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.

For those of you who just don't get it...

The last time my friend was in town staying at her mother's, I went there before we went to do some shopping & shenanigans.  Her mom's like a 2nd mom to me, always making me eat and making sure I'm doing well.  She knows about my thyroidectomy and my struggle to get better.  This was right after I learned my TSH had shot up to 9, and though I'm still way better than I was in the past, immediately after being asked how I was doing, I responded, "Not too well," explaining how my level just spiked and how I have no clue why.

The conversation then took an argumentative turn.  She told me I was relying too much on my doctors & how I needed to stop all my medication and then she kept trying to push a progesterone cream on me because it was "all natural" and she "knew what I was going through."  Mind you she thinks I'm going through early menopause (thyroid disease vs. menopause) and has never been treated for a thyroid condition.  I explained how yes, my sex hormone levels could have something to do with my condition, but the hot flashes I was having after my surgery had since gone away, many months ago, and my periods are back on track.  I also explained how I made my new doctor check those hormone levels and they came back normal.  The last thing I need to do is take a supplement and throw the normal levels off causing more problems for me.  I told her how, due to my TSH being at 9, that made me understand why I was currently feeling like crap, and how I upped my dose of thyroid medication and we're also now looking into my adrenal gland function.  I tried to tell her how I cannot just stop taking my thyroid medication, how it could kill me if I did, and she just wouldn't accept it.

I broke down in tears.

I've had a few people ask me about stopping my medication to see if that would help, or tell me that maybe once I feel better I should stop taking them and I always try and explain to them how I can't.  Some, I think, get it.  Some, I think, act like they get it and then just drop the subject because they probably think I will just not listen to what they are trying to say anyway.  Then there are those that try and argue with me.  Not even to stop taking the medication permanently, but they cannot understand why I will not even try temporarily.  I started taking Armour back in October 2013 and, though I stated before how I am feeling better overall, my levels went from low, to normal, to low, to high! I still haven't even found a good dosing to keep me level yet!

So, the other day, Mary Shomon had posted on her Facebook page something that I feel EVERYONE needs to read.  If you just don't get it, maybe this will help.

"Type 1 Diabetics (an autoimmune disease) REQUIRE insulin to survive. Lack of insulin - a crucial hormone - will kill them. So far, there's no "natural" non-prescription source of insulin, no herbs, no vitamins, or supplements that can provide them with the insulin their bodies requires to survive. They require prescription insulin to live.

Human beings MUST HAVE THYROID HORMONE TO SURVIVE. Over time, a lack of thyroid hormone will eventually be fatal. There is no trusted "natural" non-prescription source of thyroid hormone, and no herbs, no vitamins, or supplements that provide the actual thyroid hormone our bodies require to survive.

While in a subset of cases, borderline thyroid problems can be caused by iodine deficiency/excess, goitrogenic foods, gluten intolerance, inflammatory diet, etc. -- most people who are hypothyroid are already looking at damage to the gland, which means the gland is unlikely to produce enough thyroid hormone, and may not be "fixable" or able to improve its hormone output. And for those whose gland is surgically removed or radiated (RAI) - they have little to no thyroid function at all, meaning no way to produce thyroid hormone.

I'm sharing this, because I'm concerned when I see people say that most of us shouldn't take thyroid meds, or "I don't need them, no big deal" etc.

If you read a success story -- or see marketing pitches -- about "I'm not taking any thyroid meds and I'm doing fine by doing x, y, z" or taking this or that supplement, that's wonderful for those folks, and there's no doubt that for a subset of people, food/diet/supplements may be able to put their thyroid into a normal range and/or resolve their symptoms.

But if you have had thyroidectomy/surgery to remove the gland, if you have long-standing hashimoto's with atrophy or destruction of the thyroid gland, if you have congenital hypothyroidism, if your gland has shrunk, etc. then all the diet/nutrition/supplements in the world are not going to make a missing or entirely dead organ to grow back or start working again. Those things can help with residual symptoms, definitely, and be the difference between feeling so-so and feeling great.

There is a profound difference between someone with mild borderline hypothyroidism and a TSH of 6 deciding not to take meds, and someone who has no thyroid going off meds, which can be fatal. I also want to caution you that in 20 years, I have heard from dozens of thyroid patients who said they went off their prescribed meds because they didn't want to take them, or they wanted to do it "naturally" and thought they were doing well, until they started to notice that they had gained weight, cholesterol shot through the roof, they didn't realize that miscarriages were connected, etc.

In one case, a woman who had no thyroid decided she didn't want to take her meds -- and it ended up where she couldn't drive, couldn't work, slept 20 hours a day, was so puffy she could barely move, her heart rate had dropped to about 40 beats per minute, and she was so addled she didn't even realize that she headed into a myxedema coma, and was slowly dying...she just laid in bed sleeping most of the time. Thankfully a friend recognized what was going on -- she hadn't taken her meds in a year at that point -- and if the friend didn't haul her deliberately into the ER as an emergency, where they found she had a TSH over 400, they said she was about 2 weeks away from death from organ shutdown.

Taking thyroid hormone is NOT like taking a Tylenol.... it is replacing a crucial hormone that we require to live. I just want to make sure that folks understand that this isn't a do-it-yourself casual health issue that's no biggie -- it can have some serious repercussions, it can cause loss of pregnancies, people have been wrongly institutionalized at mental hospitals, and it can even be fatal if we don't get the right treatment."

If you know someone with an auto-immune disease, unless we ask you, please do not give us advice.  We will be more than happy to answer any questions you have to the best of our ability.  We may not always know the answers as many of us still have many of our own unanswered questions and we are still learning ourselves.  The best thing you can do is listen, educate yourselves, try to understand, and support us!

~

You can follow Mary through the links below!
Facebook: https://www.facebook.com/thyroidsupport/
Twitter: http://twitter.com/ThyroidMary
http://www.thyroidcoaching.com/
http://www.thyroid-info.com/
http://thyroid.about.com/