More like “HashiLoco”

After my endo increased my meds this last time, I started to feel better. I had energy and even went a little crazy and cleaned my house! Then, I crashed. Started feeling tired again, mentally slow and all that jazz. So, last week I sent my endo an email saying something like “I can’t wait another month to get re-tested. I am feeling extremely tired again and I’ve not had a period in almost 2 months. Can you please re-test me NOW?”
He immediately changed the dates for the tests and I went yesterday to have them done. I was SURE that my levels were going to be out of whack based on the way that I feel and I was sure he’d have to increase my medication.
I was wrong.
TSH? Lowest it’s been in.. well, ever. (1.34)
Free T4? Completely normal (.91)
T3? (.99)
Every single number has drastically improved from when I was first diagnosed so why in the hell am I still feeling so tired? Why am I not having periods?
I’m beginning to think it’s all in my head.
The numbers don’t lie, do they?
Or do they?
I don’t know, honestly and I feel like I’m going crazy. The Bad Crazy.
I’ve made an appointment with a gynecologist to try to figure out what’s going on all up in my uterus (I assumed it was “low thyroid” because when I was low, I was skipping periods, but since that’s not it, WHAT IS IT? And NO, I am not pregnant.) I also made an appointment to ask to be tested to find out if I am “insulin resistant.”
I have been researching like crazy, but the more I read, the more confused I become. One thing is clear though– MY LEVELS ARE NORMAL NOW.
So what gives? It really must be “all in my head.” Because, I don’t know what else it could be at this point and I’m really tired of trying to figure it out.
I can’t even begin to type how frustrated/depressed I feel about this whole “my health” thing, but let me assure you if I did type it out it would be ALL CAPS AND FUCKS AND EXCLAMATION POINTS!!!!!!!!!!!!
I don’t know where to go from here and that’s why I’m writing here on my blog– because I know that so many of you who read here have gone through this (and are going through it now) and am hoping you can offer me some kind of advice. Have you had “normal levels” and still felt hypo symptoms? If so, what did you do about it? I’m feeling pretty damn desperate right about now.

75 thoughts on “More like “HashiLoco”

  1. Lia

    You know Y….what about depression? Maybe you are just depressed and don’t even realize it. Might be worth looking into.

  2. The Over-Thinker

    I was going to suggest what Lia already did. Because I’ve been there. And honestly, it was one helluva surprise to me. But then I got “fixed” and was able to get busy getting back-to-better.
    Thinking of you. And hope you get answers. And not a stupid answer like, “Hmmm we just don’t know.” or “This is a first.” Because those answers can just suck it.

  3. Trix

    Hi Y!
    I have Graves’ Disease which is the opposite of Hashimoto’s. But five years ago (or was it 6? I can’t remember) I had my thyroid ablated with radioactive iodine so now I am permanently hypo and on Synthroid and will be forever. FOREVER. :’( Dammit.
    Even when my levels are completely in normal range, I have NO energy and I am physically depressed (not sad and blue and crying depressed). All I want to do is sleep, I have no motivation, and I am exhausted all the time.
    There are two things going on with me: Clinical Depression that I have to treat with 2 antidepressants; and Epstein-Barr virus which flares up from time-to-time and there isn’t anything they can do about it. I guess it could be related to Chronic Fatigue Syndrome but no one really knows so I do the best I can to stay healthy and when I find the right energy level, I do everything I can to maintain it! Diet, exercise, etc. etc. blah blah blah. Even taking a calcium supplement helps me keep a stable mood. I don’t know why!
    Once you have an auto-immune dysfunction, I am fairly certain that other things are more likely to be out of whack. At any rate, I have to get blood checked every six-weeks still! Hopefully, one day I’ll find the perfect mix of Synth and will only have to go every year.
    So, my advice (I have a lot more, actually!) is get on an anti-depressant (Lexapro and Wellbutrin work well for me) and see if you don’t get a major improvement.
    I am not even 40 and I’ve been dealing with this for over 10 years. It is a roller coaster. I am on 5 medications now and I hate it. But I feel good and I can function now, so I guess it’s just something I have to do.
    Long comment, I know. But keep trying. You’ll find relief, I just know it.

  4. jess

    I’ve been on thyroid meds (Hashimoto’s) since I was 25. My thyroid levels are normal and I still have the lowest energy levels of anyone I know. I’ve read books that say “levels don’t mean anything!” “Doctors should treat the symptoms!” and I’ve been to endo’s who say everything from, “We can go down to the lowest end of the ‘normal’ spectrum and see if that helps.” to “Hypothyroid is over-diagnosed and it’s all in your head. You don’t need thyroid medication at all.”
    A year ago I was also diagnosed with mild depression and put on antidepressants which helped a lot with the fatigue but still only to a point. I finally just accepted that this is the way I am now and I try to find a balance between working enough to pay the bills, but not enough to overload me.
    I’m so sorry you’re going through this, Y. I know it sucks. I hope you find a solution.

  5. Mandee

    Just wanted to say that I’m sorry you’re having to go through all of this. My thyroid is fine (as far as I know), but I have my share of other chronic illnesses. Nothing totally debilitating, but enough to make me question my sanity at times. Several years ago, I went into a laproscopic surgery with the surgeon guessing I had endometriosis, but not being sure. My first question upon awaking in recovery, “Am I crazy?”
    Hang in there and be true to yourself and diligent in your right to have a firm diagnosis and feel better.

  6. anne nahm

    If I could give you a real gift right now, it would be that I could say this and you would believe it (forever and ever amen): Don’t waste another minute doubting yourself. It is not in your head.
    You know how people say STFU and put up the hand and that is the end of further conversation? Give yourself the hand in the mirror and the big old attitude laden NIMH. Maybe even the retro Jerry Springer neck wiggle. Not in my head, muthaeffa. Not in mah head.
    Sorry things are going badly. Clearly something is wrong and no one has figured it out yet. Take care.

  7. Katie

    I have mildly low thyroid function, but admittedly virtually no experience in this area. However, I do have several completely bizarre medical issues, so I do have a small measure of advice from the perspective of someone who had to fight to get doctors to take them seriously.
    If I’m not wrong, I think you live in Southern California. There are some really really great endocrinologists in your area. You may have to wait a while to get an appointment, but perhaps seeing someone who’s at the forefront of the research on this could help? UCLA is supposed to be superb. I had a really awful time with the neurology department at USC (how hard is it to understand that I do not have MS?), but I’m sure they have some as well.
    Also, I read the comments about depression and that seems like a reasonable thing to consider also. I’m not saying that you need to go get a huge prescription for antidepressants, but maybe a counselor, that way you have someone you can talk to. It seems like it would help with this feeling that you have that you’re being a burden to us (who come here to read you voluntarily) and your family.
    If you really feel something is not right, you’re probably right. You know better than any doctor what your body feels like now, and if your doctor isn’t taking it seriously enough or if you just want a second opinion, then do it, because the worst case scenario can’t be much worse than what you feel right now.
    Hope this was somewhat helpful. Sending good thoughts your way always.

  8. Jerri Ann

    My very own psychiatrist told me last week, “you diagnose from the exam, you use the lab work to work the medication dosages”…and with that, my GP said, just because these numbers are in the normal range doesn’t help, let’s get them in the middle of normal. For instance, and I have no clue which or what we were discussing or which or what the range was but her example was this: “if the range is 1 to 3 and your lab work shows you to be 1.2, then it is in the range, but if you still feel bad and have all the symptoms, let’s shoot for a 2 which will put you smack dab in the middle of the range, and we can even go to the higher end if we have to instead of 1.2″ Does that make sense?
    Basically she took me off of the armour thyroid and changed me to brand name synthroid. I don’t know if you know this or not but generic synthroid or (levothyroxin – spelling is bad here) do not necessarily work the same. And, with Hosi-loco’s, it is more important than ever to make sure you take synthroid brand name because it is a more stable drug than levothyroxin or armour thyroid.
    Did any of that make sense?

  9. margalit

    I can’t begin to know what is going on with your health. But to me it sounds like something is NOT RIGHT, and I hope that moving to another doctor might solve your problems. I do agree with other comments that depression might be exacerbated by what every physical problem is underlying your exhaustion. I know that happens to me all the time.
    As for insulin resistance, have you ever been on Metformin? Because it does help with the weight loss!
    Hugs!

  10. JenT

    Have you had your vitamin D level checked? I have low thyroid and while at one time my levels were normal, I felt like crap. I could barely pick up a fork, I was an ooze on the couch. They checked my levels and my D was 12. It’s supposed to be over 60 or some such. Now I take supplements and feel better.
    My endo thinks that waaaay more people are vit D deficient and don’t know it. Too much sunscreen, too much inside time, etc.

  11. Jerri Ann

    I’ve told you many times before how being treated for depression changed my life several years ago. And, I don’t take one medication nor did the doc just up the dose til I was a goon. He took 2 medications that work in 2 different ways and I take a moderate amount of each…and it works…and it does make a difference.
    As for knowing or not knowing you are depressed? You probably wouldn’t know. Now, hindsight that is, I know my depression started in 1988 when I was 19 and my father died. My depression was medicated in 2001 when I finally got my shit together and decided to make a better life some way, some how. I had been on prozac for almost 13 years at that time, it worked wonderfully those first few years after my dad died. Those years when Oprah was interviewing doctors who declared Prozac the sex drug..and all that crazy stuff. It simply quit working.
    I don’t take prozac anymore as I could never get a good dose to work after those years. That’s what I mean by this doc didn’t just keep saying “here, take a higher dose, you’ll feel better”, he started trying to help me find a happy place with the medication I needed and the doses I needed. I didn’t need to be high on Prozac to have my depression treated. It simply didn’t work.
    So, if your answer to “are you depressed?” is no, go directly to your local padded cell and do not stop at go to collect a doctor or medication. If you answer no to that question, you probably are depressed and just don’t know it.
    Now, if that sounds stupid, here’s my philosophy on that. There are people out there that I know quite a lot about their medical history and they tell me most everything. They do not take anti-depressants, and I wouldn’t ever think to ask them if they are depressed. They simply don’t have the symptoms of being depressed. So, others don’t ask them if they are depressed either.
    But, you, and I, for instance, are searching for answers, and the subject has come up that some of the symptoms you (and I) are having are the same symptoms that depression puts forth. Thus, folks will ask you if you are depressed. And, like I said, if you answer no…you probably are. If you answer yes, you may still be depressed too. But the fact is, people wouldn’t be asking you that if you didn’t have a lot of signs and symptoms of depression.
    I sure hope that wasn’t offensive because I surely don’t want it to seem that way. I just want a jolly Y! (that sounds so dirty when I re-read it)

  12. Hed

    Have you been tested for PCOS? I have it, and am regular, but some people I know, including my mom who is 53 and hasn’t gone through menopause yet, have skipped cycles. A lot. So… there’s something that might be worth looking into.
    I don’t think depression alone would make you skip periods. I really don’t think it’s all in your head, either. Something is off somewhere. Hopefully whatever it is has a solution that will be easy for you, and you will be feeling much better very soon.
    I definitely suffer from depression, and that has never happened to me. I would believe that depression would be a symptom of something else hormonal or otherwise, but not the other way around.
    Still, PCOS, Endometriosis, polyps, fibroids, cysts, or hormone fluctuations…. all those things can delay periods. For whatever reason, possibly even as a side-effect to the thyroid medication, you may be experiencing a shortage of estrogen, or a surge of testosterone… although since you are low on energy, I have a feeling it could be a shortage of a particular hormone (if it’s that,) rather than a surplus.
    Can you see a naturopath? I am a firm believer in them now. I never even thought to question a conventional doctor until I had silent thyroidits a few years ago, (It was post-partum, and acted like Grave’s. I lost 35 pounds in 2 weeks. NOT healthy.) Anyway, they wanted to ablate and take it out. I kicked and screamed and got my way. 5 years later, I still have my thyroid, am not on meds, and everything is fine. I have to be tested once a year, but after that experience I really started questioning medicine as a whole, and have had to many times since then.
    Anyway, I realize this is turning into a novel, but e-mail me if you want more info.
    Much love,
    -H

  13. Stacey

    Try adrenalfatigue.org
    Your symptoms sound just like what I went through about 10 years ago. My thyroid also tested (and still does) test low, with “normal” T3/T4. But my adrenals were at that time so out of whack they didn’t even register on a normal scale.
    Regular MDs are often not too helpful when you ask about this, so you might have to pursue alternative providers to help you with this.
    You can contact me by email if you want more info. I don’t know how up to date it will be though. :)

  14. Erin

    From what you post about your health our problems are extremely alike. For me it ended up being as simple as the excess weight was causing the missed periods and a mild depression medicine (lexapro 40mg) helped me immensely with my fatigue and my mood. Depression is quite common in people who struggle with their health and weight, according to my doc. It’s not like people who are chronically depressed. Just taking the meds until your other health problems regulate for a period of time could suffice.

  15. Norma

    Maybe you are going through an early menopause, many of the symptoms you’ve experienced are signs of that also!

  16. M&Co.

    When I get seriously fat, as opposed to my just normal fat, my blood sugars get totally out of wack and I am exhausted all.the.time and my periods are wonky. I would wake up from a full nights sleep feeling tired. Exercising and losing weight cause me to feel much better and to become more regular. I don’t know if exercising would do that for you because losing the weight is such a problem with your thyroid disease. I don’t, as far as I know, have any thyroid problems.
    Depression can also cause exhaustion though too.
    Disclaimer: I’m not a medical doctor but I make wild-assed statements on the internet about my health.

  17. catnip

    I don’t have any advice. I just wanted to say hang it there, and don’t let the docs stop trying to find the root cause of your issues. They are NOT in your head.

  18. jeanie

    lol I am in no way going to offer you drugs or a new therapy – I just hope that you find a way to make you feel a little bit better.
    But he – half a grapefruit in the morning (sprinkled with a little sugar) really perks me up. Of course, I always forget, have a crap day and think about it later…

  19. Henny Penny

    Hi, Dr Oz’s partner Mike Roisen said on their radio prgram one day even if your numbers are “normal” they might not be normal for YOU. You have to find your normal not the generic normal.

  20. sassy

    A friend of mine has Graves (fairly recently diagnosed). Even when her levels are “normal” she still feels bad. It’s like her body has to catch up to what the numbers say. Anyway she has a therapist she goes to. He actually specializes in treating people with thyroid disorders. He has one himself. What I am trying to get at is that she has a team of people that really understand this stuff well treating her (not just her numbers). But yes she is just as frustrated as you sound. Keep pushing the doctor to treat YOU not your NUMBERS. And if you can talk to someone it might help. I really feel for you and hope you can start feeling better soon.

  21. Mr Lady

    Let me tell you something you don’t know about me, that maybe 3 people in the world do know. I have every single freaking symptom of hypo. Badly. Blatently. So much so that every doctor I go to tells me that I am 100% diagnosable.
    And then they draw blood.
    Nope, nothing. All of my levels are perfect.
    My father had thyroid cancer and my mother has been on synthroid since she was 20. It’s in my genes, I have all the symptom, severely so, and I don’t have it. I can’t tell you how frustating it is to have something, to know exactly what is wrong with you, and to not be able to fix it.
    Wait, I can tell YOU that. Whew! So, yes, i totally know, sister. I just can’t help you. But I will totally sympathize!

  22. Michelle

    No advice – just sorry. It sucks.
    I will say my BFF had some major health issues that included weight gain, joint pain, loss of energy, dizziness, hair loss, and I don’t know what else. They started with her thyroid but once her levels stabilized, they realized some other things had to be going on. Many tests, doctors and months later, I think she may have a diagnosis but it took a lot of fighting on her part to convince the doctors to keep looking. Good luck to you and keep fighting.

  23. DogsDontPurr

    Have you been tested for anemia and other kinds of vitamin deficiencies? If not, make sure you get tested. My vitamin levels were out of whack, and I actually needed to get prescription level does of some. Especially have them check your vitamin B’s, magnesium, iron, and vitamin D.
    Also, when you get tested to see if you’re insulin resistant, make sure they check your A1C’s in addition to a fasting glucose test. That’s really important.
    You need to ask specifically for these tests, because even if your doctor does a “full blood panel,” they don’t always do these tests. You need to make sure what you’re getting. Good luck and big hugs.

  24. shana

    I second the PCOS idea. I have it, and it seems like you’re showing some signs – irregular (or nonexistant, like me) periods, fatigue (apparently not due to thyroid problems), etc. It’s also characterized by insulin resistance, so I’m glad you’re already throwing around that term.
    I also second the notion of making your doctor treat YOU, not the numbers. It’s hard to get doctors to see past test results and look outside the box a little. Seems like you’re on top of it, though, and that’s a thousand miles better than a lot of folks. I can totally relate to the frustration of feeling like you’re not getting anywhere (and even going backward half the time).
    Feel better!

  25. Karen

    Could you possibly have PCOS (polycystic ovary syndrome) too? That causes all other type sof hormone problems including weight gain and skipping period. Such is my life

  26. Angella

    Oh, sweetie! If I knew anything, I would share. But I don’t.
    I just hope that one of your other readers has words that can help.
    xoxo

  27. Amy

    I have no idea how old you are… but have you thought about peri-menapause? Apparently it starts ten years before the full menapause (which in some women can start as early as 50!). I’ve been having wild mood swings, strange periods. periods of extreme exhaustion & my metabolism is shot == and I think it’s all from that.
    Just throwing that out there.

  28. christina

    I just want to put something out there b/c its something that helped me when had unexplained skipped cycles, weight gain, depression but not hashimotos or clinical depression. Many people have too much yeast (candida) in their gut which causes these side effects. Treating it is easy and requires probiotics, and cutting sugar and carbs from the diet since it just feeds the yeast. This also may be a beneficial way of eating considering the latest research by Gary Taube’s 2002 NYtimes article.
    http://query.nytimes.com/gst/fullpage.html?res=9F04E2D61F3EF934A35754C0A9649C8B63
    It made a HUGE difference in how I felt within a week. (Haven’t you had success in the past with lower carb/sugar eating plan?)

  29. Hed

    Yes! On the adrenal fatigue too. That is something that is always MAJORLY overlooked, and can quite often be the VERY CAUSE of thyroid imbalances. There are supplements for that very thing. I completely spaced that one, which is weird for me because I’m ON adrenal supplements, but yeah. That could be major for you too.
    My biggest symptom from that that drove me absolutely insane was this weird almost electric shock sensation that would radiate from my neck whenever I would hear a loud noise, or anything even remotely startling. It’s a central nervous system reaction from having extremely depleted thyroids. I have access to the supplements, and they are inexpensive. In fact I have a friend who does co-ops on them regularly, for even less expense.
    Ah… why didn’t I think of that before???? Definitely check out that adrenal fatigue site. It could be a major cause of what’s up. Seriously.
    -H

  30. Debi

    I agree with the suggestion of adrenal fatigue -it manifests many of the symptoms of low thyroid, and can be resolved without too much trauma. I had the exhaustion, depression, weight gain, thinning hair, etc – adrenal supplements, a bunch of vitamin/mineral supplements, cut way back on sugars and carbs, and get adequate rest, you’re on your way to much better health in weeks… adrenalfatigue.org is a great place to start, and I agree you may have to look into an alternative medicince practitioners to find the right help, but your doctor csan definitely test your levels. Good luck – hang in there !

  31. SarahDragon

    I am so sorry you’re still trying to feel normal!
    I am pregnant with my third, and for the entire first trimester I couldn’t do ANYthing. My pregnancies have always been normal and great, but this time I was crying 24-7, so depressed, physically and mentally exhausted. Even taking it easy and relaxing as much as possible, all my muscles felt like I had just been through boot camp. The doctors ran every test on me 2 or 3 times (including thyroid tests) and everything came back normal every time. I’m still operating at about 30-60% most of the time but I just kind of got used to it… Unless something sets me off, in which case LOOK OUT!!! (This only happens about three times a day… Ok, fine. Usually more than three….)
    Didn’t mean for that to get so long, I just wanted you to know that I understand and I feel for you! You are in my prayers! Hang in there : )

  32. Veronica

    Just curious, could the levels be normal as they turn around and swing the other way?
    I mean, I have no experience with this kinda thing (ask me about CFS and I am your gal) but it just seems odd that the numbers are all normal and you are still feeling shithouse.
    It isn’t fair.

  33. Meg

    When I first started really, truly managing the ol’ Type II Diabetes I felt like crap all the time, even though my sugars and various other sundry numbers were Perfect! My dr was so pleased and I was so loopy or sleepy or groggy. Turned out that my body was so used to being wrong that it had to learn to be right.
    I hope you start feeling right soon Y. :)

  34. Wacky Mommy

    “Turned out that my body was so used to being wrong that it had to learn to be right.”
    What she said.
    I hate the Thyroid. Hate it. Mine has been gone 17 years this summer (how can that be right? but it is) and still wreaks havoc — bloodwork every two months, random fatigue, random bursts of energy. I especially love when my endo says, “We need to check your thyroid” and I respond, “BUT I DON’T HAVE ONE.” (Which reminds me — I have an appointment tomorrow. Dammit.)
    It is a delicate little flower, the Thyroid, with the force of a tornado. Be well, Y.

  35. Maria

    I skimmed the comments, but I agree with these two. Perhaps, your body will take a while to getting used to being well. Or perhaps, you have a hormonal inbalance that was previously masked by your thyroid condition.

  36. Kris

    I have hypothyroidism and can totally relate to your blog. While Synthroid has worked just fine for me, my brother had an opposite effect. His levels went down to normal, but Synthroid drove him crazy. He instead changed his meds to desicrated pig thyroid (I’m probably spelling that wrong) and now he’s fine. So maybe you just need to try a different kind of drug? I also got PCOS at the same time and it can go hand in hand with hypothyroidism. It messed my periods up, so that’s worth looking into. I’m sorry you’re going through this. It will get better!!

  37. Leanne

    I have to say first that I completely trust my doctor, if that excuses my total ignorance on the subject.
    I had the same symptoms, several years ago. Weight gain. Depression. Tiredness. Weakness. Lack of memory.
    My thyroid levels were fine – but my doc said that the parathyroid doesn’t show UP on those workups. He treated my parathyroid.
    Also, I’ve had mono. Apparently, mono sits in your liver forever and can re-occur in the right circumstance, and you know what mono does. It’s called Epstein Barr (EBV).
    The combination of the two definitely cause not-very-good times for a person.
    I am still on synthroid, and will be for the rest of my life – but better than having the glands removed. I understand that the medication taken when your glands are removed can cause osteoporosis.
    I wish you all the best in pinning down the problem and finding your cure.

  38. kim

    i’m sorry Y i have no advice. just a *hug* your way and i really (!) hope you will feel better real soon! :)

  39. Debbie

    Apologies. I’m going to be the annoying person who has never been through this and wants to give advice anyways. Feel free to wander over and take a big comment-dump on my blog after this. But…
    I’ve been following along for a while now and it all sounds so horrible and hard to deal with. In no way am I saying that I even remotely understand what you are going through… but…
    Could it be about attitude? That there might be something psychological (not in the crazy sense, but just in the emotional/cognitive sense) that is causing your symptoms. Not saying that they aren’t real, but just that they are being caused by the way that you PERCEIVE your situation. If you are constantly believing that you are ill, perhaps you are tricking your body into illness? Again I know nothing about this, so I should shut up, but still… if the numbers don’t lie, and you STILL feel bad? I’m not saying it’s all in your head, not at all.
    I just believe that attitude and emotions have a big effect on our physical state.
    Okay. I suck. I’m sorry!

  40. Laura

    Skipped periods are not all in your head. I think you should ask your gyn to do a full workup, check for PCOS and check your hormone levels – get a saliva test – hormones fluctuate too much to be accurately tests by a blood test. And you may be depressed from feeling like crap for so long…
    This sucks and I do hope you get some answers soon. I’m thinking good thoughts in your general direction.

  41. Jeanette

    ***HAVE YOUR PITUITARY GLAND CHECKED VIA MRI!! ****I have had a pituitary tumor for years-they are benign, and it has completely shrank from medication that I take once a week- but I had SEVERAL of the same symptoms. Especially weight gain, sluggishness, periods, etc.
    Feel FREE to email me if you want to. Really.

  42. Kristie

    OK, except for the wee bit of Synthroid I take which completely keeps my levels normal, I have zero in the way of medical advice to offer you.
    But! I do want to congratulate you on being proactive in your own treatment …. researching the internet, asking the peoples of the internet for advice, and continuing to question your doctors … all good things! I have great faith you and your physicians will eventually get this straightened out and when you do? You can be proud of the part you played in your own health!!
    (now, off to take my wimpy bit of Synthroid and to be grateful that it works so easily for me …..)

  43. Missy

    I know next to nothing about thyroids… But I do know that what you’re describing sounds a lot like what my mom went thru with early onset menopause. She was in her late 30′s. She was very, very tired all the time, depressed, angry at the drop of a hat, etc… etc… Her doctor (same doc for most of her life) diagnosed her with “depression” and put her on a host of meds. Nothing helped. She was borderline suicidal, feeling worthless and sad that she couldn’t get better.
    Finally after convincing her to see another doctor, he took one look at her history and said “early onset menopause.” She dropped all the other meds, began hormone replacement therapy, and boom… totally changed everything.
    I don’t know if this is something you’ve already talked about with your doc, but maybe???

  44. chris

    I would go to your GYN and have them test your LH/FSH levels. I am 38 and recently went off birth control to have a second child and wammo – bammo – early menopause. some of your symptoms – the fatigue could be from low estrogen. Can’t hurt to have the tests. hell, I am crused that more kids are out of the questions, but maybe my experience will help you feel better! Good luck. chris

  45. Stephanie

    I’m getting my masters in nursing right now and I hear this from patients all the time. You are not alone! Normal levels do not necessarily mean feeling good. A classmate of mine had her thyroid removed due to cancer and she’s doing her thesis on this very topic – normal thyroid levels with persistent hypothyroid symptoms.
    I don’t have any great advice for you – just wanted you to know that it is NOT in your head. There are a lot of people out there going through the exact same thing. There’s so much we still don’t know about the thyroid and how it works. Your doctor should be treating your symptoms NOT your lab levels!

  46. justAcliche

    Have you had your iron & B12 tested. Kills me all the time. And like you, all my levels for everything are normal. It’s all in my head.

  47. Amy

    Hang in there Y. Don’t let the docs tell you what feels normal. You know when something is not right with your own body.

  48. Karen

    Ok this is my third comment…My GYN sent me to an Endo to diagnose my PCOS. You could ask your endo do to the test for that too if your GYN can’t fiure out whats wrong. I know how frustrating it is. Best of luck =)

  49. Mary Watkins

    PCOS – seriously the symptoms mimic thyroid issues (a lot of times people have both. My sister has thyroid issues and PCOS – they first diagnosed her thyroid and then the PCOS because of the same issues.
    I am being tested for PCOS because of the 7 0 friggin pounds I packed on my self -

  50. liz

    every day i feel totally hypo while my levels continue to come back in the excellent range.
    i agree with whomever suggested checking B12 and iron levels and have also read studies about PCOS/hypo stuff.
    it’s such a fucking pain in the ass, i know. my doctor is always like “levels look good, see ya later,” meanwhile, i want to claw my eyes out, but even that would take too much effort.
    i’m looking forward to the havoc that will be wreaked on my system after this baby is born. after my son was born? my TSH shot up to 17. SEVENTEEN!

  51. Brandy

    Delurking to say that I have no medical advice to give you. I just wanted to to know: Don’t give up. Don’t stop asking questions. And. Hugs to you.

  52. lani

    Y- Like a few others, I have no advice to give. Honestly, I wish I had a magic wand I could wave over you to make you feel better. But please don’t start believing it’s just all in your head. You feel terrible for a reason… the hard part is figuring out what it is. Keep looking for answers. Hugs, Lani

  53. LisaS

    I second (third? fourth? fifth?) the suggestion that you make sure you are tested for polycystic ovarian syndrome (PCOS). As mentioned by others, it can cause weight gain and irregular periods (among other symptoms). It also is often accompanied by insulin resistance. I have PCOS and am insulin resistant. I’m on metformin (glucophage) for that. I also have depression and am on Effexor XR for that (after having been on different drugs in the past). I’m a chemically mediated, happy camper!

  54. Jennifer (Et Tu?)

    Hey Y! I am so sorry to hear about what you’re going through. I know that feeling of wondering if the tests are wrong or you’re just insane or what. :)
    I just thought I’d offer the two-second version of my story and the one-word answer that it all came down to. Here it goes: I had PCOS and adrenal fatigue along with all the symptoms of low thyroid problems. In my case, the whole ball of wax came down to one thing, and one thing only: INSULIN.
    Once I started reading up on controlling insulin levels (books like The Insulin Resistance Diet, Potatoes Not Prozac, Sugar Busters, South Beach Diet, etc.) my life totally changed. I lost 30 lbs, the symptoms of thyroid and adrenal fatigue went away, I got off all medication, and my doctors couldn’t find any signs of PCOS (it had been confirmed previously w/ both blood work and a level II ultrasound).
    Anyway, I don’t mean to be one of those people who implies that the solution that worked for me is therefore the solution that works for everyone — I just wanted to throw it out in case there’s anything there that’s helpful to you.
    Love your blog.

  55. Debbie

    Have you been tested for anemia? It can affect your mental abilities, definitely make you tired, racing heartbeat. I’m on my second time of severe anemia, and this time has been the worst. Took lots of test to diagnose why I was getting so anemic twice now, but I think we finally have the answer.

  56. Dani

    I hate to say it, but depression is a viable answer here. I know you hate being on meds, but for some people it is just a life long battle that you can’t win without ‘em.
    I’d pin your lack of periods and other stuff on PCOS, but you don’t seem to have a problem getting pregnant. Not sure what else could be going on. Maybe your gyno will have ideas. Good luck, hon!

  57. Nikki

    Have never posted here but wanted to add…The endocrinologist can do thyroid, pituitary, ovulatory regulating hormone testing. I would get a CBC(this would show infection or disease). Plus here is a site for infertility blood work. I only include it because it list all the norms for most hormone levels… http://www.fertilityplus.org/faq/hormonelevels.html#female
    I have PCOS and insulin resistance(IR). Push the endo for the 3 or 5 hour glucose tolerance test as people who have IR don’t typically have issues with fasting numbers. PCOS cause puffy face, ‘male-shaped’ hands, male pattern hair growth, ovarian cysts that produce micro amounts of testosterone…just enough to screw up your body. It causes dry, dull hair, brittle nails, dry skin, hair lose and excess belly fat that is VERY difficult to lose. The IR can cause tremendous fatigue as well. I hope you find the answer! How very depressing it would be to wake up with hope and have the day simply slip away. HUGS my dear!
    Nikki

  58. Susan

    Boy, can I relate. I’ve not had any thyroid problems, but last fall I was extremely anemic and had to undergo 8 weeks’ worth of iron infusions (iron IV). I thought I would feel better. I did, somewhat. But not enough.
    Since then (since like January), I have felt like absolute SHIT. NO ENERGY. There are times I don’t go places because it sounds too tiring to, oh I don’t know, stand in line at a store for 3 minutes. Or walk 25 steps.
    I had the doctor run bloodwork again, sure I was either anemic again or dying of cancer. I’m FINE. Sure, 40 years old and fine. Except I feel 90.
    Sometimes I wonder if it’s not Chronic Fatigue Syndrome, or Epstein Barr or something. Seriously. Because why is my bloodwork normal? I’m NOT a hypochondriac. I don’t want to feel like crap anymore!!!
    Anyway – I feel your pain. ((HUGS))

  59. Susan

    P.S. Read other comments — it could be depression. I’m already on Effexor XR for MY anxiety/depression, so I’m pretty sure mine’s not that. Just sayin’.

  60. kimblahg

    I hope you get an answer soon and feel better. I am sure you have wondered if it isn’t depression? Whatever it is, fingers crossed for a solution.

  61. Emily

    I have no medical insight or advice, but it sounds like you’re covered on that front for now. At least as far as the blogosphere is concerned. I just wanted to let you know that you are wonderful – I love reading your writing, I love seeing your photos, and I wish we lived closer so I could see you do The Worm. In person. Because that would make my millenium.

  62. Paula

    Y-
    I have PCOS which has been discussed in earlier comments. Get checked for that. Also, what about anemia? I was severly anemic from having a 21 day HEAVY period earlier this year. I finally begged the Dr. to test iron levels and I was very anemic. I had an iron transfusion and it helped immensely. I’m also on Welburtrin and that seems to keep me level and give me some mental energy.
    Keep journaling and talking this out. The internets will fix you eventually!!!!! Take care and be strong.

  63. Gruppie Girl

    I am so not a doctor, wearing black is more slimming. But, you sound like me with PCOS.
    I have Hasimotos (sp) and a multi-nodular enlarged goiter. I don’t take any meds for my thyroid.
    A few months ago I started on two medications for PCOS on just my few symptoms alone. I have never felt better in my life!
    Have you considered pushing to try PCOS meds? The oter thing that really helps how I feel is exercise…tough I know.
    Good luck!

  64. Gruppie Girl

    I am so not a doctor, wearing black is more slimming. But, you sound like me with PCOS.
    I have Hasimotos (sp) and a multi-nodular enlarged goiter. I don’t take any meds for my thyroid.
    A few months ago I started on two medications for PCOS on just my few symptoms alone. I have never felt better in my life!
    Have you considered pushing to try PCOS meds? The oter thing that really helps how I feel is exercise…tough I know.
    Good luck!

  65. Candy

    Someone already said it, but I’m seconding (thirding?) it. You have always been very health-conscious and the fact that this has happened to you and you can’t control it could have you stuck in a depression.
    Probably not what you want to hear. Cause basically I just said “It’s all in your head.” But not THAT way ;)

  66. skyzi

    I am currently in a similar situation: hypothyroidism, PCOS (skipped periods, hair loss, tired), insulin resistance, lethagic and I have to say I did this to myself to a certain extent. Five years ago I lost 80 lbs and ALL of these conditions disappeared. When I got pregnant I lost my mind and put on all the weight. My symptoms have all come back with a vengeance. If I lose any more hair on my head I am going to hurt someone!
    I feel stuck in a rat wheel at this point. I know I have to lose the weight again to “get better” but it feels like a losing battle…….don’t know where I was going with this other than offering you love and support! Thank you for being so candid about your struggles!!

  67. skyzi

    I forgot to mention. I was not getting my period and they put me on the pill to regulate and now I get it like clockwork.

  68. Joni

    If you haven’t already, read the website “Stop the Thyroid Madness.” I spent hours researching thyroid disease after hearing all the “you levels are normal, eat less, exercise more, here’s some prozac” b.s. I got on Armour thyroid and am doing much better – foggy brain disappeared, my energy is way better, my periods come like clockwork, and if I tried I’d probably be able to lose weight. The tough part is finding a doctor who will prescribe Armour and having him/her test your FREE T4 and T3 levels. TSH is nonsense as are Total T3 and T4. Stop the Thyroid Madness goes into all of this in detail as well as the adrenal implications. Feel free to email me if you have any questions…

Comments are closed.