Wednesday, May 8, 2019

Answered Prayers

I know I missed a post last week, but this week's post is going to make up for it, I promise.

Many of you know about my race to find a new thyroid doctor since my holistic NP decided my thyroid levels were too erratic for her to figure out.  I went to DietDoctor.com and found a low carb doctor in my area, contacted him April 22 and explained my situation, and made an appointment to see him May 1.

May 1st came and I took time off from work to go to the appointment.  Dr. McColl was very nice, very happy to hear I was already low carb and looking for a supportive doctor.  After an hour long consultation with him, he said he thought my biggest issue was my thyroid, since I wasn't happy with my endo's care and my holistic NP was dropping me.  I confirmed that yes, that was my biggest worry right now.  He said I was probably going to want to talk to the thyroid specialist they have at their other location, which is actually down the road from where I live.  I totally agreed and I made an appointment to see her...today!

Dr. Hone is one of the sweetest ladies I've ever met in the healthcare industry, and she was more than happy to talk to me about thyroid options, all sorts of food tolerance and thyroid testing, Celiac, Type 1, and medications we can try.  She was perfectly fine with keeping me on my current dose for now until we can establish a baseline test so she can see what their labs say about my levels (since they use a different lab than my holistic doctor uses).  I was thrilled to hear that she is even willing to prescribe me insulin since I self-manage and don't use a pump.  She said it doesn't sound like my endo is doing anything that she couldn't do for me, so I can basically drop my endo!!  I was ecstatic!  Dr. Hone also couldn't believe how doctors don't have their diabetic patients on a low carb diet. She was completely fascinated by the law of small numbers and Dr. B, which I explained to her.

I'll be coming in for lab work on May 21 and have an appointment with her to discuss treatment and such June 5.  I am BEYOND THRILLED with how the Lord has worked all of these pieces for me, especially when I thought things were going downhill.  He really was just closing one door to open up a better one!  Lord willing we will have things figured out and smoothed out this year and into next.

One step backward, two steps forward!

Also, just took a home A1C test:
 

Thursday, April 25, 2019

Out with the old, In with the new!

On Monday the 22nd, I got a call from the nurse at my holistic doctor's office.  She sounded rushed and frantic, and explained that my thyroid levels were so erratic that my nurse practitioner was no longer going to help me treat my Hashimoto's.











That upset me since it felt like I was losing the only shred of support I have and she said I should let my endo treat me.  Seeing as how my endo wants to not suppress my thyroid and probably put me back on Levothyroxine, I opted to search for a new doctor.

I turned to my diabetic Facebook groups and then received a call from my mom, who suggested the Diet Doctor, Jason Fung.  I searched his website and found a list of low carb doctors.  Only one was listed in TN close to me, so I checked out their website.  I sent him an email right away, and got a nice, lengthy response in half an hour!  Long story short, he's a keto follower himself and said he'd do all the thyroid tests I wanted.  I've got an appointment set up for next Wednesday to see if he'd be a good fit!

What I find interesting is that his practice is unique in that they bill their patients with a monthly membership, instead of running things through insurance.  The cost is low and allows for him to give personalized attention to each member even outside of office hours.  Hopefully he'll be able to help me get my thyroid levels normalized and my blood sugars stabilized so I can get my A1C down.  One step at a time, right? 

Saturday, April 13, 2019

Progress report

So I've been doing physical therapy for my back pain since January, and on Monday I will be discharged after my last appointment!  My back is feeling so much better and I'm going to continue to build up my core strength with the exercise program they give me.  Hopefully I'll also be able to get myself a bow and some arrows so I can take up archery again!

On Tuesday I went in to my holistic doctor to get my thyroid labs retested.  It should be sometime next week that I get the results back.  My dose was cut from 120 mg to 90 mg per day.  Wonder how that's been working?

My numbers have been cooperating for the most part.  A few highs every now and then, but I'm trying my best to stay on top of them.  Estimated A1C seems to be about 6.6%.

Wednesday, February 27, 2019

I wasn't expecting that!

I don't even know how this is possible, but my A1C came down! 
That's right, in just a month it dropped from 7.3 to 6.7!  Don't ask me how because I have no clue, but I must be doing something right!

I of course had to explain why I didn't want Tresiba, or a pump, or blah blah blah.  I am probably going to need a new Dexcom (G5?) once my receiver dies.  But I don't need all the bells and whistles and all the issues that come with medical devices that deliver insulin when syringes do the job just fine. 

I am going to get some R and start using that to help cover my food so I have some smoother lines.  That's my next goal...ironing everything out.

Monday, February 25, 2019

Thyroid labs and another diabetes appointment coming up

It's been a little while since my last entry and I've been busy with work, PT twice a week, video games, and running a household.  I got my thyroid labs back today with a new prescription change.

Apparently, my Free T3 is too high so we're cutting my dose back to 90mg a day...hopefully that will help.  Also, my Antibody levels have come down some more!  Yay!  (remember how they were 610 when I was diagnosed?)
DateLabTSHFree T3Free T4Reverse T3TPO AntibodiesRX
February 11, 2019Seasons0.015.11.3
29
Armour 90mg/day
December 15, 2018Seasons0.0220.916.933
Armour 60mg twice a day

I have an appointment with Carrie on Wednesday, but I'm not expecting it to go well.  MySugr has my estimated A1C at 6.9% (it dipped down to 6.8 for a day and then went back up).  They're averaging about 150.  I'm just struggling to get my numbers down.  I am NOT trying Tresiba, and I'm about ready to try a different NP. 

Wednesday, January 9, 2019

Physical Therapy and Lower Blood Sugars

Before we came home from our Christmas holiday, my blood sugars started lowering.  I decreased my Levemir shot from 7 units at midnight to 5 units, and went to bed with a BG of about 120.  Around 4 or 5 in the morning, I woke up at 68 and had a glucotab.  BG went back to normal of 85.  I've since lowered it to 4 units and my numbers have been beautiful. 

I'm so glad I didn't try Tresiba...and THIS is exactly why I don't want to use it.  My BG has been known to do this before and being able to change my dose on a whim is what I need.

My doctor refilled my Levemir for me and I got it filled in MD.  I've had to fight for my insulin before but being rejected right before a big trip is not okay.  I'm looking for a new doctor but I haven't had any luck yet.

I had my first physical therapy appointment on Monday.  It went well, despite my head cold (also why I am home from work today...I am not feeling well).  The physical therapist was very knowledgeable and after a few tests to see where the pain is, what my strength is like, and what I can tolerate, he informed me that my core is weak, but especially my left side is weak.  He gave me some exercises to do, both new and old, that will help me strengthen not only my abs but also my glutes, hips, hamstrings (because I get shaky/weak in the legs sometimes and my hamstrings are weak) and back muscles.  The core is responsible for supporting the back and that is what I need to improve to help my back pain.  I will be seeing them twice a week this month, starting on Monday after work.      

Friday, December 28, 2018

Things are finally going the right way

Today I got 3 major health things done:
1.  My Levemir prescription was transferred from home and ready for pickup at Walmart.   Yay for getting it before running out!
2.  I heard back from the people at Byram and they got an account set up for me and Dexcom sensors ordered!
3.  I got a physical therapy appointment scheduled for the day after we get home. 

I also found a natural back pain reliever (kali carbonicum) at Whole Foods and it seems to be helping.  I priced some CBD oil (Ananda and Charlotte's Web brands) and will be looking into those more. 

I've been trying Swerve since my holistic doctor thinks stevia may be causing my bloating/gas.  So far, things seem to be much better.

Sunday, December 23, 2018

Levemir Woes

Right before we left yesterday to spend the holidays with hubby's side, I was able to get my Armour thyroid refilled with a 3 month supply.  However, I was not so fortunate with my Levemir refill.  The pharmacy called me and told me that my doctor had denied to refill it due to the fact that they want me to try Tresiba.  I have decided I am not interested in trying it for several reasons:

1.  My blood sugars have been known to change on a dime and require a drop or increase in basal on a moment's notice.  Having Levemir taken every 8 hours allows for more frequent changes as needed.  Tresiba would be taken every 12 hours (I know the doctor thinks it's once a day but splitting provides more steady coverage.  Insulin actually only lasts as much as the amount of insulin on board stays active, and the less you take, the shorter its life span).
2.  I'm worried about negative reactions I've heard some people experience while on Tresiba.  I don't have negative reactions to Levemir. 
3.  Levemir works when it's dialed in correctly.  The problem I have is figuring out how to dial it in correctly.  Once I do that, I won't have such issues.  But that's no reason to switch to a new insulin.
4.  Trying to push me to try a new insulin just because they may get paid more in bonus money really irks me.  I hate that doctors don't consider the preferences of their patients because they're too focused on making money off of them.  The MORE you PUSH me, the MORE I RESIST.

I now have a limited supply of Levemir because I was forced to leave without the RX.  I contacted my doctor and requested the RX be refilled ASAP but it won't be responded to until after Christmas.  I brought a Tresiba pen, as well as the Levemir pen I've had on hand for emergencies.  I'm praying I won't run into any trouble, but I may have to find a TeleDoc to write me an RX in the meantime.

I managed to find an extra Dexcom sensor in my travel bag before we left, so it should last me the whole trip, but I'm still trying to get a medical supplier set up so I can order more.  

Tuesday, December 18, 2018

New DME Supplier and Lab Results

I placed an order for more Dexcom sensors over the weekend and got an email yesterday from Better Living Now saying that they are no longer contracted with my insurance as of November 1.  I tried looking for another provider on my insurance company's website but it was less than helpful.  I decided to ask other diabetics who they use and got a recommendation.  I signed up with Byram and am hoping to hear from them in the next few days.  In the meantime, I am ALL OUT of Dexcom sensors and am therefore Dex-less. 

In other news, I got my lab results back from last week's blood work.  Nan said everything looked good, just one of my thyroid levels was low, probably because I hadn't taken my dose before I got my blood drawn.  She also said I could stop Vit D for a month if I wanted, as my level is in the 90s.  I just ordered and received a new box of supplements though so I'll just continue taking them.  She may tweak my order in a month to add things that will help with blood sugar management. 

I also told her about how I seem to be bloated/gassy after eating Lily's chocolate bars.  She said that's common but that it may not be the soy like I was thinking but rather the stevia.  She suggested switching to Swerve and said she'd send me a recipe I can use to make my own chocolate bars.  I'll see how that works!

I told her about my back pain, which has been continuing to bother me for the past week or two.  This is longer than most flareups I've had in the past.  She recommended trying CBD oil (Charlotte's Web or Ananda brand) for pain and inflammation relief and also said if I want to have a doctor look at my back, her son is a physical therapist who works with people who have sports injuries and back issues.  So I have some things to research and look into.  She wants to do follow-up labs in 8 weeks, and recommended coming in around noon so that my meds have time to work after I take them in the morning.  She's not changing anything about the dose right now until we run them again.  But I'm just happy my TSH levels are staying consistent.  She said they are the same as last time!  Just waiting for the results to be uploaded onto my patient portal so I can download them for my records.       

Thursday, November 29, 2018

Backsliding

Physically.










I had my appointment with Carrie yesterday. 
MySugr has my estimated A1C at 7.4% 
Labs say they are 7.3%. 

Carrie was impressed that they were so close.  I was not impressed that it had gone up.

She suggested Tresiba again, and gave me another sample.  I'm convinced my Levemir works as long as it's dialed in correctly.  Meals are also tricky.  I just can't get a handle on things.  I eat the same foods, pretty much at the same time.  I just always spike.

Checking to see when my next thyroid test needs to be done.  I want to get a fructosamine test done also to make sure my A1C is accurate.  It's similar to a hemoglobin A1C test but focuses on the past 2-3 weeks, whereas an A1C is the past 2-3 months.  In addition, the fructosamine test measures glycated protein in the blood instead of glycated hemoglobin.  You can read more about it here.

The good news is:  I refused the flu shot!!  

Saturday, October 27, 2018

Annual Eye Doctor Visit

DP & I had our annual eye exam today, at a new eye doctor.  We purchased our glasses from them last year because I had seen a pair of frames that I loved in their ocular shop.  They had such rave reviews and my mom took the kids there so I looked into their office a bit more.  They have a lot of high tech eye machines which I've always liked better than the standard eye-dilation (I hate having things in my eyes).  We were able to make an appointment for Saturday which is great so we don't have to miss work during the week!

I was called back first.  I had my eyes scanned by two different machines and did a few color and distance tests.  When the doctor got around to seeing me he went over the pictures the machines had taken of my eye.

I don't know why I reported last year that everything looked clear.  The old doctor told me I had mild non-proliferative diabetic retinopathy without macular edema, but he down-played it as something that wasn't a problem.  The new doctor took a completely different approach, making sure that I understood that my high blood sugars were causing damage that couldn't be repaired and if I continued to have high blood sugars, things would get worse.  He pointed out a total of 3 hemorrhages that I have between both eyes (1 in one eye and 2 in the other) and that only one was close to the optic nerve/macula, which was concerning.  He told me I needed to tighten my control if I wanted to prevent vision loss.

Both of our prescriptions changed considerably, so we ordered new lenses (and opted to keep our current frames since we like them so much).  I feel like we made the right choice switching doctors.  I feel like I got a much clearer picture of my eye health, and a doctor that actually understands the importance of normalizing blood sugars.  Even though he said an A1C of 4% was difficult to achieve, I know it's possible.  I'll aim for that.  Even 5% would be good.  I've done it before.  Now I need to work my butt off to do it again.

As if my body was scared into submission by what he said, my numbers have been lower today.  But I can't slack off.  Here's to lower blood sugars and keeping my eyes for another 40+ years!     

Saturday, September 29, 2018

Methyl Protect

I started on my new MTHFR supplement today.  It's called Methyl Protect from Xymogen.  I get most of my natural supplements there.  Their products are clean, pure, and made with professional formulas.  What you put in your body really matters.  I'll be taking one capsule twice a day with meals.  I can't wait to see if I feel a difference while taking this!   

Thursday, September 20, 2018

Thyroid and MTHFR Labs

 Here are my thyroid lab results:

TSHFree T3Free T4Total T3Total T4Reverse T3TPO Antibodies
0.024.31.3

15.744

My MTHFR results are:
C677T:  Negative
A1298C:  Homozygous (two mutant copies of this gene)  Technically, I'm C1298C.

What does all this mean?

Remember how my TSH was 95 in July?  Well, I was right about Armour being my magic pill.  My TSH came WAY down, so instead of 60 and 90 mg a day, I am taking 60 mg twice a day.

As for the MTHFR gene mutation I have, let me see if I can put it in terms that are easy to understand.  

MTHFR stands for MeThylenetetraHydroFolate Reductase enzyme.  This enzyme is super important.  Its job is to help your body process amino acids (and our body is made up of amino acids!).  When mutations are present, lots of things can go wonky!  (This website has a great list of examples:  https://melanieavalon.com/mthfr-mutations-methylation/)

Homozygous A1298C is one of the worst mutations.
MTHFR A1298C mutations affect conversion of methylfolate into BH4, or tetrahydrobiopterin. BH4 plays an important role in neurotransmitter production, which is why MTHFR A1298C mutations are often associated with psychological disorders. The particular neurotransmitters affected include serotonin, dopamine, epinephrine, and norepinephrine. MTHFR A1298C mutations may also affect melatonin production, which often leads to sleep disturbances. Additionally, BH4 is important for heart health and deficiency may play a role in the development of cardiovascular disease.  (http://www.mthfrtreatment.com/)

  • MTHFR is the short name for the genes that code for the enzyme that changes folic acid to the active form that your body uses (the long name is methylfolate reductace).
  • 1298 is the marker for one particular MTHFR gene.
  • You get one copy of this gene from your mother and one from your father, so there are two possible copies that can be either “normal” or “mutant”
  • If you inherited one good copy and one bad copy that’s called “heterozygous A1298C”
  • If you inherited two bad copies (one from each parent) that’s called “homozygous A1298C”
  • A…C stand for the bases that you actually have.  A = adenine C = cytosine.  Bases are essentially the letters that spell out your genetic code.  There are four of them commonly (C, T, A and G).
  • When this gene is “normal”or “wild type” it looks like MTHFR A1298A.
  • Heterozygous mutations (one good copy and one bad) are MTHFR A1298C because there is one normal A and one abnormal C Also occasionally written 1298AC.
  • Homozygous A1298C (two bad copies) can also be written as C1298C (because there are two abnormal copies with C instead of A). Occasionally you’ll also see it written 1298CC
Phew! So the take-away there is MTHFR A1298C means you have at least one bad copy of this gene, and if it’s called homozygous, or C1298C then you have two bad copies.
Homozygous MTHFR A1298C (C1298C) have about 65% normal activity (so 35% compromise). Normal activity refers to the way your body converts folic acid to 5-L-methyltetrahydrafolate (the active form) so that it can be used. Compromise in this case looks like a folate deficiency.

http://dramyneuzil.com/i-have-mthfr-a1298c-mutation-what-does-that-really-mean/

My doctor recommended a supplement to help with this.  Once I hear back from her with the exact name, I'll be able to order it.  

Tuesday, September 11, 2018

Follow-Up Appointment

My appointment with Nan yesterday ended up turning into a phone appointment, which was really all I needed.  She relayed the results of my cortisol test, as well as my DHEA levels.

Cortisol is all in range, even a little low.   
DHEA is high so she said to stop taking it.

Since my endo didn't test my TSH in August, Nan said we needed to retest it now, so when I got off the phone with her I drove up to their office to get my blood drawn -- for the thyroid panel as well as for the MTHFR gene mutation test.  It will probably be a week or two before I get a call with the results.  I can't wait to hear what they have to say.

Now I need to save up for the LEAP (food sensitivities) test I want to have done.  It's more expensive but will tell me a whole lot of other useful information about which foods I'm sensitive to.  Hopefully it will help me figure out which foods to cut out, like soy and dairy, so I can heal my thyroid.

Wednesday, August 15, 2018

Can I just forget the world?

So I was expecting my TSH to be tested today but since my holistic doctor is handling things, Carrie said they didn't test it or my cholesterol values.  Kidney and liver functions are normal, A1C is 7. 

She gave me some Tresiba samples to try.  Maybe it'll help with basal? 

She asked if I'd be willing to get the endo's opinion if my thyroid values keep fluctuating.  I told her I didn't want to change anything right now since I just started the Armour again. 

I see her again in November, after Thanksgiving. 

No answers.  Just more trial and error. 

Lots of error. 

No results. 

I'm tired.  So tired. 

WHY CAN'T I GET THIS RIGHT?!?!

Thursday, July 19, 2018

Why aren't you working?

Remember how I got my thyroid lab work done last week?  My nurse called me today during work in a bit of a panic and told me that my TSH results came back at 95 and that is SUPER HIGH.  Even higher than the last high result I got, which was 48.  They're switching my Nature-throid back to Armour and it looks like they increased my dose, too.  I haven't felt too much different...maybe a little cold, and tired.  But not noticeably, and I'm still functioning as usual.  I thought the tiredness was from working, and it's cold in the office because they keep the AC on full blast.  I've been drinking 2 Bai drinks a day to keep me awake - 30 - 45mg of caffeine in each serving.

I also picked up the saliva cortisol test, and I'll be taking it on Saturday.  The day I wanted in August isn't available so I'll have to pick a different day for the results on that one.

I'm also going to go through my thyroid labs, results, and med changes and start keeping track of everything.  Trying to look for patterns and answers.  I don't know why these meds aren't absorbing like they're supposed to.  Ugh.  I'm pretty frustrated. 

EDIT:
Here's the tracker I made:

Thursday, July 12, 2018

Minor update

I've been enjoying the mySugr app and everything it lets me see.  Rather than tracking my numbers on paper, I can put it all in one place on my phone.  Now to see if I can integrate my Dexcom data...

On Tuesday morning, I got my blood drawn for thyroid labs.  I've also scheduled time next Tuesday to pick up the cortisol/DHEA saliva test they want me to do that goes hand in hand with my thyroid labs.  Those results should give us a pretty good idea of how things are working for me.  https://stopthethyroidmadness.com/saliva-testing/

The follow-up appointment for the test results will be in 3-4 weeks.  I'm considering scheduling it for the Wednesday I already have my endo appointment so that I can just take that whole day off work and be able to tell Carrie what we found.  That's my thought at this point, anyway.


Wednesday, June 20, 2018

MySugr Bundle Arrived!

My mySugr Bundle arrived in the mail today!  I'm super excited to start using it!  I've been using the app every day so that I get used to it and it makes tracking things super easy.
 
I log my meals, insulin, and even my supplements!   

Wednesday, June 13, 2018

AccuChek Guide and mySugr Bundle!!

So I learned from a fellow Type 1 on Facebook about an awesome deal - $39.99 per month for unlimited test strips while using an AccuChek meter with the mySugr app bundle.  At first I was disappointed to see that my smartphone, a ZTE Majesty Pro, wasn't listed on their website as compatible with their app.  I contacted the mySugr support team and explained my interest and problem, and the girl answered back asking if I'd like to test out the pairing for them.  I said yes and ran out to Walgreens to buy some test strips and a Guide meter:
 After a few days (and tries!) to get them to pair and share data, I succeeded!  BOOYA! 
  I'm waiting to hear back from the support team, but I think this means I'll be able to save money on test strips now!  Whereas I was spending $50+ a month for 300 test strips at Walmart, now I'll be able to get unlimited for $40!  And it's a cool meter too, with a back light, test strip light, an A1C estimator on the app, and pattern spotting on the meter, plus a test strip eject button (haha).  Pretty spiffy!  Also, the test strip container is specially made to keep the strips from falling out when it's turned upside down.  :)  The case is a little small but I will probably transfer my Guide meter to my old case so I can keep my insulin in there like I currently do.  

Thursday, June 7, 2018

A1C

It's been since January that I had my last A1C checked.  My next appointment isn't until August so I bought a home A1C kit from Walgreens.  Today, my result came back at 7%.
I've been struggling with numbers in the 200s.  I guess I'm not surprised. 



My tinea versicolor has cleared up!  Yay!  Now to figure out what to do with these naughty numbers.