Re: New To Group, Thinking of Switching from Endo (nick) to GP (DeVries)

[Guest guest]

Hi Gail,

Based on my personal experiences your proposed way forward is spot

on. Launius in ville may be your best bet wrt to your last

point of being treated until symptoms resolve.

I was fortunate that my GP was willing to treat based on symptoms

and was flexible with my increases in T3. However, I am very

persistent about things and bring in lots of research substantiating

my views. My experience with myself and my sons has been that as

long as you have a doctor that will monitor the nodules (my GP does

sonograms regularly), then you may not need an endo going forward.

My sons have just recently started on Synthroid and I'm happy to

hear that your nodules have decreased in size. There is alot of

controversy about this, however, there is medical research that

shows that by treating until the TSH is <= to 1, that nodules may

decrease in size and the majority are benign. I can forward links if

folks are interested.

I am now one of the people that needs Free T3 at the upper end of

the range (and sometimes over) to feel well (and I'm fairly

confident in that being a big factor in my feeling the best I have

in my entire life I also need my Free T4 between mid-range and

the upper end. Both my PCP and my GYN (whose a functional medicine

doctor) are willing to Rx the amount of thyroid I need ONLY because

I am doing so well. My experience has been that increases in T3 are

almost always quite noticeable very quickly (in a few days). The T4

increases and/or decreases often take longer in my experience for

the impact to be noticeable.

Everyone is different, but it seems you already have a good

intuitive feel for your own body, which is really, really important.

And, you are totally on track for realizing that you (and not a

doctor) are ultimately responsible for your wellness. I personally

view doctors as a partner in my wellness, with their task to provide

me with the tools and suggestions on a potential way forward. Again,

you seem to be of a similar mindset. Others in the group may also

share similar views.

That all said, you do really need them to test Free T3. And, you

likely have already learned that running the labs at the same time

each day before you've taken your thyroid gives you the best measure

of where your body might really be. For most folks, morning is

best, since most of us do very poorly if we don't take our thyroid

first thing in the morning. I need to take my T3 3x/day (I'm on

Levoxyl and cytomel since I'm allergic to Armour due to porcine

source) to feel my best. But, again, we're all different and from

what I've read on this list and elsewhere, many do just fine with

the 2x/day dosing.

I am in 100% agreement with on on the bone density wrt to quality of

life. I also believe that many of us enter the thyroid treatment

with borderline osteoporosis. One factor you might want to consider

is whether gluten intolerance (or celiac) is a contributing factor

(research supports this) as it is often results in poor absorption

of fat soluble vitamins including vitamin D that is required to

build bone. Also, considering your switch to Armour, you are now

getting calcitonin which is important for bone building. It's my

personal opinion that the research on the decrease in bone density

for folks being treated is both due to folks taking synthetic

thyroid vs Armour and folks being undertreated.

And, you are 100% on target with understanding the importance of

lifestyle factors like exercise and diet in your overall wellness. I

don't think anyone can achieve their optimal wellness eating the SAD

and not exercising (even daily walking is shown to improve overall

wellness). Of course, all these are things that should be discussed

with your healthcare provider as the current state of wellness and

other issues (e.g., cardiac, blood sugar, adrenals) need to be

considered. As well as measuring ferritin, B vitamin status is

really important. B5 (along with cholesterol) are both at the

top/beginning of the chain/process for the production of adrenal

hormones. And, the hormone production of almost all the hormones is

inter-related.

And, finally, you have found one of the best sources in my

experience for shared experiences on thyroid treatment and overall

wellness (and you will quickly learn that just about all my postings

are long . I will be setting up some files with links to info on

celiac/gluten intolerance (1 out of 6 with Hashi's also have celiac,

many undiagnosed, and likely more with gluten intolerance) and other

factors like environmental impacts can also be an important

consideration for overall wellness.

Be well,

B.

>

> Hi!

>

> I'm glad to find this group. I was diagnosed w/ Hashi's several

years

> ago. Switched from completely clueless endo (Emilia Popa in Dallas,

> oh, stay away...!) to Dr. nick in Dallas, who said he

> treated by symptoms as well as #s initially and used T3 but after a

> while I'm wondering if he may a bit too conservative for me. (And I

> understand the importance of watching bone density, since I'm

> borderline osteoporotic, but what good is all that bone density if

you

> can't get off the couch?!)

>

> First question: He just switched me to Armor last week (90 mg from

137

> mcg Synthroid) and I've had a couple of good days and some not so

> great ones. I know T3 has a very short half-life but that it takes

> several weeks for stuff to show up in your bloodwork (is that TSH

> mostly?). I remember when I started Synthroid for the first time

> feeling really great for 2-3 days during the adjustment period. If

> Armor is going to work for me, should I know it within a few days

or

> does it sometimes take weeks? (I'm splitting my dose am &

afternoon.)

> I kinda don't want to wait until our next scheduled visit to tackle

> this if it's already clear 90mg of Armor isn't going to do it for

me.

> Feel like I've already wasted so much time feeling crappy lately.

>

> Second question: I had two sizable nodules when I began treatment

w/

> Dr. nick and they have shrunk considerably with the Synthroid

(TSH

> currently 0.62). Now that cancer has been ruled out, do I still

need

> an endo. to follow b/c of the nodules or can I switch to a GP?

>

> Last question (sorry this is so long!): In considering a new doctor

> (or a new, more specific agreement w/ nick), do y'all think

this

> would be a good set of treatment goals to present to a Dr.?

>

> - rule out (or treat for) anemia (by checking ferratin)

> - rule out (or treat for) adrenal insufficiency (by 24 hr. saliva

or

> urine cortisol)

> - be open to using T3

> - regularly run FT3 and FT4 (currently nick runs FT4 and totT3

and

> TSH)

> - having done these things, treat primarily according to symptoms

> until *I* say I feel well, keeping in mind of course my age,

> reasonable expectations, the balance between undertreating and

risking

> bone loss/heart damage, etc. (assuming I'm also eating well,

> exercising, all that stuff).

>

> Thanks so much!!!!

>

> Gail

> (Dallas)

>

[Guest guest]

DeFries absolutely will not Rx Armour. And he also does not run the right tests.

I would suggest that you work with nick until you reach an impasse. Or have you already reached that point? The 90 mg starting dose is reasonable. How long have you been on that dose? If you would like to post your recent labs on that dose, we may be able to make some suggestions.

If you want a new doc in the DFW area, Launius in ville, Owens in Rowlett, Sullivan in Irving, maybe Elmore in Irving are the only ones we recommend. Launius will neither test not treat for adrenal insufficiency. Owens will test, but generally treats with supplements only or with hydrocortisone short term only. Not sure about Sullivan's protocol for adrenals.

Once you get on a stable dose, my doc Alan Berg (and all of the other docs in that INOVA group) will prescribe Armour and run Free T3 and Free T4 for their regular patients, but does not understand dosing. He will also not deal with adrenals or other hormones at all. But he takes most insurance, some HMOs and Medicare.

Osteoporosis is associated with extremely high (over-range) levels of T3 and T4, not high in-range levels. It is also associated with untreated or undertreated hypothyroidism.

>> Hi!> > I'm glad to find this group. I was diagnosed w/ Hashi's several years> ago. Switched from completely clueless endo (Emilia Popa in Dallas,> oh, stay away...!) to Dr. nick in Dallas, who said he> treated by symptoms as well as #s initially and used T3 but after a> while I'm wondering if he may a bit too conservative for me. (And I> understand the importance of watching bone density, since I'm> borderline osteoporotic, but what good is all that bone density if you> can't get off the couch?!)> > First question: He just switched me to Armor last week (90 mg from 137> mcg Synthroid) and I've had a couple of good days and some not so> great ones. I know T3 has a very short half-life but that it takes> several weeks for stuff to show up in your bloodwork (is that TSH> mostly?). I remember when I started Synthroid for the first time> feeling really great for 2-3 days during the adjustment period. If> Armor is going to work for me, should I know it within a few days or> does it sometimes take weeks? (I'm splitting my dose am & afternoon.)> I kinda don't want to wait until our next scheduled visit to tackle> this if it's already clear 90mg of Armor isn't going to do it for me.> Feel like I've already wasted so much time feeling crappy lately.> > Second question: I had two sizable nodules when I began treatment w/> Dr. nick and they have shrunk considerably with the Synthroid (TSH> currently 0.62). Now that cancer has been ruled out, do I still need> an endo. to follow b/c of the nodules or can I switch to a GP?> > Last question (sorry this is so long!): In considering a new doctor> (or a new, more specific agreement w/ nick), do y'all think this> would be a good set of treatment goals to present to a Dr.?> > - rule out (or treat for) anemia (by checking ferratin)> - rule out (or treat for) adrenal insufficiency (by 24 hr. saliva or> urine cortisol)> - be open to using T3> - regularly run FT3 and FT4 (currently nick runs FT4 and totT3 and> TSH)> - having done these things, treat primarily according to symptoms> until *I* say I feel well, keeping in mind of course my age,> reasonable expectations, the balance between undertreating and risking> bone loss/heart damage, etc. (assuming I'm also eating well,> exercising, all that stuff).> > Thanks so much!!!!> > Gail> (Dallas)>

[Guest guest]

Sullivan’s protocol (at least for

me) is to treat with DHEA and Pregnolone. My salvia test (he ordered)

came back as Adrenal Fatigue (Zone 7) and shows that by 11am my Adrenals

crash. I think if my morning cortisol was further below normal then he

may have recommended hydrocordisone. He said he was not beyond using it.

Hope that helps,

Penny

From: Texas_Thyroid_Groups [mailto:Texas_Thyroid_Groups ] On Behalf Of Jan

Sent: Monday, December 01, 2008

11:56 AM

To: Texas_Thyroid_Groups

Subject:

Re: New To Group, Thinking of Switching from Endo (nick) to GP (DeVries)

DeFries absolutely will not

Rx Armour. And he also does not run the right tests.

I would suggest that you work

with nick until you reach an impasse. Or have you already reached that

point? The 90 mg starting dose is reasonable. How long have you been on that

dose? If you would like to post your recent labs on that dose, we may be able

to make some suggestions.

If you want a new doc in the

DFW area, Launius in ville, Owens in

Rowlett, Sullivan in Irving, maybe Elmore in Irving are the only ones we recommend.

Launius will neither test not treat for adrenal insufficiency. Owens will test,

but generally treats with supplements only or with hydrocortisone short term

only. Not sure about Sullivan's protocol for adrenals.

Once you get on a stable

dose, my doc Alan Berg (and all of the other docs in that INOVA group)

will prescribe Armour and run Free T3 and Free T4 for their

regular patients, but does not understand dosing. He will also not deal

with adrenals or other hormones at all. But he takes most insurance, some HMOs

and Medicare.

Osteoporosis is associated

with extremely high (over-range) levels of T3 and T4, not high in-range

levels. It is also associated with untreated or undertreated hypothyroidism.

>

> Hi!

>

> I'm glad to find this group. I was diagnosed w/ Hashi's several years

> ago. Switched from completely clueless endo (Emilia Popa in Dallas,

> oh, stay away...!) to Dr. nick in Dallas, who said he

> treated by symptoms as well as #s initially and used T3 but after a

> while I'm wondering if he may a bit too conservative for me. (And I

> understand the importance of watching bone density, since I'm

> borderline osteoporotic, but what good is all that bone density if you

> can't get off the couch?!)

>

> First question: He just switched me to Armor last week (90 mg from 137

> mcg Synthroid) and I've had a couple of good days and some not so

> great ones. I know T3 has a very short half-life but that it takes

> several weeks for stuff to show up in your bloodwork (is that TSH

> mostly?). I remember when I started Synthroid for the first time

> feeling really great for 2-3 days during the adjustment period. If

> Armor is going to work for me, should I know it within a few days or

> does it sometimes take weeks? (I'm splitting my dose am & afternoon.)

> I kinda don't want to wait until our next scheduled visit to tackle

> this if it's already clear 90mg of Armor isn't going to do it for me.

> Feel like I've already wasted so much time feeling crappy lately.

>

> Second question: I had two sizable nodules when I began treatment w/

> Dr. nick and they have shrunk considerably with the Synthroid (TSH

> currently 0.62). Now that cancer has been ruled out, do I still need

> an endo. to follow b/c of the nodules or can I switch to a GP?

>

> Last question (sorry this is so long!): In considering a new doctor

> (or a new, more specific agreement w/ nick), do y'all think this

> would be a good set of treatment goals to present to a Dr.?

>

> - rule out (or treat for) anemia (by checking ferratin)

> - rule out (or treat for) adrenal insufficiency (by 24 hr. saliva or

> urine cortisol)

> - be open to using T3

> - regularly run FT3 and FT4 (currently nick runs FT4 and totT3 and

> TSH)

> - having done these things, treat primarily according to symptoms

> until *I* say I feel well, keeping in mind of course my age,

> reasonable expectations, the balance between undertreating and risking

> bone loss/heart damage, etc. (assuming I'm also eating well,

> exercising, all that stuff).

>

> Thanks so much!!!!

>

> Gail

> (Dallas)

>

[Guest guest]

Oh my gosh, you guys are awesome--thanks so much!!! Thanks especially

for taking the time to write such a thorough and encouraging

response. I really appreciate it. This is such a long, frustrating

journey we're on and it's just good to have folks who can provide some

help and support.

By perusing folks' experiences here w/ Dr. DeVries, I think I've been

steered away from him for now... am talking to my (wonderful) GP about

assessing my adrenals and if she won't/can't assess and treat if nec.,

I'll go to either Sullivan or Owens or maybe Gonino in Rowlett. I

imagine that's tricky co-ordinating thyroid treatment via a

conventional medical person like an endo and a more natural approach

to adrenal treatment through another, more holistic practitioner, but,

hey, whatever needs to happen. My GP told me about a compounding

pharmacy in town that does the saliva kits, but she also looks @

bloodwork & urine, so I think I'll go to her for a complete adrenal

workup. Then, after that, I'll probably feel much more confident with

proceeding w/ thyroid (or co-treating). Or maybe if I go to nick

w/ convincing numbers if my adrenals are bad, he'll be willing to

treat himself.

No, I don't think I'm quite done w/ nick. I actually like him.

He's very personable, really takes the time to talk/xerox articles for

me and listen to me and takes a collaborative approach and is

generally fairly open-minded. He's just been around a while and I just

think maybe I haven't been quite assertive enough in identifying and

communicating when I really feel like it's my thyroid (vs.

stress/depression, etc.) and I need more/different meds, so I'll stick

w/ him a bit longer, but only if he'll start running FT3s and assure

me he really won't be satisfied with my treatment until I'm reasonably

satisfied.

My latest labs unfortunately aren't terribly revealing. These were on

Synthroid .125:

TSH: 0.62

Total T3: 135 (don't have the ref. in front of me)

He'd done a baseline Total F4 a year or so ago, and that was 1.2

Don't know how worried I should be that he hasn't routinely been doing

FT3, but I'll certainly request it now that I'm on a T3 drug (Armour).

If I don't feel better on the Armour after a week or so, is there any

reason to wait 6 weeks (and I know most docs only wait four...) to do

the bloodwork? Do you all wait until you find a dose/drug therapy that

seems as if it's working to wait the several weeks to do bloodwork or

do you do the dose change, wait to get bloodwork regardless then

request the change? I'm sick of feeling tired, you know?!

Thanks so much, everyone. What a great group.

The " things actually written in patient charts " had me laughing out

loud this morning--thanks to whomever posted that!!

Gail