Report from the appointment with my PCP

Sorry for the delay on getting this up- I’ve had some people ask how things went and I meant to get it up last week!

The appointment went well with my primary care physician on Thursday.  Remember, I haven’t seen this woman in 4 years so I wasn’t sure what to expect.  I got there and was the last appointment of the day, so I was pretty tired, which showed when she walked in the door.

As soon as I saw her, I was having hard time composing myself.  I love my PCP.  It’s just too bad I don’t have a reason to see her more often.  She took one look at me and was like, oh you look bad.  I know, I said.

So she asked me what was going on, how Kevin was, and the normal small talk.  Then, I unloaded on her.  Like really unloaded.

She listened and was generally irritated that I wasn’t getting a lot of people taking me seriously here, which she admitted has been a problem for a couple of her other “subclinical” patients.  At one point she said, I’m not sure when this happened but doctors stopped looking at a person and seeing illness- they wait for test results and then decide to treat.  She agreed to take all the blood work I asked for and wrote the recommendation for the doctor in Fredericksburg.

One interesting thing that I found out from meeting with her (over an hour appointment) was that all of the specialists that I have seen have only tested me for one of the Hashimoto’s antibodies.  There are two tests. I have always been given one, which never comes up positive.

That is good and bad.  It would be good if I didn’t have an autoimmune disorder because treatment wouldn’t be so complicated.  It would be bad if the other one comes up positive because Hashimotos basically attacks your thyroid so it would be exponentially harder to treat.  In addition, the likelihood of having another autoimmune disorder is higher.  She elected to do a full panel for other autoimmune disorders, including Lupus and all of that, just in case.  Sigh.

She also put in for the Celiac testing again.  Why not.

Then, she drops the big one on me.  Have I had my thyroid ultrasounded before?  No, I said, I haven’t.  She’s all like, WHAT?  You’ve been to six specialists and no one has done this or an iodine uptake on you before?  That’s inexcusable, if you have a patient suffering like you, she says.

So here is what it is: a small dose of radioactive iodine 123 is given in pill form. Several hours later, the amount of iodine in the bloodstream is measured, often accompanied by an x-ray that views how the iodine concentrates in the thyroid.

Decreased levels of activity can indicate subacute thyroiditis, which is what she says she thinks I have.  We even went back years ago and she had written that down in her notes from when we met in 2005.

I did the blood work this morning, since I had to do a 24 hour urine panel first, which tests the cortisol levels.  I’m hoping to hear from the hospital to do the ultrasound and uptake in the next week or so. 

She agreed that even if my labs come back all normal that there is definitely something wrong with me.  She said after 10 years, I should have had some relief. 

 

 

Prepping for appointments

Over the weekend, I received a package from Dr. Gent in Midlothian.  Thank goodness I’m actually on the waiting list!  It included new patient forms and two items for subclinical thyroid patients.   The first item was a symptom checklist, which yielded a 95% yes response rate from me.  Big surprise.  The other item was a set of instructions on how to take my basal temperature prior to my appointment.  Many integrative doctors follow this method for diagnosing subclinical hypothyroidism, which is also known as Barnes’ Thyroid Test.

The idea with this test is that you chart for 30 days, first thing in the morning.  Normal temperature readings should be 97.8 – 98.2.  If it’s below that, then you likely have a thyroid problem.  I took mine for the first time today and it was 97.68.  Well, that’s interesting.

There is a growing movement and belief that blood tests fail to detect many cases of hypothyroidism. It appears that many individuals have “tissue resistance” to thyroid hormone. Therefore, their body may need more thyroid hormone, even though the amount in their blood is normal (or even on the high side of normal).

So I’ll be charting my temps for the next month in hopes that I will get an appointment with Dr. Gent in October.

Thursday, I have an appointment with my primary care physician to discuss this whole fiasco.  My hope is that she would be willing to treat me.  If not, then I plan to ask for her to run the necessary bloodwork so I can take it to any other doctor, thereby avoiding a wasted appointment.

Most endochronologists will test for TSH, which is the thyroid stimulating hormone.   TSH tells the thyroid gland to release two hormones, T4 and T3. These hormones are released into the bloodstream and travel throughout the body. A lot more T4 is produced than T3. T4 doesn’t do much until it is converted into T3. T3 is what does the ‘magic’, and activates metabolism.  Traditionally, doctors will only test the TSH and T4.  If  these thyroid test results are found to be at “normal” levels, you will most likely be told you don’t have a thyroid problem.  This has been my issue in the past.

As of 2003, the American Association of Clinical Endocrinologists is recommending that the normal range run from 0.3 to 3.0, versus the older range of 0.5 to 5.5. So, according to the new standards, levels above 3.0 are evidence of possible hypothyroidism.  I am curious how many doctors actually use these new levels.  Even worse, you can go to different websites and get different ranges, including Mayo Clinic and other established organizations.

Two websites I really like are Mary Shoman’s thyroid advocacy page and Gina Lee Nolin’s (of Baywatch fame) Facebook page.  Both pages are dedicated to helping people who are struggling with symptoms, poor treatment plans, and lack of medical attention.  I have spent hours looking through them and I can’t tell you how angry it makes me to see that this is a national epidemic, the lack of proper health care and attention to suffering individuals.

I read accounts and pleas from people that sound just like me.

I may be a hypochondriac. I may be looking for an excuse for why I’m 50 pounds heavier than I was 15 years ago.  But I don’t think so.

I truly believe that in my heart of hearts something is wrong.  After 10 years, I know it’s not all in my head.  Taking my temperature this morning may be a bunch of “woo hoo”, but it validated something for me.

So I’m going to be going in on Thursday and asking for the following tests, as recommended by both Mary and Gina’s websites.  Here they are and why:

  1. Free T4 / Free Thyroxine: Free T4 measures the free, unbound thyroxine levels in your bloodstream. Free T4 is typically elevated in hyperthyroidism, and lowered in hypothyroidism. Free or unbound T4 levels represent the level of hormone available for uptake and use by cells. Bound levels represent a circulating hormone that may not all be immediately available, because it is affected by other drugs, illness, and physical changes such as pregnancy. Because the free levels of T4 represent immediately available hormone, free T4 is thought to better reflect the patient’s hormonal status than total T4 (below).
  2. Total T4/Total Thyroxine/Serum Thyroxine: This test measures the total amount of circulating thyroxine in your blood. Thyroxine, a hormone produced by the thyroid, is also known as T4. A high value can indicate hyperthyroidism, a low value can indicate hypothyroidism. Total T4 levels can be elevated due to pregnancy, and other high estrogen states, including use of estrogen replacement or birth control pills.
  3. Total T3/Total Triiodothyronine: Triiodothyronine is the active thyroid hormone, and is also known as T3. Total T3 is typically elevated in hyperthyroidism, and lowered in hypothyroidism.
  4. Free T3 / Free Triiodothyronine: Free T3 measures the free, unbound levels of triiodothyronine in your bloodstream. Free T3 is considered more accurate than Total T3. Free T3 is typically elevated in hyperthyroidism, and lowered in hypothyroidism.
  5. T3 Resin Uptake (T3RU): When done with a T3 and T4, the T3 resin uptake (T3RU) test is sometimes referred to as the T7 test. This test measures the amount of unsaturated binding sites on the transport (binding) hormones. Elevated T3RU is more commonly seen with hyperthyroidism.
  6. Thyroglobulin/Tg: Thyroglobulin (Tg) levels are low or undetectable with normal thyroid function but can by elevated in thyroiditis, Graves’ disease, or thyroid cancer. Monitoring of Tg levels is frequently used to evaluate the effectiveness of treatment for thyroid cancer and to monitor for thyroid cancer recurrence.
  7. Reverse T3: When the body is under stress, instead of converting T4 into T3 – the active form of thyroid hormone – the body conserves energy by making what is known as Reverse T3 (RT3), an inactive form of the T3 hormone. The value of RT3 tests in diagnosis is controversial, as some practitioners believe that the body continues to manufacture RT3 instead of active T3, causing various symptoms that are identified as the so-called “Wilson’s syndrome.”
  8. Thyroid Peroxidase (TPO) Antibodies (TPOAb) / Antithyroid Peroxidase Antibodies: Thyroid Peroxidase (TPO) antibodies, are also known as Antithyroid Peroxidase Antibodies. (In the past, these antibodies were referred to as Antithyroid Microsomal Antibodies or Antimicrosomal Antibodies). These antibodies work against thyroid peroxidase, an enzyme that plays a part in the T4-to-T3 conversion and synthesis process. TPO antibodies can be evidence of tissue destruction, such as Hashimoto’s disease, less commonly, in other forms of thyroiditis such as post-partum thyroiditis. This is the test that I believe I was given 10 years ago at EVMS that the doctor (now gone with my results) told me that I had Hashimoto’s. I remember him saying that my thyroid wasn’t “dead yet” but it may end up that way some day.  Until then, he said, your ranges are normal so you don’t require treatment. It’s estimated that TPO antibodies are detectable in approximately 95 percent of patients with Hashimoto’s thyroiditis.
  9. Thyroglobulin Antibodies / Antithyroglobulin Antibodies: Testing for thyroglobulin antibodies (also called antithyroglobulin antibodies) is common.  Thyroglobulin antibodies are positive in about 60 percent of Hashimoto’s patients.
  10. Thyroid-Stimulating Immunoglobulins (TSI) / TSH Stimulating Antibodies (TSAb): TSH receptor antibodies (TRAb) are seen in most patients with a history of, or who currently have, Graves’ disease. Testing is usually done for a specific type of stimulating TRAb that goes by several different names, including:
    • Thyroid-Stimulating Immunoglobulins (TSI)
    • TSH stimulating antibodies (TSAb)

I am also going to ask for:

    • Iron
    • Ferritin
    • TIBC (Total Iron Binding Capacity)
    • Iron Sat
    • Vit D
    • Vit B12

So there you go.  A lot of blood work is in my future.  If this doctor refuses, then I will have to wait until I can get in to see one of my wait list people.  I hope that is not the case.

Ah, the waiting lists…

A lot has happened in 24 hours.  I’ve been busy.

Local doctor updates:  the Chesapeake doctor won’t accept me as a new patient (see lying never pays) and his entire practice is full.  I have a friend who says she knows someone who will be graduating next year and starting at the practice, so that may be a local option down the road.

But I’m not willing to wait right now.

I called and made an appointment with my primary care for the 19th of this month, just as a precaution.  Maybe I can convince her to do the bloodwork I want.  If not, I can use her as a reference to get with a doctor in Northern Virginia.

So here’s the scoop on doctors around the state.  I scoured the interwebs for top thyroid docs in the state and I found three that accept insurance.

  1. Dr. Peter Gent in Midlothian.  He has a wait list of 6-8 weeks but they are sending me a new patient packet now and have told me to start tracking my basal temperature for a month before coming in.  He is a Doctor of Osteopathy and his website specifically says he treats subclinical hypothyroidism.  Yes, please.  The downside to this practice is that he only sees patients from 8-2 Monday, Tuesday, Wednesday, and Friday.  But the receptionist said I’m 10th in line and seemed really nice.
  2. Dr. Kevin Harrison in Richmond.  He also has a wait list, but the receptionist would not tell me how long it would be.  She thought sometime later on this fall.  He used to be in practice with Dr. Gent before starting up his own deal.  He is also a D.O.  His website has a special section for thyroid disorders that says, “Many patients are suspicious that they suffer from low thyroid yet their lab tests are “normal.” We depend on lab tests, but we also use basal temperatures to assist with the diagnosis and treatment. Most importantly, we evaluate patients by listening to their symptoms and evaluating their response to treatment. We utilize several medicines to treat thyroid disorders including Synthroid, but we also use T3 therapy such as Armour Thryoid“.  I can see that he and Dr. Gent are cut from the same cloth.  I’d be happy to get into see either of them.
  3. Dr. Mark McClanahan in Fredericksburg.  I called and spoke to his receptionist yesterday.  She said that I have to have a referral from my PCP to see him but didn’t say there was a wait list.  If anything, on the 19th I can get that referral and see if he’d take me earlier than the other two.  He is an endocrinologist (MD) but he takes a more holistic approach to his patients, according to reviews I’ve seen on thyroid discussion boards.  That’s a little more of a drive for me, but if it’s my only option I will do it.

Going to Midlothian or Richmond would be about 2.5 hours each way.  Fredericksburg would be a little over 3 hours with no traffic each way, but there is always traffic up in Northern Virginia so it could be more like 4 hours each way.

So I’m off to buy myself a basal thermometer.

 

 

Sometimes, you just have to take the bull by the horns

I’m back!  I know I’ve been pretty absent over the past month.  Truthfully, I’m just tired.

And a lot of other things, but mostly tired.

For those of you who followed when I started my first blog, you will remember when I gained like 20 pounds in 2 months.  I’m sad to say that it seems like that’s the way I’m going again.  I’ve gained almost 15 pounds in 6 weeks.

I know, it’s not normal.  We’ve been down this road before, my friends.

The last time this happened was in 2009 and I went to my primary care physician, like I always did when this happened at 2-3 year intervals.  She referred me to another thyroid doctor who told me “you’re fine, but I’m fascinated that you have such extreme hypothyroid symptoms and don’t range in your test results”.  Thanks, bro.

He convinced me that I was just stressed out and that once I finished my dissertation, I would magically lose the 50 pounds I’d gained in graduate school.  Yes, 50 pounds.

So a few weeks ago when things started to seem strange, I panicked.  Oh, god, please don’t have this start up again.  Then, two weeks ago, I started to have EXTREME ovarian pains.  Great, cysts.  After a week of that, I saw my gyno who said that she definitely thought there was something wrong and that I needed to be seen by someone.  My fingers are so swollen, I can’t put my rings on and off.

My hair is falling out, I get 8 hours of sleep a night but I’m dozing off during the day, I am having brain fog (ask me about the flip flop incident a few weeks ago if I didn’t tell you), I’m cold all of a sudden all the time, my fingers and feet are tingling.  My face is puffing out, the corners of my eyebrows are falling out, my eyes are swollen and baggy.  I have heart palpitations.  My cholesterol is through the roof.

So I decided last week that I needed to find a doctor that may listen to me and believe me that I have a serious problem.  I have spent hours, HOURS, scouring the interwebs for people in Virginia who are forward-thinking doctors.  I am appalled by the message boards on websites that have hundreds of stories of people just like me who suffer without proper treatment.

I may be wrong, but I truly, deeply believe that there is a thyroid issue going on.  I also have two generations of women before me with thyroid issues.

So where do I start?  At the beginning.

I went back to EVMS and called to see if I could get in with the first doctor that I saw who believed I have Hashimoto’s.   This is an autoimmune disease that causes inflammation in your thyroid that leads to hypothyroidism.   Turns out that I went to him 10 YEARS AGO. Ten years, people!  I can’t believe I’ve been dealing with this on and off for 10 years.  No wonder my body is such a mess.

When I asked if he was still there, the receptionist said no.  I knew at that point, I needed to keep going.  I’m hoping to get my records, but that is a long shot.

Since that appointment, I have seen about 6 other doctors about this issue.  All of them say the same thing.  You are fine according to your labs, but you have classic hypothyroid symptoms.

Gee, thanks.

How about this, medical professionals?  How about you actually listen to me and treat my symptoms, rather than acting like I’m a overemotional person who is a hypochondriac?

I understand what comorbidity means in a journal article- I have a PhD and I’ve pulled dozens of research papers about hypothyroidism, including recent papers on how physicians rarely look outside of normal ranges, even though patients could benefit from treatment at low dosages.  I know that in last years national endocrinology  conference, it was determined that natural desiccated thyroid should be considered for patients who cannot convert T4 to T3 using traditional medications like Synthroid.  I know that there is a high rate of incident between polycystic ovarian syndrome and hypothyroidism.  I’m not stupid, I’m not Googling on WebMD, and I’m not misinformed.

What I am is a little mad.

In my search, I’ve scoured message boards for recommendations from people and it’s a lot of the same:

  1. I’m desperate to find a doctor who won’t make me feel worthless when I tell him or her that I don’t think my labs are accurate
  2. Does anyone know of a doctor who will test for T3 and not just the normal TSH panel?
  3. How can I find a doctor who prescribes natural diseccated thyroid?
  4. Why won’t anyone take me seriously?

What the hell, medical community???

So here is what I found.  It is nearly IMPOSSIBLE to find the holy grail endocrinologist who is willing to look outside the box, who is willing to do the unusual tests, who is willing to consider symptoms outside of the “normal” range on the lab tests.  In Virginia, I was able to find less than 12 doctors.  I called three who are within a 4 hour drive from me and two are not accepting any more patients and one wants me to have a referral from my PCP.

The rest are integrative doctors who do not accept insurance.  Am I willing to spend $350 for an office visit and then countless dollars on lab work and followup visits?  Not yet, I’m desperate, but not crazy.  But I’m almost there.

I called a doctor locally who is not an endocrinologist, but gets a lot of props on the interwebs for his bedside manner and willingness to think outside of the box.  He’s not accepting new patients, I’m told.  I lied and said I had a friend refer me.  Now, all of a sudden, they are going to “try” to get me in.  This is the beginning of my criminal life.

I’m now on the waiting list for two doctors in Richmond and Northern Virginia.  It will be a holiday miracle if I can get in before the new year.

After a week of this, I am hitting the wall today.  I’ve made an appointment with my primary care physician on record, whom I haven’t seen since 2009, to go and cry my eyes out and beg for her to try to treat me on her own.

This is my new quest.  I’m determined.

Feel like getting angry about how women are treated with thyroid disorders?  Yes, I said women.  There are men, of course, but go on these boards and take a look.  It’s mostly women who are struggling.

http://hypothyroidmom.com/hypothyroid-mom-top-resources/

You’ll find sick, desperate people who are tired of being tired.  Tired of being dismissed.  Tired of feeling like they have to get a MD themselves to advocate for better treatment.  I’m shocked by the level of expertise these college students, mothers, sisters, wives, and friends have acquired in their own quest for better medical care.

Buckle up, people.  It’s about to get real up in here.

You are about to get a sideline seat in my quest for proper medical care and treatment.