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Old 03-09-2013, 09:14 AM   #1
Junior Member
Join Date: Dec 2011
Location: Colorado
Posts: 16
sharper22 HB User
Please help - pcp says not CFS, endo looked up symptoms and says it is

Hey all.

Please let me know if you think this could be chronic fatigue syndrome or pituitary related - or not-, and what tests you might recommend that I forcefully request. I am hopeless at this point. I also posted this on the pituitary board.

I printed out the CDC and Mayo clinic CFS symptom lists
*increased malaise following physical or mental exertion - same exhaustion all of the time
*problems with sleep - no
*difficulties w/memory & concentration - duh, I am exhausted. I can think for a few hours after waking up in am or after naps.
*persistent muscle pain - no
*joint pain - no
*headache of a new type, pattern or severity - no
*tender lymph nodes in neck or armpit - no
*sore throat - no
*difficulty maintaining upright position, dizziness, balance problems, fainting - only orthostatic low bp
*allergies or sensitivites to foods, odors, chemicals, meds, or noise - no
*irritable bowel - no
*chills and night sweats - no
*visual disturbances, sensitivity to light, blurring, eye pain - no
*depression, irritability, mood swings, anxiety, panic attacks - the 1st 3 due to the docs not being able to find out what is wrong and exhaustion.

I am 42 y.o. female, feeling gradually more and more tired for a few years with the past year being by far the worst.
Fatigue, constantly cold no matter the layers, can't tolerate cold or hot temperatures, orthostatic low blood pressure, no libido, gained about 25-30 lbs in a year between the belly button and mid thigh only (15 lbs since June), feel queasy or not hungry most of the time, but eating for energy and (to be honest!) some comfort dark chocolate, always tired, can only think well for a few hours after waking up in am or after nap, hands feel weak. lots more little nagging things.

Have seen 3 pcps -
1st did blood workup & sleep apnea test. Said all was normal. Wanted to put me on daily stimulant.
2nd did a few more tests, said my symptoms could be tied to heart function, echo cardiograph showed everything was great. Said if I was too tired to work part time and have family life that I should quit.
3rd tested for auto immune diseases, chronic viral infections, thinks I am sub clinical hypo thyroid and my adrenal glands aren't working well. Also said to look into chronic fatigue and fibromyalgia. Also said if I didn't want to go to an endocrinologist that I should try nutritional iv therapy.
Had to stop working and my one last hobby 10/12 due to the fatigue.

Endo checked thyroid and did acth stim test. Put me on 25 mcg levothyroxine.

TSH 3.13 (.465-4.68) 2.12 in 11/11, raising steadily since then
T3 free 3.36 (2.77-5.27) was 3.48 in 11/11
Free T4 .84 (.59-2.19) was 1.3 in 2005, .95 11/11
cortisol 7.6 (4.5-22.7) was 10 in 03/12, in 7s every other check since then
ACTH 14 (10-60) only test
stim test cortisol levels 30 min 23.6, 60 min 28.7
thyroid antibodies both negative when taken in 11/11.
No other testing that falls into the endocrinology area.

8 weeks later did recheck and found that TSH had come down to 1.38, but no improvement in how I felt. Switched to smallest Armour dose and said I could use levothyroxine, armour or nothing, see you in 6 months.
Finally got into the university hospital endo yesterday. She saw the note from the 3rd pcp and zeroed in on chronic fatigue w/o even considering anything else. Seriously - she looked up the symptoms for cfs and never looked into anything else or asked any other questions. I asked about the low cortisol and low acth - possible secondary adrenal issues.
She said that I would have more tests off and different symptoms if I was having pituitary problems. But I have no other blood tests on pituitary hormones, and she didn't ask any symptoms?
She also said that my adrenals would not have responded to the stim test due to atrophy if it was secondary ai.
She went out and spoke with the head of her department - said that he said they treat subclinical hypothyroid, why not subclinical secondary AI. She chose to refer me to a chronic fatigue specialist. This makes me really angry because 1) she didn't know what the symptoms for cfs are 2) the only symptoms of cfs I have are fatigue and orthostatic low blood pressure 3)I told her that the pcp and I had looked into it and decided I don't have the main symptoms or enough of the symptoms.

Please - any advice you can give me would be so very appreciated. I have no idea what to do.

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Old 03-24-2013, 06:25 PM   #2
Join Date: Mar 2013
Location: Texas
Posts: 1
Energyzero HB User
Re: Please help - pcp says not CFS, endo looked up symptoms and says it is

Hi, I'm new here and I'm replying to your post because your symptoms sound a lot like mine when i was first diagnosed with CFS. I don't have the muscle and joint pains either but I had extreme fatigue, problems with cold and hot temps, and borderline low thyroid. Later I developed insomnia.

Do you drink diet sodas or use aspartame at all? Do you eat any processed foods, including "healthy" processed foods and especially low fat processed foods? I found out that I am sensitive to Aspartame and have cut it out of my diet completely. I am trying to cut back on monosodium glutamate, aspartic acid, high fructose corn syrup, and soy of any kind. I am taking vitamin D 5000 IU, magnesium citrate 500 mg, vitamin B12 5 mg sublingual methylcobalamine, vitamin C 500 mg x 2 and a multivitamin. i also take DHEA because I am 48 and this hormone peaks at age 30 for a woman. Vitamins B12 and C will block the activity of MSG. Eliminating chemical additives from my diet by eating as much whole food as possible has helped tremendously with my fatigue and insomnia.

Armour thyroid helped me a little for a couple weeks but then stopped working. I gave it about 7 months before i went off it. Many of the chemical food additives these days are endocrine disruptors that will lower thyroid function but will not necessarily put you out of range on throid tests. Soy has phytoestrogens that can cause estrogen dominance in a woman.

Last edited by Administrator; 03-25-2013 at 08:53 AM.

Old 03-27-2013, 12:25 PM   #3
Join Date: Mar 2013
Location: Washington
Posts: 7
Smallfaces HB User
Re: Please help - pcp says not CFS, endo looked up symptoms and says it is

CFS Usually goes in cycles . From Fair to Worse . In my case - tight chest , headache , sore throat then fatigue . But the symptoms change . If your head , eyes ,scalp etc... gets strange sensations . That's not a good sign . For you , it may not be Cfs . Go out on a social outing . See if you become weak. Make sure you get 8 hours sleep . Pills or not . Whatever it takes . It does not seem that you have classic symtoms.

Old 03-27-2013, 01:21 PM   #4
Join Date: Jun 2012
Location: Ca
Posts: 86
naenae80 HB User
Re: Please help - pcp says not CFS, endo looked up symptoms and says it is

what do you mean about the scalp thing? I GET THAT - LIKE MY HAIR HURTS - NOT THE HAIR BUT THE FOLLICLES - what do you think!?!?!?!?! lol

plus a lot of symptoms of CFS and Fibro - hoping to get referred to Rheumy

Old 03-27-2013, 01:23 PM   #5
Join Date: Jun 2012
Location: Ca
Posts: 86
naenae80 HB User
Re: Please help - pcp says not CFS, endo looked up symptoms and says it is

and my eyes - strange feelings - grrr...

Old 03-27-2013, 04:29 PM   #6
Join Date: Mar 2013
Location: Washington
Posts: 7
Smallfaces HB User
Re: Please help - pcp says not CFS, endo looked up symptoms and says it is

Yes - I had that itching thing on my head . And kind of a strange pressure . Pain on the temples . Had to stop wearing my contacts . I guess in your case , I would make sure on the glands . People get hit with different degrees of Cfs / Fibro . It sounds like if you have it , you may be a little better off . I do ok. John

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