info on Growth Hormone Replacement

[faith63]

I have a damaged pituitary and Hashi's.  My Growth Hormone blood test is 0.03 [0.01-8.00]  I'm a 49yr old female, abnormal on all sex hormones.  What is the normal for someone my age?  I asked the doc if I need replacement GH and he says he doesn't know.  When I called the ins. company about coverage, they asked for a diagnosis and treatment code, and I don't know these.  Are there tests that you have to take in order to prove that your pituitary can't be stimulated to make this?  How do I proceed, as the doc isn't pursuing this?

Any info would be appreciated!

[debgal1954]

Sorry, I made an error on my text regarding the Insulin Tolerance Test, also known as GH Stimulation test.   I was given an injection of insulin (not glucagon) prior to the blood draws.  Sorry about that...... I get tired easily and just wrote down the wrong thing - but wanted to make sure I clarified that for you.  

[debgal1954]

For your age of 49, the "mean" range for IGF1 would be 205, so you are a bit low.   The range (per LabCorp) is 118 to 298 for age group of 41 to 50 years.  However, you must first be tested to determine if you are actually GH deficient by lack of production by the pituitary gland before your physician can order your meds and your insurance company will pay for it.  It is VERY expensive.  A one month supply is $775 on my healthcare plan.  The type of medication you will take is determined by what is covered by your insurance company.  There are many different brands of GH replacement therapy.  I take Genotropin, made by Pfizer.  They have a program also that pays for my co-pay up to $125 per month.   Your physician makes all the initial arrangements with your insurance company and the vendor who will provide you with the medication, if you are tested and deficient.  A nurse will come to your home to teach you how to inject yourself.  It is easy with very little pain.  The injection is sub-cu, which means just under the skin.  The needle is very short, not going into your muscle.  You give yourself an injection every night before you go to bed.  This time period is used because this is when the pituitary gland would naturally make growth hormone - during sleeping hours.  Depending on your dosage, you may use what they call "Mini-Quick" injections which are syringes that are pre-mixed for you and do not require refrigeration.   Or, like me, you may have to use a dose that requires you mix yourself and must be kept refrigerated at all times.  Don't worry.... I have traveled to Europe and back with my kit and kept it refrigerated while on the planes and at hotels.  It can be done!  :)

[debgal1954]

I am AGHD (adult growth hormone deficient); diagnosed January 2010 by Insulin Tolerance Test done in my physician's office.  This test (or others approved by your physician AND insurance company) may be performed to determine if you are deficient.   IGF1 is NOT used to determine deficiency.  IGF1 is performed periodically after you begin taking GH replacement to determine if your dosage is correct or needs to be adjusted.  Below are IGF1 reference ranges from LabCorp.  The goal is to fall in the MEAN range for optimum therapy - where you will feel best.  I take Genotropin by Pfizer.  

IGF1 - Reference Range from LabCorp
AGE         RANGE   MEAN
19-20y 217-475 323
21-30y   87-368 237
31-40y 106-368 225
41-50y 118-298 205
51-60y   53-287 172
61-70y   75-263 180
71-80y   54-205 156

If you think you are GH deficient, you must first find the BEST doc in the US that will become your physician.  I have a background in healthcare and did a lot of research before I found that person.  He is Dr. Theodore Friedman in Los Angeles, CA.  His website is www.goodhormonehealth.com.   You must make ONE visit in person to LA to become Dr. Friedman's patient.  Afterwards, if you live out of state as I do, you will follow up with Dr. F by phone or email visits.  He will send you lab requisitions via email and you will have your blood work, urine samples, etc done at a LabCorp location local to you.  

During the first visit, you will meet with Dr. F and his team and many tests will be performed.  You will be asked to stay in the LA area for up to 4 days, depending on what tests are required.  There is a hotel across the street from his office.

The insulin tolerance test was performed by first giving me an injection of glucagon (insulin) and then inserting a cannula in my arm so the physician could draw a blood sample every 15 minutes for approximately three hours.  During this time, you may become hypoglycemic and the physician is with you during the entire test to monitor you and assist if needed.  I did not have any problems during the test, but I could tell I was becoming hypoglycemic towards the end of the test and was ravenous with hunger afterwards.  I brought snacks with me that I could eat as soon as the test was completed and then went back to my hotel for a HUGE lunch with my husband :)   It took about four weeks to receive the results of my test and I was found to be severely GH deficient.  My deficiency is due to trauma of my pituitary gland when I fell on some ice in 1990 - hitting the back of my head on concrete in a parking lot.  It took me 20 years, plus locating an expert in rare endocrine conditions - i.e., Dr. Friedman, to get a diagnosis and begin treatment.  20 years of my life was wasted being ill, seeing endless useless physicians, being treated for symptoms only, with no one interested in determining to root cause of my condition before I found Dr. F.  

I initially saw him to rule out Cushing's disease as well.  You may also be required to have some MRI's performed at Cedar Sinai Hospital.  If you are required to have MRI's at Cedars, I can tell you that you will save yourself a lot of money if you pay their "CASH" price for those exams and file for re-imbursement afterwards with your insurance company.  The two I had would have been $900 in cash.  Instead, I allowed them to file with my insurance company and ended up having to pay $2000! (this is why healthcare costs are out of control - it is the over-inflated rate charged by the provider vs the amount actually paid by your insurance company - and whatever the insurance deems is not their responsibility to pay falls on to you!)  

I cannot emphasize how important it is to find a physician of Dr. Friedman's expertise in RARE conditions - there a very few in the US.  Google his name and will find numerous publications, as he is a research physician first who also treats patients.  His credentials are listed below:

Theodore C. Friedman, M.D., Ph.D.
Chief, Division of Endocrinology, Metabolism and Molecular Medicine
Professor of Medicine-The Charles Drew University of Medicine & Sciences
1731 E. 120th St.
Los Angeles, CA 90059
Professor of Medicine-UCLA  
www.goodhormonehealth.com

Check out his website and I'll be glad to answer any other questions you have.    

[faith63]

I'm trying to find a steroid that I can tolerate and HC causes me to swell, weight gain, high BP at anything over 7.5.  The Medrol doesn't cause these symptoms..but I'm unable to sleep and have a racing hrt and high temps and BP at even 2 mgs.  Don't sleep either.  Maybe I woulds need to lower thyroid meds?  Do you use long acting?  If so, how are you able to sleep?  Any ideas here?

Thank you so much!  

[rumpled]

Glad you spelled it and not me LOL... I guess my cats are inbred too - I have a female that I call a chipmunk as if she hears a noise she sits up on her haunches and peers around.

I think the extra toes look cool. My male likes to sleep in sinks - my females likes to attack the tub. She is not too bright - but she is a goat. She eats rubber bands like spaghetti, chews on all our wooden chairs (ack!), eats paper etc. I had a previous cat that loved the shower too.

Lots of guys and girls make chain maille. There are tons of sites devoted to it and once you master a few basic weaves then you can go on to the more complex ones. Just start with some base metal to play with so it is not so expensive to play and move up from there. Good pliers though are a must.

[kevieb]

six-toed cats are called polydactyl cats---I didn't want to type that word because I was afraid I would mis-spell it---which I probably did----but I didn't know the trait was connected to any particular breed---however, my cats really DID get inbred----we didn't take some of the kittens out to a farm soon enough---and they mated. the original 6 toed cat is long gone, but we have kept "crab kitty"---I personally think she looks more like a kangaroo when she eats---she sits up on her hind legs.

She has had several batches of kittens---and we got normal ones and various foot and leg deformities in some---mostly just extra toes----one cat had 7 toes on one paw.

My son has a beautiful all black male (fixed) that is crab kitty's son.  He is perfect.  He was a house cat when my son had his own place.  When he moved back in with us we kept him inside and he used to sit on my lap when i got up early---i really like him--but he had to be moved out--too many family members alergic to cats.     this cat also used to sleep in my bathroom sink---and he likes to take showers---weird cat.

My son would think it was so cool that you make chain maille!!!   i think he has tried to make some himself.  He used to be really in to old weapons and armor.

[rumpled]

There is actually a breed of cat that has 6 toes - and it is a genetic not um inbred thing, but an actual trait. I know my one cousin only wants 6 toed cats and only gets them! They are manx (so have no tail as well) and so somewhere in your cat's catting around, she hooked up with a manx...

I don't know how to crochet. I do some chain maille - so I knit metal.

My cats just lay around where I don't want them (they have somehow thought the dining room table makes the best bed and I put the cloth there just for them to play, sleep and chew on - rat b@$tard$. But they are cute and keep be company.

[kevieb]

the report said my hiatal hernia was small, too---but it gives me horrible problems.   i can't even lean over to make my bed, sometimes, without whatever is in my stomach coming up.   Spicy foods don't bother my hernia at all, but i don't eat very many spicy foods, either. The worst part for me is when my food gets stuck.

I don't feel like I do much either--I just kind of sit in my rocking chair and feel guilty that I'm not doing something----I feel better about sitting if I have a crochet project to work on......I water my flower pots--but I do my best to ignore the cats.  We just got rid of all but 2 of our cats----and the momma got fixed.  She has deformed front legs and kept having mutant kittens----somewhere back in the years, when we lived out of town, we had a 6-toed cat, among our numerous cats---and I think they got a little too inbred-----the six-toed thing took on a life of it's own........  

I

[rumpled]

I had those tests and the radioactive egg sandwich too... I have a bit of a slow empty. The food was gross. In the end, all my tests were borderline. It was awful. I have a small hiatal hernia it only bothers me if I eat really spicy food and I don't do that often at all. Or stress.

I don't feel like I do much at all - I water my plants, weed - harass my cats...my tomatoes are dying and my cukes are starting to die too - I tried to pickle for the first time!

[kevieb]

I have a hiatal hernia.  I carried a set of twins when i was 28 and that is when I started having the pain from it.  My hcest would hurt really bad, all the way through to my back, up to my neck, and it would even make my teeth hurt sometimes.  I did not know what was causing it at first, but one of my docs finally figured out I had reflux.      

Before the reflux, I used to get a stabbing pain in my gut, my doc said it was either gastritis or that I was getting an ulcer.  I was treated with a PPI for it and it went away.  The reflux problems came some time after that,  

I had suspected for years that I probably had a hiatal hernia, but had never been told that I did----i finalla got a copy of all my records from the surgeon a couple of years ago---and read in the report that he said I had a small hiatal hernia.  i sure the pressure pussing up on my diaphragm when I carrried my twins caused it.

The surgeon tried to tell me 15 years ago that i needed surgery, but I didn't want to do it, so he gave me the medication.  He told me that as young as I was and as bad as my symptoms were, it was just a matter of time before I would have to have the surgery.  I remember him telling me that esophageal cancer is a bad way to go.

I have had two shotzsky's rings that had to be broken during two different esophgeal dilation procedures.  the last time i had a dlilation, i just had really bad esophageal reflux---but I also had a lot of eosinophils in my esophagus.

I do get some stomach pain sometimes, but it seems to be getting better.  Usually, it is firts thing in the morning.  I take that first deep cleasning breath---and it feels like a knife stab in my gut, but seems to go away fairly quick.  I know low cortisol can cause stomach pain, Hydrocortisone can also be hard on your stomach.  i'm not sure which one of the two has caused my pain.  Since it is getting better, I'm leaning toward thinking it was the low cortisol causing it---I'm not taking a PPI right now.  My cortisol has been raised to 30 mgs a day---and I usually try to take food with it---or eat something shortly after I take it.

Gastroparesis is actually what it sounds like, paresis, which is paralysis of the stomach muscles.  You sound more like you have delayed gastric emtying.  Erythromycin is also given to help with delayed gastric emtying.  It does not have the orential side effects that reglan does.

If it were me, I would go ahead and have the delayed gastric emtying tests done.  I would want to know if it was really my stomach that was causing the slow digestion---or if it is something further down the line causing things to back up---which can cause or worsen reflux.  Ex-lax won't do anything to help the stomach digest---it is just an intestinal stimulant to make the muscles in the intestines contract to move food waste out---however, the effects should not last for 3 days---sounds like something else happened after you took it.

My daughter once wrote a story about her "radioactive egg sandwich".  She was nauseated all the time, had really bad reflux and diarhhea.  They gave her an egg sandwhich with whatever the contrast material was, cooked into it.  She ate it, then they took an x-ray every so often to see if her stomach was emtying at a proper rate----it was no big deal.

My daughter actually had celiac disease, as does her identical twin sister and my next daughter down.

I have two suggestions you might think about with your stomach and reflux problems.   You could try taking digestive enzymes if you feel your digestion is slow.  i don't take them---but I have heard that alot of people feel like they help.  You could also try taking pro-biotics to make sure you have the proper bacteria in your gut and intestines.

The other suggestion is that  you get tested for celiac disease.  It is actually much more common than they used to think.   But, you need to make sure you have the right tests done.  You need to have a total IgA serum test and a Ttg IgA test.  Ttg stands for tissue transglutaminate.  If a person has celiac disease, their Ttg levels will rise according to the amount of intestinal damage they have.  It would be HIGHLY unlikely to have Ttg antibodies in your system unless you have celiac disease.  The other things that can cause them are pretty rare------like having had an organ transplant, for one.

You might also have a scope done with biopsies to see how bad your reflux esophagitis is, whether or not you have eosinophils and whether or not you might have esophageal thrush.  They could also biopsy your stomach for gastritis and eosinophils and your small intestine for inflammation, eosinophils, and celiac----although celiac damage can be patchy and not always show up with a biopsy.

I'm not sure what to think about having all hormones replaced at once---sometimes correcting one problem will take care of another problem and less medication is needed.  i know my doctor has said that I have to be patient.  He said it can take up to two years to balance the endocrine system.  Once it is balanced, quite often the amounts of supplements and hormones can be lowered and he likes to keep prescription medication to a minimum.

Also, There are alot of other things that need to be tested besides hormones that can affect how well your endocrine system is balanced.   I have had tests run on me that I have never heard of.  Some of the tests are done on a cellular level.  One example---instead of just testing my magnesium, he tested my magnesium RBC---red blood cell.  It tells him what is actually going on, magnesium-wise, in the blood cell itself, not just in the whole blood serum.

Also, some of the vitamins and nutrients we take either work synergistically and need to be taken together, or they compete for absorption, and need to be taken at different times.

gotta run and get ready for church!!

[faith63]

I'm so sorry for all your pain!  Like Kevieb, you are a very strong person to be able to do all that you do.  I'm pretty much, non functional and barely leave home, can't even push a sweeper and my motivation is not there any longer.  Very little sleep and food, the pain have done me in.  I believe if I could get the digestion and sleep in order, I'd be a new person.  I will have not given up in getting the right treatment, though.  Just don't do much else.

Keep hanging on!

[faith63]

Wanted to let you know that I am reading how perimenopause, other hormonal imbalances can be the cause of the digestive upset.  So, hopefully once the hormones are balanced, it will stop.  I'm going to go to another source, away from the Endo, to get help with my hormones.  I can't tolerate waiting years, one hormone at a time, do be find relief.  This place does saliva testing to treat with bioidentical hormones, all them replaced at once, and go by symptoms to adjust them.  They do cortisol and thyroid too.  I will be working with one of their doc's.

I'm so sorry that you feel so crappy.  You are very strong to be able to manage your big family and all that goes long with it.  The lack of sleep alone could knock someone off their feet.  Your esophagus issues sound just awful!  I hope you get the help you need.  If you aren't keep looking elsewhere.

[faith63]

You mentioned your stomach, esophagus and reflux, I believe.  I'm having a terrible bout with my stomach now.  Do you have any of this?  Sometimes my food is very slow to digest, like my stomach doesn't move it through.  I have severe reflux, and the acid burns my esophagus, especially when lying down.  This causes pain in my back and headaches.  My throat is sensitive to ketchup, anything with a tiny bit of acid and it looks sore. The palpitations and racing heart are worse when my stomach flares up.  For the past week, I am only eating soft food or liquid.  But, even that doesn't help.  I made the mistake of taking ex lax, when this not digesting, flared up and it has made me sick for 3 days, with diarrhea and cramps.  It's become totally debilitating.  I have read this  is Gastroparesis, slow digestion, which causes food to ferment and this causes the over acid.  That low thyroid causes low acid, which is, in part the reason for the Gastroparesis.  A GI doc, told me it was all because of low thyroid, but put me on Nexium, which reduces acid.  The endo said my problem was my stomach, not related to thyroid, but I don't agree.  Also, my stomach and just under the Navel, is sore to press on.  This started in 2010. I, like you, pray that once my thyroid dose is right, it will stop.  The GI, doc wanted to run tests to see if my digestion was slow, but it's a waste of time and money, since I already know it is slow!  He said they treat it with Reglan, which I would never take anyway, due to it causing a permanent movement disorder and all the lawsuits.  What does your GI think?  Any info here?  Very concerned about this, as they say 70% of your immune system is in the gut.  Concerned with esophageal cancer etc...

Thank you!

[kevieb]

i really am not worried about the meds.  i take clonazepam for anxiety, not depression---although I am aware that a number of the medications i take can POSSIBLY cause depression.   i sometimes think that in the morning i could be in a state of tolerance withdrawal when i wake up and I'm really hurting---but i also have times when i can take less medication and can go longer between meds------so that kind of throws part of the tolerance theory out the window---at least in my case.

Early on, when I needed less medication, I would actually get a little hyped for the first little while that the meds were kicking in.

I hurt alot when i don't have enough pain medication, and i get really sensitive to noise, and light and touch----and life---but if I get too much medication, i feel really crappy---it is kind of a balancing act for me.

Alot of the stuff they say about medication on the side effects lists has to be put on there even if it only happenend to ONE person.  If you read the side effects of hydrocortisone you'd run as fast and as far away from it as you could and never even consider taking it---but they have to list all the possibilities of all the doses-----but, when you are on a physiological dose it is perfectly safe and only replacing what your body needs.

PPIs are a goood example--they are only meant to be used for a short period of time---but I have a hiatal hernia and I get severe reflux and dysphagia and I've had to have my esophagus dilated 3 times.  

Last night we sat down to eat and my husband warns everyone that "Mom's going to be gagging and hanging over the sink."   A couple of days ago I had two different episodes of food getting stuck.  It is really painful and i can't swallow and i can't throw up.   Obviously, i need to be on PPIs all of the time--but I won't take them.  I'd rather have surgery, fix the problem, and not take any more meds.

I really do appreciate your concern---but I had no problem getting off benzos in the past, and i don't think i've reached too high of a tolerance level since i am able to vary the amount and length of times between my meds.  My hope, is that when I get my thyroid medication high enough i won't need many meds!!!  Plus, I have a long way to go to improve my diet---and i need to get some regular exercise.

rumpled, i remember when they first started talking about rebound pain---my doctor wanted to immediately contribute my headaches to it ---it was the newest theory----but it didn't fit my symptoms.   Headaches are what I starteed with----now i go through periods of headaches, and periods where I don't have that many---and some times i don't any.

The remote was available for the beds--but, I'll bet it is like you said--they probably get alot of hard use and don't get cared for.  One room we stayed in had one bed that was alot nicer than the other one.  

I went in and layed on a bed yesterday that was nreally soft on top, with good support underneath--the old faashioned inner-spring have-to-turn-them every couple of months kind.  The guy said they have discovered those kinds are lasting longer than the newer mattresses that people don't turn anymore.  they have a comnpany that makes this particular model just for our local store because they requested it.

It wasn't horrible in price, and I'm going to hurt no matter what I sleep on--but I do need something to cushion the bumps at least a little!!!  I think this one would work for both my hubby and I.

What do you mean when you say that cortisol hurts coming and going---i think that's how you put it.

[rumpled]

I get my T3 checked - I am in the upper part of the range. I take cytomel. I have many reasons for pain.

[faith63]

Why so much pain?  Would this indicate that your dose of thyroid needs to be increased, possibly.  My migraines stopped with an increase in thyroid meds.  The pain is better addressed by taking natural dessicated thyroid such as Armour or NP.  Most doc's don't check a FT3 level, which if low, could be a reason for pain.

[rumpled]

Another thing is rebound pain - so once you take too much, the meds actually start to contribute, so it pays to vary amounts. I did that with advil once.

I have an upper level one I think at least mid-level. Did you adjust the bed? Was the remote available? Plus I call from time to time to get renewed padding (it is under warranty) and it helps the feel of the bed. I would imagine those beds get hard use and are not cared for like a bed at home. When we move and I did not connect one of the beds properly, it can lose air. Whatever you do - you have to experiment at the store.

We got rain today - so another pressure change. Have to do father in law duty today... ah... hot apartment.

[faith63]

I'm sorry that you are going through all of this.  Hoping that you will research side effects of you medications, benzodiazepine withdrawal symptoms, in particular.  They could be the cause of malfunctioning Pituitary and or Adrenal glands, they cause body pain and insomnia, headaches etc..as well.  They are a depressant, so they cause depression and shouldn't be used for depression.  I know, I was told my my endocrinologist that all my symptoms, migraines, everything is because of these drugs.  They are only to be used for a maximum of 2 to 4 weeks. I became ill while on them , apparently I was in a chronic state of tolerance withdrawal.  Of course, my doctor didn't tell me this.  I'm just very concerned, when reading your information.  

[kevieb]

I slept decent last night!!!! Don't know how.  i did wake up about 5:30 and took my pain killers---then doses off and on until i crawled out of bed about 7:45.  I felt relatively decent, too, while I was still in bed--usually i am miserable once i wake up.   i even made muffins for my kids--and sylvia got her hot cereal tht she loves---can you believe an 8 year old LOVES hot cereal?!

The last two nights before last night, i did not sleep well.  I tried three different beds in the house.  I woke up around 5am in the worst pain I have been in in a long time.  I had a headache--that's common--but my lower back hurt really bad--mild low back pain i get if I roll over on my stomach--but this was horrible!!  My son and I had been planning to do some exercises that are supposed to help you move your body more and help eliminate pain---he did them by himself.

I hate the never-knowing-what-the-day will bring business.   We had school registration, the computers at the high school were down--not what an easy-stress and easily in pain mother needed!!  Of course, signing in by computer was our only option.  the junior high and the grade school used people--both went flawlessly.   At lest we payed the fees at the high school---$250 for the two kids that go there---$50 at the jr high----$15 at the grade school----so much for free education!!!

We had a little bit of a rain drizzle while we were out----and a thunder storm was predicted for last night--I'll bet that's why I woke up hurting so bad---we didn't get the thunder storm, just the overcast clouds--another thunder storm is predicted for tomorrow.  I hate the pressure changes!!!

How well do you like your sleep number bed?   When my daughter had to spend 2 1/2 months in Seattle children's Hospital, we stayed at the ronald McDonald house when we were there.  They had sleep number beds---and they were the most MISERABLE beds we had slep on in ages.  But, I also think they were probably low-end models.  There was almost no padding on the top of them, so nothing to feel comfortable against-----either you sgged or the bed was hard.  One of the beds seemed to lose air in one of the rooms we stayed in.

Eo you have a higher grade model?  I have sometimes wondered if a better sleep number bed would be alot more comfortable.

[rumpled]

Yeah the ocular migraines are wild - I get both - the pain and the eye ones. I remember a meeting with a boss of mine who was very difficult woman - and I could hardly function in the meeting and could not even see her for the sparkly thing in front of my eye...

Sleeping is a huge issue. We have the sleep number bed and that helps a lot since we can both adjust and I can make the bed softer to help not have numb areas - but I still cannot sleep on my back.  It kills my knees. I am always hot too.   Only a sheet - blankets too heavy.  I always need a fan on me - in bed and when I sit.

just spent a couple of hours in the yard (ack!) and I will rest, do the shopping, rest, cook, rest - do you get the schtick?

[kevieb]

I have taken my pain pills with pepsi or mountain dew before----sometimes i think the carbonation might actually help to get the meds into your blood stream faster---but the pop irritates my bladder so muchh that I end up having to pee all the time.   i can't win for losing!!

I know what you mean about people being horrified by the pain pills you take---they don't seem to know the difference between addiction and tolerance---i think some doctors don'tknow the differenc, either.

When I get sick, I sometimes will use all of the pain killers i am allowed in a day, by early afternoon---and then I end up having to go into the doc and get a shot of tordol (SP?) because I will get a headache that is unbearable---far worse than I normally get---but I've never had a migraine---only occular migraines with no pain.  I get a little scared when that happens, because i am afraid that the pain is getting worse permanently and then I don't know what I will do---but It usually goes back to it's previous level once i get over whatever illness it is i have.

One of the office gals is really good about taking me into a private room when she can see that I am breaking down---and she just talks to me and lets me cry.   The last time wa when my twins were getting married and everything was so hectic and I was stressed beyond the breaking point.  They just told me that we just needed to get me through what was going on right now----everything seemed to settle down after the double reception---actually, I was taking some supplements that month and was felt better for most of the month and took less pain medication.

I never know what makes that happen.  It is nice when I can get througha day with only 4 norco instead of 5--heck, I'm happy if I have 1/2 left at the end of the day---it means I've done a little better.

I was really surprised at how much better I felt when I was back east in Conn.  i really think it had something to do with the altitude and the difference in air pressure at a lower altitude.   i get more pain when we get an air pressure change here.  

The first month that I started my 1 grain of NP thyroid, I didn't feel the air pressure changes here before 2 different rains storms we got.  Usually I will really ache before a storm---sometimes up to thre days before it hits.

I'm feeling kind of discouraged right now because I have such a lack of energy.  I'm not sleeping well.  I try to lie on my back--and then the fingers on my left hand go numb--if I lie on my left side--my whole arm will goe numb---if I lie on my right side--my upper back will start to ache.  i can't let the blankets rest against my toes because that hurts, too.  My heels can't rest against the mattress, either--because that usually hurts too much too.

Sometimes i try to sleep with a heating pad under my neck, sometimes it helps.  i really need to break down and go to the chiroprator--but that seems like too much effort.  I end up sleeping in the recliner partially on my left side---and then I wake up with my right hip hurting---explain that one??!!

Basically, I am not getting a good nights rest with a condition that already zaps my energy.  I want to have the desire to do things again, but it just isn't there.

Any tricks to help build up a little energy and a little desire to do things.  my kids start school in 3 weeks and I hate it when I am home alone all day.  Kevin seems to be going through some sort of dep[ression, too, plus, he works hard physically all day--so he just wants to shower, eat dinner in bed, and stay there until it is time to turn off the light and go to sleep.  At least he is turning off the TV about 11 pm now.  i have discovered I can fall asleep sometimes, even when I don't think I am very tired, if the lights are off and the TV is off----but some nights I lay there for 45 min to an hour without falling asleep---by then my fingers usually are numb---so I have to change positions--or get up.

There's got to be a better answer to getting some descent sleep.  our bed is not soft enough for me--so I really get pressure points.  we had a memory foam bed once----but it is in the basement.  It wasn't very soft, even though it did eventually form to your body when it warmed up--but then we would wake up drenched with sweat.  It made kevin's back hurt, too.    

I have heard that the new gel memory foam is supposed to react faster to changes in position and not be so hot.  I've got to do something---i know our bopdies require a good nights sleep to heal from the days physical and mental stresses.

[rumpled]

Pain is a bear. I went to pain management and all they do is toss pills at you and then everyone else is horrified. I just went off and continue my acupunture and use the pills when I need instead of long term - but pain is such an issue I cannot sleep and thus hubster cannot either (I toss and toss and toss and TOSS).

Weird about having shingles so young - that is awful. I got mine a couple of times already in my 30's - they are a nightmare. I hope never to get them again but I know I will.

I used to take my pills with coffee!

[kevieb]

I did have an MRI with contrasts done and it showed no pituitary disease.  The endo told me that sometimes some of the cells just stop working.

I have taken benzos off and on for about 23 years.  When they tried to give me xanax alone, i needed more and it helped less.  When they finally found an antidepressant I could tolerate, I no longer had to take as much xanax.  I was able to wean off of it when I no longer needed it, without too much trouble.

I was given klonazepam 17 years ago, but quit taking it because i didn't feel like I needed it.  I have always kept benzos in my cabinet for the last 23 years---but I didn't always need to take them.

I know about medication tolerance because I also take norco and soma--both of which you can also become tolerant to---it's just the nature of the beast.  However, I have had times when i am able to take less of my medications for some reason or another--I'm just always glad when I have some leftover at the end of the month.

I was switched from sanax to clonazepam quite a few years ago because it lasts longer than xanax.  I have not raised my dose of clonazepam in a number of years.

I also take vyvanse, and it can raise cortisol levels---so I have to be off of it for at least 24 hours before I have my cortisol levels checked.  I want to wean off of it because I no longer feel like it is helping me like it used to---and I think it is what is causing me to have the shakes.  I have to wean off of it slowly, because the days I have had to skip it, I cannot stay awake for most of the morning--and stay sleepy for most of the afternoon.

I'm pretty sure I have central nervous system damage--but I think I got it years ago when i got the shingles at 4 years old.  i had them bilaterally, which is reallly rare.  I have a scar on my lower back that is numb--so i know I have some kind of nerve damage.   i never got the pain that people usually get with shingles----sometimes, with shingles, instead of getting pain along the lesions, the pain will back up the nerves and go into the spinal column.  i mentioned this to the psychiatrist, expecting to have him laugh it off---but he didn't even hesitate, and told me that it would not only affect my spinal column, but that it would also affect my brain.

I know I have built up a tolerance for the meds I take, but I don't have to have them raised often.  i know I could not drop them without having withdrawals---but i also know that I am able to go for longer times without taking them, for some reason.

I once had a neurologist tell me I was addicted to medication---so I went home and refused to take it---I was so miserable by 11pm.  My husband told me I should take my meds.  The pain had gotten so far out of control that taking my medication did not help me.  I had to take more than normal and it took hours before I was able to get it under control enough to go to sleep---about 3:30am.  With the pain I have, the idea is to keep it under control and not let it get too bad--or you will need more.  My doc told me a really good way to get someone addicted to [ain meds is to UNDER treat their pain.

I cannot tolerate antidepressants---so clonazepam is the only thing I can do for it right now---but I don't take the same amount every day.

I do appreciate your info and will look into it.

The pharmacist told me that they know who has the drug problems, and that I am not one of them.

[faith63]

I commented on your post and it didn't show up for some reason.  Have you had an MRI?  How long have you used the Clonazapam?  That is a Benzodiazepine and the cause HPA Axis disregulation, lack of communiction and off and on communications between the Hypothalmus, Pit. and Adrenals.  They mess with your central nervous system and cause withdrawal symptoms between doses and if they aren't raised often.  Called tolerence withdrawals.  They slow down every function of the body, including thyroid, pituitary, everything.  They are what caused me to become permanently ill.  Benzo.org. UK is good for info and ************.  There are millions out there damaged.  They are only to be used for 2-3wks.  Sorry, but had to say something.  They lower cortisol, too.  No doc who prescribes them will tell you this, neither will pharmacies..they work for the drug companies.  It's a horrible cover-up.  I'm in the the beginning stages of legal action against several doc's and hospitals, right now.