NEW and doctor woes

[Guest guest]

Doctor-confused and new (X-POST w/ Mediboard)

Hi. My introduction. I'm a 50 yo woman who seems to be picking up a

diagnosis (i.e., label) a week and am betwixt and between several

doctors who offer widely conflicting advice. In short, since May 2003,

I seem to have developed TED (mild so far) with a fully suppressed TSH,

still normal thyroid hormone levels (T4--free T3-T3-free T3, and a

" positive " TSI (140 in October). The TPO was normal in May (that is the

same as the thyroid peroxidase AB according to the doc?). The specific

levels and ranges are all shown below. A DEXA scan also showed

osteopenia and I've shown increasing signs of on-going inflammatory

processes (possibly plantar fascitiis and variable joint pain).

I'd really appreciate ANY help with what I think I'm doing and what

might be going on. My current thoughts are to keep resisting doctor no.

2a's desire to treat the thyroid with " something " (see below) since the

thyroid hormone levels are currently normal. Surely, trying to raise

the TSH with ATD's would only make me hypo? I AM open to treating the

osteopenia by starting Actonel or maybe Fosamax per doctor no. 2a.

Doctor no. 3 says no to these drugs saying that any use will only

stabilize the bone loss and prevent the growth of new bone for " several

years. " But at age 50 (in perimenopause) how much bone could I be

growing anyway?

My major concern at this point (since I pretty much feel fine) is to

prevent the development of future autoimmune disease processes (they run

in the family). I've seen some responses to posts from folks with

" just " subclinical graves saying that you may have caught it in time

etc. But I'm not real clear what that means in terms of what to do.

I'm already cleaning up my diet. Have any of the alternative approaches

(i.e., acupuncture, BRT etc.) be shown to be helpful in lowering

antibody levels and prevention?

From what I've read here, the " positive " TSI means that I actually have

active Grave's disease. But why the normal hormone levels? Elaine's

articles say that that could be because my TSI antibodies are balanced

by TPO antibodies (which WERE normal, but that was in May with the TSI

test in October). I also saw Elaine say the other day that you can get

transient symptoms from the antibodies alone, which could explain the

relatively mild joint pain and maybe even be a trigger for the plantar

fascitiis?

My one foray to date into holistic medicine (see below) has not been

much of a success. But since I bought the darn things I AM planning on

adding the vitamin supplements suggested for about a month and then move

on to acupuncture in January. I could also move on to other doctors,

but time and energy become an issue.

HERE GOES FOR THE FULL STORY (and lab ranges) for those with more

reading time. I'm pretty dismayed by the seeming difficulty in getting

good comprehensive medical care. But I guess you all well know how it

goes ...

May 2003.--To start ... I noticed that my left eyelid was retracted in

May 2003. The ophthalmologist (who specializes in strabismus, which I

have) diagnosed TED and sent me to doctor no. 1 (my regular internist)

for blood tests, which showed--

T4, total 8.8 (range 4.5-12.5)

T3, total 130 (range 60-181)

T3 uptake 34.6 (range 27.8-40.7)

T4, free, calculated 3.0 (range 1.6-3.7)

Thyroid peroxidase AB <2 (range less than 2)

Thyroglobulin AB <2 (range less than 2)

*TSH <0.01 (0.4-5.5)

My internist left a phone message that my thyroid tests were " normal. "

I promptly conveyed that to my ophthalmologist who, seeing that there

was no sign of proptosis or inflammation in the eye muscles, referred me

to an ocular plastic surgeon to rule out a tumor (thought unlikely)

" just so we can both sleep at night. " He's a sweetheart. Truly. He

also referred me back to my internist to find out why the internist

thought a fully suppressed TSH was " normal. " The ocular plastic surgeon

confirmed " TED " and diagnosed euthyroid graves disease.

Mid-August 2003.--Doctor no. 1 reran the May blood tests. By this time

I was also having variable (but, worryingly bilateral) joint pain with

knee dysfunction, foot neuropathy, and periodic swelling and redness on

the bottoms of both feet. I suggested that we do a full blood work-up

in preparation for a physical and requested that the internist also run

tests for thyroid " antibodies. " The blood tests (for thyroid) showed--

T4, total 9.4 (range 4.5-12.5)

T3, total 131 (range 60-181)

T3 uptake 34.9 (range 27.8-40.7)

T4, free, calculated 3.3 (range 1.6-3.7)

T4, free, non-dialysis 1.6 (range 0.8-1.8)

*Thyroglobulin AB 2 (range less than 2)

*TSH <0.01 (0.4-5.5).

At which point ... the internist said I'd better see an endocrinologist.

When asked whether the other returned blood work shed any light on the

continuing inflammatory symptoms, he said he hadn't run an arthritis

scan (although he HAD referred me to a radiologist for knee X-rays).

FRUSTRATION. The knee X-rays showed no evidence of osteoarthritis but

did show bilateral joint effusions which could result either from

overuse syndrome (a possibility) or early rheumatoid arthritis.

Being more concerned at this point about the on-going joint pain and

inflammation I decided to first see doctor no. 2 (i.e., another

internist who had a national reputation for being willing to treat

rheumatoid arthritis with antibiotics).

Late August 2003.-Doctor no. 2 looked at my (I guess) abnormal hyper

reflexes and slight hand tremor and said that I was in (or approaching

?) thyroid storm even though I had tests results from a week before that

showed normal T3 and T4. Puzzling? Having read about the connection

between suppressed TSH and osteoporosis, I asked for a DEXA scan. HIS

thyroid blood work for me showed:

T4, total 9.8 (range 4.5-12.5)

T uptake 36 (range 26-38)

*TSH <0.01 (0.4-5.6)

with (FORTUNATELY) a normal and/or negative SED rate, C-Reactive Protein

Screen, Rheumatoid Factor Screen, Lyme Disease IgG (using Western

Blot!!!), and streptolysin O Antibody. Doctor no. 2 said I needed an

endocrinologist.

Mid-September 2003.--As I suspected, the endocrinologist confirmed that

I was neither " normal " nor approaching possible imminent death (i.e.,

from thyroid storm)!!! He found thyroid nodules (later confirmed with

ultrasound as diffuse small nodules; no biopsy planned), told me that

full-blown Graves Disease was (for me) probably in the future, and

ordered new blood work for December. He did not order a TSI since " it

wouldn't tell us anything that we didn't already know " and said that it

was unlikely that the DEXA scan (results not yet back) would show

anything other than normal since I was still pre-menopausal.

Late-September 2003.-The DEXA evaluation of the left hip was " normal "

(i.e., 94%); that of the axial skeleton was NOT (i.e., 85% or

osteopenia). Not good at my age.

October 2003.--I took myself off to doctor no. 3, a

holistically-oriented internist with a degree in nutrition who worked (I

thought) with a Beijing-University trained physician/acupuncturist.

Although the endocrinologist said that there was nothing I could do to

prevent future health problems, I had by this time been avidly reading

the Graves list-serve, Mediboard, and looking at 's web site etc.

Internist no. 3 ordered a hormonal scan, Organix nutritional analysis,

and thyroid bloodwork (and adrenal testing, with no results for that

back yet).

In the meantime during my annual PAP smear, my gynecologist weighed in

with advice to hold off treating the osteopenia with a drug like Fosamax

(or Acconel, I guess, for me) until we could compare a year-later DEXA

scan. In October I also had to go to Doctor no. 2a (an associate of

doctor no. 2) when a large cyst became infected and had to be drained.

Doctor No. 1 had been fired by this point! Doctor No. 2a. said I should

treat the osteopenia immediately saying I could have full-blown

osteoporosis within a year and also wanted to start " treating " the

thyroid even though I tell her that her boss (doctor no. 2) has already

referred me to an endocrinologist (who I'd seen). Doctor No. 2a, when

asked, proposed drugs to suppress the thyroid (and, I guess, raise the

TSH level). I pointed out that I have normal F3 and F4 and that any

ATDs (without, of course, a block, which I don't think she meant) would

totally upset my thyroid functioning. Then doctor no. 2a proposed RAI,

saying that something needed to be done soon about the suppressed TSH

level. Doctor No. 2a did say that she thought that the foot

inflammation was plantar fasciitis, which was very helpful although I'm

not sure she's right.

I decide to hold off of any kind of decision until my November

appointment with Doctor No. 3 in the hope of getting some

holistically-oriented comprehensive approach.

November 2003.-It's just SO discouraging. Doctor No. 3 wasn't at all

interested in discussing the thyroid even though he'd ordered (and I'd

paid almost $300 for) the TSI (he doesn't take insurance). Never did

find out why he thought he'd ordered it. (I wanted it per you all.) A

concurrent T4, free (direct) was 1.51 (range 0.61 to 1.76). Still

normal! He pretty much just wanted to show me the computer-generated

nutritional charts and sell supplements (that contain iodine). He

pooh-poohed avoiding iodine (didn't seem to know what I was talking

about although, as an Mayo-clinic trained physician, he was well

familiar with their early work in iodine therapy to prevent thyroid

storm when operating). Although trained as a nutritionist, he never

mentioned diet (including flax for the TED). Although working with an

acupuncturist (they are just now splitting offices), he discouraged my

trying acupuncture to help control what he feels is systemic

inflammation in my body (due to auto-immune processes) saying that it

doesn't work for everyone even though it can be effective for plantar

fasciitis and TED. GRRRRRR.

The TSI, btw, was at 140 % (normal less than 130). I was pleased that

it was that so low since the American Thyroid Assoc. has just released a

study indicating that the prevalence and levels of thyroid-stimulating

hormone receptor antibodies (TSHR-AB-is this TSI?) are significantly

higher in patients with a severe course of TED compared to those with a

mild course. Doctor No. 3 said that the level of the TSI test was

immaterial and should only be read at binary (i.e., positive-negative).

He also had no knowledge of the many (I believe from the sheer no. of

google hits) connecting suppressed TSH with osteoporosis (in granted,

postmenopausal women) and pooh-poohed my concern about the osteopenia

saying that my low levels were probably due to soda consumption. When I

persisted, he said that if I was really so concerned I could have a bone

resorption urine test to see if there is an on-going drain. Well, yes.

Good idea. I WILL. (I wish my gynecologist, whom I very much like, had

suggested that.) In general, ... doctor no. 3 was very condescending if

I tried to get beyond listening to him showing me computer printouts.

PRESENT. Just got a phone call from Doctor no. 2a saying that she'd

found her copies of my DEXA-scan (which I'd just told her about when

there for the cyst removal) and that it was imperative that I come to

the office immediately so we could begin developing a treatment plan.

Doctor No. 2a is new and young and while I like her very much I really

don't think she knows much about thyroid. Knowing how many of you have

had trouble getting endo's to prescribe ATDs and tests ... I can see

where she would be receptive in the future to reviewing studies and

information that I give her and to working with me when/if I develop

full-blown Grave's. But right now my main interest is PREVENTION and

dealing with the underlying immune problems. My eyes are getting worse

(dryer) and the feet inflammation continues. Doctor No. 3 was very

sceptical that such symptoms could be attributed to thyroid given the

normal thyroid levels and mentioned such lovely diseases as Sjorgren's

(which my only aunt has along with lupus and scleroderma) as more likely

candidates. Where in the world do I go from here?

THANK YOU.

Debra B.