HIP's Chronic Fatigue Syndrome Testing and Treatment Roadmap

Resource HIP's Chronic Fatigue Syndrome Testing and Treatment Roadmap

Hezza

Active Member
Maybe @Cort will add a resource for what to ask for when seeing certain specialists. Even a list of what kind of Drs diagnosed which branches of your illness & what tests they used to do so. Maybe there is that already but I've had a hard time finding it. If you guys know point me to it!
 

Hezza

Active Member
@Issie @Remy @Who Me? @Lissa
Appointment went so smoothly! I was shocked. It's the first specialist I've ever seen in my home town that listened, was not dismissive, knew what POTS was & was actually kind not condescending! (My experience w the neurologist was a disaster)

They did an EKG in the office, normal. He ordered a tilt table & echocardiogram, which is in a few days bc I have to be off florinef & atenolol for 3 days prior. Sorry to have hijacked this thread but I'm not savvy enough to successfully start one & you guys were great, thanks again!

Will update with the results....
 
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Who Me?

Well-Known Member
Congrats. @Hezza to start a thread (for future) go to the home page. Look for the forum where you want to put it. In the forum on the right there should be Start a new thread button. Click it and off you go!
 

San Diego

Well-Known Member
@Issie @Remy @Who Me? @Lissa
Appointment went so smoothly! I was shocked. It's the first specialist I've ever seen in my home town that listened, was not dismissive, knew what POTS was & was actually kind not condescending! (My experience w the neurologist was a disaster)

They did an EKG in the office, normal. He ordered a tilt table & echocardiogram, which is in a few days bc I have to be off florinef & atenolol for 3 days prior. Sorry to have hijacked this thread but I'm not savvy enough to successfully start one & you guys were great, thanks again!

Will update with the results....
Off meds for 3 days is smart. My cardio told me 24 hours which wan’t nearly enough, so my latest TTT was labeled OI (such a lazy diagnosis, as there are 5 subtypes of OI), whereas every other test has very clearly shown POTS, narrowing of pulse pressure, ortho systolic hypotension, and ortho diastolic hypertension. Lesson learned.

5 Types of Orthostatic Intolerance

Basically, you want to be at your worst for the TTT. So don’t drink a lot, don’t take a bunch of electrolytes, don’t take meds, etc. If your problems are worse the day after any activity, try to get in some activity the day before the test. (unless doing so risks relapse!) I’m in the habit of resting for several days prior to any doc visit to prevent relapse, but wonder if it might have been better in this case to get some small activity in.

They really need to see what you are like with zero treatments in order to properly diagnose you. It can be vital to “legitimize” your situation in the eyes of physicians, disability panels, family, etc.
 

Who Me?

Well-Known Member
@San Diego I'm completely ignorant about cardiac stuff as you may remember. I want to get to a cardio but like @Hezza worry I'll get some idiot. Since I know so little and don't really have a dx to start with, just a bunch of symptoms which look like some dysautonomia, gulp Where to start? that was rhetorical.
 

Hezza

Active Member
Off meds for 3 days is smart. My cardio told me 24 hours which wan’t nearly enough, so my latest TTT was labeled OI (such a lazy diagnosis, as there are 5 subtypes of OI), whereas every other test has very clearly shown POTS, narrowing of pulse pressure, ortho systolic hypotension, and ortho diastolic hypertension. Lesson learned.

5 Types of Orthostatic Intolerance

Basically, you want to be at your worst for the TTT. So don’t drink a lot, don’t take a bunch of electrolytes, don’t take meds, etc. If your problems are worse the day after any activity, try to get in some activity the day before the test. (unless doing so risks relapse!) I’m in the habit of resting for several days prior to any doc visit to prevent relapse, but wonder if it might have been better in this case to get some small activity in.

They really need to see what you are like with zero treatments in order to properly diagnose you. It can be vital to “legitimize” your situation in the eyes of physicians, disability panels, family, etc.

Thank you so much, will do! My poor mans TTT showed all of what yours did except the ortho diastolic hypertension. That was when I still had all my girl parts & was losing blood at the time as well. I have had so much improvement since hysterectomy, IV infusions, atenolol, florinef & LDN. Not looking forward to that horrid feeling again but you're right that it needs to be documented if possible... Here's hoping for horrid for once, lol.
 

Hezza

Active Member
Off meds for 3 days is smart. My cardio told me 24 hours which wan’t nearly enough, so my latest TTT was labeled OI (such a lazy diagnosis, as there are 5 subtypes of OI), whereas every other test has very clearly shown POTS, narrowing of pulse pressure, ortho systolic hypotension, and ortho diastolic hypertension. Lesson learned.

5 Types of Orthostatic Intolerance

Basically, you want to be at your worst for the TTT. So don’t drink a lot, don’t take a bunch of electrolytes, don’t take meds, etc. If your problems are worse the day after any activity, try to get in some activity the day before the test. (unless doing so risks relapse!) I’m in the habit of resting for several days prior to any doc visit to prevent relapse, but wonder if it might have been better in this case to get some small activity in.

They really need to see what you are like with zero treatments in order to properly diagnose you. It can be vital to “legitimize” your situation in the eyes of physicians, disability panels, family, etc.
Should I lay off LDN as well?
 

San Diego

Well-Known Member
@San Diego I'm completely ignorant about cardiac stuff as you may remember. I want to get to a cardio but like @Hezza worry I'll get some idiot. Since I know so little and don't really have a dx to start with, just a bunch of symptoms which look like some dysautonomia, gulp Where to start? that was rhetorical.
Researching and self-diagnosing so we can hand these uninformed doctors the answers gets really old. Reminds me of the kid who was too lazy to study peeking over the shoulder of the smart classmate during tests.
 

Hezza

Active Member
I’m not sure about that one. Since it takes a few months to work, I wonder if it also takes a few months to wear off??? Good question!

Do you notice a difference if you miss a dose?
Have not missed since I started. I attribute my great pain relief to that but it seems like I was reading just recently about its connection w tamping down inflammation & the good affects of that on the sympathetic nervous system. But bet you're right about the timing factor...
 

Hezza

Active Member
Off meds for 3 days is smart. My cardio told me 24 hours which wan’t nearly enough, so my latest TTT was labeled OI (such a lazy diagnosis, as there are 5 subtypes of OI), whereas every other test has very clearly shown POTS, narrowing of pulse pressure, ortho systolic hypotension, and ortho diastolic hypertension. Lesson learned.

5 Types of Orthostatic Intolerance

Basically, you want to be at your worst for the TTT. So don’t drink a lot, don’t take a bunch of electrolytes, don’t take meds, etc. If your problems are worse the day after any activity, try to get in some activity the day before the test. (unless doing so risks relapse!) I’m in the habit of resting for several days prior to any doc visit to prevent relapse, but wonder if it might have been better in this case to get some small activity in.

They really need to see what you are like with zero treatments in order to properly diagnose you. It can be vital to “legitimize” your situation in the eyes of physicians, disability panels, family, etc.
@San Diego i had seen that resource before (5 types of OI) is that the standard reference that every cardiologist or anyone administering TTT would go by?
Just wondering how informed these folks doing mine on Monday will be. Sad that we must always be braced for ignorance even from well meaning health care workers. Wish he had sent me home with a holter monitor over the weekend. It would have documented quite a lot. But then they could always just throw out the peaks & call it normal... My Fitbit thinks I'm in some kind of triathlon, lol.
 

Hezza

Active Member
@San Diego i had seen that resource before (5 types of OI) is that the standard reference that every cardiologist or anyone administering TTT would go by?
Just wondering how informed these folks doing mine on Monday will be. Sad that we must always be braced for ignorance even from well meaning health care workers. Wish he had sent me home with a holter monitor over the weekend. It would have documented quite a lot. But then they could always just throw out the peaks & call it normal... My Fitbit thinks I'm in some kind of triathlon, lol.
@San Diego And is it standard to administer nitroglycerin if you haven't passed out after 20 mins? That's what the girl said they would do for my test. Right after the TTT I'm scheduled for an electrocardiograph. Wouldn't the nitro affect the results of the echo?
 

snowfoot

Member
Thyroid testing: most MDs will only order the TSH . It can be showing normal, but if your T4 or your T3 is abnormal, you may have a problem. That's what happened to me and I was severely hypothyroid. T3 is the active form and mine was rock bottom and my body temperature was too low. My naturopath treated me with T3 and I recovered a lot of energy and my temperature returned to normal. Check out Wilson's Syndrome (not Wilson's disease)
I am new to this forum but old at trying to get my thyroid hormones working right, recently found out i have hashimoto's. My best resource so far is stopthethyroidmadness.com but i had a really hard time getting my doctor to let me test for free T3 and rT3 (reverse T3) so i could do that ratio to see if T3 was actually getting into my cells where it is needed.

Years ago the most important test was rT3 to an endocrinologist but that was before our medical profession got dumbed down. So i found out i have too much rT3 which blocks up the receptors and the endo i went to wanted to only prescribe a new type of T4 and not the natural desiccated thyroid nor the T3 only that i requested so i am on my own, experimenting for this past month with NP thyroid and T3 and LDN (low dose Naltrexone) and having a hard time of it.

I also have Wilson's syndrome (my low body temperature 96.8 - 97.2) Also i just found out my body is attacking not only my thyroid but practically all the food i eat. Not fun.

I have been getting some insight on facebook, particularly "got endorphins" about using LDN and will be looking into candita, etc & sharpen my teeth for a mostly meat diet. I would never have imagined that getting out of bed could be so challenging (got to the point I was in bed 24/7!!!)

I would love to hear what other people find helpful. Thank you for letting me join.
 
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snowfoot

Member
I am new to this forum but old at trying to get my thyroid hormones working right, recently found out i have hashimoto's. My best resource so far is stopthethyroidmadness.com but i had a really hard time getting my doctor to let me test for free T3 and rT3 (reverse T3) so i could do that ratio to see if T3 was actually getting into my cells where it is needed.

Years ago the most important test was rT3 to an endocrinologist but that was before our medical profession got dumbed down. So i found out i have too much rT3 which blocks up the receptors and the endo i went to wanted to only prescribe a new type of T4 and not the natural desiccated thyroid nor the T3 only that i requested so i am on my own, experimenting for this past month with NP thyroid and T3 and LDN (low dose Naltrexone) and having a hard time of it.

I also have Wilson's syndrome (my low body temperature 96.8 - 97.2) Also i just found out my body is attacking not only my thyroid but practically all the food i eat. Not fun.

I have been getting some insight on facebook, particularly "got endorphins" about using LDN and will be looking into candita, etc & sharpen my teeth for a mostly meat diet. I would never have imagined that getting out of bed could be so challenging (got to the point I was in bed 24/7!!!)

I would love to hear what other people find helpful. Thank you for letting me join.
 

Edie

Active Member
I am new to this forum but old at trying to get my thyroid hormones working right, recently found out i have hashimoto's. My best resource so far is stopthethyroidmadness.com but i had a really hard time getting my doctor to let me test for free T3 and rT3 (reverse T3) so i could do that ratio to see if T3 was actually getting into my cells where it is needed.

Years ago the most important test was rT3 to an endocrinologist but that was before our medical profession got dumbed down. So i found out i have too much rT3 which blocks up the receptors and the endo i went to wanted to only prescribe a new type of T4 and not the natural desiccated thyroid nor the T3 only that i requested so i am on my own, experimenting for this past month with NP thyroid and T3 and LDN (low dose Naltrexone) and having a hard time of it.

I also have Wilson's syndrome (my low body temperature 96.8 - 97.2) Also i just found out my body is attacking not only my thyroid but practically all the food i eat. Not fun.

I have been getting some insight on facebook, particularly "got endorphins" about using LDN and will be looking into candita, etc & sharpen my teeth for a mostly meat diet. I would never have imagined that getting out of bed could be so challenging (got to the point I was in bed 24/7!!!)

I would love to hear what other people find helpful. Thank you for letting me join.
Hi Snowfoot. I just received an email regarding a summit on thyroid starting October 24th. For those who are interested you can register at http://thyroidconnectionsummit.com Hope you will find some answers to your thyroid problems at this summit. Let us know how you are doing in the future. I received all my answers from a Naturopath Dr. after I got the same runaround from my MD.
 

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