sodium 139
Potass 4.3
Cortisol(am) 10.0
Jun.15.2005 TSH 2.647
FT4 1.1
Jul.12.2005 TSH 1.439
Aug.09.2005 Cortisol(am) 17.9
Oct.04.2005 TSH 2.485
FT4 1.0
Glucose 91
Sodium 140
Potass 3.6
Calcium 10.0
Dec.06.2005 TSH 0.916
FT4 1.1
Apr.28.2006 TSH 1.455
FT4 1.0
Glucose 88
Sodium 140
Potass 4.1
Calcium 10.0
May.01.2006 Glucose 77
Sodium 139
Potass 4.0
Calcium 9.5
Jan.27.2007 TSH 1.421
May.04.2007 Glucose 99
Sodium 139
Potass 3.9
Calcium 9.8
Jun.26.2007 TSH 1.797
FT4 1.2
Feb.22.2008 TSH 1.471
CYST: 4.2 x 1.7 x 3.2cm
NODULE: 1.4 x 1.2 x 0.7cm
we know what you are going through, with the docs, thats for sure.
Do you have a good GP that you can see? Sometimes they do better than a know it all endo....sorry dr lupo....
Do you have a good GP that you can see? Sometimes they do better than a know it all endo....sorry dr lupo....
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