Misdiagnosised

[jjohnson5409]

I am a 40 year old female.  I was diagnosised w/ Fibromyalgia or CFS from a Endo dr.  I feel after reading other peoples problems that this is an incorrect dx.   I experience wt gain, severe fatigue, bloating, horse voice, sluggish, my husband saids i slurr my words at times, unable to focus, lack of sex drive, depressed.  
my lab results are:

Tsh   0.94
T4    0.8
T3 was not taken this time but the ent i went to last year said it was kinda low
ACTH plasma  10

IGF-1   162
cortisol free 24hr totol volume 2500,   free unine 20.1, creatinine urine 1.58
FSH 7.1
LH  2.2
prolactin 3.8
estradiol 57
cortisol am  8.2

I have had a thyroid nodule for several years, ultrasound shows it is only slowly growing , not big enough for BX.
The ultrasound also showed that both lobes are growing.  

I don't think I can except the dx of fibro or cfs.   reading this post and others I feel i should be on some kind of thyroid meds to make my thyroid optimal. not on the low side of normal.  I had an Abalation of my uterisis in March because of irregular long heavy periods.  
Can anyone suggest anything to me?    

thank you

[jjohnson5409]

ok, new news.  I went to the gyno today.  I had another ultrasound w/ the doctor right there.   She did diagnosis me w/ PCOS.  my female hormone levels were ok.  only my FT4, Ft3, coritsol, acth were low.   I have wt gain,high cholest.,thinning hair on top,depression,oily skin, fatigue, muscle aches, major ovarian cyst,  i did have heavy periods lasting 10 to 20 days but I had an albation in Feb.2009 and that helped.  
The doctor also found that my Ovarian artery has a buldge in it.  she was quite concerned about that.  I have really no pelvic pain , only sometimes during intercourse or beginning of my period.  

I asked the doctor if all these other problems...low cortisol, thyroid are related and she said absolutely because PCOS is part of the  endocrine.  it is hard to pinpoint the start of it all.  maybe the artery thing started it.  I go for an MRI on tuesday, of the pelvic, abdomen, adrenals and arteries in the pelvic region.  I am kind of nervous.  maybe they will find out what is really wrong and treat me properly.  i hope so.   i am praying so.  i don't want to live this way.   i am so glad for this site I could cry!  

[PlateletGal]

In case you have PCOS.... there is still is treatment for this condition. However, a low cortisol result (to my knowledge) is not common in PCOS, but you can ask an Endocrinologist (a good one). Infrequent or missed periods can be do to CFS.... trust me, I know many CFS patients who have the same problem and it happened to myself.

What are the symptoms of polycystic ovary syndrome (PCOS)?
Not all women with PCOS share the same symptoms. These are some of the symptoms of PCOS:

infrequent menstrual periods, no menstrual periods, and/or irregular bleeding
infertility (not able to get pregnant) because of not ovulating
increased hair growth on the face, chest, stomach, back, thumbs, or toes—a condition called hirsutism (HER-suh-tiz-um)
ovarian cysts
acne, oily skin, or dandruff
weight gain or obesity, usually carrying extra weight around the waist
insulin resistance or type 2 diabetes
high cholesterol
high blood pressure
male-pattern baldness or thinning hair
patches of thickened and dark brown or black skin on the neck, arms, breasts, or thighs
skin tags, or tiny excess flaps of skin in the armpits or neck area
pelvic pain
anxiety or depression due to appearance and/or infertility
sleep apnea—excessive snoring and times when breathing stops while asleep


http://www.womenshealth.gov/faq/polycystic-ovary-syndrome.cfm

[PlateletGal]

published in "The Endocrinologist" ---- it is time to educate some of our physicians !!!!!!!!


Hypothalamic-Pituitary-Adrenal Axis Function in Fibromyalgia and Chronic Fatigue Syndrome

http://journals.lww.com/theendocrinologist/Abstract/2002/11000/Hypothalamic_Pituitary_Adrenal_Axis_Function_in.8.aspx

[PlateletGal]

If you have secondary adrenal insufficiency (possibly caused by CFS).... this is what many physicians are prescribing for their patients to give them much needed relief :

http://www.google.com/search?hl=en&q=5+MG+prednisone+%2B+CFS+%2B+endocrinologist&aq=f&oq=&aqi=

[PlateletGal]

Welcome to my world. I'm sorry that you are experiencing many of the same things that I had to go through.

Some considerations so that you can find a physician who can help you:

1) Call around and try to find an Endocrinologist who frequently diagnoses and treats secondary adrenal insufficiency. Consider printing out information from this website about low cortisol levels found in CFS patients and the thyroid information from Dr. Holtorf.

2) Do you meet the criteria for PCOS ? Because irregular periods are common with CFS and all of the hormonal problems we have. After my illness took a turn for the worse and I had secondary adrenal insufficiency, I quit having periods and my hormone levels were all low.

3) Consider seeing a physician who specializes in bio-identical hormone therapy. Many of these physicians are considered "alternative medicine" practitioners, but these physicians have been a blessing to me. You need relief and answers and you aren't getting them.

[jjohnson5409]

the infectous dz doctor gave me a sheet to put my morning and pm temps on.  how does this diagnosis thyroid problems?  I went to another doc today.  she told me my thyroid is fine that is 5 doctors total.  My TSH was 0.94  my FT4 0.9  my FT3 235  all normal but in the low range.  so I guess there is nothing I can do.  with my coritsol being 6 low. nobody wants to prescribe me anything.  Now I am being diagnosised w/ PCOS.  No meds for that either.  Doctors just don't understand when I say I feel fatigued.  I let them know I really can not function!  think, even stay away to watch TV.  I feel like I live in a bubble and I watch everyone outside live.    

[donlyn]

Take your AM temperature as soon as you wake up.Place the thermometer at your bedtabel and try not to move much before you take it. Jot down the result and bring to Endo. Goodle DR. Broda Barnes -great info
My thryoid tests were "normal" for months. I finally was diagnosed withi Hasshimoto's (hypothyroid)
Also had the bleeding problems...I resisited a Hysterectomy for 10 years...I had my period every other week...finally became anemic and gave in to the surgery at 52
Hope this helps
Donna

[PlateletGal]

I didn't gain weight with the low-dose steriods... probably because they were just replacing what my body wasn't able to produce.

Check out our health pages (look to the upper right of your screen). Pathogen killing treatments (as I refer to them) are frequently prescribed for people who have CFS. They are set out to target the bacteria and/or viruses that are making us so ill. Interestingly enough... many other illnesses (autism and autoimmune disease patients) are having luck with antibiotic therapy. For more information.... google "The Roadback Foundation" --- be sure to check out their testimonials.

[jjohnson5409]

What is a pathogen killing treatment?   is that for parasites?   that is funny you said that as the infectous dz doc ordered that lab on me.  

Did the low does steriods help?  have you gained wt?   i hear they do that.  but even overweight now i would be willing to try if it makes me feel better.  thank for the site.  

[PlateletGal]

I know that I had hypothyroidism, although my thyroid labs were also normal. We've been discussing this in MedHelp's complementary medicine and talking about what we've done to correct this imbalance. Here is a link:

http://www.medhelp.org/posts/Complementary-Medicine/Iodine/show/756347



jjohnson5409,

Dr. Mercola just posted a wonderful article on adrenal fatigue (signs / symptoms). Here is a link to that. I know that some people are being diagnosed with fibromyalgia, when they actually have thyroid and/or adrenal problems instead !

http://articles.mercola.com/sites/articles/archive/2009/09/05/Most-Common-Cause-of-Fatigue-that-is-Missed-or-Misdiagnosed-by-Doctors.aspx

[fibrohurts]

PlateletGal,  

I am going to print out what you said about the Thyroid stuff and take it to my doctor!!!!  They always think my thyroid is "off" and then do the standard blood test and it doesnt show  a problem. I have never asked them my numbers though.

[PlateletGal]

Both the sed rate and the CRP detect inflammation. The CRP is a more sensitive test than the sed rate. If you've been ill for awhile and have had previous sed rates done, then you may want to ask your physician for the results.

I think my ACTH level was only 5. I can't remember what the normal range was, but the normal ranges can vary depending on the lab and the methology they used. I was originally prescribed low dose steriods (5 MG --- twice daily) and then prescribed a pathogen killing treatment.

[jjohnson5409]

Is the SED rate kinda the same as C-Reactive protein?  
Was your ACTH simular to mine.   6     18    20  ?    

my starting cortisol was 6 !    so do I have secondary AI?   and what does this have to do with my thyroid?   or does it?   Did your doctor put your on steroids?   I am just so new w/ this and you guys are always full of the right answers or lead me in away to approach my doctor for additional test that I SHOULD have.   I feel so much better knowing there are people out there who are experiencing the same problems as I am having w/ doctors and symptoms.  thanks you so much for your help.  

[PlateletGal]

My ACTH was normal, but also on the low range. Had it been one point lower, I would have been diagnosed with Addison's disease.

Do you have a copy of your ACTH results ? Some Endocrinologists will not diagnose secondary adrenal insufficiency. My Endocrinologist did after doing a cortisol level, ACTH level and then the ACTH stimulation test. It was the ACTH stimulation test that led him to my secondary diagnosis.... common with CFS.

You are right. When my cortisol level was low, my C-Reative Protein was high.

What has your sed rate been in the past ? The reason why I ask is because they often find in CFS patients... that we have a low sed rate (but within normal range).


Sed Rate (ESR) --- The most consistent laboratory abnormality in patients with CFS is an extremely low erythrocyte sedimentation rate (ESR), which approaches zero. Typically, patients with CFS have an ESR of 0-3 mm/h. An normal ESR or one that is in the upper reference range suggests another diagnosis.


source: http://emedicine.medscape.com/article/235980-diagnosis

http://www.medhelp.org/health_pages/Fibromyalgia/Diagnostic--Blood-Tests-to-Help-Diagnose-CFS/show/376?cid=39

[jjohnson5409]

I meant to say WBC and C-reactive protein was high.  sorry .   its the fog thing.  

[jjohnson5409]

I have not had the RT3.  My GP order a FT3 and it was 230   230-420 range.   I also had the ACTH stimulation test.  Apparently my cortisol was low at 6   10-40 range.   the endo said that I did respond from,
6    then injection 30 minutes later 18 then 20 in an hour.   he said since I reacted to the injection that he could not say I had adrenal insuff.    I hear about the pituitary but they say it is rare for the pituitary to be the cause.  my initial ACTH was 10. again in the normal but low normal.   My WBC was high at 14.4 and neutrophils were like 14,000.   C-reactive protein was 8,47 extremely high.   the endo said before we do anything that I must see an infectous dz doc.  But on the other sites I see that if the cortisol is low I can not fight inflamation/ infections.  So Why would he send me to Infectous dz.  Does he not know that low cortisol can be the reason why the WBC and C-reactive protein is low?   All that I know is I am living in a fog.   I feel like just out of it. so very tired.  and all these doctors keep passing me on to somebody else.    

Any thoughts?  
thank you

[PlateletGal]

There are many other possible conditions that I (and others) believe should be ruled out before accepting a fibromyalgia or CFS diagnosis. For more information, check out our health pages and click on "Newly Diagnosed ?".

As far as a thyroid problem.... I'm hearing that many Endocrinologists have been wanting to change the normal ranges. Why this hasn't been done yet ? I have no clue. It is weird because the majority of fibro and CFS patients have a low thyroid, and yet that goes undected with the standard thyroid tests:

T3 REVERSE -- "The mix of treatments needed varies from patient to patient. There are some abnormalities that are common. For instance, close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals due to pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3, is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions."


Kent Holtorf, M.D.  --- link to article: http://www.chronicfatiguesupport.com/chronic-fatigue-syndrome-treatment.htm

[SuzCat]

I'm having similiar difficulties with my health. I highly recommend that you post on the Thyroid forum here. They're very supportive and full of exertise and good advice.
It will help them if you post the results range for your thyroid tests.

Good luck!

[igarfy]

I agree, go to a alternative doctor and have more tests done on your thyroid. The standard test for low thyroid is too gereral and it sounds like you have some thyroid issues. But, I also hear in your post chronic fatigue. Have you been tested for Lyme or Lupus? Some doctors just don't want to be bothered with us. Also how about perimenapause?. I started menopause at 41.  Good luck. Namaste, Teri