Highly symptomatic, but normal test results

[agb621]

I was recently diagnosed with Hashimoto's thyroiditis.  My test results showed normal thyroid hormone levels (I'm not sure if they did an antibody test as well).  I've been experiencing overwhelming fatigue, trouble concentrating, forgetfulness, muscle weakness, joint and muscle pain (sometimes severe), sensitivity to hot and cold temperatures, sleepiness (I never wake up feeling rested), and sensitivity to medications.  I have experienced fatigue since the age of 11, but it has worsened in the past few years. I am a 22 year old female.  I have so many of the symptoms of hypothyroidism, could my thyroid still not be functioning very well despite normal test results?

I am a senior in college and I have every intention of attending graduate school programs but I simply will not be able to effectively do what I want to do with this level of fatigue.  Even if I felt only 20% better it would be like being reborn.  I'd be a thousand times more confident about continuing my education.  Any advice would be great.

[selmaS]

I do not have a copy of my labs, but were told they were normal?? I do have nodules they have been checking with ultra sounds....one nodule grew slightly and they r still just waiting, while I have the symptoms u described...I am not on meds at this time...if only I would wake up and it felt like I was rested...wow!! I used to want so many other things.....oh well...u r young and know what u can and can not handle.....my daughter just finished grad school and it was very draining.....unfortunatley u need to do the same as me, push for more answers from ur dr- or find a new one.
Depending on ur course load u may handle grad school with no problems....ask ur dr.

Good luck
Godspeed
"selma"

[agb621]

I just spoke with my GP and he's okay with starting me on some meds. It would be a low dose but I'm so miserable, I have to do something.  Grad school is draining no matter what.  I have wanted to be a veterinarian my entire life, I have a lot of schooling ahead of me, and I want to be able to make it through all of it.

[agb621]

Also, Selma, thank you for the good wishes.  I'm sorry you're suffering as well, I hope you find some answers too. Do you have Hashimoto's as well? I've heard that normal test results might not indicate normal thyroid function, and that treatment in such cases is still beneficial.

I just want to feel better!

[selmaS]

U r so welcome......awwwwww I love animals..I am sure u will be very good at it especially since it's been a dream for so much of ur growing up and it didn't change....my daughter asked to take dance lessons at 2.5 and now has her masters in dance ed......yeah ...it's hashimotos.....I am confused as to y I am not on meds yet...my  skin is soooo dry...never had dry skin.....I do have other health issues adding to my list of symptoms, so maybe that'd y the drs r reluctant to put me on meds.

I am sure u will do well in school...just pace urself.

"selma"

[Shherry]

I have the same issue ... have all the symptoms but all blood work is normal.  I do have a nodule as well that has to be rechecked in 6 months and a slightly enlarged thyroid.  My doctor has suggested a very small dose of levothyroxine to try to shrink it but it seems there is some controversary as to whether or not it can be beneficial.  Supposedly it's the nodule that causes these symptoms.

agb621, I'd see about having an ultrasound done.  That's how they discovered my issues.  

[selmaS]

How long since ur nodule was discovered?...mine were found in April....still no meds...did ur symptoms dissapate with the meds?
I just need my PC to get with the program and understand I do have symptoms...who wants a sore throat constantly?? ....not me!!..I need something done soon.

Thanks for sharing ur info.

Godspeed
"selma"

[agb621]

I had an ultrasound, that's how they discovered I have Hashimoto's.  I don't have any nodules yet.

[mommy2two2008]

I am a very symptomatic thyroid patient with perfect labs but a swelling thyroid.  My doc gave me a trial of synthroid, then I fired him after pretty much telling me I had to take the medication but did not have a thyroid problem.  Now however, I see an ENT and am still medicated.  The ENT switched my medication to Armour.  Very thankful for the medicine b/c it does help, just wish they could finally say "Kim, you have .........," that would give me a little piece of mind.  I still think I have hashi.  Anyway, you should give the trial dose of meds (especially synthroid or levothyroixine) about six weeks to take effect.  I did see a difference (at first) after about 2-3 weeks.  When I switched to Armour, I noticed the symptoms deminish dramatically within a few days (except the swelling thyroid).  Hope this helps!!!

[selmaS]

Thanks mommy....I asked a question earlier about should I see an endo or ENT dr for Hashimotos.....cuz I am the opposite of u...know what I have, just not medicated.


"selma"

[agb621]

That is very helpful and encouraging, Kim.  I have an enlarged thyroid as well, my endocrinologist told me it looked like classic Hashimoto's.  She said it wasn't necessarily causing my fatigue, I guess at 22 I'm still a bit young for Hashimoto's to be causing hypothyroidism. It's so frustrating though, I've seen so many doctors and it feels like none of them get exactly how miserable I am. I hide it well, I've been dealing with it for 11 years and I'm too stubborn to let it keep me from finishing school. I hid how tired I was for a long time, I guess I didn't want people to know how bad I felt because I didn't want them to tell me I couldn't do things (like drive myself to school back in high school, when my school was 25 miles away). I didn't even realize how abnormal I was until I got mono and didn't feel all that slowed down by it, even though I was quite ill. Everyone else I knew who'd gotten mono remembered it as being the most tired they'd been and for me, it wasn't all that different from how I normally felt.  That was when I decided to really actively pursue the cause of my fatigue.  That was over 2 years ago.  But when I see doctors, I try to explain to them how detrimental it is to my life and how utterly miserable it makes me and they just shrug it off. It's so frustrating.

[dai3symae]

Hi....I had normal labs for years and, like you, just went about life no matter how tired I was.  Last March my doc (a gp) tested me for antibodies and made the dx of hashimoto.  My TSH and T4 were still within normal range.  

I've been taking 50mg of levo since june and most symptoms have lessened although I'm still tired....Unlike you I'm 52; so I guess some tired comes with the territory! LOL

You might be very pleasantly surprised at how much better you will feel, even on a low dose of meds.......Good Luck  :)

Sandy

[agb621]

Sandy - Thanks for the encouragement, this whole thing has gotten me really depressed. I've been crying for an hour, I can't seem to relax about it. Maybe I'm getting sick or something, I don't know. I just felt like I really had my hopes on getting a real answer finally, I've missed so much of my life and I'm not getting nearly as much out of my college experience as I should and I'm always going to regret that. But if my brain doesn't feel like it's functioning, what am I supposed to do? I can't get around it.

[Jules77733]

I can really relate to you--I was always extremely fatigued during my undergraduate years (just graduated last May, so I'm a year ahead of you), my memory was going downhill, and I had consistent headaches coupled with a general feeling of malaise. I didn't get as much out of my college experience as I deserved, but I realize at this point, there's no turning back. I became really ill my final semester during senior year, and that was incredibly rough...I still haven't gotten an answer as to what's going on with me, but my thyroid panel was the first thing to show up abnormal in my bloodwork...hence, why I'm here.

I'm in graduate school right now and it's not easy, at all. But it was driving me crazy to sit around and do nothing, so I knew that it was better I moved ahead with my life, realizing how challenging it was going to be with my current health, rather than stew all day everyday, bored out of my mind and having nothing to focus on but how sick I was feeling that day. I'm glad I decided to do it, but it is tough. It's a decision you'll have to make for yourself when the time comes, but I would recommend applying to graduate schools now, and then deciding later (since the applying part needs to happen within a certain time period). I also opted to stick close to home so I could have my parents nearby, as my Mom has been a big help with reminding me to schedule my next MRI or when my next appointment with a specialist is.

There's never any easy answer when it comes to our health, since our bodies are such complex systems. The best advice I can give to you is to not let your illness become you. If you think, "I'd do that, but I can't because I'm sick," or "Well, there's no point in even trying to study because I won't remember this since I'm not feeling well," you'll feel even worse in the end. You are realizing you have certain limitations now, which isn't fun, but you're right--some of it you can't, and won't, get around. But you can adjust your life to accommodate the illness, realizing it won't be like this forever. Continue seeing doctors, trying new treatments and medication, and adjust your lifestyle to help your body repair itself as best it can (eating better, getting more sleep or getting on a regular sleep schedule, etc.) while your doctors do what they can to make you feel better. Another piece of advice I can give you is to always ask questions and don't give up--if you know something is still wrong with you, keep going to doctors until you find one who is willing to coordinate your care and fight for you. Having one good doctor (even if it's just a GP) is better than having 3 mediocre ones who aren't interested in your case, or you, as a patient.

You're still very young and you still have a lot of your senior year left, so don't look at this like it's the end all be all. You'll be a stronger person in the end for fighting through it--but you have to make the decision to do that, right now. Honestly, I felt terrible when I allowed myself to wallow for any extended period of time. Now, I feel better knowing I managed to complete the same homework everyone else did, and everyone else (in all likelihood) isn't sick! And I still find the time to have fun and do things that I enjoy in what little free time I have...granted, I have no where near the amount of energy I used to have, but I've accepted that I'm sick for the time being, so there's no use letting that drag me all the way down. It's not fun, as I mentioned, but you get used to it knowing that it won't be this way forever. I'm just glad to know I'm not worse off.....and there is plenty of hope for you; thyroid disease is very manageable! It just takes some time to really "record" how your system is responding to the hormone fluctuations, and then figure out how to best treat the problem. In due time, you probably won't even think twice about your thyroid issue except when you have to take your medication.

If you want anymore input or someone to listen, just let me know. Even though my memory has been shot as of late, I'll remember to check back here! Just hang in there, and I hope you feel better soon.

[agb621]

Jules - Thank you for the thoughtful post. You're absolutely right, I should feel a huge sense of accomplishment that I've made it this far and do all right considering how sick I've been. It's just hard for me to feel proud of things that "normal" people can do, which I know is silly.

My doctor decided that starting a treatment might not be a good idea because my bloodwork indicated I'm closer to hyper (not hypo) thyroidism. This could obviously be the fluctuations associated with the Hashimoto's. I went to get more bloodwork this morning so we'll see if that shows anything.

[Jules77733]

Sounds like you're moving along with the diagnosis/treatment at a pretty fast clip. Soon you'll be right as rain! Keep us posted on how things are going--I'd be interested to hear what the bloodwork shows. Mine fluctuated a lot at the beginning of my "illness" and my doctors have since stopped monitoring it, which is a shame. Fluctuations are normal, but large fluctuations aren't, so I hope your bloodwork tells you something, even if it's just a trend.

[Jules77733]

Out of curiosity, what are you looking to go to graduate school for?

[agb621]

Well, currently I'm in a classics program, but I want to be a veterinarian, so I have to do a post-baccalaureate program in order to get the requirements I need for vet school out of the way.  These programs are usually pretty intense, they pack a lot of difficult courses into a few short semesters.  I think it would be an amazing experience, I just want to be able to make it through!

This probably sounds horrible, but I wonder if putting myself into the highest stress situation possible would speed up the destruction of my thyroid so that it is clearly not working and I can begin treatment.  It's an interesting idea to toy with, especially since my doctors won't treat me.  But I'm getting a cortisol stimulation test on Tuesday (if insurance stuff is taken care of, if not it'll be next Tuesday) and either way I have a follow-up with my doctor and will probably get the results of my blood work at that point.  I'm not anticipating anything worthwhile coming from that, but we'll see.

[898]

According to the recent article I read, the Hashimoto's patients with thyroid goiter [diffuse or diffuse with nodules] are less likely to have thyroid atrophy, then patients without marked thyroid enlargement.

[Jules77733]

Did you have an ultrasound of your thyroid done? I'm just wondering if maybe your thyroid is a symptom of a different issue, especially given your normal thyroid bloodwork. Do autoimmune diseases run in your family (i.e. do your parents, siblings, etc. have any autoimmune diseases, particularly any autoimmune thyroid diseases)? Muscle weakness, fatigue, joint pain, and a lot of the other symptoms you're experiencing could be attributed to many other systemic illnesses...your thyroid could just be a casualty of whatever it is you have. The thyroid antibody numbers would be useful to have, if you got those tested--if not, it'd be good to have those levels checked out.

Stressing your body would definitely speed up the destruction of your thyroid, but it will also speed up the destruction of a lot of other things, which may complicate the situation (hormones will go crazy, you could develop headaches, more fatigue or insomnia, heart arrhythmia, etc.). I wouldn't recommend it since there is no guarantee you'll target the thyroid or cause enough of a problem for it that it'll show up in the bloodwork.

Good luck with your post-baccalaureate coursework; I know how difficult those classes can be... Veterinary school is a great goal to aspire toward. Is a "classics" program the study of literature and its applications to language, mathematics, and the like? I haven't taken any humanities or social science classes in quite some time, so I'm not entirely sure what that means, but I'm interested to hear about it.

[agb621]

Yes I did have an ultrasound, she said I have classic Hashimoto's. It seems there is really no doubt with regards to the diagnosis, only as to whether my symptoms are caused by my thyroid or something else.

The classics program I am in is essentially a history of Western math, science, philosophy, and music with intense studies of ancient Greek and French.  We read everything from Homer, Plato, and Aristotle to Dante, Shakespeare, Tolstoy, Marx, Hegel, and Twain with stops in between at Augustine, Pascal, Descartes, Bacon, Hobbes, and Rousseau, to name a few.  Math and science are almost primarily original sources. In math we start with Euclid, we learn about algebra from Descartes, we learn calculus from Newton, and we learn non-Euclidean geometry from Lobachevsky.  In science, we learn biology from Gaelan, Harvey, and Dreisch, chemistry from Lavoisier, mechanics from Huygens, electromagnetism from Faraday and Maxwell, and atomic theory from Thomson, Einstein, Rutherford, Planck, and Bohr.   It's very interesting but a lot of thinking work, which is not very conducive to what is only a semi-functioning brain. Not that any schooling really is, but this kind of work is especially difficult.

[Jules77733]

An ultrasound won't tell you if you have Hashimoto's; it'll only tell you if your thyroid is exhibiting an appearance characteristic of a patient suffering from Hashimoto's. Typically, that means an enlarged thyroid with a heterogeneous echotexture. The thyroid antibodies, measured via bloodwork, are really the indicator for autoimmune thyroid disease. I asked about your familial history because autoimmune thyroid disease, like Hashimoto's, typically runs in the family (usually seen in women). If your antibodies aren't indicative of Hashimoto's and you don't have a family history of it, your ultrasound results would have to be interpreted differently--meaning you're likely suffering from a temporary bout of thyroiditis, which lasts a few weeks to several months, as a result of another disease afflicting your system. I wouldn't settle on this diagnosis if your bloodwork is normal (especially the antibodies). Because then, no amount of thyroid hormone is going to make you feel 100% better until you treat the underlying issue.

If you do have Hashiomoto's, it's likely you have another autoimmune disease that's causing some of the other problems. If it's not actually Hashimoto's, then you have something else, and may need to do a lot more bloodwork in order to figure it out. What have you been tested for? Lyme disease? Epstein-barr virus? It wouldn't hurt (besides the needles) to have a few more things tested while you're waiting for your thyroid to crash, if it ever does. You might also want to ask about getting an MRI of your head to look at your pituitary gland and hypothalamus; though, if you don't have fluctuating TSH levels, chances are your pituitary isn't the issue. I'm glad they're ordering an adrenal insufficiency test--it's definitely a smart thing to do.

The program you're in sounds rather interesting (especially coupled to your veterinary school aspirations), but I can understand why it would be difficult given your present condition, and past fatigue. Have you asked your doctor(s) what can be done about managing your symptoms until they get a handle on what's really going on? I'm not saying I think medication is the best way to treat things, but if this is only for a short period of time, and they don't seem to entirely know what's going on, there shouldn't be much harm in giving you an NSAID for your joint aches/pains and potentially trying out a drug like Provigil for your excessive daytime sleepiness.

[agb621]

I tried Provigil, it was baaaaaaad.  I'm bipolar as well, stimulants are definitely not the way for me to go. I am on Neurontin for the pain, we've increased it a lot recently though.  When it comes to managing the fatigue, we've been looking for a way to do that for 11 years. I'm not optimistic that we'll find anything that will alleviate any of my symptoms.  I can't tolerate stimulates (caffeine or otherwise) in even tiny amounts.  I can't even drink anything that's decaf, I will still feel the caffeine.  Have to go with caffeine free, always.

I was unaware that the ultrasound wasn't a definitive diagnosis, my doctor sure sounded like it was.  She did find the classic heterogeneity and enlargement.  She came very highly recommended from another doctor so I'm reluctant to say she didn't know what she was talking about when she diagnosed me, or had an insufficient amount of information but it's always possible.  I assume my antibodies were tested, I'll ask my GP at my follow-up on Tuesday.  If they weren't, that's kind of weird.

As for family history, my family is incredibly tiny so it's a bit hard to say.  (We were kind of thinned out during WWII.)  I told my mother she should get tested, but she doesn't exhibit any symptoms at the moment.

There's some suspicion that I have Crohn's Disease as well.  Last spring, I got a horrible intestinal infection as the result of taking some antibiotics and needed to be hospitalized.  A colonoscopy showed ulcerations consistent with Crohn's, but with the seriousness of the infection it was difficult to be certain.  I took a 7-week course of powerful antibiotics and an anti-inflammatory medication.  A second colonoscopy looked clear so my GI doctor stopped the medication.  He told me he still suspected Crohn's but wanted to try taking me off the meds for awhile.  A few weeks later, right before classes started, I began having symptoms again.  I ended up needing another ER visit but since my doctor was convinced it was just a Crohn's flare-up, nothing more than a bit of blood work was done and I was doped up on an anti-emetic, which I learned last year during my illness will make me feel really tired and drugged for a solid 2 weeks, but I felt so awful I didn't care.  I still ended up missing my first day of classes three days later, I was up all night and completely dehydrated and depleted.  My doctor put me back on the anti-inflammatory and I started working with a nutritionist and my stomach seems to have settled a little.

Crohn's can also cause fatigue, but any doctor who is going to jump to that conclusion has to keep in mind that the fatigue preceded the (potential) Crohn's by 11 years.  That makes it a little unlikely that they're connected.

I feel like I have a million things wrong with me.  I wish it was just one thing, then it would be easier to diagnose and doctors would be less likely to throw the blame around.  

[healthyforlife]

Sounds like you need a good dose of preventative medicine... Naturopathic MD that is. I started going to one when I was 20, with the same symptoms you have.  You probably don't have time to cook quality meals, are you eating fast food alot?  Blood work can determine what vitamins you need to take.  Your Naturopathic MD can also test for toxic metals in your blood.  My tests showed variable levels of lead, nickel, aluminum, among others.  If your Thyroid tests were normal look elsewhere. Hypoglycemia was my problem.  Tired all the time, craved sweets, coffee all day, low concentration, blurred vision, weight gain, and diet soda (very bad for you!!)  Just make sure the Naturopath you choose is also a medical doctor so he/she can write prescriptions.

[Jules77733]

Hmmmm...thanks for the information. I have a midterm in a day I have to start studying for eventually, so I'll think about all of this and let you know if I come up with any worthwhile thoughts.

I did immediately think of vitamin levels--have you had your B12 level checked out recently? How about any of the other levels? I'd also be interested to hear about your blood counts--were any of them abnormal, by any chance?