Any Suggestions? Cause I Feel Like There Is No Hope

[shoegal]

after 2 years of endocrine testing I'm back with nothing, I have low ACTH/cortisol but they say it's fine.

If my severely low BP is linked to dsyautonmia only then why the low ACTH/cortisol?!? GI, Cardio, PCP want endocrine to treat me, they refuse, I'm back to square one.

My GI has been useless. Since Aug or so I've not had normal bowel movements. With no testing he says I have IBS, he knows nothing about autonomic issues. He hoped endocrine would help out, but um no. I have to use enemas/suppositories in order to go, that doesn't always work, have been to the ER too many times with a back up of stool.

I'm struggling as to what to do, low blood sugar, constant migraines, no energy. I'm not old enough for so many problems.

Any pearls of wisdom?

[McBlonde]

Do you have your ACTH and Cortisol lab results and the lab range? Also, have you had your thyroid checked....as in TSH, Free T4 and Free T3? Sorry you are feeling so bad!!

[shoegal]

Do you have your ACTH and Cortisol lab results and the lab range? Also, have you had your thyroid checked....as in TSH, Free T4 and Free T3? Sorry you are feeling so bad!!

my last AM labs where less than a month ago ACTH 8 (6-50) cortisol 10 (5-35) I have had low aldostrone in the past too.

last endo said it was my beta blocker causing the low BP but I halved the dose and even skipped and it makes no difference. 75/45 is too low but they say endocrine needs to fix it.

on thyroid pills and levels are Ok at the moment

[shoegal]

I also have a 7mm pit tumor, but many of my issues started before the endocrine stuff (symptoms from a child) but the BP and sugar issues both started together and after a med I think hurt my pituitary

[McBlonde]

Do you have your ACTH and Cortisol lab results and the lab range? Also, have you had your thyroid checked....as in TSH, Free T4 and Free T3? Sorry you are feeling so bad!!

my last AM labs where less than a month ago ACTH 8 (6-50) cortisol 10 (5-35) I have had low aldostrone in the past too.

last endo said it was my beta blocker causing the low BP but I halved the dose and even skipped and it makes no difference. 75/45 is too low but they say endocrine needs to fix it.

on thyroid pills and levels are Ok at the moment

Ok, so those are still within normal limits. so that's good. I wasn't able to take the beta blocker. I started out on the lowest dose and halved it and then cut it in 4ths.... still BP was too low. Are you drinking plenty of Gatorade, water and salt?

[McBlonde]

I also have a 7mm pit tumor, but many of my issues started before the endocrine stuff (symptoms from a child) but the BP and sugar issues both started together and after a med I think hurt my pituitary

You didn't happen to take Dostinex did you?

[Maiysa]

Hi Shoegal,

I don't know what a lot of your symptoms are, but I was told for years I had IBS, which ended up being gastro paresis. I think they found it on a small bowel follow through. Also, I went to a neurologist who I explained my symptoms to, and I had been to so many doctors since I was in my 20's and was 46 at the time, and most doctors just stared at me as if I was a freak, and she knew what it was right away. She said you have dysautonomia, possibly autonomic neuropathy and then we spent months trying to find a doctor who could deal with dysautonomia since she was so honest and said, I don't know much about it. I appreciated that. She was very helpful. I went to Mayo and they had a QSart machine and that's what really helped them to find out what was partially wrong with me. I saw that you did the endocrine testing, I was sent in for that a few times and although all of my levels were not normal nothing added up.

I hope you have the options of going to other doctors. I at the time had been on HMO insurance and it was impossible to get doctors to get me referrals. I really had to fight for any doctor I got to see and then the doctors they were sending me to were clueless, which my doctor at mayo said that is normal since dysautonomia is really sort of rare and most doctors will not be aware of it.

Have you tried a neurologist? Okay, good luck to you!! Hang in there.

[CharmedLinz]

Oh yes all too familiar with Endocrine Docs, wonderful aren't they. I gave up after 6, now my Internist deals the best he can.

It took my Cortisol dropping to 1 after surgery for an official diagnosis of adrenal insufficiency.

Your labs are within range was do some searching, neither number is a "good" number.

My morning Cortisol levels have been anywhere from 4 to 12, my lab range starts at 2. Most addison's patients don't test that low.

My morning ACTH has been from 7 to 17, lab range starts at 0, well if someone had 0 ACTH you'd be dead, so don't know where they get these ranges.

As for hope I'm fresh out, until someone can see how all this stuff really does fit together not sure what else I can do, or any of us can do. One day at a time and when that doesn't work, I try to remind myself that once upon a time they didn't know what Lupus was, or HIV, or Lymes, so maybe someday this will be figured out too.

Are you on any meds? Have you tried anything OTC for the bowels, like teas and such?

[McBlonde]

How about your aldosterone? That's the one that will usually causes low blood pressure.

Here is a link to hormones and the symptoms of having too much or too little

http://www.goodhormonehealth.com/symptoms/gland_hormone_symptom_table.html

Endos are really the worst. I have spent years and thousands finding out just how clueless most are on anything but diabetes and thyroid. If something is wrong with your pituitary, you really have to find someone that specializes in pituitary diseases and the good ones are few and far between. It sounds like you might be having/ adrenal insufficiency secondary to pituitary disease. Are any of your other pituitary hormones messed up?

My last ACTH/cortisol AM test was ACTH 104 and cortisol 5. So, the harder it is for my adrenal gland to make cortisol, the more ACTH is pumped out.

Our message systems are just all messed up! I am so sorry you are going through this, too!!

[Dizzysillyak]

Have you seen an integrative or functional doctor yet ? These are mds who decided to try to heal their patients

instead of drugging them ... Their tools are tests to look for causes, diet and supplements. Drugs

are used sometimes but as a last resort .. Tc .. D

[issie]

Have you tried magnesium and aloe and probiotics for the bowel problems? Works really well.

I too have low cortisol issues. Have to use cortisol with every surgery I've had or else I really crash. I've been on extended use of it a couple times in my life. So, I know there is adrenal fatigue issues involved in this.

Issie

[lillybits]

myralax is my best friend. no one knows whats going on with my gi tract either..ibs dx at 15 and now gerd...but nothing on the fact i cant go to the bathroom without consuming over half of the laxitive section at the drug store....

[shoegal]

my aldostrone was low, that is OK I was told. my thyroid is low, my IGF-1 is 175 which is in the range but the range is wrong, 50 for an IGF-1 at 33 is wrong and the starts the range! I read online it should be 200-300 ideally.

I did see a pituitary doc but from his comments I am scratching my head as it doesn't even make sense if you read their own guidelines!

I've been to neuro, one said 100% autonomic and thought 2nd to mito wanted biopsy, sent me to another neuo who said well right now your BP is 90/50 which is fine and you can squat 10 times (I struggled) so he declared me healthy just nuts

[jangle]

There is always hope. We're going to figure this thing out!

[FarmerAmy]

My first suggestion is to dump your GI. There is no point in wasting your time and money on a doctor who makes you crazy.

Have you tried colon hydrotherapy? I have never tried it, but my father in-law has a condition similar to MS and he does colon hydrotherapy when he hasn't had a bowel movement in a while. It is much better than a trip to the ER!

[rubytuesday]

Shoegal, I had pituitary adenoma (surgically removed) but I had low thyroid function and my female hormones were so low, I should not have been having meses. My symptoms were very bad headaches every day and at the time I was hemmorhaging (menses) and needing injections of DDAVP to stop the bleeding but then after about 10 days or so, bleeding would recur. When I had headache at several of gyn visits, he'd mentioned going to neuro but I never fathomed a tumor. He also suggested placing me on hormones to help control cycles/bleeding. (I have a bleeding disorder and am a bleeder). Before I took that road, I went to endocrinologist to see if he could find why I was having this bleeding. Even he was scratching his head--like I went to the wrong kind of doctor for that, but did do CT scan and found the tumor. As best I recall my ACTH was ok. I periodically (and when I started with the neurocardiogenic syncope being sent back to endo) get the endocrine labs tested. Serum cortisol (if memory serves) is at its lowest between 6-8 in the morning (give or take an hour). It is at its highest around 4 pm--so the level fluctuates. It may have been low but typically they ask you to be at the lab no later than a certain time in the morning (and the lab documents the time of the blood draw). That being said, mine still will run lower than low normal in the morning, but have to follow-through with 24 hour urine cortisol (they usually do my serum and urine creatinine at same time) collection. That gives overall measure of how things are working (and mine is always fine). I did have to take synthroid (very low dose) for a while but didn't feel any difference 'energy-wise' after my surgery and it was stopped (told endo I'd rather not take it in case in my elder years I needed it--didn't want it to become ineffective for me). My blood sugar was always alright. I've always run a low/low normal blood pressure (so did my dad--he was big guy and I was short/petitie).

I still get terrible migraines (thankfully not as often as prior to menopause and when working)--lot of things trigger them for me--not enough sleep, (I have hypersonmia/mild narcolepsy on 2 sleep studies, excessive daytime sleepiness), not drinking enough non-caffinated beverages, weather and barometric changes, cold, heat, certain smells, certain foods, stress from work (ie overstimulation--including bright lights in workplace and noises of my sensoriums) and I'm sure that homone shifts did as well. I cannot take aspirin, ibuprofen or NSAIDs, and they wouldn't put me on beta blockers or calcuim channel blockers to prevent my migraines because I ran low blood pressure (that was before my syncope/POTS). That meant the only thing left short of my imitrex (and I'd tried all the anti-migraine agents), was tylenol. My neuro told me that taking more than 2 days (consecutively) could give me a rebound headache that mimics a migraine. Medications and herbs can cause headaches by releasing or inhibiting chemicals in the brain.

I have the IBS too. I know how bad it can be. I suscpect gastoparesis--go to my GI (update him about dysautonomia) but he only orders the 90 minute gastric emptying study then tells me to 'call him' in a day or two after my test (he called me back when I was at church--left message that he'd call back and he never did). Now I was given 1 bite of radioactive egg. The x-ray tech told me once the egg passed my stomach, she would stop the test, so it may not drag out the whole 90 minutes. I wasn't wearing watch but it felt like very long time to me. She sat at computer watching screen all the while I was laying there. She turned lights on and said we were done. I asked her how long it took. She told me the full 90 minutes--but the radiologist report said it passed in 45 minutes!! I don't know why he doesn't do a small bowel follow through in the first place but I think its to generate revenue for struggling hospital. I never called him back (I know I should to have things pursued further). I still will have GERD with supper that I'd eaten at 5 in evening at 10 at night. I was tender in the epigastric and know I still have the gastritis (despite being on omeperazole and ranitidine). I have one extreme to the other with my IBD. My pancreas is 'fat' and liver has fatty cysts and I struggle to maintain my weight. My immunologist suspects malabsorption and I take isosource as a supplement (liquid form being easier to digest at least some vitamins and nutrients I need). Using laxatives routinely can cause the bowel to become laxative/enema dependent. A surgeon (when my constipation got so bad I had thrombosed hemorrhoids and rectoanal fistula) had me take mineral oil, colace and mylanta twice/day. It only worked mildly and seemed to stop working so well. My PCP told me to try Miralax in morning and use it at night if I need to. It has helped me a lot (although I still have the extremes at least it is not constipated stool--but there is nothing I can do to fix the 'bathroom days'. If any of your meds contain iron (even calcium) or in me, dairy can cause constipation. My immunologist also told me to find nickel free multiple vitamin (since I cannot wear costume jewelry without reaction) as she says ingesting the nickel will do the same thing to my gastrointestinal track. I've had colon polyps removed (kind that can turn cancerous) but no crohnes or ulcerative colitis. I've had pill cam, serum allergy test for wheat and serum celiac all negative for allegy or celiac disease (altho small bowel bx is more reliable test).

I wish I could give you more answers/some help. Sending virtual (((HUG)))

[shoegal]

after being ketotic and dehydrated, i'm now severely constipated, vitals are crashing and all my new docs are running for the hills, i so wish life would be easier

[Maiysa]

Shoegal, sorry to hear. Everyone once in a while I use the smooth move tea. But start out with a few tablespoons to see what you can handle. It really helps when I have gastroparesis and I also blend papaya seeds and some greens and that helps to get things moving. Feel better soon. Hang in there!

[Maiysa]

Wow, Ruby Tuesday, that's a lot. But it sounds familiar to me. I'm going PM you to ask a few questions if you don't mind. Thanks for sharing your story.

[McBlonde]

my aldostrone was low, that is OK I was told. my thyroid is low, my IGF-1 is 175 which is in the range but the range is wrong, 50 for an IGF-1 at 33 is wrong and the starts the range! I read online it should be 200-300 ideally.

I did see a pituitary doc but from his comments I am scratching my head as it doesn't even make sense if you read their own guidelines!

I've been to neuro, one said 100% autonomic and thought 2nd to mito wanted biopsy, sent me to another neuo who said well right now your BP is 90/50 which is fine and you can squat 10 times (I struggled) so he declared me healthy just nuts

Oh gosh. I am so sorry! When your pituitary fails, it nearly always goes in a certain order....first you loose your growth hormone, next LH & FSH, then TSH (thyroid) and usually the last one lost is ACTH, which of course controls adrenal function..

A non-functioning pituitary tumor can cause hypopituitarism.. A whiplash ..... A concussion ... OR as it appears in my case, the messages from the hypothalamus to the pituitary go haywire for some unknown reason.

I know most of the good pituitary doctors across the country if you want to PM me. They are few and far between. I spent a few years a 10s of thousands of dollars before I figured out saying you were a pituitary endo and actually being one were 2 different things. The good news is that if this is part of your problem.... you can get on the correct replacement hormones and will feel a lot better regarding your endocrine issues. Let me know if I can help!