Tuesday, January 12, 2010

thyroid updates

So I went to my family doctor recently for a check-up and my thyroid bloodwork.

The bad news is that my thyroid is out of whack again, and the even worse news is that Armour thyroid is no longer producing the natural T3 medications that are so much more effective for me.

What the heck? What I am supposed to do for meds now?

Another frustrating thing is that if your TSH is higher than normal for you....yet still within the range of "normal" the docs go by.....they won't change your prescription.

My NP (nurse-practitioner) listens better than most, and she knows I have a long history of trying to establish the best TSH level for me. She knows I feel best when my TSH is under 1.5 (preferably more like 1.0), and that if it gets up around 2 or more, I start experiencing more symptoms like fatigue, cold, and weight gain...all of which I've been having again.

My level this past test was 2.4, but her hands are tied. She can't up my prescription when my levels are still in the "normal" range.....even though they are not in the range that is optimal for me and which keeps me from gaining weight.

And furthermore, if I stay in her care, I have to be on all levothyroxin, a T4-only medicine, instead of on the combo of T4 and T3 etc. meds that come in Armour. AND in effect I would be getting an even lower dose, because she didn't raise my levothyroxine dose to compensate for the loss of the Armour because my TSH is still within "normal."

Augh. I am so frustrated with this. She really is better than most docs I have had, but it frustrates me no end that they are required to rely on this TSH test so heavily and completely discount symptoms as a guide. My T4 and T3 levels are "normal," but just barely....but that doesn't matter, because they ARE normal, and so is the TSH. Doesn't matter if you are experiencing symptoms and you've experienced a deterioration trend in your levels....you are either normal or not, and that's that.

Here we go again with the binary approach in medicine. You are either normal or abnormal and there's nothing in between. If the cutoff is 140 (pulling a number out of the air for demo purposes), you are normal at 141 and no changes need be made, but you are abnormal at 139 and changes should be made. There's only two points difference, for crying out loud! But one is above an arbitrary cutoff and one is below it, so it doesn't matter.

My test results are clearly trending negatively and I'm experiencing more symptoms.....but because I'm still marginally in the normal range, they aren't going to change my dosage.

This frustrates me so much. If they care so much about my weight (she suggested briefly that perhaps we might think about "carving off a few pounds".....ugh, I am NOT a turkey), then they ought to be LISTENING to me about the one thing which DOES help with my weight.

I don't really lose much weight when my thyroid levels are more well-regulated, but I stop gaining and am more easily able to keep my weight steady. Isn't that a worthy goal? The last thing she wants is for me to gain more weight....but she won't do the one thing which is most effective at preventing that.

Now, I'm making her sound like an ogre, which she really is not. She's been more sympathetic and listened more than a lot of docs I have had, and she's a genuinely nice person. I was unhappy about her bringing up the weight loss thing, but she backed off quickly when I reminded her that my history showed that this was the fastest route for me to actually gain weight and if we wanted to avoid me that, dieting was the worst thing I could be considering. She acknowledged that I was the person who knew my own history best and what was most/least likely to work for my body. So that was something, anyhow.

Also to her credit, she knows I feel strongly about the whole Armour thyroid thing and about titrating my TSH levels more carefully. She said HER hands were tied, but suggested that I might consider going to see a local naturopath for further consultation. There are some alternatives for Armour out there (according to the thyroid websites) but she is not allowed to prescribe them; she thought perhaps the naturopaths might have access to them instead.

So I guess that's what I'm down to. Personally, I'm a bit leery about seeing a naturopath. I think some are okay and have decent training, and I'm okay with considering some alternative modalities of care. I'm not always convinced every alternative modality works, but I'm open to considering some. I figure I can always say no if it sounds too "woo-woo" for me.

[To my surprise, I actually have found a couple of "alternative" modalities -- like chiropractic and acupuncture -- pretty darn useful and effective for me, so I try to at least keep an open mind to considering other forms of "alternative" care.]

On the other hand, I do think there are some nutcase naturopaths out there, and some "alternative" modalities are potentially harmful. Just because one alternative modality works for me doesn't mean they are all going to, nor that they are going to be perfectly safe. And the science part of me squirms a bit when considering some of this stuff. I'd rather have some really good studies showing me what's effective and what's not, what's safe and what's not.

On the other other hand, though, traditional allopathic medicine has been mostly unhelpful for me in dealing with this thyroid stuff, and right now I feel like I'm stuck between a rock and a hard place and don't have many choices left. Stay with my traditional practice and have my thyroid needs undertreated, or go try an alternative practice that might meet my needs better but which might also try to rook me into some bizarro stuff.

After thinking about it, I think I'm going to check out a couple of local naturopaths who are trained in both allopathic and naturopathic medicine and see what they say. I'll be taking along a healthy sense of doubt and ability to say NO, never fear, but I know I need to figure this thyroid thing out better. I know from experience that this thyroid thing is the most important thing to keeping me healthy, so the bottom line is that's just GOT to get addressed better.

Levothyroxine may be the "accepted" med in the allopathic world, but it's not the better med for me, and I know I'm incredibly sensitive to even very small changes in TSH levels. If I have to go to a more "alternative" practitioner to get my needs addressed adequately, then so be it.

I'm just pissed as hell that it's come to this. UGH.

23 comments:

La di Da said...

My sympathies. I've had a similar experience with thyroid. My old GP said my thyroid was normal, but I felt like crap when my TSH was 2.5. My whole system seemed to have crashed (and I turned out to have pernicious anemia and vitamin D deficiency as well). I get desiccated thyroid from a compounding pharmacy. I wonder why they can't prescribe it when it's the same thing?

I can't even get my T3 tested. The pathology labs here test your TSH and if it's 0.05 - 5.0, they write a note on your results saying "normal - T4 and T3 testing unnecessary".

Normal doesn't mean IDEAL!

CTJen said...

what an entirely messed up situation! I've experienced symptoms of a sluggish thyroid in the past, only to be told by "regular" doctors that since my thyroid, while on the very low end of normal, is "normal" there's nothing they'd do for me. It makes no sense. I think my thyroid might be acting up again, so I've got an appointment w/ my naturopath for next week.

I started seeing him last spring to address some digestive issues I'd been having and which were worsening. He diagnosed a gluten intolerance, where a GI doc just shrugged at my symptoms and told me not to worry. I feel a thousand percent better now that I'm off the gluten.

I would highly recommend a naturopath, especially if you have gone as far as you possibly can with "standard" medicine.

Best of luck to you. :-)

Lisa said...

I'm sorry you're having these troubles. Hope you get some resolution and a sympathetic new care provider. (hugs)

Jen Anderson said...

Maybe you should see an Doctor of Chinese Medicine instead. They may be able to suggest some herbs and your acupuncturist may be able to corroborate their diagnosis.

I have a spleen chi deficiency which means my body doesn't deal with dampness well which leads to migraines on rainy days. It sounds so crazy that I can't say it out loud without rolling my eyes, but 2 separate practitioners diagnosed this and the herbs they suggested have led to less migraines.

Anonymous said...

What range is she using for your TSH and T3/T4 levels? There are more recent ones out there that are recommended by endocrinology groups (like ACOG, but I can't remember the name) that are tighter than what most doctors use, even some endocrinologists. If you are able to find the newer recommendations, that may "untie" her hands if she is using the old recommendations. Also, I have heard that iodine (as in iodized salt and seafood) is helpful with thyroid issues, but I don't know any more about it than that. I have Hashimoto's thyroiditis, and have had issues with endos who don't really seem to take into consideration how I *feel*, when looking at my levels. I am 37 weeks pregnant, and my current endo increased my meds, telling me it would make me feel much better! Thankfully, he did not feel his hands were tied- he specifically told me that my levels were within the normal range, but he wanted me more on the upper end of normal rather than the lower end (where I was). Refreshing! Good luck!

Adirondack Autumn said...

I asked my endo about the Armour products and she said that they were very hard to titrate...requiring multiple labs and such. at the same time she believed me without a qualm on my experiment with generic levothyroxine, my labs stayed fine but my digestive tract well...it slowed to a crawl. She wrote for real synthroid without a second glance.

I think a tiny part of what may be going on is that it's an NP not an MD/DO, she may have to stay in tighter parameters per her supervising docs so she can't up your synthroid until your TSH rises out of parameters or she'll get bit in review? Bet she can't write meds for things non recommended by the FDA either(ex. cytotec for labor)

I don't know how wide a choice in endocrine docs you actually have, if you can seek out an Osteopath specializing in endocrine maybe you'll get a more open minded approach?

Jessica said...

You probably already know of this, but I was reading my local paper today and they posted an article about Armour alternatives. I can't find the article/Q&A on their website (peoplespharmacy.com), so I will type it for you.

Q: You have written about the difficulties some patients have in getting specific doses of Armour Thyroid. Many of these patients might consider having dessicated natural thyroid compounded for them. At our compounding pharmacy, we have been formulating all the strengths, including some very customized versions. The prescribing doctor should write the prescription as "natural Compounded Thyroid Dessicated." Your readers might request a Certificate of Analysis, which would provide the guarantee that the compounding pharmacy is using a USP powder. This would have the same T3:T4 ratio as the commercial products.

A: We have heard from several pharmacists who are compounding thyroid hormone. Thank you for suggesting an alternative for those who can't get the appropriate dose of Armour dessicated thyroid during the current shortage.

Carolyn said...

Wow. This post makes me all the more grateful that I have a doctor who adjusted my L-thyroxine even though my TSH was normal (like you I was having symptoms though my TSH was 3.4 and considered normal). I wonder if it's a state law that they can't adjust your meds when your TSH is normal? Thyroid issues are so not fun. Big squishy loves to you while you work through this.

Pampered Mom said...

FWIW the local naturopaths aren't really all that out there - they're just more likely to seek out things like dietary adjustments, supplements, etc. To me they seem a lot like the allopathic sorts, but instead of relying on pharmaceutical solutions they might go with a supplement.

There's an Iodine Yahoo Group out there that might be something you'd find helpful.

SuzyBear said...

Armour thyroid IS available. Even when others said it was in short supply my local Walgreen always had it. A few weeks ago I read on one of the biggie thyroid blogs (either Mary Shomon's or Stop the Thyroid Maddness, I forget) that stores that used to be out now have it back in stock. You may have to get a 60 mg tablet and have it cut in half if your dose is 30mg if your store doesn't have 30's, but it IS out there. Just call around the pharmacies in your local area and I'm sure you'll find it.

As for the rest of your post - been there, done that, still argue with the doctors at every turn even. Mine doesn't want to treat if the TSH is still under 10. Yes, 10!! Criminal! Just about every doctor in this city, including the endocrinologists, follow the same protocol so switching docs won't help. One of these days I'll find a doc who will treat us hypothyroids the way we should be treated.

Kat said...

I don't know which state you live in, but if you see a licensed naturopathic physician, you are less likely to get a quack. You can find one through the American Association of Naturopathic Physicians. RLC labs makes a natural thyroid called Naturethroid. There is a shortage, but it is supposed to be over soon. I have been ordering natural thyroid from Canada during the shortage.

BettySue said...

The allopathic doctors became what they are because of donations to med schools by the big Pharms, not because of science. Many herbs can help many conditions better than allopathic meds because, like natural birth, our bodies were designed to work with them.
For the thyroid, one more natural approach would be to take herbs (such as kelp and black walnut) that would make you thyroid work better instead of taking replacement meds taht make you dependent and will eventually make your thyroid quit working. They help you heal instead of treating your symptoms.
I hope you have good luck with the naturopath.

Paper Raisins said...

Have you thought of checking out a Traiditional Chinese Medicine Doc?? ...if you have them in your area. I've a list of symptoms/issues, many meds and a thyroid that despite being 5 times the natural size, the docs will not prescribe anything for it because it comes out "normal"-ish on the tests. I've had great success seeing my TCM doc via diet, exercise, suppliments and acupuncture.

Just a thought! :)

Kissing the Prince said...

I'm sorry you have to go through hoops to get the treatment you need.

Tanya said...

I am also on armour thyroid. While supply is down, it is still being manufactured. I had a hard time finding it a couple of months ago, but seem to be ok for the time being. www.armourthyroid.com has a window pop up about the manufacturing problems (which are totally the FDAs fault).

I would find another care provider. My doctor actually listens to me and helps me keep my TSH between 0-1.5. This last time it was as close to zero as it could be without being zero and she did not suggest lowering my dose. I love that she listens!

Anonymous said...

I am the anonymous commenter that mentioned the newer reference range for TSH. I found that the American Association of Clinical Endocrinologists (AACE) recommends that the range be narrowed to
0.3-3 . I don't know what your levels were, but you might want to take this information to your NP, if the level is above 3.0. Here is an article about the newer range.

http://thyroid.about.com/cs/testsforthyroid/a/newrange.htm

Jen

Anonymous said...

Thought you'd find this article on obese pregnant woman being told zero weight gain is best, of interest - I just ran across it today.


nytimes.com/2009/12/15/health/15obese.html?_r=1


sarahthedoula

Ms Luey said...

Love your blog!

Imagine your reaction if you weren't educated about evidence-based research and weren't aware of the ways in which science can, in fact, help us immensely. Wouldn't you then, faced with the ridiculous binary mindset of modern medicine, become so frustrated with science-based medicine that you were tempted to give it up completely?

This is how modern medicine loses people to the more far-out and unhelpful (or downright harmful) alternative medicines. People get fed up with science-based medicine and they go completely in the opposite direction. Some alternatives are beneficial or at least harmless, but this is not the case for all. I wish that modern medicine would realize how much this approach is harming the public's faith.

Well-Rounded Mama said...

Thanks, everyone, for all your comments!! I read them all, every single one.

Anonymous, my NP knows about the lower recommended TSH range from AACE, as do I. The reference for "normal" on the lab sheet does not use it but I might be able to convince her to treat me at diff levels if I was over the AACE recommendations. Alas, I am not. My level was 2.4, and the AACE recommendations still consider anything up to 3 as normal. Problem is, it's not normal for ME.

As far as seeing a traditional Chinese medicine doctor, I actually already see one. I just see her for acupuncture and up till now have not consented to using Chinese herbs at all. I find acupuncture incredibly helpful, but as I've mentioned, I'm leery about taking herbs. I do believe they can be powerful medicines.....and I generally prefer my powerful medicines to be thoroughly tested and vetted first. So up till now I've always said no to Chinese herbs.

I will still be consulting the local naturopath and I imagine the naturopath and my acupuncturist will be consulting with her as well. We'll see what we come up with.

I'm hoping that the naturopath will be able to get me Armour through a local compounding pharmacy. My NP seemed unable or unwilling to do that, but I'm aware of the compounding pharmacy option so I'm hoping to do that soon.

I'll keep everyone updated as we move through this and try to solve it. Thyroid issues are SO important.

Carolyn said...

I just picked up a book that you perhaps may be interested in. "Living Well With Hypothyroidism" By Mary J Shomon. As well educated as you are on Hypo issues you may have heard of it - but just in case you haven't I thought I'd mention it. I'm currently reading it and have found it to be very well researched, with a lot of excellent suggestions on avenues to pursue when your doctor says "you're fine" but you still don't feel well. So far my experience reading the book has been very validating and left me going "I knew that was connected!!"

Margherita da Fiorenza said...

I know this is coming late, but in case you are still looking for a solution on this- my doc switched me from Armour to a combination of levoxyl (T4) and cytomel (T3). It has been working just as well as the Armour did for me, and I also did badly on T4 alone. I highly encourage you to look into this as an option. Good luck!

moirae said...

That stinks. I'm going through a hyperthyroid problem and my TSH is currently 3.5ish and I pointed out that I'm freezing cold and that in 2007 (b4 I had post partum hyperthyroiditis) my levels were closer to 1.77 and they actually said okay, take less meds every other day. I'm also being treated for vit D deficiency, though my understanding is that it won't make you feel better for being treated.

Anonymous said...

I'm medically in the same boat as you. Technically "normal". I found a NP who will order tests to monitor my levels and I found a thyroid supplement online. It is Dr. Ron's, 30 mg of grass-fed bovine thyroid. It has been keeping me in the 1.something range for about 3 yrs now. Maybe that might be an option for others?