How to deal with cruel dr when I am desperate, exhausted all drs?? Getting sicker

[starlily88]

[

Great, Hopkins sounds like the equivalent to what I have.

http://www.investinme.org/Documents/Guidelines/Myalgic Encephalomyelitis International Consensus Primer -2012-11-26.pdf
I asked my new doc first if she would like to receive clinicians info about ME and she said yes (good sign). Then I brought it at my next appointment. She actually skimmed through it and asked me a few questions at the appointment and seemed genuinely happy to receive it.

I did it that way vs. foisting it upon her at our first meeting, so it was more casual and not too pushy.

Caledonia - I found it - funny thing I re-read your post about finding ENDOs - it was great post.
I called Hopkins Thyroid Clinic today to beg for earlier appt with any thyroid dr. Told them how severe this has gotten.
So instead of July 5th - one month - have appt with same ENDO in 2 weeks from today

The way you approached new doc about the ME clinician info was great. I am definitely not as brave of you around new drs. Plus I can't tell if they would be interested. With male drs I don't have a clue.
Peace

 

[boombachi]

Good work @starlily88 It takes courage to change drs and to advocate for yourself. I will keep my fingers crossed for you.

 

[starlily88]

Good work @starlily88 It takes courage to change drs and to advocate for yourself. I will keep my fingers crossed for you.

Thanks boombachi. This has been a bad experience. Much of this could have been avoided if my ENDO had read my thyroid panel. My surgeon told me that most drs do not listen to what patients say, therefore miss diagnosis.

 

[drob31]

One thing I have learned about my thyroid over the last 4 years...

So before I "crashed" I was always sub clinically hypothyroid whether I knew that was my problem or not.

After I crashed, it was because I went so hypo that it triggered HPA-axis dysfunction.

So when I tried t3 or thyroid meds, they didn't work. Since my rt3 was high, doctors would not recommend t4.

However, t4 is what I needed, so far. I'm still working on it, but t4 has been the key for me, and t3 actually makes me hypo, paradoxically. It seems to have this effect on many people who have hpa-axis dysfunction.

So if NDT, or T3 doesn't work for you, even if your rt3 is high, it may be worth trying t4. Look up Dr. Keneth Blanchard. He seems to be the first person to have figured this out.

It's more complex than endo's know...

 

[starlily88]

After I crashed, it was because I went so hypo that it triggered HPA-axis dysfunction.
So when I tried t3 or thyroid meds, they didn't work. Since my rt3 was high, doctors would not recommend t4.

Thanks for your post. How did you know about your HPA-axis dysfunction? Just wanted to know if one can take a lab test. I sort of assume that most ME/CFS patients have this dysfunction.

This new ENDO I am going to ordered an ACTH test - to test I assume my cortisol, adrenals, pituatary gland.
So far can't get answer from Med insurance if they will cover it, gave them procedure code, and diagnostic code.

So far no one is helping me at all, except to give me beta blocker. My regular ENDO says he is waiting for me to change to hypothyroidism, which I have not done so far.

Biggest surprise to me is Endocrinologists seem to have limited knowledge, and differing knowledge of what to do to make a patient more comfortable during the awful symptoms of hyperthyroidism. They have no empathy, and little knowledge of what to do.

These last 3 months have been terrifying to me, especially May, when major dehydration, and major sleep insomnia, worse than the normal terrible insomnia that all ME/CFS people have, set in. My ENDO had no reaction, nor would he help me. My ENDO deals with diabetes mainly. I read his notes from my April visit. He seemed surprised that I concentrated on asking him about thyroiditis - when he had told me that I had it, and ordered Prednisone.

This whole 3 month ordeal has certainly turned me off to any Endocrinologists. Unfortunately I have a brand new
ENDO visit next Thursday. I will have to contain my negative feelings. It would be a miracle if this guy helps me.

 

[drob31]

Thanks for your post. How did you know about your HPA-axis dysfunction? Just wanted to know if one can take a lab test. I sort of assume that most ME/CFS patients have this dysfunction.

This new ENDO I am going to ordered an ACTH test - to test I assume my cortisol, adrenals, pituatary gland.
So far can't get answer from Med insurance if they will cover it, gave them procedure code, and diagnostic code.

So far no one is helping me at all, except to give me beta blocker. My regular ENDO says he is waiting for me to change to hypothyroidism, which I have not done so far.

Biggest surprise to me is Endocrinologists seem to have limited knowledge, and differing knowledge of what to do to make a patient more comfortable during the awful symptoms of hyperthyroidism. They have no empathy, and little knowledge of what to do.

These last 3 months have been terrifying to me, especially May, when major dehydration, and major sleep insomnia, worse than the normal terrible insomnia that all ME/CFS people have, set in. My ENDO had no reaction, nor would he help me. My ENDO deals with diabetes mainly. I read his notes from my April visit. He seemed surprised that I concentrated on asking him about thyroiditis - when he had told me that I had it, and ordered Prednisone.

This whole 3 month ordeal has certainly turned me off to any Endocrinologists. Unfortunately I have a brand new
ENDO visit next Thursday. I will have to contain my negative feelings. It would be a miracle if this guy helps me.

It's hard to quantify hpa-axis dysfunction, but basically it tends to be the thing that prevents everything else from returning to homeostasis. Most think it's a dysregulation in the PVN of the hypothalamus. So, if the hypothalamus was to become hypothyroid itself, that could start this dysregulation, at which point it gets stuck in a "deranged" state.

Possibly giving enough thyroid hormone (theoretically) could return it back to normal. But how much would you need and what kind is the question.

For me, t3 makes me go hypo, paradoxically. If you research this effect you will see 4 primary causes:

low cortisol
high cortisol
low serum iron
inflammation (HS-CRP, Ferritin, ESR, some cytokines)


None of those seem to be an issue for me.

It seems to be a tissue resistance to t3 not related to the 4 causes. So could that mean the t4 reserves themselves are too low and that in itself causes the hypothyroidism which causes the derangement of everything else. So once you have enough thyroid the tissue resistance goes away? That's what I'm looking in to.

But the thyroid can be quite a puzzle.


You need to get your labs values at least for a starting point. You could very well be different than myself. You could respond very well to t3, or t4 only or ndt, or even need cortisol.

Unless it's an easy case I doubt the endo can help, but I have some other resources if that doesn't help.

 

[starlily88]

For me, t3 makes me go hypo, paradoxically. If you research this effect you will see 4 primary causes:
low cortisol
high cortisol
low serum iron
inflammation (HS-CRP, Ferritin, ESR, some cytokines)

Thanks so much for your post.
I do indeed need an Iron Infusion ASAP. My Sed (ESR) was so high it was off the charts (<130).
My Free T3 was so high, plus my Free T4.

I talked to the "cruel" ENDO today. He was so angry that my Med Insurance has not Ok'd the ACTH testing.
I asked him for a letter showing it is medically necessary.

I called my regular ENDO. Asked for script to re-do Sed rate, TSH, Free T3/Free T4.
It does not feel good that I have to tell my ENDO what to do.
But since my T3/T4 were so very high on May 15th, then came down June 6th (almost to lowest level) I want
to make sure they are in the Range of acceptable.

Have you ever done the ACTH test? Has anyone on here have experience with ACTH testing?

 

[starlily88]

It's hard to quantify hpa-axis dysfunction, but basically it tends to be the thing that prevents everything else from returning to homeostasis. Most think it's a dysregulation in the PVN of the hypothalamus. So, if the hypothalamus was to become hypothyroid itself, that could start this dysregulation, at which point it gets stuck in a "deranged" state.

But the thyroid can be quite a puzzle.
You need to get your labs values at least for a starting point. You could very well be different than myself. You could respond very well to t3, or t4 only or ndt, or even need cortisol.
Unless it's an easy case I doubt the endo can help, but I have some other resources if that doesn't help.

To Drob31 - I did all my lab work on May 15th, then repeated June 6th.
My ENDO refuses to give me any Thyroid meds - only gave me beta blocker. This is not helping my
symptoms at all - I still can't sleep, I feel awful - I have all they bad symptoms of hyperthyroidism.

You say "unless it's an easy case, I doubt the Endo can help"
I have appointment at Hopkins Thyroid clinic this Thursday with Doc with years/experience thyroid cancer,
hyper/hypo thyroid, Grave's disease.
I don't have a lot of hope - since 2 ENDOs seem to disagree with each other.

Could you tell me what other resources you can think of - since I need help so desperately?

I did a thorough exam with my ENT - he knew zero about thyroid, wanted me to have endoscopy done, that is nuts!

 

[starlily88]

For me, t3 makes me go hypo, paradoxically. If you research this effect you will see 4 primary causes:

low cortisol
high cortisol
low serum iron
inflammation (HS-CRP, Ferritin, ESR, some cytokines)

Did you ever take a blood test "cortisol ACTH?" Going to repeat my Sed rate, thyroid levels, and cortisol.
I never sleep at nite - with this hyperthyroid stage, just can't.
taking test at 8 AM - supposed to be upon waking from sleep - new ENDO doesn't care that I won't be taking this after a nite of sleeping.

 

[soxfan]

I recently had blood cortisol level taken at 8am and immediately afterwards they gave me an injection to stimulate the adrenals to do the ACTH test. My levels tripled in an hour...started at 8.2 and went up to 30.

I came home and crashed badly...couldn’t get off the bed the rest of the day...I felt like I was dying.

Endo said all is fine with my adrenals...

 

[starlily88]

I recently had blood cortisol level taken at 8am and immediately afterwards they gave me an injection to stimulate the adrenals to do the ACTH test. My levels tripled in an hour...started at 8.2 and went up to 30.
I came home and crashed badly...couldn’t get off the bed the rest of the day...I felt like I was dying.
Endo said all is fine with my adrenals...

Soxfan (I am too) - My new ENDO has wanted me to come to his lab 8AM, draw blood for cortisol levels, and then
give me injection to stimulate the adrenals to do the ACTH test, just like you did.
First off - did you know ahead of time that your insurance would cover the test?
Mine has diagnostic code, procedures code - and why it is medically necessary - but won't tell me they will cover it.

You said "I felt like I was dying" - I asked this ENDO a million times what side effect I would feel?
I knew shooting someone full of a cortisol type injection would make one's brain/head feel like it was "high", speeding,
or "drunk" - he claims it does nothing - so how exactly where you able to "crash" from such a high?

Why did your ENDO say your adrenals were fine - so the test is supposed to go up by FOUR times the amount
and this is good?
I assume he was looking to see if you had Addison's disease or Cushing's disease?
Do you have thyroid disease? If not - why did you do this test?

This new ENDO I went to claims he does not have to inject me to stimulate my adrenals in order to see
if they are working (confusing that they all disagree).
He claims that doing a simple blood test will show this (did not want to do the saliva cortisol testing or the
24 hour urine testing or the Injection ACTH you just did. Very confused as to how a dr from Duke Med school,
and a Dr who heads Hopkins thyroid cancer clinic - totally disagree?

 

[soxfan]

@starlily88 ... Believe it or not ..my Endocrinologist is at Duke! She is supposedly one of the best. Along with the 8am Cortisol they did an ACTH blood test to see what the levels were in my blood before giving me the injection. They were good.

I don’t know why I crashed after the test.. maybe because the stimulant wore off and it made me feel drained and dead...I really didn’t feel anything during the test. After the injection I went to the hospital cafeteria and had something to eat. I felt nothing..not revved up or super energized.

I have hypothyroidism...the test was done because I went to her complaining about a four day serious crash I had recently had and mentioned I had been on HC in the past with low saliva cortisol...she does NOT believe in saliva testing.

She said my adrenals were working fine or else they would not have been able to go up to 30.2. Well of course if they are given an artificial stimulation then they would have to respond I think ...anyway she said she would ruin my adrenals if she gave me a low dose HC.

I even asked for a trial of a few weeks just to see if it would help and she said NO.
I recently had my saliva cortisol done and it was low in the Morning but not terrible and high at night.

I had no idea if insurance would have covered it but we have good insurance so I didn’t even think about it.

I have daily unrelenting fatigue no matter how good I sleep...i get up and within a few hours I feel tired and drained even if I have done nothing.

Good luck with your test...endocrinologists are known only to look for Addison’s or Cushings Disease.

I am seeing a functional medicine doctor now....

 

[starlily88]

@starlily88 ... Believe it or not ..my Endocrinologist is at Duke! She is supposedly one of the best. Along with the 8am Cortisol they did an ACTH blood test to see what the levels were in my blood before giving me the injection. They were good.

I don’t know why I crashed after the test.. maybe because the stimulant wore off and it made me feel drained and dead...I really didn’t feel anything during the test. After the injection I went to the hospital cafeteria and had something to eat. I felt nothing..not revved up or super energized.

I have hypothyroidism...the test was done because I went to her complaining about a four day serious crash I had recently had and mentioned I had been on HC in the past with low saliva cortisol...she does NOT believe in saliva testing.

She said my adrenals were working fine or else they would not have been able to go up to 30.2. Well of course if they are given an artificial stimulation then they would have to respond I think ...anyway she said she would ruin my adrenals if she gave me a low dose HC.

I even asked for a trial of a few weeks just to see if it would help and she said NO.
I recently had my saliva cortisol done and it was low in the Morning but not terrible and high at night.

I had no idea if insurance would have covered it but we have good insurance so I didn’t even think about it.
I have daily unrelenting fatigue no matter how good I sleep...i get up and within a few hours I feel tired and drained even if I have done nothing.

Good luck with your test...endocrinologists are known only to look for Addison’s or Cushings Disease.
I am seeing a functional medicine doctor now....

Neither of the 3 ENDOs I went to will do saliva cortisol.
Cortisol is supposed to be High upon waking at 8 AM, then gets lower thru the day I was told.
If yours is high at night - it must be very difficult to go to sleep.

Is HC - Hydrocortisone?
Dr that wants to give me the ACTH stimulant test (Duke guy) - he told me that the pituitary gland in brain
sends signal I think to make adrenals work. So since yours went way up, your adrenal glands did get the signal,
and went way up in response to that shot she gave you.

You could have had Adrenal Insufficiency if they had not responded, Addison's disease.

I agree with you about ENDOs. ENDOs seem to be one-minded - no tests/research has changed in last 50 years.
So it is a Miracle anyone diagnosed you with hypothyroidism - so under diagnosed.

With hyperthyroidism - Grave's disease or (they are calling mine) subacute thyroiditis - the symptoms
are so severe - I ran very high fever every day/nite for months, horrible pain that spread above collarbone on right side (my Internist told me it was "muscle pain") then under adam's apple to other side. I was awake 5 days in a row, did manage 3 hour nap - but my brain was racing, fever high, earache so bad, cough non-stop, could not breathe or get oxygen - the ER told me I was fine. Got so dehydrated needed Saline bag (I begged for).
I was in ER 2 times, Urgent Care 2 times, my Internist, my ENDO, my ENT - only got some relief being
on steroids for 14 days - then bam - got even worse when I stopped

Got so weak had to be carried up to my flat by my neighbor who happened to be a Hopkins Dr.
He read all my labs - told me how sick I was. He was amazed no one was helping me at all.

I never felt this way before - I thought I was dying, literally.till my neighbor told me what I had, and how bad
it makes one feel - he laughed at my ENDO saying it was "subclinical" - he said that meant it was mild.
He said it was not mild at all - but severe...............

Could you tell me what is a functional medicine doctor?

I really need help so badly - I lost my internist end of March after 20 years, just when I got sick.
I just cry at loosing him - but thinking of going back - he won't accept my insurance -but he will take me
if I pay him $1600.00/year. All other insurance is A OK

Did you find this functional medicine dr at Duke? Is this like a Naturopathic doctor?
Let me know, please - because I really need help - I just can't live like this...........

 

[StarChild56]

@starlily88
First, I am so sorry again for all you are being put through and going through.
Ridiculous that you can't be given an answer as to whether or not the test is covered.

I took the saliva cortisol and it was completely flat - very bad. My doc then had me do the blood test, then the shot, then took blood again I think 1 hour later?
The first blood test was very low (under normal)
The second one did double - but it was still under the recommended which I forget what it is
I think some docs say if it doubles after the shot, you are fine but if your numbers are already too low, that is not the case.
Anyway, I take 17.5 mg of hydrocortisone daily (split in 3 doses) for this. I do not have Addison's, or Primary Adrenal Insufficiency I have Secondary Adrenal Insufficiency. I am foggy brained (as usual) but I think with primary, or AI you do not get the reaction after the injection. I could be remembering wrong.

 

[StarChild56]

Thanks Honra. Sorry you have Secondary Adrenal Insufficiency. I only read about Addison's/Cushings.
When you did the saliva cortisol, then the ACTH stimulation test - was this all done by an Internist of Endocrinologist?
I am sorry you got this result - So taking the Hydrocortisone isn't enough to overcome the adrenal insufficiency?

Do you think I should just take a chance and do the ACTH shot in his office? I can't imagine Medicare not covering
this - he said it was medically necessary, and he is chomping at the bit for me to do this. I think it costs around
$400.00 - just want to make sure it is not $2,000.00 test

Thank you for your kind words

I have a specialist who works with people with ME/CFS, POTS, OI, MCAS, EDS, and gosh so many other things that seem to have an overlap. He said I had the 5 - POTS, MCAS, EDS and I forget the other two. I can't keep up it is so much to wrap my head around.

He is amazing. So he gave me the saliva cortisol test to take at home and then put in the mail (it was $180 then, now I think I read it is $200). He does not bill insurance so I pay him in cash. The ACTH test, was done in his office as you have to be very closely monitored. I was in a wheelchair, and his nurse was so amazing having to contort herself trying to get blood from me (my veins are deep and wiggly and sometimes super hard to find, and they roll away). Then after you get the shot, you are not supposed to move so she just rolled me into a parking spot (lol) in the waiting room and I waited with my husband an hour and she had to do gymnastic contortions again to get blood.

I did not feel any ill affects whatsoever, but maybe because my whatever did not go up very high.

I can't imagine why Medicare would not pay for this standard test, if medically necessary (which it is, so there it is). But I find it annoying that they won't just tell you that because it can be so stressful wondering if something is covered!

I have 2 insurances, one is Medicare and as far as all the tests, between the 2 - I have had to pay little out of pocket. But Medicare is my secondary so I don't know how much of it was paid by them after my primary.

I did have to pay for the nurse's time, injecting and watching me but it was not bad.

I wish you so much luck and a good doctor and good treatment and better health

 

[starlily88]

He is amazing. So he gave me the saliva cortisol test to take at home and then put in the mail (it was $180 then, now I think I read it is $200). He does not bill insurance so I pay him in cash. The ACTH test, was done in his office as you have to be very closely monitored. I was in a wheelchair, and his nurse was so amazing having to contort herself trying to get blood from me (my veins are deep and wiggly and sometimes super hard to find, and they roll away). Then after you get the shot, you are not supposed to move so she just rolled me into a parking spot (lol) in the waiting room and I waited with my husband an hour and she had to do gymnastic contortions again to get blood.

Thanks Honra.
Do you remember the cost of the ACTH test from the lab?

The reason I haven't gone ahead with the ACTH test is first off I was scared to death.
Also he is the one giving the shot - so who is going to pull the blood. He has 2 "techs" he calls them.
He told me they are not allowed to give me the shot.

If either he or the techs try to draw blood it just won't happen - mine are exactly like yours.
No nurse can get blood out of me without giving me big hematomas, and trying 4/5 times, then giving up.

The office billing dept I called - talked to biller been there 30 years, she has never billed for ACTH before so
could not even tell me the price - so I wonder if his diagnostic/procedure codes are correct. My ENDO always does
wrong ones - but the Hospital lab corrects them with me.

So glad you found this dr who does everything you have - sorry you have all these, but so glad you have this
guy. He must have so many people flock to him, I definitely would

Hopkins Dr didn't want to see me until 5 months - I freaked - so he said 4 months.
He wanted me to re-do my blood work on Friday (I saw him on Thursday). I was wiped out.
He wanted to call me this Tueday - but I have very important dentist appointment..
So I have to run to lab at 8 AM this week - with zero sleep - so my cortisol should be low.

He did think my hyperthyroid staging is over mostly. I certainly don't think so.I feel just awful.
The GERD, my stomach, not sleeping - I am so wanting to go back to my regular feeling lousy days.
He wanted me to re-do my blood work next day, and call me this Tuesday.

I know POTS, EDS - not OI, MCAS - think its Mast cell activation syndrome. I wish I had someone to see if I have that. I have they symptoms. Where you live is much better than East coast.
Peace and Love

 

[soxfan]

@starlily88 A Functional Medicine Doctor looks outside the box and mainly treats according to symptoms...not necessarily from a lab test result. She has done tests on my that no one has ever done in 14 years of being ill.

I am not sure how much knowledge she has on CFS which is a definite concern. Right now she is focusing on healing my gut...and making sure my cortisol is lower at night. She also is helping me learn how to meditate.

She honestly feels she can get me well but says there are many more things to look into. I see her 2 or 3 times a month and we also communicate by email.

It’s not too hard to diagnose hypothyroidism...at least I didn’t think so if the doctors are doing all the correct testing and not just TSH.

My morning 8am cortisol was on the low end 8.2 (range 5-24) but because it tripled in an hour my adrenals I guess are functioning although the morning is low when it’s supposed to be high and my night is high when it is supposed to be low...so I have a screwed up circadian rhythm.

But I actually sleep good most nights with the help of melatonin and Lunesta. I usually feel like I am sleeping well but still have horrible fatigue in the mornings.

Anyway...remember that cortisol levels can change quickly and it has happened to me. Once I was 8.4 in the am and two months later I was 24 in the am without treatment...so at any given time they can fluctuate....which is why unless you really flunk the test they won’t treat...

My endo admitted my morning level was on the low side but I passed the ACTH stimulation.

Good luck with the test....

 

[StarChild56]

Do you remember the cost of the ACTH test from the lab?

Unfortunately, I do not, sorry.

The reason I haven't gone ahead with the ACTH test is first off I was scared to death.
Also he is the one giving the shot - so who is going to pull the blood. He has 2 "techs" he calls them.
He told me they are not allowed to give me the shot

Well, the nurse (an RN) both gave me the shot, and took the blood. I know that an RN is allowed to and that if you are not an RN (or MD, obviously) - like a tech or phlebotomist, you can not administer the shot. But techs/phlebotomists can draw the blood.

If either he or the techs try to draw blood it just won't happen - mine are exactly like yours.
No nurse can get blood out of me without giving me big hematomas, and trying 4/5 times, then giving up.

Oh, Starlilly I'm so sorry to hear that. I have been making sure to eat LOTS of salt and drink LOTS of water and sometimes Gatorade - due to my POTS and that seems to have helped in regards to getting a good vein. But truly, since I have been so ill I have to have monthly safety labs taken, and with this specialist I've had I believe 3 or 4 big lab draws - like 23 vials - and since having surgery and so many things in the last 4 years I have gotten used to getting my blood drawn. Usually if I've had enough salt and water, but also rest - and I know you have not been able to sleep - I have usually been ok. Even if sometimes they have to go in another arm. And, I have big veins in my hand so I know if all else fails, I tell them they can use a small butterfly and get in my hand easily. So I wish you so much good luck! I do find the more experienced phlebotomists and RNs are better at getting at my veins. I've had some really good ones who with some time, prodding with their fingers, find the vein and one painless poke get in and it is fine and they told me my veins aren't hard although deep and wiggly. So who knows. If you can tolerate Gatorade or Coconut Water - I highly recommend getting really well hydrated. I know some folks completely avoid any kind of sugar BUT having some form of sugar (natural sugar in coconut water, sugar in Gatorade) helps hydrate and works with the electrolytes somehow. But in any case, fluid and electrolytes. I try the day before to even start getting my veins plumped up!

The office billing dept I called - talked to biller been there 30 years, she has never billed for ACTH before so
could not even tell me the price - so I wonder if his diagnostic/procedure codes are correct. My ENDO always does
wrong ones - but the Hospital lab corrects them with me.

Yikes!

So glad you found this dr who does everything you have - sorry you have all these, but so glad you have this
guy. He must have so many people flock to him, I definitely would

I think he may have saved my life. I do not know what I'd do without him. I found out about him on here, btw. He is the only little hope I have of getting better.

I know POTS, EDS - not OI, MCAS - think its Mast cell activation syndrome. I wish I had someone to see if I have that. I have they symptoms. Where you live is much better than East coast.
Peace and Love

OI is Orthostatic Intolerance, my blood pressure can drop 20 points from standing up. And yes, MCAS is what you say I wish you did, too! You would think the East Coast would have some top specialists, too! I am on the West Coast. I have to drive (well, be driven I can not drive) 2 to 3 hours depending on traffic which is absolutely brutal for me. However, I've seen him in person 3 times and have had 3 phone consults. He is very flexible.

Peace and Love

 

[starlily88]

A Functional Medicine Doctor looks outside the box and mainly treats according to symptoms...not necessarily from a lab test result. She has done tests on my that no one has ever done in 14 years of being ill.
I am not sure how much knowledge she has on CFS which is a definite concern. Right now she is focusing on healing my gut...and making sure my cortisol is lower at night. She also is helping me learn how to meditate.

She honestly feels she can get me well but says there are many more things to look into. I see her 2 or 3 times a month and we also communicate by email.
It’s not too hard to diagnose hypothyroidism...at least I didn’t think so if the doctors are doing all the correct testing and not just TSH.

Soxfan - how did you find the functional dr?
I googled it in my area - found one center an hour away - but don't have clue what or who the drs are there? DId you just take a chance? I get recommendations on drs, read their CVs, patient reviews.

I would love for someone to heal my gut. That is fantastic that she is doing tests that no other drs thought of.

I assume she does not take insurance - these drs just do cash - am I correct?
Is it affordable? that is great you see her 2/3 times/month! And to be able to email a dr, wow!

Very impressed that she is teaching you to meditate - that is exactly what I need to do, to lower the stress I just
can't handle being so sick.

Please let me know, thanks starlily88

 

[StarChild56]

This dr is a dream come true - so someone on here told you about him?
3 phone consults is just great - and I love that you have online portal - have that for Hopkins, love seeing my
lab results next day.

Yes, I don't remember whose posts but a number of posters did - Dr. Kaufman.