Thyroid slowly crapping out. Do I have to wait for it to get worse?

December 18, 2018 6:21 PM

I'm pretty sure I'm in the early-to-middle stages of a significant decline in thyroid function. Two doctors have said they agree, based on my symptoms and family history, but said I'll just have to keep watching and waiting until it eventually gets bad enough to treat. Obviously I'm not thrilled with this, as I'm already experiencing frustrating and uncomfortable symptoms. I would love some advice on whether there's something I'm missing and/or ideas to try in these months before I can see an endo. Details inside.

(Let me start with the disclaimer that I know you guys aren't my doctor, and that I do have plans to find a good endocrinologist when I get back from some holiday traveling in February. Thanks so much in advance to anyone who reads some or all of this!)

Basics
I'm 22 years old, female, 5'8, 220 lbs. I don't smoke but I drink alcohol occasionally. My mom's side of the family has a very strong history of thyroid issues, so I've always assumed this might become a problem for me eventually. She herself is hypothyroid and takes medication, and all 3 of her siblings have been put on meds for it/treated at some point as well. One of her siblings' two daughters (my cousins) are already on thyroid meds at the ages of 9 and 13. My maternal grandmother has rheumatoid arthritis and autoimmune-related thyroid dysfunction.

Health history
At seventeen I went through a bout of anorexia where I lost 35 pounds in less than two months. I guess part of me wonders if this damaged my metabolism somehow? I came down with a case of mono the following year in college, and I can't say my energy levels have ever fully returned to what they used to be. Not sure if it's just a coincidence/part of not being a teenager anymore, or if there's a connection there.
I was diagnosed with OCD at sixteen, but after therapy and medication (which I continue to take) I no longer experience symptoms. My parents didn't believe in ADHD when I was growing up, but I got diagnosed at 18 and have taken some form of stimulant medication ever since.
Within this last year, I moved to a new city and got a checkup for the first time in a few years. I promptly found out I had developed high blood pressure; my first readings were somewhere around 146/92. I was put on low doses of two different BP medications and told to monitor my blood pressure regularly. It's since come down to a high-normal level on the most recent tests, but it's a constant worry for me and I'm still having to take these medications every day.

Thyroid tests
I first had my thyroid levels tested in 2015 when I was 18, because I still felt exhausted all the time 6+ months after recovering from mono. My TSH at the time was 1.49, with a free T3 of 2.6 (260) and a free T4 of 1.00. In December of 2017, my TSH tested at 1.70. By July of 2018, when I had a "TSH w/ reflex to FT4" test (not sure what that means beyond just TSH) and the result was 1.54. The most recent test was last month and my TSH had climbed to 1.97.

Symptoms
Weight gain has been the most obvious/significant symptom; I gained about 50 pounds over the last year and a half, going from a size 6-8 to a size 14. As a taller person who's always been heavier than I look/high in muscle mass, I think maybe I didn't notice or worry about the weight gain until it had gotten pretty significant. I've since lost about 15 pounds, and am feeling like this one is definitely within my control, but the rapid weight gain itself was a bit of a shock. I'm not a binge eater, and although I don't eat the healthiest diet 100% of the time, I do cook a lot at home from scratch, only buy whole grain breads, etc. I suspect some of the weight gain was due to alcohol, of which I've significantly cut down my consumption. It definitely feels like my body wants to hold onto every single calorie I put into it as of late.
The symptom that's been most bothersome to me (and the one that makes me think this is all definitely thyroid-related), other than the weight gain, is the sudden appearance of what two doctors agree is probably a goiter. I hate the way it looks and I really hate how it feels. It feels like there's a constant sense of pressure/fullness around my neck, and I can't stand to wear high-cut tops or scarves anymore as a result. I'm embarrassed by it; I no longer allow men to kiss me around the neck/clavicle area (TMI?) because I'm so anxious about drawing more attention to that area. I desperately want this thing gone already; I feel like the Michelin man.

Other assorted symptoms/weirdness:
I've been noticing a lot of brain fog and memory issues lately, more than is normal for my typical ADHD self. For example, if I get even slightly interrupted or distracted while talking, I'll completely lose my train of thought and have no idea what I was just saying. I'll also forget words or phrases that I know I knew at some point, but which now randomly elude me.
My hair has thinned slightly, though it's always been extremely thick so it's not super noticeable - I initially attributed this to the BP medications, but maybe it's my thyroid? My eyebrows have gotten a bit patchy as well.
I'm exhausted all the time, usually needing a nap to get through the day. I can wake up feeling tired after an 8-9 hour nights' sleep.
My muscles and joints ache, like, down to the bone almost? This is a brand-new thing that's started within the last month or two; it's most noticeable in my legs, especially when I lie down.

If anyone has any ideas or suggestions for me, or if anything I've said reminds you of your own experience trying to figure out thyroid troubles/mystery symptoms, I would be eternally grateful for the input. I feel pretty alone in this, not to mention unsure of the best way to advocate for myself and figure out what's wrong.

posted by second banana to Health & Fitness (15 answers total)

I need to be brief but I suggest exploring this site as a first stop: https://stopthethyroidmadness.com/

Skip the endo, see a naturopath or a functional MD

TSH test is worth almost nothing, insist on Free T3 and T4 tests

Test levels are not worth much unless lab reference ranges are included

Request and keep copies of all of your lab work

Do not settle for synthetic hormone replacement if you feel NDT could work better or if synthetic does not work for you

It is easy -- and our current medical profession makes it way too easy -- to lose years to insidious hypothyroidism

Fight for yourself
posted by vers at 6:37 PM on December 18, 2018 [2 favorites]

I couldn't help but notice from a previous question that you're in the Bay area, as am I. I've had a good experience with Peninsula Integrative Medicine.
posted by invisible ink at 6:47 PM on December 18, 2018

Best answer: The thing that stood out to me was your history of anorexia. Do you still restrict food or try to limit the amount you eat (eat less than you, in your heart, truly want to eat) sometimes? If so, your thyroid could very well be slowing down your metabolic rate. This may or may not be reflected in your thyroid function tests; restrictive eating can cause euthyroid sick syndrome which is different than autoimmune thyroiditis. I would get autoantibodies tested before starting on any medication, because taking thyroid replacement when it is not necessary does not do any favors for your heart or bone health.
posted by gemutlichkeit at 6:53 PM on December 18, 2018 [6 favorites]

Naturopaths are quacks. Please don't waste your time with one.
posted by twoplussix at 7:53 PM on December 18, 2018 [40 favorites]

Many doctors suspect that overweight women want thyroid supplements just to lose weight. When you go to a doctor, don't even mention weight gain/loss. Focus on other symptoms like fatigue, feeling cold, dry skin, hair loss, and cognitive symptoms. Not all doctors feel the need to wait until the blood tests indicate a deficiency; the numbers are set by humans, and in the US the bar for "deficiency" is much higher than it is in, say, UK. If you're in or near a major city, you might want to see a couple of other doctors.
posted by wryly at 8:14 PM on December 18, 2018 [4 favorites]

Best answer: I'm hypothyroid . It's SUPER frustrating that it's hard to get treatment and testing for this common condition.

In my state, naturopaths are allowed to prescribe hormones and not much else, so here they go after the hypothyroid patient market, especially since it's wildly underserved by the medical industry.
There are a number of problems with their beliefs about endocrinology, not to mention the extremely inadequate training they have (the blog I linked discussed that in very effective detail)

I recovered from a very disabling case of hypothyroidism in about a year or less of trial and error dosage experimentation with a clueless but sympathetic general practitioner. Your mileage may well vary, given your youth at onset. It can be very hard to find someone willing to treat aggressively.

Also, mono can knock you out for far longer than you may expect.
posted by twoplussix at 8:16 PM on December 18, 2018 [5 favorites]

Response by poster: Thank you all for your responses; looks like I've got some serious reading to do. As to whether I restrict food, I wouldn't say I still do at this point. I feel pretty well recovered from the eating disorder and pretty much always eat when I'm hungry/stop when I'm full. I'm making a note to myself to make sure to request an autoantibodies test to rule that out though.

I'm a Bay Area native living in LA now, but I'm going to be back up there for the next month, so thank you invisible ink for the suggestion!
posted by second banana at 9:01 PM on December 18, 2018

Look for an anti-aging doctor. They diagnosed my thyroid issues and got me back on track with natural thyroid supplements. Changed my life.
posted by summerstorm at 9:32 PM on December 18, 2018

Best answer: Hi, I have Hashimoto's Disease (as well as another autoimmune disease). I've been treated for the past 7-8 years on and off. This is the most common form of hypothyroidism, but it basically means a slow decline into hypothyroidism with some periods of normal thyroid function. (I'm 34 now, for reference.)

For the TSH, they're typically looking for numbers over 5 (see caveat below) to indicate hypothyroidism.

BUT, the TSH isn't (and shouldn't be) the end-all-be-all test. I had typical range TSH numbers (~3ish) but high antithyroglobulin antibodies back in 2012, and that was enough for my doc to put me back on Synthroid. But I already had an established pattern of thyroid dysfunction, so YMMV in terms of what your doctor does. For me, I had already been diagnosed with Hashimoto's and that was a signal that my function was going back down, and those numbers really didn't change much after going on Synthroid.

I would say it's definitely worth getting a second opinion. Synthroid is basically magic, when it's actually needed. You likely won't need anything else.

I will say, though, as someone who has fluctuating thyroid function (whose TSH numbers have gone as low as 0.04 on Synthroid), it's way less fun if/when your thyroid decides to get its act together and start working for a while. It's like you are way overly caffeinated (jittery, hyper, etc) all the time, and not even in a fun way.

As a person with Hashimoto's and an autoimmune disease, I do not do any special diets. My doctor has never mentioned that to me, other than a passing "eh, some people feel like this helps them but there's no solid evidence for it" type of thing.

And please, for the love of your health, do not go to a naturopath. See a medical doctor, bring along the list of your symptoms and describe to what degree they disrupt your life, and a good doctor will make sure they are doing appropriate testing. AND OF COURSE, bring your medical history, because I agree that your anorexia could be playing a part here!
posted by ancient star at 9:34 PM on December 18, 2018 [15 favorites]

Mod note: Couple comments deleted. Enough. AskMe's not for back and forth arguing. OP can judge answers for herself; but given the history of disordered eating, let's lay off the diet suggestions unless under medical supervision.
posted by LobsterMitten (staff) at 7:40 AM on December 19, 2018 [1 favorite]

As someone who's recently had a partial thyroidectomy, the procedure is waaaayyy less hassle and pain than suffering from Stupid Thyroid Tricks any longer. My circumstances are different — I'm older, and a bloke too — but if my experience is typical, it's much better than uncertainty.
posted by scruss at 9:11 AM on December 19, 2018

Just wanted to say that it is absolutely worth looking for a doctor who doesn't blindly rely on "reference ranges" but will treat your thyroid with your symptoms in mind. Reference ranges are established at a population level and vary by country; the "right" level for each person might fall in any part of that range. If the range is, say, 2-5, but you feel great at 2.5 and lousy at 3.5, it's appropriate to aim your treatment so you're in the range where your symptoms are addressed and not just so you show up as "normal" on the lab report. I would emphasize not only your personal history but also your family history, which is very relevant.

Oh, side note - from what I have read/heard from many years in Thyroid Funland, endos can be great or awful. Some of them are really willing to work with your body and find the right approach and some of them are very much in the "your labs are normal therefore you are fine" school. I found the best care with a GP who is, admittedly, a bit too prone to flog supplements for everything and "natural" this and that, but who also will really listen to your issues and work to make you feel better and not just show normal labs. I am generally very skeptical of "alternative medicine" (being of the Tim Minchin "do you know what they call alternative medicine that works? Medicine" school), but in some cases if you can find one of the GPs who lean a bit more "holistic" they will be more willing to work outside the "do what the reference range tells me, never mind the symptoms the actual person displays" box. (That said, I do take the various "take all the supplements!!" recs with a grain of salt and independently verify with other trusted sources before I drop too much cash on stuff, and anyone who tries to sell you on "natural" remedies (or worse, homeopathy) for actual serious medical conditions should be avoided like the plague that you'd probably catch if you listened to them. But if you go in with open eyes, it can be another avenue to explore.

Sometimes when advocating for yourself in the US it can help if you describe the ways in which your symptoms are interfering with the activities of daily life, especially the ways they interfere with your work. Also, some doctors respond better if you don't lead with "please prescribe me XYZ" but start with "here are my issues, here are the ways it is keeping me from functioning the way I need to, here is what I've done. I've heard that X and Y have helped people like me, do you think we could try that and see if it worked?" Also sometimes "my friend with the same thing told me X worked well in similar circumstances" is taken better than "I read on the internet that X is good".

Also, it is possible to have a problem not just with producing thyroid hormone but in either responding to it or converting it between forms. For me, taking both T4 and T3 is really helpful. I used to take natural (Armour thyroid) but after a shortage many years ago I have been stable and well treated on synthetics - just I need to have both forms, not just the synthetic T4 (synthroid etc). Some doctors pooh-pooh taking T3 because "your body will just convert what it needs from T4" but I suspect that I don't convert properly or efficiently or something because the combo works for me in a way that T4 alone didn't.
posted by oblique red at 9:51 AM on December 19, 2018 [3 favorites]

I have "borderline" hypothyroidism (based on my TSH levels), and feel SO MUCH BETTER since starting medication. So I sympathize. I found that there is a lot of variation across endocrinologists in terms of what they consider abnormal levels, what they're willing to treat, etc. If you're in the LA area, I highly recommend Dr. Ruth Russell at Cedars! She's pretty awesome, although beware - she's always running ridiculously behind and I end up waiting way past my appointment time to see her. But totally worth it!
posted by scalar_implicature at 10:47 AM on December 19, 2018 [3 favorites]

Check out Mary Shomon on Verywellhealth.com. She has done extensive research and produced several books on thyroid diseases. She's down to earth and has excellent advice.
posted by Enid Lareg at 2:01 PM on December 19, 2018

My thyroid issues were brought up by a GP during a yearly physical, when she felt an enlarged thyroid. She sent me to get a sonogram on my thyroid, get some blood tests, and then referred me to an endocrinologist. I felt tired at that point, but my T4 and TSH were 'normal'.

During the months between seeing the doctor and then getting to the endocrinologist, I could feel my neck getting bigger. Endocrinologist decided I had a goiter, and performed a biopsy (benign). He drained the fluid from the goiter, but since my blood tests were normal, no medication. He recommended yearly sonograms and blood tests to monitor the thyroid.

About a 1 year later, I moved and found a new endo. I could feel my neck swelling again, and other people noticed it too (!!). Again, my levels were 'ok', and I had the fluid drained from the goiter. Like the previous endo, it was recommended I have yearly sonograms and blood tests.

1.5 years later, I'd moved again, and found a third endo. He said I could continue to have the goiter drained every year (involving pokes with very long needles), or have surgery. Decided to have a partial thyroidectomy, which removed the goiter (normal neck again!). the original thought was that I wouldn't need medication since I still had part of my thyroid (it's a 50/50 chance). But, 5 or so months after I began having the symptoms you describe; brain fog, patchy eyebrows, hair loss, weight gain, fatigue, cold all the time. Went to my current GP, she ran blood tests, levels were definitely not normal - she started me on generic synthroid for hypo-thyroid. Still working with her to get to correct dosage, but I feel 10 million times better.

All of this has taken me 5.5 years! Some things that were helpful to me:

-Keep copies of all medical records from all doctors. Keep contact information for all doctors written down. Very
useful when you see a new doctor, and need to have records sent from another office.
-Bring a written list of symptoms to doctor visits
-Use language like 'This is affecting my performance at work/school, and people are noticing'
-A lot of quackery exists on thyroid message boards and sites, be very skeptical! They're good for venting, but be
wary of anything else.
-Ask lots of questions when you see an endocrinologist!! All of mine were always overbooked with patients,
running behind and overworked - they may not remember to explain every little detail.
-A good female GP was important for me (I'm female). She can do the fine-tuning of my dosage levels, and I feel I'm
being taken seriously when I bring up symptoms, or say 'this isn't working'.
-This is a slooooow process, and double-sucks when you're abnormally tired and brain-foggy. If you don't
already, give yourself permission to say 'fuck it', and do your bare minimum to conserve energy. For me, this
meant all my brain matter was used at work, and then I was perfectly ok to be a potato once I got home. Be
selfish with your time and energy!
-This is also a longer process when you have other health issues involved. For this reason, I'm going to doctors
that are part of a large university health system/teaching hospital. My records are now all in one place, and it's
easier to get referred to different specialists I need to see. I also trust these doctors, and know they are using up-
to-date information.

This is longer than I thought, but hopefully some of it is helpful!
posted by shinyshiny at 7:09 PM on December 19, 2018 [3 favorites]