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Wednesday, September 9, 2015

Are endocrinologists are trying to kill me?

As you've noticed there was an absence between the last post talking about my excitement of going to my (4th) endocrinologist and this post.  As I'm sure you can tell, just by reading the subject it didn't go well.  I'm not very good at summing things up, I don't know if it's an anxiety thing or memory thing that makes me go into so much detail about stuff.  I'll try to, though a lot has happened since that appointment, both good and bad.  It has been hard to get the motivation, and energy, to write all of it.  Here it goes...

PART 1: The (4th) Endocrinologist

In her profile she stated, "I look forward to practicing and bringing the best and newest treatments to my patients," and this brought me some hope.  "Newest treatments," kept dancing around in my head and the fact that a friend had recommended her to me, it all gave me hope.  A few days before the appointment the office called and said she fell ill and wanted to push my appointment back another month.  This couldn't be happening!  I had already been waiting months for this appointment, I was running out of medication, I was a mess.  I set up the future appointment, while sobbing, and started looking for a naturopath because, by this time, I was done with endocrinologists.  Within an hour, they called me back and were able to get me in the beginning of the following week.  I put my additional search on hold.

I had expectations about how the appointment would go.  I would go over my history, concerns, symptoms, then go into treatment expectations. She would review the records I sent over with me and we would decide, together, how I can get better.  Oh, how wrong I was about everything.

When she came in she introduced herself.  Having a long and different last name she went over how it was pronounced.  From there she continued to talk.  And talk.  And talk...

It started with her telling me about all the time she had taken, before coming in to see me, to review the documents I had sent over.  I didn't get a chance to tell her how the majority of those "diagnosis" were years old, over with and never removed, incorrect, or also misdiagnosis.  She thought my other doctors are really trying to help me, yet once these other doctors realized I had thyroid issues they advised me an endocrinologist had to help me.  She tells me these other side effects of thyroid (or lack of thyroid) disorders need other doctors who specialize in those issues to help me.  I knew it was going to get worse from there and it did.

She continued on how she refuses to write scripts for Armour Thyroid.  That it is an unstable medication.  I was dying to ask her then why it's approved by the FDA and still on the market, & how Synthroid has had its own history of recalls due to its inconsistency.  I told her how the last time I was on Synthroid they kept increasing the dose and my pain increased with it.  How I was symptomatic of having a T3 conversion problem.  She goes on to tell me that TSH is the only number she, or any endocrinologist, needs to check.  Pain is a rheumatologist issue and I would need to see one.  (Oh God, this is getting worse by the minute.)  But she did make a point that, how could she tell if I had a T3 conversion problem being on a med with T3?  So she'll put me back on Synthroid, then check the T3 and my other thyroid levels later on.  Oh, she also said, "I'm not going to put you on a medication just to lose weight."  If she was listening to me she would have known I didn't want to be on it because of that!  After this I lost all trust in her treatment.

The remainder of the appointment she spends complaining about all the time she is spending with me and how it's going into her other appointments.  She, again, goes on and on about her name and how to pronounce it.  She goes over my blood work.  Oh hey, 0.42 TSH is in "normal" range!  Oh no, not this again!  No, I feel terrible at that level!  It's not normal for me!  Finally she goes into her plan for me.  She is taking me off 120mg of Armour and putting me on 100mcg of Synthroid.  I'll do this because I need some type of thyroid medication to live!  I have to have labs done on 2 different days and fasting before each one.  She's going over everything so quickly I ask her if she's writing it down for me because my short term memory has been off lately.  She tells me if that's the case, then I need to bring someone with me to help me next time.  Then again, goes over how to pronounce her name.  Wow, thanks.

I set up my next appointment and leave, then get in my car and start bawling.  I cry driving all the way home.  When I get home I start researching naturopathic doctors.

I already forgot how to pronounce her last name.

PART 2: The Naturopath

Not all naturopathic doctors dabble in autoimmune issues, so in my search I am looking for one who does and is close by.  The search is limited.  There's one in Rochester, but their initial appointment is pushing $400 (It may have even been $450, can't remember) and I just couldn't afford that.  Also, naturopathy is not "recognized" in NY state so they are not covered under insurance, nor are they allowed to write scripts for blood work or prescriptions.

I find one in Ithaca who says she can.  I send and e-mail of inquiry and in response I am told the initial appointment is around $250 (Better than $400  so that works for me!), but they are booking into September (and it's currently April or May, I can't even remember anymore)! So until I can get in, I am referred to a local ND whose initial appointment $150, additional appointments $75.  I like this, but since I have lost faith in endocrinologists, my primary is going to need to work with her as far as blood work and medication.  I have a good, long standing relationship with my primary doctor so this shouldn't be a problem.

The initial appointment with the local ND is great!  She is extremely thorough, going through my history, realizing and taking into consideration much of what is listed in my medical history is incorrect, misdiagnosed, and/or is irrelevant to my current situation.  She starts to confirm all my suspicions and research that I have done on T4/T3 treatment and why I am feeling ill.  Then, I knew it was coming and I dreaded it, she advises I need to change my diet.  No gluten, dairy, peanuts, red wines. Limit red meats, poultry, certain fruits, sugar, salt, and the majority of soy products, plus cut the carbs.  I need an anti-inflammatory diet.

She listens to me, explains things so I can understand them.  She goes over the blood work the last endocrinologist wrote for me & found out she wasn't even going to check my T3 at all! I'm adding a lot of vitamins and supplements to my diet.  I need to speak with my primary, get blood work done, put on an additional T3 medication, and go back on Armour Thyroid.  I'm so glad I did this!  The next day I call and cancel the future appointment I had set up with my 4th endocrinologist.  I'm OVER the terrible treatment I have had with them!

PART 3: TheAftermath

I have to gut out my fridge, freezer, and pantry of the foods I can't eat.  Wegmans has a good selection of gluten free food!  Unfortunately, most of the stuff that is gluten free has additional ingredients I need to be avoiding.  So I'd find something and, oh there's dairy in it.  Or, nope, that has soy, or that has peanuts.  I started crying in the middle of the supermarket.  It has gotten a little easier with time, but oh, what I would do for a Domino's chicken alfredo bread bowl every now and then!  Or pizza with fluffy crust!  Or, OMG, REAL ICE CREAM! *SOB*

The week after I saw my ND, on a Monday, I went into my primary's office.  I saw an NP who wrote scripts to for my thyroid blood work and I went to have my blood drawn.  I had already switched back to the Synthroid and my pain was getting worse each week that went by.  Then that Thursday I got a phone call from my NP.  She asks, "You're taking your medication every day?  At the same time?  You aren't eating or anything when you take it?"  Um, why am I getting drilled with questions?  What's going on?

My TSH was 17.11!  In addition to that, my Free T4 is low end of the reference range, my Total T3, Free T3 are low, and my Reverse T3 is at the high end of the reference range.  No wonder I was feeling like crap!  Everything is opposite of where it should be!

What concerned me the most was my TSH being 17.  I did a little research and found out that when my new endocrinologist changed me from my Armour Thyroid back to Synthroid she didn't do the conversion right and cut my dosing in HALF when it really only needed to be adjusted very minimally.  I had only been on Synthroid for a little over a month and can only imagine where I would have been if I would have kept course.

So, after being grilled with the questions by my NP she got me a script to get back on the Armour Thyroid, same dosing as before, & added on additional T3.  Within a few weeks I already started to feel better.  She wouldn't fill the dosing for the Cytomel (T3) at the amount the ND requested, but I saw my actual primary doctor a few weeks later, she collaborated with my ND, then raised the amount.

Some time has passed & now I'm subclinical hyperthyroid.  TSH low, T3 levels kind of in the middle of where they should be.  It still is going to take some more time to even out and labs to figure out the next step of action with me.  My overall health is doing well and I've lost a lot of weight.  It's amazing the roller coaster I've gone through all because of one stupid organ.  I'm only hoping my levels stay even and I don't get sick again.

And now that we're in September I'll be going to the new ND soon.  Eventually I'll write my experiences.  My goal?  To stop writing about my thyroid and autoimmune problems because I'll be feeling better.  Then I can start writing about more fun products and projects I am working on instead of depressing stuff about how terrible & misunderstood medical treatment is for thyroid autoimmune diseases!  I've been doing them, but more behind the scenes as of late.  You'll probably see more of them in my Instragram or Twitter as of now but hopefully I'll remember to post the stuff to my Facebook page now & then too.

1 comment:

  1. I happened upon your blog googling epsom salt heart palps.
    Fyi... I have been down your path. Graves Diagnosis 2007.
    Radio active Iodine 2009.

    Remember, with Graves, your TsH will likely be surpressed... like 0.1 or 0.3 ish. Or even lower. FT3 and FT4 in upper half is typically best.
    I was kept in a state of Hypothyroidism for 3.5 years after 4 endos dosed me according to TsH. Living Hell.
    Slowed down my gut transit time. Food fermented. Fed candida and SIBO, I had no idea this was even going on.
    My condition deteriorated... im now filing for disability while I focus on rebuilding my Microflora.
    I suppose you were on birth control, antibiotics,or mabye even tetracycline for acne? This is where it all starts. Women are 8X men with thyroid autoimmunity.
    My guess is that if u looked at the subset of women that Never were on BC, that the ratio to men would be closer to 1 to 1.
    Check out fermented foods. Body Ecology Diet is a good start.
    Im currently looking for a healthy donor for a microbial transplant.
    Check out
    The lady who started the site begain with Graves as well.
    Never Give Up.