RA – My Feet

I was diagnosed with RA in 1996.  I had 3+ years of hell, then got on Enbrel around October of 1999.  Right before going on Enbrel, I had my feet xrayed.  They were bad. I remember the radiology report saying that one of my toes looked broken.  The base of my 2 littlest toes on both feet had been bad since the 1990s.   Enbrel kept me in pretty good shape from 1999 to late 2005.  In 2006, after I started flaring in December of 2005, I had my feet xrayed again.  The damage was stable and not getting worse, so I stayed on Enbrel.  Well, my flare lasted fairly severely until 2010 and moderately until 2012 when I started Paleo.  Somewhere between 2006 and last week, I sustained quite a bit more damage to my toes. I’m not having any trouble with pain or walking.  My biggest complaint is my little toes on both feet are turning in and I now have (just learned this from the podiatrist this week) tailer’s bunions on both feet.  The bunions are the biggest problem and with toes turning in second.  I was hoping for some sort of brace to wear at night (the toe straightens a good deal when I walk).  I see the PT on the 16th. 

Ever wonder what other people’s reports sound like?  Here ya go:

INDICATION: painful equinus and forefoot evaluation of forefoot due to RA, shifting of toes, effects of RA on joints

COMPARISON: Radiograph dated 4/11/2006

FINDINGS:

Left foot: Compared to the previous examination, the sequela of rheumatoid arthritis in the foot has progressed most notably at the mid tarsal phalangeal joints with there are new both acute and chronic bony erosions at the third metatarsophalangeal joint and fourth metatarsal phalangeal joint. New osseous erosions are also present at the head of the fifth metatarsal. The largest bony erosion along the medial aspect of the fifth metatarsal head is unchanged. There is periarticular osteopenia centered at the metatarsal phalangeal joints and proximal interphalangeal joints of the toes. Mild subluxation at the proximal interphalangeal joint of the third digit. Moderate to severe osteoarthrosis is present in the midfoot most notably at the navicular medial cuneiform articulation. Soft tissues are unremarkable.

Right foot: Similar progression of marginal erosions involving the metatarsal heads and base of the proximal phalanges of all digits. There is mild subluxation at the metatarsophalangeal joint of the fourth and fifth digit. Diffuse there together osteopenia seen in association with early marginal erosions at the interphalangeal joints of the toes. Mild midfoot osteoarthrosis. No soft tissue abnormality.

Impression

IMPRESSION:

Sequela of rheumatoid arthritis with periarticular osteopenia and marginal erosions at the metatarsal phalangeal joints and interphalangeal joints of the toes bilaterally. Findings have progressed when compared to 2006 exam.

Early subluxations at the metatarsophalangeal joints of the toes and interphalangeal joint of the left second digit.

RA- Thyroid Vs. Adrenals

So, if you read my last post, you know I was bitten pretty severely earlier this week. My bite appears to be healing (below is a picture of day 6), although it looks really awful.  It’s been a crazy week.  FOUR doctor visits…. yeah, really.  Only Doc #1 was for the bite.

DSC05852 (2)

Interestingly, as a result of the bite, I think I learned some things about teasing apart thyroid from adrenals.  I thought perhaps both my adrenals and thyroid were doing a bit better, up until the bite.  When I got bit (on the calf, a “lock on” bite that lasted about 20 seconds), I was extremely calm.  I knew there was nothing I could do to stop it or make this student let go, so I stood there and waited.  When it was done, I continued working for over an hour (maybe 2?) until we could get more folks to help, and I could go to the doctor.  By about 30 minutes after the bite, I was shaking, cold, very very irritated, having problems thinking and recalling words, etc…  This had a very familiar feeling.  It felt like I just stepped back in time 2 months to before I started treating my adrenals.  I think my adrenals just took a big whack, as I stood there, as calm as possible during the bite.  Now, I imagine, my cortisol is high again. These are the effects.  I also haven’t had a good night sleep since the bite, and I had been sleeping really well for several weeks.

Doc #2 Endocrinologist (for my thyroid issues):

When my thyroid is off, my RA is off, so it’s something I need to stay on top of.  My thyroid continues to drive me a little crazy. I am now on levothyroxine at 112 mcg (a decrease from 125 mcg) and liothyronine (a T3 supplement, as my body is not converting T4 to T3) at 5 mcg.  They wanted me on 7.5 to 10 mcg, but I just can’t sleep when I take that much.  After 2 1/2 weeks at 7.5, I went back to 5 on my own.

My periods are coming every 20 days, and lasting for 8 of those 20 days.  Thankfully, they’re not real crampy or anything, but they are extremely heavy.  They were up to 26-28 days (my normal is 30) when I was on 125 mcg of levothyroxine.  My skin is super super itchy, my hair is falling out, and I’m constipated.  Ahhh, life is entertaining.  Did I mention that I feel like having my thyroid radiated was my biggest medical mistake in my life?

Now, the good things are, I had been sleeping much better (once back down to 5 mcg on the liothyronine several weeks ago).  I hadn’t been sleeping well in months prior to that.  I had been thinking clearly, not having significant word retrieval issues, not as cold, etc…  I had been thinking these improvements were a result of getting treatment for my thyroid issues, but now I think differently.  These issues all changed within minutes to hours of the bite.  I don’t think my thyroid had anything to do with these improvements. This was adrenal improvement!

I told my endocrinologist (first appointment with my old endo, as I had a different one for 3? visits) about my adrenal salivary test results.  Although she didn’t outright say it, it appeared she thought it to be quackery.  I told her that 3 of the 4 times I was high and 1 was normal.  She told me that I was supposed to be normal/low at night, and that this wasn’t abnormal.  When I told her I was high at night, and the Paleo doc thought this might have to do with my poor sleep, she seemed surprised.  She then wanted to see the results. Now I have to find where I put that paper!

Test results: T4 middle of average range.  T3 low end of average.  TSH low end of average. I’m going to slightly increase my T4 (levothyroxine) 2 days a week to see if that helps my periods, itchiness, hair loss, and constipation.

Oh, and she saw my bite and thought I should be on antibiotics, which I was not prescribed.  She was a bit shocked.  That unnerved me a bit.

Doc #3 The Podiatrist:

I don’t think I’ve ever seen a podiatrist for my RA, but my rheumatologist recommended seeing one, as my 2 little toes are turning inward.  I wanted to get some splints made to hold them in place at night, and he thought this would be the place to go.  Apparently not, and she was not real sure where to get them made either, so I’m going back to physical therapy to get some exercises to do with them and maybe custom splints if the can.  She also wants me to get orthotics for my shoes, although I have to admit that I am very hesitant to do this.  My feet do not bother me when I walk, and we both agreed they look really good for 19 years of RA.  She seems to think my toes are curling a bit.  I think it’s just one toe, and it’s been like that since 1998, and I don’t see much reason to change things now.  We’ll see.  I’ve actually been thinking about trying more minimalist shoes (without much sole on the bottom).

Well, then she ordered x rays, and admittedly they came back quite a bit worse than my last ones in 2006.  I was a bit surprised.  My littlest 2 toes have had a ton of permanent damage since the late 1990s.  That was not surprising.  Now it appears my middle toe does too.  I was not aware of this, and it doesn’t cause me pain to walk.  When she pushed on them, I did note some mild-moderate pain.  There are also some other joints in the report that I can’t even figure out where they are that are having some issues.  I really want to know when that damage occurred.  I was in a horrible flare from Dec. 2005 until 2012.  The last xrays were in 2006 (not sure of the month) and showed no further damage than x rays in 1999.  The current x rays said there was no notable soft tissue damage.  Does that mean my feet are not currently flaring, and this is old damage?  I’m confused.  I will take the report to my PT and try to get a better understanding.  She’s good, and always takes the time with me.

Doc #4 The Paleo Physician’s Assistant (for my adrenal/RA/thyroid issues):

I’m doing better. That’s the cool thing.  I’ve implemented most (but not yet all) of the things she asked me to do.  She asked me to do then one at a time, and I’ve had a few hiccups along the way, so I think that’s ok.  I am now on 600 mg magnesium glycinate, 1,000 IU Vitamin D (she’d like me on 4,000, but I have some worries), a daily B Complex with methylfolate, lots of Vitamin C, going higher carb while I try AIP again.  This time, I am eliminating 1 food at a time rather than all at once.  I removed eggs, and I think that helped a lot with my mental clarity (planning, word recall, etc…).  I cut back on nuts, but haven’t eliminated them yet.  Phosphatidylserine is something I’ve tried twice, but made me feel intensely hungry, barfy, and dizzy.  I will try it again, but that might be a no-go.  There is one more herbal supplement she wants me to try.  Plus more exercise and meditation.  Yeah, I’m just thinking “Calgon, take me away!”

Did I mention that a couple of months ago (around June or July) I got “addicted” to the ibuprofen again?  I wasn’t able to sleep without it pain-wise, and I know it long-term makes my RA worse.  Then I was up to 3-4 a day in early August or so.  Now I am down to 3-4 a week, which is a huge improvement.  Since the bite, I am feeling like I want to take it more.  My RA seems to be a little worse since the bite, but I am trying to stick to my 3-4 per week.  Hopefully my system will calm down again, and all will be well again.

She also looked at my bite, asked me if I was on antibiotics, and was surprised that I wasn’t.  She said that used to be the standard of care.  Again, unnerving.

Something Else I Learned:

The workman’s comp doctor had asked me if I ever had the Hep B vaccine.  I had, as my last job mandated it, back in the late 1990s.  It was a 3 shot series.  The doc called me back after my test results.  They tested me for Hep A, B, and C, as well as HIV.  All were negative, however, I didn’t have antibodies to Hep B, meaning the vaccine didn’t work.  It’s supposed to work for life.  Talking to some of these docs, it is likely that I was too immunosuppressed for my body to have the appropriate reaction to the vaccines.  So now the question is whether to get the vaccines again, get a booster, or give up as maybe it won’t do anything anyway.  This brings into question whether any of these vaccines have worked for me in the past (flu, pneumonia, whooping cough, tetanus, etc…)

I guess that’s about it for the updates. I hope you all are well.

Life – It’s Been A While Since I Posted.

Oh, I hope I’m not about to alienate all of my followers!!

This is one of those crazy posts that you make after a long month of work and 2 rum/water/juice/vitamin C combinations.  Oh yeah, it’s that crazy!  I’m implementing my Paleo doctor’s recommendation of vitamin C (liquid form) into an after work drink.  My drink: 3/4 water, 1/4 mango juice, and oh to make it above 100%, we’ll call it a splash of coconut rum and 1/2 tsp of vitamin C.  It’s been a rough few days.

I have to be honest that I try not to let my private life interfere too much with my website, as I’m a very opinionated person, and I don’t want to alienate anybody looking for help with RA.  Call it a rough week, the drink, or the exhaustion speaking, but I thought I would air it all for the world to see…. this one time.  Please forgive me if you share different views.

I suppose it’s not hard to figure out from previous posts that I lean toward that hippie side of life with worm composting and solar panels.  I realize more and more every day how privileged I am in this world that I have the opportunity to get my medications for RA, choose more expensive foods that are healing my body, work part time, and still enjoy a somewhat comfortable middle class life style.  I can’t tell you how lucky I feel to have married a man who supports me in my endeavors and acknowledges, without (much?) judgement, my weaknesses.

My new favorite word (besides “snarky” which is totally fun to say) is “privilege.” I see more and more every day how lucky I am in this life, and how others aren’t always able to meet life’s challenges in the same way. 

I’m a speech-language pathologist (SLP).  I’ve been working with kids who have profound autism for over 18 years.  I work with challenging kids in a Kinder – 6th grade program.  A typical kid coming into kindergarten in our program would not have communication skills in any basic way, not be potty trained, and not interpret the world in a way that would make sense to most people.  Most of our kids come in with some form of aggression as a way to get what they want.  I feel like this job is my calling.  I feel good at it.  Where most SLPs in this position leave after 1-2 years, I’ve been in my current job for over 15 years.  The program I’ve helped to set up structures everything very clearly for our kids.  It’s not perfect, but I’ve had the joy of having kids say their first meaningful words in kindergarten.  I’ve been able to take children who are very aggressive (as this is typically the only way they know how to get their needs met) and get them organized, calm, and communicating.  It’s not every kid.  I don’t have a magic pill, just patience, persistence, and knowledge.  But it’s a lot of kids.  It’s enough kids to keep me going back year after year.  I had the awesome experience this last spring to hear one of my former students, initially nonverbal, who ripped all of the outlet covers off the walls the first day I worked with him, give the commencement speech at this high school graduation.  His dad nominated me for one of those “everyday hero” awards on the radio.  It doesn’t get much better than that.

For about 10 years now, I’ve been working part-time.  Initially, this started as somewhat of a nervous breakdown.  My full time job was stressful, working 2 1/2 days a week in the autism world, and 2 1/2 days a week serving moderate communication needs in a high poverty school.  It worked for 4 years until it didn’t.  In one school year, I sold my house, was “homeless” (aka living with friends), got married (while “homeless”), bought a new house, had friends live with us temporarily (waiting for their house to be built), had my in-laws (very nice folks) temporarily live with us, was in a major car accident with my husband in which he broke several ribs and transverse processes of his spine, and I had to have the upper left quadrant of my face reconstructed, the ensuing medical bill nightmare, the death of one of my students in a house fire that he started, the death of my grandmother, and a miscarriage.  Quite literally, I cracked somewhere around the death of my student.  With an extremely understanding husband, and the thought that it would be temporary, I went part-time at work, working only in the autism program.

Well, then I got pregnant, had my son, and the ensuing RA nightmare that I didn’t really ever fully recover from, although certainly became as “normal as possible” 7 years later after starting Paleo.  I’m still working part-time.

The thought has come to me that I should go back to work full time.  We could use the money.  We live cheap (no cable, no cell phones, old cars, etc…) to allow me to stay half-time.  Unfortunately, the “old cars” caught up to us, and in the past 3 years, both of our vehicles had to be replaced, which included dreaded loans. 

I love what I do.  I feel called to it.  I’ve been able to see many miracles that I don’t think happen all that often in the autism world.  I feel like I’ve had a big part in those miracles.  Again, not for every kid (oh, how I wish), but enough. 

Here’s my dilemma.  I cannot work in autism full time.  I went to physical therapy for 2 years, on my own (thankfully heavily discounted) dime, to be able to continue doing this job.  It’s physically demanding.  I am exhausted at the end of every school day.  I probably change 30 diapers a week on kids who sometimes beat on me while doing so.  I need to lift kids, some kids who are heavier than me.  When kids are struggling, or having medication changes, or not sleeping, or dealing with changes in their lives, I put my body between theirs and peers to protect.  Although it’s not typical, I get hit, bit, scratched, have furniture thrown at me, head butted, punched, etc…  And every day, I do my best to hold no grudges, go back and demand a student’s best efforts, try to not be afraid, and to know and understand that my kids see the world differently.  I try to make my demands simple, clear, organized, and rewarding in a fashion that my kids understand.  Yes, I know you can do this simple task. Yes I know you’re used to getting your own way, sometimes by hurting others.  Yes, I know this is not you, but your interpretation of this world.  Yes, you need to do this task to learn and grow and function in this chaotic world you struggle to understand.  Yes, I will sit and wait until you are ready, even if that means you are mad, even if that means you scream and hit, even if that means you don’t want to, even if it takes two hours, because I believe in you, and I know you can.  I know that if you start doing these simple things, it will lead to harder things.  It will lead to learning, and it will lead to life making more sense to you.  I will wait until you are ready to show the world what you know.  I will wait.

Jump up a level to the world of education, to the politics, to the funding issues, to real life.  Yeah, here’s the part I’m probably going to piss some people off.  It doesn’t take much to realize that education is being bashed.  I am being held to the standards of “No Child Left Behind” and “teacher accountability” and everything else.  My pay has been hijacked by people who know nothing about what I do.  They say because my kids aren’t reading and writing and doing math at grade level that I am ineffective.  Working with this challenging population is suicidal to my career and livelihood.  Yes, I see miracles, and yes, I have some parents (certainly not all) who think I am the best thing that ever happened to their child.  But none of that matters.  According to the news, and the crazies in charge of education, I am lazy.  My knowledge and training mean nothing.  A good politically designed curriculum and an uncertified minimum wage teacher could do just as well.  And they are pushing hard for that.  Very hard.  And through billions of dollars in propaganda, they’re winning that battle, both politically and socially.

I still cannot believe I have done this.  I am not this type of person, or so I thought.  Hmm, but I guess I am.  I’ve become a political activist.  I am the crazy lady that approaches you at your kid’s soccer game about signing a petition to get something on the ballot to increase education funding.  I have protested.  I have taken my son out of school to teach him about appropriate civil disobedience.  He has protested.  He has marched in an Occupy movement with me and his dad, carrying a sign in support of his school.  Did I mention that my state typically falls between 45 – 50th in per pupil funding of the 50 states?  Did I mention the district where I live (and he goes to school) is ranked 172 of 178 districts in the state for per-pupil funding?  Although I work in a district outside of where I live, when the recession hit, I took a pay cut for 3 years starting in 2008.  I still have not “made up” that loss.  Of course, some will say I got a raise when they reinstated my 2007 pay. Hmmm.

So in the midst of all of this, I had a really really awful day yesterday.  Our kids, according to our district, don’t deserve adequate teacher and para-educator coverage when somebody is ill or has a training.  Well, they will hire a substitute for the teacher, but they pay so little, that nobody shows up, as in this case.  Para-educators, forget it.  Make do.  Figure it out, they say.  Yesterday, that meant that we were short 3 of 6 adults in our classroom (wow, the germs have hit early this year, and it never fails the kids get sick one week, and the adults the next).  As a result, we couldn’t maintain our structures and routines.  As a result, the kids had a confusing day. Confusion is never good.  It leads to panic and behaviors kids wouldn’t demonstrate in their typical structured environment.  In addition to that, we had a student who has been having a really hard time both at home and school lately.  Long story short, I got bit, badly, as in I had to leave and go see a doctor.  In 18 years, that’s never happened to me before.

Deep down inside my leg, it hurts terribly, but on the surface, I have about a 6 inch round circle that I can’t feel at all.  Nearly my whole calf is swollen.  Luckily, most of my flesh is still there.

I complain about my job a lot, the cowardice that is politics, the money grubbers out to make money off of for-profit charters and privatizing, the folks who want to pretend that my students…. my kids…. don’t exist, the people who pretend that complex problems have simple answers, the people who take support away from my students, the people who think me ineffective.  And you know what?  For 18 years, it’s been a complaint, it’s been a source of my political activism, a source of my defiance in the face of it all.  But then yesterday happened, and even though I was able to go in today and not hold a grudge, to show my best face, and to love this child through her troubles, I am angry.  This political system is putting my kids in danger.  I am liable for the safety of these kids, staff or no staff.  It is putting my career in danger.  It is putting my physical health in danger.  And I can’t begin to tell you how much I love this work, but for the first time, I think I am seriously questioning if this is worth it.  And I know that’s what “they” want.  They want me to quit, for the public education system to be starved into failure, because we can’t afford to hire staff, because we can’t afford substitutes, because we can’t afford to support kids with special needs, because we can’t even afford enough staff to keep kids safe.

Will this setback become further political defiance for me?  Will I give up?  I don’t know yet. Can I go back full time in this climate?  Certainly not.

And then we get back to privilege.  You know what?  My kids were not born with privilege.  My families struggle immensely under the struggles of autism, the costs associated with therapies, the marital strains, the frequent health problems that co-occur with autism.  They need somebody to care.  They need good teachers, SLPs, and community members to stand up for them. If I don’t continue to do this work, who will?  Because people leave in droves every year, and each year, new and less experienced people come in, burn out immediately, and leave.  And not just in autism, but in any high needs population.  Does anybody care?  Is anybody listening?  Can this message be heard above the propaganda?  Does anybody care that our “great society” is not adequately educating our kids (and not just in the world of autism)?

And I’ve got my health challenges to look out for.  Do I give up my  ability to get my medications? (yeah, even when I got health insurance through my work, the out of pocket costs and work and attorneys needed to get things covered were out of this world… by the way, attorneys are very helpful and not necessarily as expensive as you think, especially compared to a big medical bill).  Do I continue on this increased cost of living without any consequential pay raise?  What happens to me when I can’t afford to take care of my health?

I think I need to be done ranting now.  Should I even post this?  <sigh>

Love to you all, and I hope that your lives are secure, and you can get the medications and therapies you need, and you’re able to manage your lives and health with dignity.  I hope that you are loved and supported in this challenging place we call life.

 

 

 

The Paleo Doc – Appointment Two

I had my second appointment with the Paleo doc (technically a physician’s assistant).  She went over my adrenal test results.  I’m in Stage 1 Adrenal Fatigue, which turns out to not be fatigue at all.  In the early stages, your adrenals are cranking out stuff big time.  At 2 of my 4 measurements, I was very high, at one I was moderately high, and 1 I was normal.  Interestingly, the time of day I tend to be most tuckered out (3:00 – 5:00 PM) I have NORMAL cortisol levels.  That can’t be good, but it also probably explains why I’m not sleeping well.

The Plan:

  • Supplements (magnesium, vitamin d, vitamin b complex, vitamin c)
  • Gaia herbs
  • Phosphatidylserine
  • Go back to AIP Paleo, but make sure I’m getting plenty of carbs
  • Mild/moderate exercise
  • Meditate at least 10 minutes per day

She wants me to add these things in one at a time with the Gaia herbs last as they are most likely to cause trouble with autoimmune conditions.  She wants to see me again in 2 months to see how I’m doing.  I’m going on vacation tomorrow, so AIP will have to wait until I get back.  I think I will try to implement magnesium, vitamin d (both of which I’ve used off an on before) and the b complex while on vacation, then get the others when I get home.

Hope everybody is having a stellar summer.  Oh hey, did I mention I got a message from Everyday Health and they want to do a story on Paleo?  Ha!  We’ll see if it happens.  Very exciting!  Take care!

 

RA – Thyroid Update

Ok, for those of you following my craziness, this may be repetitive.  For those who lurk once in a while, here’s the scoop. For 3 years, I had my RA in remission with use of exercise, Paleo, and decreasing medications (down to only 1/2 dose Enbrel).  For the last 18 months or so, however, I’ve been having thyroid issues.  I have Grave’s Disease (hyperthyroid), and my thyroid was radiated and killed off in 2007.  I will have to take supplements for the rest of my life because of this.  Up until April, I was taking levothyroxine or Synthroid (brand name) only for this.

Despite my thyroid issues, I was having the best inflammation markers ever (on 2/20/14: 0.7 CRP with 0 – 1.0 normal and 17 SED with 0 – 20 normal).  Still, I felt like my RA wasn’t as happy.  After 12 months of thyroid issues, my thyroid got really unhappy, and my T3 dropped significantly.  Now, if I understand this correctly, my levothyroxine/Synthroid is predominantly a T4 medication.  My body’s tissues will convert T4 to T3, which is the more active form that makes me feel normal.  For whatever reason, my body was not converting T4 to T3.  My symptoms?  Heavy long periods, insomnia, dry skin, weight gain, fatigue, feeling really cold all the time, my RA got more active (no longer in remission and sometimes inflammation markers elevated), etc…  I went back to the endocrinologist, who I hadn’t seen in several years.  Here’s the story with the numbers.

From the rheumatologist on 12/30/14:

  • TSH 0.81 (0.34 – 5.60)
  • TOTAL T3 32 (60 – 181)
  • FREE T4 1.73 (0.89 – 1.76)
  • CRP 17.3 (0 – 10) inflammation marker
  • SED 31 (0 – 20) inflammation marker

I hadn’t seen all of these results, but was told them over the phone.  I thought I only had 1 elevated inflammation marker, but they both were elevated.  I decided I needed to go back to the endocrinologist.  The endo started me on a T3 supplement.

From the rheumatologist and endocrinologist on 3/26/15:

  • TSH 0.22 (0.34 – 5.60)
  • TOTAL T3 54 (60 – 181)
  • FREE T4 1.66 (0.89 – 1.76)
  • CRP 9.8 (0 – 10) inflammation marker
  • SED 27 (0 – 20) inflammation marker

As a result, we decreased my T4 (levothyroxine/Synthroid) medication, as my TSH got too low.  TSH gets lower when your body thinks it has too much thyroid hormone, yet that’s not what the tests show.  Go figure.

Part of the test results from the paleo doc on 5/21/2015.  Please note test variations in what is normal:

  • T3 Uptake 41 (30 – 39)
  • Thyroid Oeroxidase Autoab 2.2 (0.0 – 9.0)
  • Reverse T3 22.4 (9.0 – 27.0)
  • CRP 13.1 (< 3.01) inflammation marker
  • SED 19 (1 – 20) inflammation marker

Results from 6/15/15 from the endocrinologist:

  • TSH 0.41 (0.34 – 5.60)
  • TOTAL T3 62 (60 – 181)
  • FREE T4 1.49 (0.89 – 1.76)

Changes from today are to lower T4 (levothyroxine/Synthroid) another level and increase T3. I am still very symptomatic of low T3, but interestingly having a couple of high thyroid symptoms too.  I’m hoping to get my T3 a little more solidly in the normal range to see if I feel better.  My T4 has room to come down still, and my T3 room to go up.  I am also having an ultrasound done of my thyroid as I have a small lump in my neck.  I’m hoping it’s nothing, but it’s been going on for about 3 months, so it’ll be good to have it checked out.  After feeling my neck, the doc said he didn’t feel like I had any thyroid tissue left, but he couldn’t account for this lump, and he didn’t feel a lymph node there, despite thinking that’s probable.

I just got access to most (maybe all) of my records from my rheumy and endo back to 2011.  It’s interesting to see the results on paper, as typically I get a phone report.  I’m realizing that the numbers are not always accurately dictated over the phone, and some numbers were not what I thought I was told (unclear if it was not given to me correctly or if I wrote them down incorrectly).  It appears that the SED rate is the same test between both the hospital (rheumy and endo are in the same hospital) and paleo doc (different facility).  I am encouraged that the SED rate seems to be coming down as my T3 goes back up.  With the CRP, it’s hard to tell.  It seems all over the place, but part of that seems to be that it’s a different test.

I’m doing my adrenal function test today.  I will FedEx it tomorrow and should have results in a couple of weeks.  Maybe that will tell me something.  The endo did mention that it’s possible that I have developed Hashimoto’s Thyroid Disease in addition to Grave’s, making me both hyper and hypo despite not having a thyroid anymore.  My dad, brother, uncle, and grandmother all have Hashimoto’s, so this would make sense, although part of me likes to think I’d be invincible to such things due to following Paleo.  It’s possible it’s been there a long time, as my thyroid numbers have historically been really hard to control. I’m thinking that might be what the paleo doc is looking into also. I’m feeling a lot more hopeful and like another remission could be just a few months away.

Paleo – Blood Test Results from the Paleo Doc

I got the results of my blood work, but not of my adrenal test, as I’ve had a mild cold and was told to do the test on an average day, not a day when real lazy or real stressed.  I would think having a cold would be a stress on my body, so I’m waiting to get the most accurate results.

Because it would take forever to type in all of these results, I am going to summarize on some.  My comprehensive Metabolic Panel was all normal minus some slightly high protein/globulin. So, calcium, glucose, bilirubin, etc…all within range.

I had an estimated GFR (not sure I ever had that before). It appears to be a measure of kidney failure.  My level was 107.  It says <60 for 3 months is chronic kidney disease and <15 is kidney failure, so I guess that looks good.

Cholesterol profile.  See this post for previous cholesterol comparisons.

  • Total 157 (<200 is good)
  • Triglycerides 57 (under 150 is good according to the print out, but there’s debate that 150 is way too high)
  • HDL 68 (40-59 is normal.  HDL is the “good cholesterol” so I am not concerned at this high number right now).
  • LDL 78 (<100 is normal)
  • VLDL 11 (no range given, but last test said 7-32 was normal, but not sure if units are the same.  New test does not give unit of measurement.)

Vitamin D, 25 hydroxy 19 (30-150 is normal. This has been an ongoing problem for me.  The best I’ve ever had, even with supplementation is 26).

Inflammation (previous comparisons here):

Sedimentation rate 19 (1-20 is normal.  This is an inflammation marker and has been at the high end of normal the last 3 times it’s been tested).

CRP 13.1 (<3.01 is normal.  This is another inflammation marker, and it has been high, although not this high, since December.  This is concerning, and I think it has to do with my thyroid being off.  When this number is above 3.00, it puts you at greater cardiac risk.  CRP is not just a measure of RA inflammation, but a level of body inflammation.  I knew it would be high, but it had been normal for 3 years on Paleo.  I REALLY want to get this down.)

Sugar:

HgB A1c 5.0 (normal is 4.0 – 5.6. My understanding is that this is a diabetes risk factor.  It measures the amount of sugar that has been stuck to your red blood cells over their lifetime. My understanding is that this number can be inflated in Paleo folks, as their blood cells typically live much longer than people following the standard American diet. I was happy to see it in the range. Chris Kresser has a good post about it here.  

My estimated average blood glucose was 97.

My fasting blood glucose was 80 (70-99 is normal).

Insulin 4 (2-27 is normal.  I’m not sure if I ever had this done before, but from everything I read, it seems like 4 is awesome.)

All of my white blood cells, red blood cells, hemoglobin, platelets and stuff (including everything that ended in “phils” or “cytes” were all within normal ranges.

Thyroid:

Ok, now here’s where things get interesting.  She didn’t do a T3, T4, or TSH since the endocrinologist is doing those next week.  She did order some additional tests that I don’t think the endocrinologist ever ran before.  I’ve been trying to read up on the meaning, as I don’t go back to the Paleo doc until after I’ve got adrenal results and after I see the endocrinologist.

Reverse T3 22.4 (9.0 – 27.0 is the normal range.  From what I’ve been reading online, having a T3 at the high end of normal can be indicative of some issues, possibly related to adrenal function).

Thyroid Peroxidase Autoab 2.2 (0.0 – 9.0 is normal.  I have big questions on this, and I can’t seem to dig up any answers.  I think this is a measure of the antibodies to my thyroid.  Here’s the kicker.  My thyroid was radiated and killed off.  Is this test still valid? I am having some mild swelling in my neck, which I am concerned is a goiter forming, and I have a lot of inflammation around my eyes, which is supposedly from thyroid antibodies.  Is 2.2 really high for a dead thyroid?  If it could still be the same, this seems really low for the symptoms I’m having.)

T3 Uptake 41.0 (30-39 is normal.  So, this is high, yet my T3 is really low.  What does that mean?  Could it mean my adrenals are toast?)

Urine:

My urine looked pretty good.  Glucose, blood, nitrite, and all that good stuff was negative.  I did have ketones in my urine, but I’m not surprised by that.  I need to learn more about it, but I think that’s normal if you’re not eating tons of carbs and staying somewhat ketogenic.  I’ve never measured for ketosis, but lots of Paleo folks do.  My limited understanding is that you’re fat burning and not sugar burning, and most of your body preferentially burns fat. Dr. Terry Wahls talks about it here.  I will ask further details about it at my next appointment.  My urine pH was 7.0 (5.0 to 8.0 is normal).

Ok that’s about it!  Hope it helps somebody.  I really want to fix this inflammation thing, which I really think is being caused by my thyroid problem, but the thyroid problem might be caused by an adrenal problem…. something I don’t think my endocrinologist will tackle.  More to come when I know it!

 

 

 

Paleo – The Doc Who Speaks Paleoenglish

Well, I finally did it!  I went to a Paleo doctor. Well, in this case, she was a physician’s assistant.  It doesn’t matter to me.  I think this has potential to be life changing good.  The coolest thing ever was just speaking to a member of the medical establishment who spoke Paleoenglish.  I could understand her.  She could understand me.  I didn’t have to explain my diet to her (although I did take a list of foods I eat and avoid).  It was just cool.

Here’s the bummer part.  I had to go in a fasted state, which also meant no morning medications.  I’ve been taking a medication for low T3 (for some reason my body is not converting T4 to T3, and this has caused some major symptoms like long heavy periods, severe word retrieval problems, weight gain, poor sleep, fatigue, etc…)  Low T3 was the main reason for my visit.  Anyway, the T3 med is apparently the only way I function in the morning now.  I didn’t take it until after the appointment and EEEKS!  By the time I got to the doc’s office (90 minutes away for a 9:30 appointment), I was almost crying (for reasons I don’t know).  My brain was going 100 MPH, but I couldn’t pull up the words I wanted, so I was talking in circles a lot.  I’m sure I came across as a bit nutty. That’s ok.

Lots of tests… some new thyroid ones that I don’t think were done before (reverse T3, thyroid antibodies, A1C, insulin) and some old ones for inflammation and such.  I also have some scheduled by the endocrinologist in 2 weeks, so there will be other test results coming in too.

She recommended a thyroid scan.  If the endo doesn’t order one on the next visit, then she will.

She asked me if I had ever heard of or tried low dose Naltrexone (I heard of it, haven’t tried it).  She asked if I ever had a stool culture done (nope, despite having some extreme bowel issues about 5 years ago).  She asked me if I ever had my adrenal function tested (I hadn’t, and I brought home a kit to do so).

So, we’re starting with some blood work, a urine sample, and adrenal function.  No changes to what I’m doing yet.  She did mention trying AIP again, but when I mentioned that that was the first thing I tried when I started not feeling well, and it made me worse, we cancelled that plan for now.

I hope this post make sense.  The lack of T3 is still messing with my brain a bit, and I’m finding it hard to think and type.  More to come, I’m sure!

RA – Paleo Doctor?

So, for well over a year I’ve been thinking about seeing a functional medicine practitioner.  The one I found last fall looked great and was all about Paleo, but then she raised her rates to over $800 just for the first visit (no testing, as I’m sure would come up, was included in that price).  I put the whole thing on hold for a while.

In the meantime, my thyroid (specifically T3) has gone all crazy, which seems to have made my RA more active, and one of my two inflammation markers has been slightly elevated for the first time since going Paleo 3 years ago.  Or is it that my inflammation has gone crazy and made my T3 nutso? The endocrinologist thinks it’s the latter, but then she also said she has no idea why this is happening or how to fix it other than to add a T3 medication.  Ugh.  I’ve been feeling like my thyroid was off for well over a year, but the inflammation marker only went up 4 months ago.  I don’t know.  Maybe it doesn’t matter.

Did I ever mention that my husband has a biology degree from Johns Hopkins?  Although he decided to not go into medicine, he’s retained all that knowledge well, and is probably the most intelligent well-educated person I know, brilliant, in fact.  And he’s not a fan of alternative medicine.  Double that when insurance won’t cover it.  Still, I highly value his opinion, and he has seen what Paleo has done for me (and him), and he can’t argue that (and doesn’t).  When I bring these alternative things up, he’s much more supportive of them than before we went Paleo.  He’s still not totally on board though.

So I’ve decided that I really want to pursue the functional medicine piece.  My understanding is that they look at you much more as a total, not as a list of diseases.  Let’s face it.  Modern medicine sees me as a list of diseases, and it’s easily understood when I say that I have or have had a primary care doctor, an optometrist, opthamologist, dentist, oral surgeon, allergist, occupational therapist, certified hand therapist (yeah, they’re different than an OT), physical therapist, hand surgeon (he probably had a more sophisticated name than that, but I’ve forgotten), orthopedist (different than the hand surgeon, but same clinic), dermatologist, gastroenterologist, podiatrist, endocrinologist, and oh yeah, rheumatologist. Wow.  That’s 16. That’s embarrassing.  I didn’t even include things like pediatrician, cancer specialist (wow, that was an overblown drama as a kid…. no I didn’t have it <phew>), ER docs (3 of those I think… anaphylactic shock, miscarriage, and liver failure), boob squish technicians,  Xray technicians, radiologists, MRI technicians, CT technician, ultrasound technicians, OB-GYN etc…  OMG, this is mortifying when I list it all out.  This is seriously upsetting me! 

Ok, going back to my first list of 16, the ONLY ones that don’t necessarily relate to inflammation (for me) are my primary care physician and optometrist.  I NEED AN INFLAMMATION DOCTOR.  You can’t tell me that my gum inflammation isn’t related to my RA and Grave’s Disease and Thyroid Eye Disease and Asthma and Allergies, and weird freaky rashes, and (twice) a complete inability to poop for more than 30 days!  Why can’t all of these doctors get together and help me decrease my inflammation?  I strongly believe (and there’s certainly lots of scientific data to support) that all of this inflammation is related.  Why don’t all of these doctors of inflammation get together and have a little chat?  Because they don’t, and to think otherwise is insanity.  Really, there’s no good reason.

Last week, I called and had a free 15 minute phone consult with a registered dietician/functional medicine practitioner/Chinese medicine expert. Although she said a lot of good things (she’s heavy into food sensitivity testing), I decided to sit on the decision for a week, as I just wasn’t quite sure she was the one worthy of all of my out-of-pocket expenses.  By this week, I was less excited, as I want somebody more into Paleo expertise (she was neutral about it), into more than just food sensitivity (although I do think this could be a help, it’s not a primary focus for me), more into neurotransmitter status, and more knowledgeable about nutritional deficiencies. 

So, I went back to Google and started looking again.  I hadn’t looked at the Paleo Physicians Network recently (yeah, isn’t that cool?)  Lo and behold, there was a medical doctor with Paleo expertise (he was into Paleo before it was called Paleo). He also does functional medicine.  He had an online video talking about several things I want to learn more about.  He’s hired a Paleo Nutritionist to work in his clinic.  I made an appointment and go in 2 weeks.  And my health insurance just might cover it. I hope.  We’ll see.  Think happy thoughts, as I need to start getting on track again.  Despite modern medicine’s best efforts, I’m not getting there.  I still think Paleo is the right path, but I need some tweaks.

Going Solar

Ok, yeah, this is supposed to be a blog about rheumatoid arthritis and Paleo. Since I’ve gone Paleo though, I’ve realized how challenging it is to get good healthy food and how our planet is in such a polluted state.  Our house is in a town that is surrounded by north-south running railroad tracks. There is one set of tracks 2 miles east of us, and another set 2 miles west of us.  On the east set of tracks, there are mile+ long trains filled with coal that run south to the coal burning power plant ALL THE TIME.  I see them almost every time I am on that side of town.  It’s depressing to think about all of that air pollution.  Quite honestly, all of the pollution weights heaving on my mind (driving my car, heating my house, buying a new appliance).  There’s only so much I can control though, so I can only bite off so many things at a time.  Here is my latest chomp.

We went solar.  It’s something I’ve been wanting to do for years, but it’s been unaffordable until now.  My local co-op power company does not allow a program for leasing solar panels.  To hook them up to the grid, you have to be the owner of the panels.  Thankfully, after many years, a solar company came up with a plan.  It’s still expensive in a way, but in the long run I think we’ll break even or come out slightly ahead.

6 panels on the front of the house, facing east.

6 panels on the front of the house, facing east.

 

24 panels on the back of the house, facing west.

This is 24 panels on the back of the house, facing west (from our neighbor’s porch).

We bought a 7.65 kWh system. It was very expensive (think about the price of a car).  The solar company financed us by giving us a 30 year loan, similar to a mortgage.  We pay our monthly electric bill (starting at the same rate we normally pay to the electric company) to the solar company, and they use that money to pay off our solar loan.  They increase the electricity rates slightly over time (just like the electric company does) to make sure the loan gets paid off within 30 years.  Now, the federal government is offering tax rebates until the end of 2016, and we hope to get almost 1/3rd of the cost of our panels back in our 2015 taxes (this is dependent on how much tax you pay the feds.  You can’t get back more than you pay into federal taxes).  We will sign that money over to the solar company, and that will drastically drop the amount of our loan.  We hope to be able to stay ahead of the loan and perhaps get it paid off in about 5-6 years.  If we can’t, we’ll stick with the 30 year plan, and pay it just like our normal electric bill.

We are NOT off-grid.  We do not have batteries.  We are staying grid-tied.  We still must pay a monthly fee, a fee we’ve always had to pay of $13, to stay connected to the grid.  We feed into the grid, and the electric company has to pay us for any excess we produce that we don’t use.  They pay us at wholesale electric rate (I think 4.9 cents per kWh), not at the price we pay for electricity (10.9 cents per kWh).  The solar company guarantees a certain solar output each year for 30 years.  If we fall below, they pay us the difference at the 10.9 cents/kWh rate.  They also insure the panels against damage for 30 years. Not a bad deal.

Where we live is one of the sunniest places in the country.  Well, it was until we got our panels hooked up.  We haven’t had a full-sun day in over a week since.  I won’t complain though, as April is too early to have wildfires, and we’ve already had several.

So, keeping in mind that it’s been pretty cloudy and rainy since we got this up and going, you can check out our solar production online, if you’d like.  We’re getting rather addicted to watching how much energy we’re producing.  Has anybody else taken the solar plunge?

Rheumatoid Arthritis – An Experiment in Fasting

So, I had a weird thing happen yesterday.  I had the most exhausting day at work, came home, took off my shoes, and felt like I had a splinter on the bottom of my right big toe.  I couldn’t find anything though, so I just went on with my evening.  A few hours later, my whole right leg (foot, angle, knee) was in extreme pain, and my foot was very very swollen.  I could barely put any weight on it, so sat on the couch, keeping it elevated.  I suspected that I had been walking funny since my toe hurt.  I don’t know about you all, but I can adapt to pains like that without even thinking about it.  Even changing shoes can cause a flare up my leg by slightly changing the way I walk.  See this post.

I went to bed fearing I would wake up a mess and have to miss work.  I guess in a way, I was hoping for that to happen, as Monday and Tuesday were REALLY exhausting days at work. Sometimes you just need a break.  Anyway, I woke up and my leg was normal, but the bottom of my big toe hurt pretty bad.  The skin hurt, not the joint. It isn’t warm.  It doesn’t look injured.  It’s just really really swollen and sore on the bottom.  It’s so swollen that it’s changing how I walk.  I took a shower, woke my husband, and asked him to look at it.  I was debating staying home, knowing that my whole leg would swell if I was walking weird on it all day.

In the end, I decided to make it to work.  I only work 4 hours on Wednesdays, and I know my coworkers would really need me if Wednesday was anything like Monday or Tuesday (thankfully, it was a much better day).  To get through the day, I decided to try something I used to do quite frequently, but not much at all in the last 10 years.  I decided to fast.  Sometimes when my body hurt and nothing else worked, fasting helped.  Today, I did it more as a test.  I didn’t take any pain medication (no ibuprofen, etc…)  I did drink water, and I did take my thyroid medication. Other than that, I didn’t eat anything from about 6:00 Tuesday night until 4:30 Wednesday afternoon, almost, but not quite 24 hours. 

So, what happened?  Well, I made it through the work day.  My right ankle swelled and hurt a little, but not nearly as bad as Tuesday night.  I even made it to the grocery store after work, something my husband insisted I not do after seeing my foot Tuesday night.  I was very tired, although I’m not sure that was related to the fast.  It was the sleepy kind of tried, not the lack of energy kind of tired.  I took a nap for a little over an hour when I got home.  Amazingly, I wasn’t hungry, and I didn’t get the shakes until about 4:00 PM.  Then I was absolutely starving.  I think I have Paleo to thank for the not being starving all day long.  I’m no longer the sugar addict I used to be.  This was reassurance that my hunger cycles are very different now than they used to be.  I suspect I could have gone longer had the afternoon not been crazy.  My son has a huge project on Abraham Lincoln due on Friday, and it has to get done by tonight, as he has a baseball game tomorrow.  Sometimes, it’s like pulling teeth to get a 9 year old to get his butt moving on such a big project.  He was needing constant supervision and encouragement to keep going on the project.  I soon realized how irritated I was getting with him and how hungry I was becoming.  I wonder if I would have done better if our evening had been more relaxed.  This was not the case though, and I suddenly went from feeling fine to feeling very stressed.

So, how did I break my fast?  I made myself a shake minus the greens.  Probably not my best choice.  I was already hungry and cranky.  After the shake, I was still hungry, cranky, and cold!  2 hours later, I’m sitting here eating some plain turkey we made in the crockpot Sunday night.  I’m feeling pretty normal.  My foot is not bugging me much, but the skin on the bottom of my big toe is still very sore.  I may need to see the doctor about it, as it seems very unusual, and I have no idea what’s wrong with it.

Next time, if I can get some less-stressful days, I may try for a 2 day fast.  Supposedly fasting helps reset your immune system, and I heard something recently that a 2-4 days fast can do really good things.  http://www.eurekalert.org/pub_releases/2014-06/uosc-fts060214.php