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974371 tn?1424653129

Extreme dry mouth and throat

Not sure where to post this. Did a search and came up with nothing.
I suffer from this and it is getting worse.  Horrible 24/7.
Been tested for Sjorgens with two biopsies, lip and parotid, negative.
I use every Biotene product there is with little relief.
This has been going on fir about 5 years but getting worse.  
Add to that, GI issues and lots of tests.  I "may" have IBS or a motility disorder. Daily nausea and bloating is returning.
I get night sweats.
Numerous tests and numerous doctors and no answers.
Anyone?
12 Responses
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1530171 tn?1448129593
Hey Margot, try to do as much as you can from the "free" list.
As you are working on this, here's my thought:
Perhaps your acupuncturist can recommend a Naturopathic or Holistic Doctor to order the adrenal stress profile and a PEG test (for leaky gut syndrome) to get the process going.
Before the PEG test you may want to look into the "Saliva Test for Candida"on YouTube, which you can do easily on your own, as a screening test.
If you need any info about a  Professional Adrenal stress Profile, let me know. My opinion is that you may want to seriously consider doing it , as there are so many health implications, which prevent you from moving forward with your health.

Your Endo and your Gastro are confined to their established and approved procedures and protocols which unfortunately and obviously are not serving you well.
I can't tell you what to do, but if I were in your shoes, I would run!
I think you understand what is implied.

There are many things that may help you get better, but I feel that you must assume most of the control of your health matters first, as you need to make some key decisions, without relying much on the (less than effective-to put it mildly) conventional medical system.
This is my opinion only and my previous reference pertains  to mostly complex chronic and serious conditions and not in acute cases, trauma, injuries and some surgical interventions where the conventional medical system has a much better record.

Message me anytime you need to.
I know how hard it is for you because I have been there (a long time ago!) and I had to learn the hard way, for which I'm actually very grateful, since it has shaped me to become who I am today.
Niko




Helpful - 0
974371 tn?1424653129
And, I am back to being nauseated and bloated all day again today.
Can't believe I am starting this again
Helpful - 0
974371 tn?1424653129
I got very likely.  Slim to no chance I can get my Endo doc to do the testing
Helpful - 0
1530171 tn?1448129593
Hi Margot.

Here's the adrenal fatigue questionnaire as I mentioned in my post:

Adrenal Questionnaire  

Read each question carefully, and record the number next to a question if it applies to you. When you finish, add up the numbers you have recorded.


Do you experience fatigue? 3


Do you have allergies? 3


Do you have asthma? 3


Do you have recurrent infections? 3


Are you under severe emotional stress? 3


Do you suffer from chronic pain or physical stress? 3


Do you have low blood pressure? 2


Do you have a low pulse rate (<70/min with no exercise)? 2


Do you feel faint when you rise quickly? 2


Do you experience depressed moods? 2


Do you experience joint pain? 2


Do you have muscle pain? 2


Do you have low libido? 2


Do you have hair loss? 2


Do you have anxiety attacks? 2


TOTAL SCORE _______  


Less than 7 adrenal fatigue unlikely
7-12  adrenal fatigue possible
12+ adrenal fatigue very likely

Please send me the result in a private message if you want my feedback.

Also, I will take a closer look at your test results and at first glance your
free T4 seems to be OK at about midrange, however, free T3 and reverse
T3 are also needed in order to assess your cellular thyroid function.

In regards to the FODMAP diet in your case, it must introduced very slowly and to increase very gradually over a long time to my opinion.

One very important point: EVERYTHING, every body organ, every body system  is interconnected & interdependant!
An Endocrinologist focuses on adrenals, hormones, glands etc
A Gastroenterologist focuses on digestion, intestines, colon etc
Yet these systems are closely interelated and affect each other greatly when there are serious imbalances in either system.
It is not only biased for a specialist to ignore this golden rule, but it is also potentialy dangerous for the patient. Despite this it seems to be the established practice of conventional medicine and in the process, it leaves
so many suffering patients undiagnosed, misdiagnosed or in total limbo!

Take care.
Niko

Helpful - 0
974371 tn?1424653129
I am trying to look up some test results so will just put them as I see them.

T4 Free 0.59-1.61 ng/dL 1.15
General Information
Collected:
11/07/2012 11:37 AM

Component Standard Range Your Value Flag
PTH, Intact 14-72 pg/mL 68
General Information


Collected:
07/16/2013 10:19 AM

Component Standard Range Your Value Flag
T4 Free 0.59-1.61 ng/dL 1.05
General Information
Collected:
07/16/2013 10:19 AM

omponent Results
Component Standard Range Your Value Flag
TSH 0.34-4.82 uIU/mL 0.91
General Information
Collected:
07/16/2013 10:19 AM

Found the Standord report.
She gave me Lactulose 10 grams daily as a prebiotic, add probiotics daily (Activia)  Now, I can't remember what happened but it did not agree with me and I stopped it.  

She wanted me to start Neurontin 100 mg each night to increase the dose 100 mg  every 3-4 days up to 100 mg 3 times pr day, depending on response and tolerance.  I did not take this. It is a seizure medication.  My acupuncture doctor, (who is also an MD) didn't like this idea either.

She did order that 24-hr esophagal impedance-pj study for reflux.
We did discuss a FODMAP diet, which I have sort of tried in the past with no difference.
My husband is NOT going to take me back to Stanford again and this particular test they only do there.  

My Endo doc has run numerous tests, says it is not thyroid or adrenal issues and just refers me back to the GI doctor.  

This is a damn nightmare that has gone on way too long.  And, they tell me to stay off the Internet.  :-(

Yes, can you send me that info, please?  
Helpful - 0
974371 tn?1424653129
Sorry, hit the wrong key

But that is getting costly.
I mentioned adrenal gland issues to 2 different doctors but Endo doc says there is no indication of that on tests or scans done.  She says my GI issues are not related.
My GI doc finally said he could repeat the breath test fir SIBO, but I am holding off on that.
They just don't get it and it has been suggested I go for counseling, if course. :-(
Of course, right before the Holidays and half the docs are gone a lot.  You have to wait fir weeks to get an appt at Stanford anyway.
Thanks again.  Know a doctor that will work with me fir longer than a 10 min appt??
Helpful - 0
974371 tn?1424653129
Thank you so much for the detailed response. I will check into these when I have time.
Wasn't too bad the past two days. Last night again woke up 3 times clammy from my stomach up soon followed by nausea.  Since I have little medical support here, followed my routine of getting up and taking Omeprazole, followed later by 1/2, .05 mg Alprazolam, drank some ginger and honey followed by another 1/2 Alprazolam, followed by 1/2 dose Pepto Bismol. I am still bloated but not as nauseated.  Of course, the dry mouth and throat are constant.
Husband does not want to go back to Stanford. That doc wanted to do a 24 hr bike test (with tube from nostril to stomach) they only do there.  It would be difficult to travel two days or stay over for personal reasons.  My only other option today is possibly seeing if I can get in for acupuncture
Helpful - 0
1530171 tn?1448129593
OK Margot, here's my small piece of medical wisdom.

You MUST rule out thyroid resistance! Yes your Endo says it is all fine,but standard tests do not account for thyroid resistance.
Please re-read my post, and consider doing the temperature test and go from there in light of all of your symptoms and your possible predisposition b.c of your mother's thyroid issues.

Underlying the  suspected thyroid resistance, there also may be an adrenal
imbalance.
I have an adrenal fatigue questionnaire I can send you, which can be used as a screening tool. Let me know.

You also must know if you have low or high gastric acid levels.
Low levels are more common than high levels and GERD symptoms
are the same with low or high gastric acid levels.
Your reaction to these meds are a sign of contra-indicated treatment!
If you have low gastric acid production, acid lowering drugs are the exact opposite of what you need!
On your  own you can do the Betaine HCL challenge and/or the baking soda"burp' test for gastric acid levels (indicative, not diagnostic).
Just look these up online.

The next thing you may want to try is an elimination diet, starting with
grains and anything with gluten (familiarize yourself with all the aliases of
ingredients containing gluten, read all the labels, choose one food ingredients and cook from scratch) for a few weeks, before you continue
with the elimination of all dairy.
These 2 groups are the most reactive, but it is important to continue with all other foods.
There's the option of Dr. Coca's Pulse test (free download) to indicate allergies/intolerance/sensitivity to anything ingested that the body considers as offensive, within a week.

You may try EFT (tapping)- free  basic manual download, similar to acupuncture in a way- which I have used countless times on myself and
others (I'm also an advanced EFT practitioner) quite successfully.

Have you ever had a liver cleanse done?

The course you are on will give you enough material to write your book,
but it seems it will not give you much in terms of health improvement.

Every suggestion I offered you, will not cost you anything other than your time, a glass thermometer and some Betaine HLC from the drug store or health food store.

Need more details or have any questions? Post again or message me
anytime.

Wishing you well.
Niko
Helpful - 0
974371 tn?1424653129
Thank you for the response. I can only answer some of this now as I would have to look up some of the info.
Thyroid problems run in my mother's side of the family.  I have been going to an Endo Doc fir a while.  She tests me and my tests are within normal limits.  I also have 4-5 nodules and a small cyst on my thyroid. She has ordered biopsies 4 times now, benign. Even the doctor that does the biopsies said I only need that done every year, not 6 mos.  she insists this is not my thyroid and she is supposed to be very good.
A few years ago, I had a 24 hr PH test done, showed mild acid reflux. Was put on Nexium.  I developed bad muscle pain in hips and top of thighs and had a rib fracture, if unknown cause.  Dic said it was not Nexium.  I stopped it myself and in 4-5 days, the pain was gone and has not recurred. Due to the throat issues (insist it is GERD) both GI and ENT docs suggested Omeprazole. I cut down on that now and take it now and then, never noticed it made a difference.
The GI doctor is young and, to his credit, did several tests and biopsies on me.  He eventually referred me to a motility specialist over 2 hrs away.  This really too long to explain.  They said I had some motility problems and put me on Prozac and wanted me on BP meds. My Internist here said no as my BP is low. It ended up that my GI doc here was not working with the specialist regarding meds, they kept referring me back to the other. I cannot be traveling to the specialist for consults and med advice.  Now, my GI doctor here love to tell you he did some training at the Mayo clinic and also under this motility doctor.
I referred myself to Stanford and, as fate would have it, she also trained under this specialist and also was there when my doctor was. Don't have the record handy but she did not fully agree with the motility study recommendations. She actually prescribed a liquid (to be increased) a seizure medication (I was afraid to use), Activia yogurt, acupuncture and ginger and honey for my constant nausea.oh, prior to this, I was diagnosed with SIBO by breath test and went thru 2 rounds of Xifaxin, which I barely tolerated.  I have to admit the meds my GI doctor all caused me problems, making the dryness worse, ended up at the ER because the Levsin, we feel, gave me an irregular heartbeat.
I have been a bit better with the acupuncture, ginger, etc.  past couple of weeks, feeling bad again and finally sent an e-mail to my GI doc asking if maybe the SIBO was back. He sent me a message saying I have had problems with all meds, he doesn't know much about motility issues (guess he didn't learn much) and to contact Stanford!!  My husband is not taking me there again! I am trying to manage this at home.  Cannot afford $75 a week for acupuncture.
My Alk Phos has been elevated for a long time.  Last two tests were 169 then 144. Had blood drawn today but no results yet. GI doc said some months ago I have a marker for autoimmune hepatitis, whatever the heck that is, and mentioned a possible liver biopsy.
It has been a nightmare of doctors, tests and biopsies and no diagnosis.  A few months ago, I started spitting up some clear mucus and am constantly clearing my throat.
I could write a book!!  
Helpful - 0
1530171 tn?1448129593
Hi margot49.

Look into unresolved low thyroid.
Endocrinology uses only "established"  serum testing for thyroid like T3, T4
and TSH.  This does not indicate cellular thyroid function!!!
Free T3, Free T4 and Reverse T3 are the levels you need to have checked.
Lump in the throat feeling, dry throat, dry mouth, G/I issues and Sjögren's
like symptoms that you're experiencing may all be caused by low thyroid.
Conventional medicine, most likely will keep you in limbo.
Do a search for "Dr. Barnes Basal Temperature Test".
You will need to follow the simple instructions to the "T" and a glass thermometer (not digital). This test will indicate fairly accurately low thyroid function.

I don't see why any doctor would take a shot in the dark and prescribe
omeprazole -a proton pump inhibitor for excessive gastric acid levels-
in light of ongoing unresolved G/I issues. I would have guessed the opposite
-low gastric acid levels, same symptoms for GERD as with high gastric acid levels!-
If you have had specific tests to verify high gastric acid levels, please disregard my previous statement.

Alprazolam intake, may also  contribute to dry mouth as it is one of the possible side effects.

A gastroenterologist who does not know what a prebiotic is? Really?

What did the Stanford doctor prescribe? Do you remember?
Prebiotic causing you sickness, hmm.
Prebiotics are FODMAPs, ( Fermentable Oligo-saccharides, Disaccharides, Mono-saccharides and Polyols), which may cause problems for those with digestive & G/I problems.
You should have started with a very small amount and increase gradually!

Please post again or message me if you need details.

Note: This is not intended as substitute for medical advice.

Best wishes.
Niko




Helpful - 0
974371 tn?1424653129
Thanks, actually a doctor at Stanford had prescribed something to use as a prebiotic. Took it and made me sick. I'm not even sure what a prebiotic is and my GI doctor here says there is no such thing as a prebiotic. :-(
I have been taking the Omeprazole the last couple of days, which has never helped.  I am not a tea drinker at all but can check into that.  Been drinking the crystalized ginger and honey to help with the nausea, again suggested by the Stanford doctor.  I use the Prevent (?) toothpaste prescribed by my dentist for dry mouth.
Just seems to be getting worse, feel like there is a lump in my throat and keep hacking up some mucus.  
This causes me to be anxious to take 1/2 .05 mg Alprazolam when I need to but have been on that for over 5 years.
Just feel like I am going to choke.  
thanks
Helpful - 0
1340994 tn?1374193977
I would try a prebiotic about 30 minutes before meals and reduce sugar intake.  Try taking Metamucil capsules after dinner to hold down acid.  Stop coffee as a trial.  Switch to green tea with mint.  Change toothpastes to one like Jason's.  Try all these for 3-4 weeks and see if you are improving.  
Helpful - 0
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