I am lost and need help, please...

Good Afternoon Everyone ~

I am lost and am searching for some additional advice on my situation.  I am 30 years old and can't seem to figure out what is wrong with me.  I went to my regular doctor for a checkup regarding my hypoglycemia as I was having highs and lows.  On this visit I shared with her some of my puzzling symptoms in addition to my hypo highs and lows.  

Here are my symptoms:
1.  I reported that had just gotten married, and it took me a year to lose 10 pounds - I would lose it by the 1/10th of an ounce if any at all.  
2.  After my wedding I was gaining weight despite working out 6 days a week with cardio and weights, and following a diet given to me by a dietitian.  
3.  My hair was falling out more then usual
4.  I was tired all of the time and when I did get up for the day it was only at 5 pm and then I was tired by 9
5.  I had a very difficult time concentrating,
6.  I had longer and heavier periods then normal
7.  Very irritable - almost like I had my period for weeks at a time
8.  Chronic constipation that would last for sometimes 8 days - and nothing seemed to help
9.  Water retention
10.  Occasional headaches
11.  Dry Skin and Brittle Nails
12 . Decreased libido
12.  Emotional outbursts....

Upon hearing all of this she got very serious with me and said there is a problem.  I am going to do a few basic tests and then most likely refer you on to an endocrinologist.  The results of her tests were that my electrolytes, kidney function, blood sugar, insulin levels and liver function were within normal limits.  My TSH was 2.83.  She did make me an appointment to the endocrinologist and said I had to go.  So off I went again for another round of tests.  He said that my blood sugar was normal (an example the the am I was at 70, 2 hrs after lunch I was at 97, and an hour later I was down to 63 with the feeling of low blood sugar).  After all of my tests were done I received a letter in the mail saying the following:  my TSH was 1.7, free t4 of 1.2, antibody was normal.  My fasting blood cortisol level was 10.9, and he believed that I did my 24 hour urine cortisol wrong because the volume was low therefore my cortisol levels were "relatively low".  But these results suggest that I don't have too much cortisol that would result in the symptoms I was complaining of.  I was told to schedule an appointment for a needle biopsy with no further testing as to figure the true cause of me not feeling well.  Based on the letter he provided I decided to see a second opinion.  I don't have the test results back from this new set, but I was basically told if everything is within the normal limits I will have to deal with this poor quality of life.  Does anyone see something that I cannot or the doctor's don't.  I am just un-helpable or is there something missing?  Any thoughts would be greatly appreciated.

P.S. Additional medical history I have been in recovery for anorexia/bulimia for the past 14 years.  Based on that most doctors don't want to work with me at all because I am looked at as though I am searching for drugs to work my disease which is so not the case.  I take 300 mg of wellbutrin, 1000 mg of vitamin c, and a claritin.  I was taking a multivitamin, a fish oil supplement, and a calcium supplement but with this nodule anything other then what I absolutely need is about all I can swallow right now.  I do eat healthy lots of fruits, veggies, don't have excessive bread intake, lean meats and dairy, etc.

I also am going to post this message on the thyroid board as well.

[Leigh1234]

I'm obviously not a doctor, but your symptoms are very familiar to me and definitely sound like they could be thyroid-related. Sometimes numbers just simply take a long time to reflect the way we feel, unfortunately. Of course, it could be something completely unrelated to thyroid, but you know that already.

I'm sure you've read, and others in the Thyroid community will tell you, that TSH is finicky. Just as an example, mine was 1.5 one day, and 2 days later it was 6.0. Mine is consistently higher at night, as well. The new ranges, published by the AACE, are 0.3-3.0. Most labs are not up-to-date with this.

Please make sure your new endo keeps an eye on your cortisol. I was told by several of my doctors (before being diagnosed with hypothyroidism and adrenal insufficiency) that an a.m. cortisol of 10 or less warrants further testing.

The thyroid-adrenal connection is mysterious but very real. Your issues with blood glucose should be taken seriously because of this. Have you had a CBC? If so, did you have low WBCs or RBCs, or a high eosinophil count? Have your inflammatory markers been checked (ESR, CRP)? Do you have issues with drops in blood pressure, has your skin changed color, or do you crave salt? Do you have joint and muscle pains or weakness or have you lost weight? If any of these things are occurring, or if there's anything else going on (even things that seem insignificant) share them with your doctor.

I sincerely hope you find the answers you are looking for and that you receive adequate treatment and support. Hang in there.

[wintipooh]

Thank you so much.  Its nice to know that there is someone out there who knows what I am talking about with all of the symptoms. I honestly do not think I have ever been tested for CBC's etc.  Can you tell me what those tests would be looking for?  Also, how did you receive your diagnosis of adrenal insufficiency - and what did they do to treat you?

Oh and I forgot to mention - this new doctor is not an endo he is a dr of internal medicine.  The last endo I saw - and the only one within an hour-and-a-half of my home said all of my tests warranted no further investigation.  Quite interesting.  My new dr. came highly recommended for his ability to figure out complex problems.  I hope this isn't a mistake, but I have to keep searching until I have a definite answer of something - does that make sense?

[Leigh1234]

Of course it makes sense that you feel the way you do! It's "slim pickins" sometimes, but there are some good doctors out there. That said, you know your body best, and if you really feel like something is physically wrong, you have to continue to advocate for yourself.

A CBC is just a complete blood count that measures your red and white blood cells. With adrenal insufficiency, total white and red blood cells are frequently low, and eosinophils (a type of white blood cell) can be elevated. Some inflammatory markers can also be elevated, since cortisol is your body's natural anti-inflammatory.

There are two main types of adrenal insufficiency. With primary, some electrolytes are affected (sodium will be low, and potassium will be high), which affects water/salt balance and blood pressure. Calcium can be high too. Electrolytes and minerals can be included with a CBC.

My cortisol was low and I had all of these abnormalities (listed above) for a long time, but I learned everything in retrospect. I'm 29 now, and before all of this happened I'd been really healthy - marathon runner, teacher, free-lance musician, etc. I started to get really, really sick after exerting myself, and then things just went downhill in general. I lost a lot of weight, my skin changed color, and I felt like I had the flu 100% of the time.

No one knew what was wrong with me, and some of my doctors (who were not mental health professionals) suggested really bogus diagnoses, prescribed me anti-depressants which I never took, and basically told me to get over it. Ironically, it was a psychiatrist who saved my life. The hospital medicine team sent her in in for a "consult", she took one look at my labs, ran out of the room, called in an endocrinologist, and made things happen. I should have asked for copies of all of my labwork from the beginning. There's really something to be said for objective opinions.

I ended up being completely incapacitated prior to that hospital visit, and my family and I just started reading. I had several (what I know now to be) Addison's crises and was admitted to and discharged from a few very well-known hospitals with no diagnosis. This was even after they performed ACTH stimulation tests that should have been diagnostic, but interpreted them incorrectly. No one ever referred me to an endocrinologist.

Finally, we went to a smaller hospital where the doctors had time to listen, I typed up a chronological history of symptoms and took all of the labwork that I had, and requested to be worked-up for primary Addison's. My blood pressure and heartrate were doing such weird things when I got there, and my labs were so wacky, that fortunately it didn't take too much convincing. They repeated an ACTH stim test which was conclusive, and I began treatment. It's been up-and-down since then, and several other problems have popped up, but I feel better prepared now and am thankful to be alive.

So, a very long-winded way (sorry!) of saying the ACTH stimulation test is the diagnostic test of choice for adrenal insufficiency. It was unpleasant for me, sent me into a crisis, but apparently that's very atypical. My new endocrinologist chalked it up to my size (I'm really small) and that maybe a pediatric dose should have been used...

The treatment is steroid replacement. There are a few options, but Hydrocortisone and Florinef are the drugs of choice. From what I understand, people with secondary insufficiency typically don't need Florinef since their electrolytes aren't typically affected to the same degree. There are several different dosing options, and other replacement hormones to consider, but I won't get into that here...already writing too much, I'm sure.

Sometimes a good internal medicine doctor can handle these things. I lucked out and found one recently who probably could have managed my case from the beginning. I hope you have the same luck with your new doctor, and I really hope you are able to stay optimistic while you wait for results. It sounds like you're taking good care of yourself.

Hang in there!

[PlateletGal]

Consider seeing a physician who specializes in hormone disorders and who frequently prescribes bio-identical hormone replacement therapy (at least that is my preferred choice)

For more information:


http://www.medhelp.org/posts/Fibromyalgia---CFS/Hormone-Replacement-Therapy/show/931343

Symptoms of hormone deficiencies can include:

low libido
thinning skin
aches & pains (arthritic)
bone loss
memory lapses
fatigue ---- feeling burned out   (of course nothing like CFS patients go through)
decreased flexibility
depression
decreased mental ability
headaches
brain fog
vaginal dryness
heart palpitations
lack of drive and energy
irritability

[wintipooh]

I finally got my test results, and as I suspected they would be -  everything was within the normal range.  I don't have exact numbers right now as I have a follow-up visit this Friday to finish the determination if the 2.9cm nodule in my thyroid is cancerous or not - and I should get them then.

All my doctor could say is there is nothing to treat me right now.  He believes there is something wrong, but everything he can think to do has been done.  His best guess is that I feel this way because I am overweight.  So I shall push on and think of new things to take care of this issue.

[MJTHOMAS]

Remember the body is really a whole thing; despite of it being treated as if the parts function independently by doctors. You may lack progesterone. Its a hormone that you make when you ovulate and depending on how much you have the body has to decide how to "spend it". Does it make cortisol and survive --managing the distribution of the body's resources like sugar, protein and fat?... or does it make DHEA, which gives us a sense of well-being and goes on to make testosterone that gives us a libido, helps us build muscle, mental sharpness, make blood cells, etc. ?  We need progesterone to make  cortisol; so when progesterone is low cortisol can be too.  Progesterone is the hormone that when low relative to estrogen causes pms symptoms.  It helps us make GABA a calming neurotransmitter; without it, we are irritable, retain water, get more migraines, and its absence affects thyroid hormone adversely.  

You may be relatively insulin resistant after your bouts of anorexia/bulemia because the body responds the same way whether you are in a externally or self imposed famine.  It attempts to enhance survival by changing how you spend your resources. This would make it difficult to lose weight.  Any problem with fertility?  These events have taken place over time, not simultaneously. Hormones produce ripple-like waves of change throughout the body and some act synergistically while others behave in an opposite fashion. High estrosten relative to progesteone causes thyroid hormone to get bound up and less active (even when present), so the thyroid test are "normal" but the thyroid hormone is not being used by the body like it should producing relative thyroid deficiency symptoms.

One of cortisol's many jobs is to maintain blood sugar in between meals. The longest time is at night when we sleep. When it is not present at night many people get to sleep, but, awake in the night as blood sugars drop and adrenaline shows up to fix the problem.  The body perceives low blood sugar as an emergency so it calls the 911 stress hormone if the regular stress manager falls down on the job. Adrenaline is not compatible with sleep.  Cortisol is supposed to creep up thru the night peak in the am and drop after you break the fast!  If you don't it continues to rise, which is why people don't eat breakfast find themselves gaining weight over time.  When cortisol is too high too long it causes insulin resistance and causes weight gain (initially) and diabetes later.

[wintipooh]

That was a great note.  Really nice to connect all of those pieces.  To answer your question about fertility.  I opted to have a tubal ligation last year due to the difficulty I had in taking birth control pills.  We also have a history of mental illness (and tremendous amounts of health issues) in our family, and I really thought it best not to continue on those traits.  My husband didn't want children anyway so it was a very simple solution to the problem.  When the surgery was over they did tell my mother that I had very tiny ovaries and suggested that I was unable to have children anyways.

I am going to post my most recent test results - does anything stand out to you?

[wintipooh]

Well I came back from my most recent appointment.  Today I had another ultrasound and a RAI scan.  Turns out the RAI scan could have been avoided if the previous ultrasound would have stated 2.9CM cyst.  However, its too late now.  The results are as follows:  I have a 2.9cm fluid-filled cyst with a 1 cm hard nodule in the middle.  My doctor said there still remains a small percentage that it could be cancer the center.  So next month (I needed a break from all of the poking and prodding) I will go back for an aspiration of the cyst and biopsy if possible if the center nodule to definitely rule out any cancer.  Once it comes back as non-cancerous - I will be checked every 6mths to determine its size and if there are any changes.  

As it stands now my doctor as in his previous visits is unable to treat me, and has exhausted what tests he thinks to do.  I am financially at this point, where a hunt isn't an option.  Its either find something or wait.  He did give me a copy of my labs.  Now some of these were taken in the afternoon and some in the morning a week later.  I will try and breakdown each as the reports states.  I wasn't able to get a number for my antibodies, but he said again they were within the normal range.  Here is what the report states:

Afternoon Labs:

Glucose 95     (normal 70-100)
BUN (?) 17     (normal 7-18)
Creatinine .8   (normal .6-1.3)
GFR (?) 84     (normal >60)
Sodium 137    (normal 133-144)
Potassium 3.6 (normal 3.5-5)
Chloride 106    (normal 98-107)
Carbon Dioxide 24    (normal 20-30)

Thyroid TSH 4.11    (normal .1-6.9)
Free T4 1.04   (normal .71-1.85)

Cortisol Panel

Urine Cortisol   36.8  (normal <45)
Free Cortisol   17.9
Total Volume   2050
Urine Creat   72
24 hr urine creat  1480  (normal 700-1600)/day
ACTH  24   (normal 6-58)

FSH  4.5 (checking for premature menopause) normal 16.7-113.6
LH  2.9 (checking for premature menopause) normal 10.9-58.6
Prolactin  23.3 (checking for premature menopause) normal 3.3-26.7

Free T3  3.23 (normal 2.50-3.90)

Alright these numbers mean nothing to me - except the are all within the normal category in the report.  Any thoughts?

[Leigh1234]

Hi,

TSH ranges were updated by the AACE in 2003 to: 0.3-3.0. Most labs haven't updated their ranges to reflect this, for some reason. So your TSH is high. I've read that most people (women especially) feel best with a TSH around 1.0.

Here's a link to an explanation on the new ranges, and from the AACE website you can find lots more info on it.

http://www.aace.com/public/awareness/tam/2003/explanation.php

I can relate to many parts of your situation and understand how frustrated you must be. Hope you are able to find a doctor who will treat you appropriately, and that the biopsy comes back normal. Hang in there.

[ereid]

just a thought but alot of the test show high normals n depending on time of day n were u fasting.

[wintipooh]

Sorry it has taken me so long to report the results of my thyroid biopsy, but I do have them.  Overall the test went well, and they got a good sample of everything.  I made them show it to me before it got sent to the lab - after all it is technically mine and I didn't want to have the test done again.

The results are as follows:  it is proteinaceous debris, loose fragments of follicular epithelium with nothing to suggest a malignancy.  Nor was it suggestive of a neoplasm.

I have a follow-up in 6 mths to check the status of the nodule.  I can tell it is getting bigger, but nothing can be done at this time.  Once this 6 mths us up we will see what is going on.  If it continues to bother me then I am going to push for its removal.

After all of that I am back at square one.  Someday I hope to find some answers.

[peggy64]

win, you have gotten some excellant advise here.

I don't see any lab report for thyroid antibodies.  This would check to see if you have hashimoto disease.  And your TSH is most definately high. you might want to ask your dr to go ahead put you on the thyroid meds after checking your adrenals.

You can treat your adrenals with adaptagens and I would recommend you study up on those and find out for yourself. In other words, don't take my word for it.

[wintipooh]

I had an antibody test done at the endocrinologist's office before I got the big kiss off (Sorry I am really frustrated with my situation) about how I am normal and there is no medical explanation for how I feel.  I need to get those results from him to see which one he did.  

[LivingInHope]

On this thread, back in May you had this result:
GFR (?) 84     (normal >60)

GFR is glomerular filtration rate and has to do with how well your kidneys are working.  I looked at your profile and saw you were 31.  For ages 30-39 years, the average GFR should be 107 m/min/1.73 m^2.  GFR calculated based on MDRD abbreviated formula is what this is based on from a lab printout in the house here.   While they consider above 60 acceptable, that does not mean something is not going wrong with your kidney function.  84, your number is closer to in line with a 60-69 year old's average, which is 85.  
This is from labtests online- an org website:
"A blood sample can be analyzed for creatinine (and estimated glomerular filtration rate (EGFR)) and blood urea nitrogen (BUN). The level of these waste products in the blood increases as kidney filtration declines. Abnormal results are usually the first sign that kidney disease is present."

On the same May posting, you had another lab result:
BUN (?) 17     (normal 7-18)
That is at the high end of what you put as the reference range normals.

I would recommend you pursue with your doctor getting a 24 hour urine protein and creatinine test and an ultrasound of your kidneys to get checked out and getting your BUN repeated, if it hasn't been done already.

[LivingInHope]

Other of your May results:

Thyroid TSH 4.11    (normal .1-6.9)
They must be using some old reference range, because the new standard I believe is 3.5 at the top end.  So yours would be high.

FSH  4.5 (checking for premature menopause) normal 16.7-113.6
LH  2.9 (checking for premature menopause) normal 10.9-58.6
Are you taking birth control pills to prevent ovulation?  Because, I think that could affect your FSH, which is instrumental in ovulating.  Both FSH and LH are obviously low there.  Did you get your pituitary MRI scanned to check for an adenoma?

[wintipooh]

Thanks so much for the link to the labs online site.  Its nice to know what I am being checked for these days.

Right now I have not had any further testing then what has been done.  I cannot seem to find a doctor who will take my complaints seriously, doesn't believe there is anything wrong, or just won't give me the time of day.  There is also financial issues as a result of this.  

I am sort of lost right now, and searching out any answers I can find before I go back to the dr.  Where I live we don't have access to very good medical care so its a tricky situation - I am just a number without an easy answer as to what is wrong.

Also I should have clarified the FSH & LH #'s.  The reference ranges I posted were for post-menopausal women.  The lab report breaks the results into mid-follicular phase, mid-cycle phase, mid-luetal phase, and postmenopausal.  Its hard for me to determine what category I fell into at the time of the test since my cycles are less then regular these days.

Right now I am not on any birth control pills, but I am thinking of getting back on them.  I had a horrific time with the combination pills, but I need to explore that option more before I make an appointment.

Thanks for taking the time to review my situation, any insight at this point helps.

[Leigh1234]

I understand your situation completely. It can be so frustrating to not have answers, and the financial burden is a serious thing. Don't give up! You deserve to feel good!

That said, I really think you need an endocrinologist who will treat you for your thyroid. Your TSH is too high. If I were you, I would print out the pages from the AACE website and any other site you can find that lists the NEW (2003) ranges for TSH, which are 0.3-3.0. I would go to a new endocrinologist -or even a good internist- with those papers in hand and request to try thyroid replacement. But make sure you do not have an adrenal issue before starting thyroid therapy, ok?

I know this sounds extreme, and it's just an idea, but if you go to a doctor with that information and he refuses to treat you, ask him to sign something stating that your number was ______, the stated ranges are ______to______, your symptoms are _____________, and he is refusing to treat you. This was recommended to me by a friend once, I didn't do it, and I really wish I had. It's just not worth feeling bad for years.

By the way, if your BUN or BUN/creat ratio continue to rise, or if your Potassium goes up, you should really be rechecked for primary adrenal insufficiency (Addison's). Even if your Potassium is not technically high, if the ratio of Sodium:Potassium (Na:K) is less than or equal to 30:1, this indicates a problem and warrants further testing for adrenal insufficiency. You can find more information on this on the Merck Encyclopedia website.

If you go on birth control pills, the estrogen will affect your cortisol measurements (make them look higher than they actually are). Hypothyroidism itself also artificially raises cortisol values, because the body's metabolism slows down to the point that you do not metabolize your own cortisol. My cortisol looked "borderline" when I was on birth control pills and was hypothyroid, even though I have Addison's.

Try to stay positive, and keep pressing for answers if you believe you are sick. It's worth it to try and find a great doctor...hang in there.

[LivingInHope]

Looks like you might have been in the mid-luteal phase of your cycle, with ranges I looked at.  I hope I didn't make you think I was recommending birth control pills- I don't.  I just thought they might be affecting your FSH if you were taking them.  

It is hard when you don't have a lot of money.  You might just cut to the chase and try to get a kidney ultrasound then.  I know of someone in their thirties with a low GFR for their age.  There's a problem with one of their kidneys shown on ultrasound.  You will want to take measures to protect your kidney function as much as you can, when it's already too low for your age category.  How's your blood pressure?

I thought I remembered 3.5 from a thyroid library book, but looking on line, 3.0 is what I find for TSH upper limit.  (Please see PM for link about does your doctor know about new TSH standards) and what to do about it.)

[Primrose27]

I see the last entry was in 2009...any update on your condition and how things turned out..