Newly diagnosed with hypothyroidism, and overwhelmed with how much I don't know. Bonus: help me find a doctor in Washington, DC who I can trust?
August 17, 2012 3:22 PM   Subscribe

Newly diagnosed with hypothyroidism, and overwhelmed with how much I don't know. Bonus: help me find a doctor in Washington, DC who I can trust?

I was just diagnosed today with hypothyroidism-- for those who know more than I do right now, my TSH level is 6.27, and the lab range is 0.35-4.50. I'm 26 years old, my sex hormone levels are all normal, and they're checking my antibodies next time. (I had gone in for PCOS screening due to increased body hair growth among other things, and they checked my thyroid just in case.)

Now that I have the diagnosis, I'm both surprised and relieved that my constant fatigue, intermittent depression, and forgetfulness might not be due to laziness, lack of motivation, and general stupidity. I have been very, very frustrated with myself for years, increasingly in recent months. I had started to think I was just not as detail-oriented, driven, and "on it" as I thought I was. For me, this meant revisiting my own ideas about who I am and how to be in the world. I know that sounds melodramatic, but that is how I felt.

I'm trying not to get my hopes up high, but obviously, this diagnosis holds a lot of hope for me. I'm not worried about the 15 or so extra pounds I've carried around for so long. I just really want this cloud to lift.

The nurse practitioner I'm assigned to at my endocrinologist's office wasn't super helpful. I met the actual doctor once at my first visit for about 3 minutes, only so he could confirm which tests were being ordered. This office seems very into making money as quickly and efficiently as possible. While I respect the business model, I want to find a doctor I feel good about. Can you recommend a good doctor in DC/MD/VA that specializes in thyroid disorders?

At this point, I know almost nothing about this condition, I have so many questions, and I don't know anyone with hypothyroidism. So while you are not my doctor, here we go: how common is it to have a thyroid issue at 26 years old? Have I had it since childhood? Will I have it forever? Is it genetic, and should I encourage my twin brother to get tested?

Does my daily dose of adderall play a part in this? How optimistic should I be that the symptoms listed above might fade away? What about the symptoms that pointed to PCOS: erratic but usually low sex drive, unpredictable periods, and body hair growth?

Should I change my diet? Is it a good idea to seek natural remedies, or is that irresponsible and a good way to make matters worse? Could this just go away on it's own? What has been helpful to you in treating/managing/coping with hypothyroidism? What am I missing?

Also, to anyone read this entire post without giving up, and especially to those who respond, thank you. You are the best. Really.
posted by picapica to Health & Fitness (24 answers total) 15 users marked this as a favorite
how common is it to have a thyroid issue at 26 years old?

I don't know how common it is, but I'm 28 and my unmedicated TSH levels are pretty similar to yours.

Have I had it since childhood?

According to my excellent internist, it's pretty common for thyroids to slow down as people age. I was getting regular yearly blood tests for about 5 years, so you can watch my TSH levels go up and up and up from low-normal to above-normal from about age 24 to age 28.

Will I have it forever?

Probably, but my internist says that it's not unheard of for your thyroid to kick back in for some reason or another. A good doctor will recommend that you get your levels check about 3 months after you start taking synthetic hormone (to make sure the dosage is correct) and then yearly after that.

How optimistic should I be that the symptoms listed above might fade away?

Personally, taking synthetic thyroid did not turn me into Gwyneth Paltrow. I'm still fat (although I'm not getting fatter). My energy levels in the summer are much better, but I'm still lethargic in the winter (I suspect it might be SAD).

What has been helpful to you in treating/managing/coping with hypothyroidism?

I guess it's just not a big deal for me. I take a pill every morning. I get yearly checkups by my internist/GP. That's about it.
posted by muddgirl at 3:29 PM on August 17, 2012 [1 favorite]

I just sent you a message. Let me know if you have any questions.
posted by anya32 at 3:31 PM on August 17, 2012

Oh! I kept forgetting to take my pill (foggy brain), so I got one of those daily pill organizers.
posted by muddgirl at 3:32 PM on August 17, 2012

As soon as I started taking pills (and I have been taking them for 30 some years) my fatigue, irritability, leg cramps, disappeared. It took me a long while to loose the weight that I had gained. My whole family has the disease, with onset at different ages. My young niece stated to take medication before her teen years, her doctor attributing the cause to radiation fallout from Chernobyl. There is some literature supporting this.

Don't hesitate to take the pills: there are no side effects and the generics are cheap. It does take a while to adjust the dosage, with blood test every few months until equilibrium is reached. Don't switch from one brand to another unless you are willing to take a blood test after a month: there is 10% or so variability of level of activity within the generics, but there the same variation in name brands.
posted by francesca too at 3:35 PM on August 17, 2012

Should have previewed: "started to take medication" and "there is"
posted by francesca too at 3:38 PM on August 17, 2012

I have so many questions, and I don't know anyone with hypothyroidism.

You totally do. It's exceedingly common. Most people take the tablet daily and get on with their lives with few or no side effects other than feeling massively better.
posted by DarlingBri at 3:39 PM on August 17, 2012 [1 favorite]

Mine was 45.6 and my MD wanted to wait and see. Mary Shomon is your guru, but do be aware that to the newly diagnosed, everything relates to your thyroid. feeling tired, crabby, fat, snappy, cold, hot--all because of your thyroid if you read enough forums.
posted by Ideefixe at 4:05 PM on August 17, 2012 [2 favorites]

Answering some of your questions:
-- It's unlikely to go away on its own. The good news is that the meds are cheap, easy to take, and have no side effects.

-- Yes, most of those symptoms will probably go away. After I started taking the meds, some symptoms went away quickly, and others took over a year to fully resolve. Have some patience with yourself.

-- It is genetically linked and your twin should get screened. After I was diagnosed, my mom told me that my paternal grandmother and several other relatives had it (which would have been helpful to know when I was going through all the symptoms before diagnosis -- thanks, mom.)

-- I stayed away from soy products for a long time after I was diagnosed, largely because I think they were partly responsible for how bad mine was. Now I eat soy more (but still avoid soy isoflavones.) No need to eat a special diet, unless you feel like it's addressing other health concerns.

-- I've been really happy with the synthetic thyroid and haven't sought out any alternative remedies. In my experience, it works really well with no side effects.

Also, you DO know people with thyroid issues. I discovered that when I was first diagnosed, a surprisingly large percentage of the people I told disclosed their own thyroid issues, hypo- or hyper-.
posted by gingerbeer at 4:09 PM on August 17, 2012 [1 favorite]

Agreeing that you probably do know people who have it, but if they're on medication, there'd be no reason why you would ever know.

I was diagnosed over 10 years ago when I was 27, and have been on medication ever since. I've had to adjust my dosage twice, once we got it settled.

I don't mean to belittle your concerns, but it really isn't that big a deal for most people who have it - it certainly didn't qualify as life-changing for me. I even lived in a developing country for a few years, and had no problem getting my medication.

Quite frankly, the condition itself is probably a significant part of why your feeling overwhelmed. When your levels are low, everything is harder to process and deal with than it should be. If and when you get your medication levels to the right level, the cloud will lift. It really will.
posted by scrute at 4:42 PM on August 17, 2012

Yeah, lots of people have thyroid issues. My dad had some a few years back, and I was surprised how often I'd mention it to someone and they'd mention that they were on thyroid pills too and they sure felt better. I think people tend not to mention it because the pills really do just work and it becomes a non-issue.
posted by Blue Jello Elf at 4:49 PM on August 17, 2012 [1 favorite]

Wanted to add: part of the reason you're feeling so overwhelmed at the news may be the hypothyroidism itself! Getting that leveled out will probably make this all way easier to cope with.
posted by Blue Jello Elf at 4:53 PM on August 17, 2012

I don't know anything about hyperthyroidism, but I got the best advice I've ever gotten about how to find a good specialist in your area from some previous question I asked on here.

Find the website of a local medical school, then find the email address of the dean of X (I guess your department would be endocrinology?). Email this person, thank them profusely (but concisely) for their consideration and ask for a recommendation for an endocrinologist, possibly one who specialized in hyperthyroidism, in your area. That's it. It might take a few days for this very busy person to get back to you, but I've done this several times now and ended up with a 100% response rate and truly great doctors.
posted by cmoj at 5:24 PM on August 17, 2012 [6 favorites]

Response by poster: Thank you so much everyone for your replies!

To everyone who has talked about the medication easing the stress of it all, I hear you. I know I won't be Gwyneth Paltrow (ha!). All I want is to return to what I thought was my normal state, which much more closely resembled Liz Lemon. Lately I have felt more like the dark side of Ralph Wiggum.

And cmoj: that is a fantastic idea. Brilliant. You win all of the things.
posted by picapica at 5:39 PM on August 17, 2012 [4 favorites]

Probable treatment (IANAD) = one pill first thing in the morning before you eat. Take any vitamins or calcium supplements at a different time of day. That's it.
posted by kestrel251 at 5:48 PM on August 17, 2012

oh, and p.s. If you have girl-parts, and get pregnant someday, you'll need to have a full thyroid panel done about every month. Your dose of synthetic hormone (levothyroxine is the generic) will probably go up a lot, and drop back after you give birth.
posted by kestrel251 at 5:50 PM on August 17, 2012

TSH is a measurement of pituitary function in inverse relation to thyroid function. A high TSH is indicative of primary hypothyroidism. To get a sense of your actual thyroid status, you'll want Free T3 and Free T4 tested, especially once you start on replacement hormone (it's not medication; it is replacement of the hormones your body isn't able to produce).

Thyroid hormones govern every cell in your body, from brain function to digestion. And not everyone does "well" on synthetic replacement, which is only one thyroid hormone out of 12 or so.
Read this for testing.
How to find a good doctor.
Mistakes we make.
What we've learned.

STTM site map.

Very worth a read: Gail’s Thyroid Tips.

If you're lucky, simple synthetic T4 replacement will work for you, though it may put you at risk for depression and osteoporosis. If not, there's a lot more information available on the www. Feel free to MeMail me.
posted by vers at 6:09 PM on August 17, 2012 [8 favorites]

I highly recommend Dr. Karen Myers at Washington Internists Group near Dupont Circle/Farragut for a thyroid-aware internist. She will literally sit with you and talk for 45 minutes or more, and pays as much attention to how you feel as to your lab test numbers.
posted by instamatic at 7:34 PM on August 17, 2012

I reccomend Dr. Ace Lipson.

I would avoid GWU's Dr. Joshua Cohen.
posted by jgirl at 7:55 PM on August 17, 2012

DarlingBri hit it on the nose - it's super super common (in fact, judging from one of mathowie's blog posts, I think he has it too). Definitely runs in families, so your brother should probably be checked out. You will feel better pretty quickly after you start taking the meds, and then it will become pretty much a non-issue. Every year you will get your blood drawn and your doc may change your dose slightly, but other than that you won't have to think about it.

That said, I'm sorry to hear that your doctor has been unsupportive, and I hope someone here can recommend a new one!
posted by radioamy at 9:06 PM on August 17, 2012

This is so funny-I was diagnosed about 3 years ago. If I faithfully remember my pill everyday, I'm great. Last year our Siberian Husky began getting snippy, languid, fat. Took her in, and guess what? SHe and I are on the same synthroid pills--only hers are blue and mine are white. The vet said they were totally the same pill, and since both are extremely cheap, I do buy them separately. It's changed both our snarliness :)
posted by msleann at 9:11 PM on August 17, 2012 [2 favorites]

Just confirming what has been said here already, and adding that since I was diagnosed about ten years ago my dosage has changed three times so you do want to keep on top of regular testing. I also find that avoiding soy helps, and eating well in general with lots of fruit & veg (big surprise there, ha). Read the details on the lengthy insert they give you with your pills, it has good info like not taking multivitamins or iron at the same time of day you take your thyroid meds.
posted by cali at 10:23 PM on August 17, 2012

I was diagnosed with hypothyroidism at 19 (actually a completely INACTIVE thyroid). I was already going to an endocrinologist for another condition, and he would check my thyroid levels semi-regularly, so I know that I developed the condition over time. Personally, I had a lot of the regular symptoms of hypothyroid (all those you've mentioned).. I've always been overweight and, at the time that I was diagnosed, I was really watching my diet and I belonged to a gym. But, I continued to pack on the pounds. After I was diagnosed (and this was my senior year of high school), I went off to college which was several hours away from my doctor. I would only get my blood tests done during school breaks, and that just wasn't enough. Being on Synthroid helped with SOME of the symptoms, but I don't believe that I ever actually got on to the correct dosage. Since I was away from home most of the time, it took several years to get on to a specific strength, but my doctor continued to tweak the amount that I would take per week. The constant fatigue, brain fog, depression, and forgetfulness made school really hard for me, and I couldn't understand how I went from being an excellent student to one who either failed every single class or just couldn't wake up long enough to drag myself to class. My doctor never really let me know what to expect.. as far as how I would feel physically and emotionally.. so, I felt really bad about myself when I started failing in all my classes, couldn't bring myself to show up for work, and just had trouble functioning at all. I blamed myself, and, of course, in certain ways, I had myself to blame, but I wish that I had a doctor who would have prepared me. All this to say: hypothyroidism (and thyroid conditions, in general) is extremely common and it's something that can effect you physically and mentally. You deserve a doctor who will listen to your questions and concerns and who will take the time to address them.. because dealing with a thyroid condition is often going to be a whole change of lifestyle (yes, in a lot of cases, it's something you will have to address for the rest of your life). If you hang in there [Admittedly, I became disheartened by my doctor, and, when my pills ran out.. I stopped taking them for both of my conditions. Do NOT do what I have done. My body has bore the brunt of my negligence both physically and mentally.], the symptoms will improve. Any that do not can be addressed with whomever you end up choosing as your new doctor.

As far as the major symptoms, a majority of them did clear up for me while under treatment: fatigue, brain fog, being able to concentrate.. as well as some of the physical symptoms. I never lost a significant amount of weight, but now that I have been untreated for a few years, I am at the heaviest I've ever been, which has contributed to a boatload of other health problems. Now, I'm starting to experience some of the symptoms my doctor would ask me about, including thinning hair, a non-existent sex drive, erratic periods (because I'm so heavy, I don't have my period for months and when I do, it's REALLY heavy. Sometimes I would have my period more frequently than normal.), and arthritis.

To answer you questions: First, we're only so familiar with your medical history and your particular case of thyroidism, which is why, ideally, these questions should be answered by a doctor -- bearing in mind that s/he may not know the answers, but s/he can make more of an educated guess based on your test results and history.
Thyroid conditions are EXTREMELY common. As I said, I was diagnosed at 19, but most of the people I know who have thyroid conditions were diagnosed in their 20s or 30s. My Mom was diagnosed with a mild hypothyroidism in her late 60s or early 70s. I think you can be diagnosed at any time. As far as how long you've had it.. think about the different symptoms that you have. You might have had it for many years or you might have developed it much more recently. I can't say for sure, but I would doubt that you've had it since childhood. I can't say for sure, but, yes, I assume you will have it forever. Depending on the severity of your case and other health problems you have now or may develop, I think a lot of hypothyroid patients have to have more frequent blood tests at the beginning while the doctor is determining your dosage of medication. Once your doctor finds that level, you probably would have a yearly check-up with a blood test checking your various levels. S/he might check for various other accompanying conditions every once in a while, but you do get to a point when you're on a maintenance level of medication and a maintenance schedule for check-ups. The hardest part is getting to that point! So, I think you can be extremely optimistic that the symptoms will go away. Just remember to take your medication! My doctor also was adamant that I shouldn't consume soy products. At the time, he never explained why. There are people who insist that Synthroid is not always the best treatment and that some hypothyroid conditions can be treated with diet and natural remedies alone. I was kind of interested in that, but my doctor didn't want to discuss how diet and/or natural remedies might improve my thyroid treatment. I'd be interested in what others on MeFi have to say about diet, supplements, etc. It's not necessarily irresponsible. The only thing that would be irresponsible is doing what I did: abruptly stopping any treatment without a doctor's approval. If you don't like one doctor, try another. But do try to find a doctor who will properly treat you and do follow their directions. Diet (and perhaps supplements) may be something that they will suggest to you. To answer your last question: I can't say for sure, but it's unlikely that this will go away on its own. More likely than not you will need to continue on maintenance treatment for the long run. But, that's for your body to decide (unfortunately!) and your doctor to determine based on the blood tests. I can't answer questions specifically about TSH levels because my doctor never took the time to explain my blood tests with me and what the numbers meant.

I don't know about the role genetics plays in thyroid conditions. Are you asking if it runs in your family? I don't know! My family thinks that my paternal grandmother might have had it (or another endocrine condition). I'm the only one in my family that I know of who was diagnosed with any major endocrine conditions. My Mom was diagnosed with a far less serious case of hypothyroidism a few years ago, but, in my opinion, she never exhibited any of the symptoms that I had. So, I can't necessarily feel that there is a strong family history of thyroidism in my family. As far as whether your twin should get tested.. On the one hand, it's one of the easiest set of tests, so I suppose it couldn't hurt. On the other hand, if he doesn't exhibit any of the symptoms, I don't think there's any reason to assume that he would have it. As your treatment kind of becomes old hat, you'll recognize what your symptoms were and how you feel before and after treatment, so you kind of get to a point where you can 'diagnose' other people. That's why everyone on MeFi is always like, 'get your thyroid checked!' because a set list of symptoms always sets off bells for us. Just keep an eye on your brother, and if he starts to experience some of the symptoms, you'll know what it is!

I don't know much about Adderall.. or why you were taking that. Were you taking it to overcome the brain fog? If so, MAYBE you were treating a symptom of the thyroidism and maybe after the Synthroid kicks in and the brain fog clears you'll find you won't need that medication. Or maybe not! I don't know why you were taking that or how that helps you. I don't think it CAUSED your thyroid problems, though.

Hang in there. It will get better. As I said, it might take some time, but a lot if not all of the symptoms will either disappear or improve. The symptoms that don't or that particularly worry you can be addressed individually once you are on something closer to a maintenance dose of Synthroid or levothyroxine, etc. All I can say is, it WILL get better and I wish you good health and luck. I'll tell you, I didn't know anyone who had this condition when I was in school, so I never had anyone to talk to.. Now, I know people who have it in varying degrees, and that has gone a long way in letting me feel much more at ease with the fact that I have this condition and understanding what it is and how it affects your life. I know that it's a struggle, but I also know that, if properly treated, it's something you can live with. I can't help you with finding a better doctor, but I DO hope that you find your right match. You deserve that. Remember, you're not a list of symptoms.. While we've all been on similar journeys, each of our bodies and treatments are different. I don't have any answers at all, but feel free to PM now or any time. I remember the moment my doctor told me that I had yet another health issue like it was yesterday and how lost, scared, and upset I was!

[The one thing I remember is that my thyroid would ache at the exact same time every morning and I knew it was Pill Time.. it was like a pet waking me up to be fed. Even though I haven't taken my meds in a few years, I still get that throbbing ache every few days..]
posted by Mael Oui at 11:00 PM on August 17, 2012 [1 favorite]

Email me, seriously. Hypothyroidism with clinical depression and anxiety here and my treatment includes Adderall, Synthroid, & Wellbutrin. That's my trifecta (which I also think would not work without Safyral, aka the best version of The Pill for me, and Lorazepam, my anti-anxiety meds. God, I sound like a chemically imbalanced mess, huh? Oh well). While I think, no, I know, a diagnosis of hypothyroidism can be life changing, I also want to caution you that this won't change things overnight. You should notice an increase in energy, a lifting of the fog, and it could be the final last push in your motivation to accomplishing anything from major life achievements to washing the dishes. For me, when these all came together, it was like the missing piece finally slid into place, but then I realized that, with my hormones and brain chemistry in balance, I needed to tackle things requiring genuine effort and my excuses were gone. I'm not saying that's the case with you, but I guess it's a cautionary tale. You could be both invigorated and overwhelmed by what you are suddenly capable of accomplishing. Seriously, the hypothyroidism diagnosis will change so much. You aren't lazy, stupid, broken, or less than, and please keep reminding yourself of that because while some people like me don't give a crap about popping certain pills every day, I know others who find it hard/demoralizing. Oh, one more word of advice, this is one of the very few drugs I take that the brand name makes a difference. That's not just for me, but for several other people I know, so you may want to ask your doctor to check off that "No substitutions" box. Also, you should take it when you wake up and wait an hour before you eat (or if you eat first, wait two hours before taking it). Those instructions sometimes get lost along the way. I feel like I'm babbling, but seriously, don't hesitate to email me (address is in my profile) & good luck!
posted by katemcd at 11:13 PM on August 17, 2012 [3 favorites]

How common is it to have a thyroid issue at 26 years old? Don't know, but I was diagnosed at 29.

Will you have it forever?
Probably - whatever has made your thyroid wonky is unlikely to just go away. Will your twin get it? Maybe - testing shouldn't be a big deal and could easily be added to his annual checkup blood panel. My younger brother has diabetes. We both have auto-immune-disorder type endocrinology issues, so it could be broader than thyroid, too.

How optimistic should I be that the symptoms listed above might fade away?
Once you start taking replacement thyroid meds, the symptoms should pretty much go away. If they come back, that's a sign that it's time to check your levels and tweak your dosage.

What about the symptoms that pointed to PCOS: erratic but usually low sex drive, unpredictable periods, and body hair growth? Not sure about this one - thyroid might be responsible for some of it, but you also might still have the PCOS diagnosis, which is a broader issue.

Should I change my diet? Eating healthfully in general will help you feel better - and exercise can really help with the related depression and tiredness. I had to avoid sodium when I was first diagnosed and before my levels evened out - too much salt (ie: dinner at a Mexican place) would make my throat feel tight and make it hard to swallow.

Is it a good idea to seek natural remedies, or is that irresponsible and a good way to make matters worse? Talk to your doctor first. A non-functioning (or under-functioning) thyroid is like having a flat tire. It's a mechanical thing, and requires a mechanical fix. Natural remedies are by and large not approved by the FDA, have little to no research to back them, and aren't reliable. Why mess around when the conventional treatment works?

Could this just go away on it's own? I think this is extremely unlikely. Again, it's a mechanical thing. You haven't done anything wrong, and the best thing to do is give your body the thyroid hormones it needs via supplements. You can do research on supplement options and types, but really - that's the end game.

What has been helpful to you in treating/managing/coping with hypothyroidism? What am I missing?
I've had two good, but very different, endocrinologists. One was a teaching doctor at a big 10 university, the other a doc-in-big-hospital kind of guy. Both spent time with me during appointments. If you're not finding that, keep looking. When first diagnosed I read a thyroid handbook cover to cover - it was similar to this one. I highly recommend finding a good reference book and reading it in stages. Endocrinology affects pretty much every system in the body, mental health to reproduction. The more you learn about symptoms and how the thyroid works, the better you'll be able to understand treatment options and gauge how your own treatment is working.

Also, treatment takes awhile to get going. Once you start supplements it'll take a month or two to really start feeling better, and if you have to tweak your dosage, might take longer. I had to go back once a month for the first 3 months, once every 3 months for a year, and am now down to annual checks. Docs are famous for under-treating thyroid issues because the symptoms so often mimic lifestyle issues - stress, not sleeping well, etc. If you're not feeling good, call and ask to have your TSH checked. It pays to be knowledgeable about your disease and be persistent about getting treatment.

This is not a big deal. Really. The important thing is to start your meds and start feeling better so you can figure out whether that PCOS "diagnosis" is real or not.
posted by hms71 at 7:10 PM on August 18, 2012

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