January 14, 2013

A Vent About Something, Followed By a Request for That Very Kind of Thing

I find it very, very discouraging to face dialogue such as this:

Friend: "Have you had your thyroid tested?"
Me: "Yes, and it was normal."
Friend: "Oh, but you can't rely on that test. You need to ask your doctor for a different test."

Aiiiieeeeee. Here are the two reasons I find this so discouraging:

1. My doctor has the medical degree and medical experience, but my friend's argument requires me to believe that this well-known thing about thyroid testing has completely escaped her attention and she and all the other doctors continue to order the useless test despite how obvious it is to the non-medical-degreed public that it doesn't work. My friend knows more than my doctor (or any doctor), and now I need to go tell the doctor so. I can't face it. Even if it's completely true and all doctors are less educated than my friend, I still can't face it.

2. How many tests will I need to have before my friend will finally believe that my thyroid is normal? If the more unusual test she wants me to get also reports a normal thyroid, will it turn out I need to have a STILL MORE UNUSUAL test? And then if THAT one ALSO says my thyroid is normal, will the response be that many thyroid issues escape notice by ALL tests so I still need to act as if I have a wonky thyroid? For how many years must I continue to insist to my doctor that something is wrong with my thyroid, before I am finally allowed to concede that it looks like there isn't?

I notice this mostly happens with the Popular New Ailment. We read about it everywhere, and we start thinking we have it---it's like how medical students famously diagnose themselves with each new disease they study. The power of suggestion then becomes a faith issue: we BELIEVE an ailment exists, and so no amount of evidence to the contrary is sufficient to shake that belief. The tiny percentage of cases where someone is right to persist in a belief is all it takes to fuel the enormous percentage of cases where someone is not.

I seem to have gotten off my original intended path, which was to say that although this kind of thing drives me nuts, I see how it gets started (because tests DO miss things and symptoms CAN be atypical, and then people spend unnecessary YEARS suffering something until it finally, finally, finally gets diagnosed), and in this particular case I would like to actively seek out stories and information of the VERY SORT that I usually avoid and dislike.

My mom has these symptoms:

1. Sudden unexplained weight gain
2. Feels cold all the time
3. Tired---can hardly get out of bed
4. Fighting off depression
5. Brittle hair
6. Itchy dry skin

Sounds like hypothyroidism, right? So she had her thyroid tested this past week, but it came up normal. I told her I was sure I'd heard thyroid discussed in the way that frustrates me ("Oh, the test for it is stupid and useless unless it gave you the answer you wanted---you need to tell your doctor what to do instead"), and would it frustrate her for me to find out more about it? And she said NO, it would NOT frustrate her, because in this case she would LIKE it if it's thyroid issues (or some other fixable problem) rather than losing-her-mind/becoming-elderly issues.


Rebecca is Fabulous said...

It sounds like hypothyroidism, yes, but my mother had all those symptoms before being diagnosed with Epstein Barr syndrome. Which I am not suggesting, but just saying that there may be other common ailments that fit.

Annabel said...

Have they tested for anemia? I don't know about unexplained weight gain, but all the other symptoms sound like severe anemia would fit the bill. And if it is severe anemia, make sure the doctor finds the root cause of WHY, as well as treating the symptoms with iron tablets.

Julie said...

I'd ask what "normal" looked like in the thyroid test. A lot of labs still use the older normal range of 0.5-5.5 for TSH. The newer standard is 0.5-3.5, but a lot of people (including doctors!) have found that some people don't feel well unless they're around 1.0 for TSH. I also had to add a T3 supplement in order to feel better.

So I hope this isn't "oh, you clearly need another test!" It's more, hey, that test is useful but "normal" lab range and "what feels like health in a human body" don't always overlap precisely.

Can you tell I've gone through many doctors to find one that was looking at BOTH the lab results AND my experience of my own body?

And whatever it is, I hope your mom feels better soon.

Anonymous said...

Has she had her heart examined? The cold/extreme fatigue things are symptoms my mother had with heart disease (blockages).

Wendy said...

This list of symptoms is exactly the same as issues a friend had recently that turned out to not be thyroid, but instead another hormone issue that was solved surprisingly quickly by putting the friend on birth control pills.

Jody said...

And I'm going to be the depressing one who reports that her MIL had all those symptoms, spent a YEAR getting various kinds of tests, and has finally had to agree with her doctors that it's just that she's getting old (just turned 70). I sincerely hope that it's something treatable for your mom but I think I read your request as one for all applicable data.

FWIW, my MIL was dealing with deep-tissue fat accumulation around the midsection in particular, and daily exercise seems to be very mildly alleviating that issue as well as lessening the cold in her hands/feet and fatigue. To some extent, increasing her fluid consumption has helped with skin (but not hair).

Amanda said...

My initial thoughts are to agree with Julie about what "normal" is. For some people a change that might still be within "normal" limits for one person throws another person off entirely.

Has she ever had her thyroid checked before? If so, can she obtain the old number and compare to the new?

I have fibromyalgia and RA and although my tests don't show up too far outside of the "normal" range, I am very sensitive to a slight change and they can make me miserable so I have to push for treatment even though I'm just on the cusp.

Tina G said...

This is one of those things that I have read also~ regarding the wrong thyroid test. from what I have gleaned from other people's anecdotal stories I'd suggest that she have her thyroid antibodies checked as well as her ferritin levels (anemia), her A1C (diabetes) and B12.

Hillary said...

Has your mom been tested for diabetes? Because weight gain, fatigue, dry skin, brittle hair and depression can be tied to diabetes too.

I hope she gets an answer soon!

Cara said...

I have hypothyroidism and I ditto the comment about normal lab ranges. There are other tests that can be informative about what your thyroid is up to but in my personal experience those are mostly used once you've been diagnosed via the TSH levels. Anyway, the doctor should have the actual number from the test.

Having been anemic at times also, I would agree that the symptoms are similar to hypothyroidism and if it were me I'd check that out too. B vitamin levels also, maybe?

AnnetteK said...

I used to work for an endocrinologist who often said that most general drs only check the TSH but there is a whole thyroid panel that should be looked at even if the TSH seems fine. In your mom's case it could be any number of things like decreasing hormones or diabetes so I hope her doctor does more digging.

Elizabeth said...

This also makes me tired and depressed. Probably because I have an abnormal thyroid, even though my doctor claims it's normal.

Lauren said...

If your mom's doctor is telling her to just live with those symptoms it's probably worth getting a second opinion. Maybe from an endocrinologist. I wouldn't want to let it go until I felt like someone had really investigated a bunch of possible causes.

Nicole said...

Hmm. I don't know. I do think people tend to self-diagnose, what with Dr Google and all, and that. If I was your mom I would probably want to get a different test or a second opinion, just to completely rule out a thyroid thing, but I have known a lot of people who think they have one thing, go to great lengths to test for it, and then it is completely something else. I knew someone who was SURE that they had celiac, and then when the tests came back normal, she was still SURE it was a gluten intolerance, and it ended up being something completely different.

So...I'm not helpful here.

Surely said...

Other things to check:
Do her hands tremble?
Does her tongue? (seriously)
Has her eyesight changed?

We originally thought Kevin had diabetes because the symptoms were similar. So there's that.


kate said...

Sounds like anemia to me as well, although clearly the symptoms are similar.

Brigitte said...

I have an older friend (mid to late sixties) with similar symptoms, as well as overall pain, that were COMPLETELY eliminated when she cut out all foods containing gluten. And this was many years before gluten-free became trendy.

Heather said...

I have not read this book yet, but I took a quiz in another book that asked about the exact symptoms you posted, and if the answer was yes then you were told to read this:


I tend to approach doctors and prescription medicine as a last resort, so if you don't want to approach the doctor this might be worth a read.

Anonymous said...

Also, has she had her vitamin d levels checked? She reminds me of my mom a while ago, and it turned out her vitamin d levels were alarmingly low.

-Beth @ themamabeth.wordpress.com

Melissa said...

I was just about to suggest vitamin D as well. It's amazing how many women are deficient. Of course, her doctor may have already checked all of this in her bloodwork?

jonniker said...

Julie said precisely what I would have said. It's not a NEW or a DIFFERENT test, it's that labs use antiquated information for whatever reason, and it's just weird. Also, yes, people are finding that the lab says one thing, but how they FEEL says another, so they need their medication adjusted to get their symptoms fixed, even though they are "medically" fine.

I have been through what Julie has. It's discouraging, yes, but it is what it is.

Sara said...

Just a thought--has she been tested for diabetes? My mom had some of those same symptoms before she wound up in the hospital with a blood sugar of 600. Sorry if someone else has already brought this up, but I have a migraine and can't read all these. :(

Kali said...

My first thought was diabetes, as others have also noted. But before I even had that thought, I thought "Why not bring the list to a doctor and let THEM figure it out?"

Just a thought.

Swistle said...

Kali- She has, of course, done that. But her numbers are normal. That's why I'm asking for other information, so that she can decide if she should go back to the doctor and request further tests.

Tracy said...

I'll echo the comment about what is "normal". Most labs say up to 5.0 for normal, but the american academy of endocrinologists have said since 2002 that it should be lower than 3.0. (I've had hypothyroidism since I was in my early twenties and I do feel best when my TSH is between 1 and 2. I have a doctor who agrees, thankfully.) I had all sorts of tests run after I was dx, but that was to see if there was a cause that should be treated differently, or if my thyroid just decided to stop working well.

Angela/antiangie said...

Has she seen an endocrinologist or just a GP? If it's possible to see/get a referral to an endocrinologist, I would do that. As others have said, thyroid issues are more subtle than just "normal range" lab results might show. It may be that she needs just a tiny bit of thyroid meds to tip her back to where she needs to be. And if it is diabetes, well, an endocrinologist is the person to see there, too.

Gigi said...

I have no idea what it *could* be, but I do know this...doctors are human and they make mistakes. I spent a YEAR under the care of doctors who *insisted* I had a fungal infection and treated it as such. When they finally sent me to a dermatologist, she told me it was psoriasis; which is what I told the first doctors I thought it was; and viola...problem solved.

laura said...

I totally get where you're coming from. I think most doctors tend to stick to the "easiest solution is usually the correct one", especially since people tend to self diagnose now more than ever.

Not that I'm an expert or anything, but there was a time when I was *hoping* that I had a thyroid problem that would explain my own symptoms, extremely similar to what you describe your mom has been going through. After lots of testing, here's what my doctor and I came up with:

1. Dehydration - I wasn't thirsty per-se, but I also wasn't taking in enough fluids. Being chronically dehydrated will make a person tired, and will also make their skin dry.
2. Protein deficiency - people who are chronically dehydrated cannot metabolize protein as well as people who aren't. Protein deficiency makes hair dry, brittle, and will make it fall out.
3. Anemia - This was the root cause of my fatigue, and the overall cold all the time feeling (also Winter in New England) I was anemic when I was pregnant and assumed that it had gone away. It didn't. I also wasn't eating a lot of iron rich foods.
4. Depression - Cold, dark winter in New England. ('nuff said!) - New England winter also made my hair and skin extremely dry when I wasn't dealing with protein deficiency and dehydration.
5. Weight gain - This particular symptom was the one that made me want to believe that I had a thyroid problem, because that would mean that if I were diagnosed, and able to get it under control, that theoretically I would be able to get my weight gain under control. The truth was that I wasn't tracking my intake, and due to fatigue and seasonal depression, I wasn't burning enough calories, hence the "sudden" weight gain.

Anyways, I'm not at all saying that this is what's going on with your mom, just that individual symptoms may not always be connected. Our brain wants to piece them together that way, because it seems like the solution should be simple.

Anyways, I hope your mom feels better soon!

Lori in Houston said...

The thyroid, pituitary and adrenal glands all work together. If one is off, another may be compensating by over / under producing? Also, maybe Lyme disease?

laura said...

Oh and I forgot vitamin B 12 deficiency. That went along with the Anemia.

Re: tests for all of this, they were able to figure out the B12 and the anemia from doing a simple CBC. Has your mom had this done separately from the thyroid testing?

Re: protein deficiency and dehydration, this was diagnosed through a urinalysis test.

Another key factor that helped my dr. figure all of this out is that I tend to have low blood pressure, which can be caused by dehydration, and can also cause fatigue.

Shalini said...

It sounds like you have a lot of medical advice from Internet doctors ALREADY, so I will GIVE YOU MORE. The thyroid thing HAPPENED TO ME! I had to go to an endocrinologist to discover it. It also happened to a friend. (OF COURSE IT DID.)

Alexicographer said...

I tenth (get it? second, third ...) the comment about TSH (the usual thyroid test) and normal range. She should get the actual number and if it is not under 3, should see an endocrinologist. Also, just in general (and of course this may be something you and she both do already), it is not good to accept "normal" from doctors, as more than once I have had things not be flagged as abnormal that actually were so flagged by the doctor's own lab (i.e. were outside the reference range). Good to get the real numbers (and relevant ranges) and check for yourself.

Otherwise I'm no help beyond saying I agree with what many others have suggested (vitamin D seems to be an issue, B vitamins can be...) and also of course that I hope your mom (a) gets useful answers and more to the point (b) feels better soon.

liz said...

Definitely check for Lyme; check the actual numbers on the thyroid test; check D, B12, iron.

Or in other words, what they all said.

Kenner said...

I'm supposed to be in bed and I'm too tired to do the research right now, but worried I won't have time to do it tomorrow, so here is what I thought of immediately - it DOES sound exactly like hypothyroidism, and has she been checked in the past (prior to this experience?) If it's the kind of hypothyroidism you get from when your body attacks itself (HASHIMOTOS! That's the term I couldn't think to Google!) I think the labwork won't show the deficiency right away (I vaguely remember there being some antibody level they can check that first increases and THEN decreases after it's finished messing with your thyroid production . . . it's been quite a while, sorry I can't remember any more than that!) In any case, it would be something to look up or ask the doctor for more information about! :)