Hi - I've had symptoms of hypothyroidism for a few years now, but bloodwork remains just within normal limits. Since we've tried everything else, my doctor grudgingly agreed to try Levothyroxine in case it was indeed, hypothyroidism. He started me very low, and gradually increased the dose to .100MCG 2x per day.
...but I have NO improvement other than I'm sleeping somewhat better at night. Beyond that, if it's doing anything at all, it's making me MORE TIRED during the day.
I am SO desperate and confused; if my thyroid was normal, shouldn't this dose make me hypERthyroid? Shouldn't I feel SOMETHING? In all honesty, I could be taking tic-tacs for any difference in how I feel, and I don't know if I should continue this medication or not.
I've been through so many medications, anti-depressants, tests, tests and more tests - I am completely desperate and honestly begging for advice or suggestions of any kind; I'm so tired I can't function. Whatever this is, it's destroying my life.
I truly believed when I started thyroid hormone, I'd either feel better or get sick, either way it would've been an answer and we could move on to something else - never once did I think it would do nothing; I've been straining every day to detect a change, any change, bad or good - ugh.
I cannot stand this. It is beyond me that I can feel so awful and have NO abnormal tests other than low b-12 and marginally normal thyroid function.
ANY help or advice on this would be ENOURMOUSLY APPRECIATED
Just because your thyroid tests fall within the so-called "normal" limits does not mean those levels are adequate for YOU. The reference range limits are far too broad. If you will please post your thyroid test results and their reference ranges shown on the lab report, members will be glad to assess the adequacy of your testing and treatment.
Please post your B12 level and reference range, along with your thyroid levels and reference ranges, and indicate whether or not you are being treated for your low B12 level. Vitamin B12 deficiency can cause debilitating exhaustion.
Too much thyroid medication would most likely make you hyper; however, we'd need to see your labs in order to help determine if you are, in fact, over medicated.
You NEED to get the FREE T4 and FREE T3 tests. If you have only TSH there is almost a 0 percent chance that you would ever be medicated or treated properly to feel well!
Without the Free T3 and Free T4 tests we could only speculate what may be the problem.
many people need to have their FREE T4 in the MIDDLE of the range AND, that means in addition to, they need their FREE T3 in the UPPER 1/3 of the range. If you are at the low end of the range there is little hope that you will feel good. Some people do, but many people need to be well into the middle or upper range.
Simply being "within range" means ABSOLUTELY NOTHING!
Thank you ALL - WOW - you guys are AMAZING to take your time like this - I have some tests here in my lap, but I don't have ANYTHING like what you're talking about!
The only test with TSH I have right now is from a 12 mo old test, but it hasn't changed from last test 3mo ago - I can't find my *%# folder with all my recent miscellaneous med junk :( posting most relevant numbers while i look to see if I have anything more - I have no "free T3 T4" tests because I asked for that, and was told it wasn't necessary as my levels are normal -
Here is my TSH: 3.2 mIU/L (normal = .5 - 4.0), so I'm well below hypo level.
Here is my ONLY abnormal result, which I've been told by family, infectious disease, rheumatologist, endocrinologist doctors is 'nothing to worry about' (after they ask if I am or was an alcoholic - i don't drink at all)
B-12: 179 pg/ml (normal = 200 - 900 pg/ml)
I'd like to give you background in case anything rings familiar to someone - first, i've always been oddly tired. I'd take a nap after school, go to sleep early, and still be dead tired in the am. Also since childhood, when I'm under stress, sleep is first thing to go. Weight was always normal.
Always had mood swings related to pms. Always had abnormal anxiety that was NOT situational.
These new, FAR worse symptoms started with a high fever, flu-like symptoms, swollen glands, and an large hot red lump (told lump itself was deep, ultrasound revealed nothing) in my breast which went away with antibiotics - but the illness never did, and I'm going on three years.
Symptoms include periodic fevers, severe fatigue, periods of extreme insomnia, periods of hypersomnia (after long periods of insomnia, i "crash"), intermittent hot swollen (infected looking) areas similar to 'lump' in breast in random places (middle of back, neck, ankle, top of foot, painful glands in neck, weight gain, hair loss, dry itchy skin, loss of my outer eyebrows, (?), extreme bruising (not anemic), foggy thinking, short term memory issues, depression, daily headaches, occasional migraines, periods of uncontrollable crying, aching muscles especially in morning, extreme morning stiffness (walk sort of like a duck until it wears away, going 'Oo, Oo, Oo!' with every step like I'm 80)
Whew, think that's it. Also want to mention that I've been taking SUBLINGUAL B-12 since fatigue started, meaning tests were low despite it. I think it's the key; drs totally disregard it. Also, I was a jogger prior to this - jogged @ 20 miles a week - it was the only thing that's ever helped my life long fatigue, anxiety/depression - now, walking to the mailbox seems extreme and has me soaked in sweat.
Unfortunately, the initial illness came after several back-to-back extremely difficult events, so family dr being aware wrote everything off as depression far longer than he maybe should have.
Tested and treated for: mono, lymes, assorted infectious diseases, depression. Told that basic bloodwork (haven't had majority of tests you guys are asking for!) ruled out lupus, hashimoto's, thyroid disorder - only receiving levothyroxomine by annoying my rheumatologist, the only doc willing to work with me. my current diagnoses is fatigue nos, CF, or FMS depending on which dr you ask.
Two more things that bother me: EVERY dr I've seen tells me lab-work shows I HAD recent infection, but it's gone - well, if every lab over 3 yrs shows RECENT infection, doesn't THAT point to something? (Ans., no according to all)
Second, dentists ask me if I have lupus all the time. I say no & ask why, to get foot-in-mouth BS, no straight answer. Googled & googled, don't know what about my mouth would cause such a strange remark.
I have good ins., BCBS and don't need referrals, I will get tests you are suggesting from my rheumatologist.
I am so sorry this is so long, I feel bad writing all this when you've given me all this info to request already, just putting it out there in case one of you've had something similar.
Thank you so very much for taking the time to help a stranger. Some days, I just want to give up.
My sincerest thank you & my best hopes that your own situations are resolved
B12 serum at 179pg/mL is seriously deficient and may be causing permanent damage - in particular nerve damage as B12 is essential to maintain the myelin shealth which protects the nerves. "In Japan and Europe, the lower limit for B12 is between 500-550 pg/mL, the level associated with psychological and behavioral manifestations such as cognitive decline, dementia and memory loss." Optimal B12 serum is over 800pg/mL.
A thinning or loss of the outer eyebrows is a sign of hypothyroidism. This is called the Queen Anne Sign or Sign of Hertoghe. There is an ongoing disagreement in the medical world on the TSH reference range. The American National Academy of Clinical Biochemistry changed the TSH reference range to 0.2 - 2.5mU/L. The American Association of Clinical Endocrinologists changed the range to 0.3mU/L to 3.0mU/L.
From stop the thyroid madness:
"Did you know that there were decades of successful treatment for hypothyroid that involved nothing more than dosing you by symptoms? The TSH lab didn’t even come into existence until the mid-1970′s.
Today, the tables have completely turned. We now live in a lab-obsessed society, where most doctors completely ignore your thyroid symptoms and make your man-made lab results with the dubious ranges the holy grail of diagnosis. And diagnosis and treatment based solely on falling in a so-called “normal range” is a consistent failure, leaving millions of patient either undiagnosed, or undertreated.
Even worse, when labs are used, the majority of doctors are only doing the TSH (thyroid stimulating hormone) and total T4 to diagnose or treat you, neither which give an accurate clue to your hypothyroid condition. Additionally, ranges are made as if from God Almighty. They are not.
So…when you visit your doctor, symptoms should be the conductor of the orchestra. Then use the right labwork, and knowledge of where results should fall, for more knowledge. Below are those patients recommend you insist to your doctor that you want, or take with you when you visit your doc.
TSH But this lab is only for diagnosis of hypopituitary, NOT to diagnose or dose your hypo by.
Free T4 and Free T3 (note the word “free”–important since it measures what is unbound and available.)
Reverse T3–to be done at the same time you do the Free T3. Then calculate your ratio with the results and measurements.
Thyroid Antibodies (anti-TPO and TgAb. YOU NEED BOTH.)
Four iron labs, which include Ferritin, % Saturation, TIBC and serum iron
Adrenal Cortisol levels (but we strongly recommend saliva tests, not the one time blood test your doctor will do. One result does not tell the whole story. See below, because you don’t need a prescription)
B-12 and Folate
RBC Magnesium and Potassium (rather than serum), plus Calcium, Sodium, Glucose (all the latter are part of the Comprehensive Metabolic Profile (CMP blood test) which you can ask for, but the CMP will only test your serum levels of Magnesium, Potassium, so you’d have to do the RBC separately)
I agree with Red Star that a vitamin B12 level of 179 is seriously deficient. I was diagnosed with pernicious anemia when my levels were slightly over 200 (range 200-1100) and I do have some permanent nerve damage in my feet/legs due to lack of treatment for many years. I was also accused of being an alcoholic because my red blood cells are larger than normal (one sign of B12 deficiency). I take weekly injections and must keep my levels in the 800-900 range to feel well. I think I'm safe in saying that the B12 issue is a major one for you.
That said, you really need to have the other thyroid tests done. TSH is a pituitary hormone and is not indicative a thyroid problem, because it varies widely for many reasons.
You need to have the other thyroid tests as suggested above. Those would be Free T3, Free T4, TSH, thyroid antibodies.
Many people need their TSH BELOW 1 if not near zero to feel well. TSH is virtually completely useless.
Redstar, where did you get that letter from? Was if from a Dr? If so I'd love a copy of it so my wife & I can take it to our Dr in hopes of actually getting some treatment. Heck we can't ever get our current Dr's to test for Free T3 let alone actually adjust dosage for my wife or even consider medication for me.
Omg...I feel the same way. Are you cut from the same cloth as me? lol....What is going on, I am at the end of my rope too, and my husband keeps telling me to leave my quack doctor and find someone to help me, but I already have done stuff with her but maybe I do need 3-4 opinions...
I feel for you and everyone else on this thing who is searching for answers. Why can't we get a straight answer? My friend suggested going Holistic, only because they practice what they preach and are not afraid too...My doctor doesn't know half the stuff I read about it. It may be more money but they are one on one with you and they won't give up. I think we all should switch.
This is a very old thread and Ginger has not participated in the forum for since this was posted, so it's unlikely she will respond.
As far as doctors go, there are some very good ones out there and not just the holistic ones. Some people have to change doctors several times, before they find one who will test/treat them adequately.
I see you're Canadian. We've had some members who have had trouble getting testing/treatment because of guidelines of your health care system. Is that a problem for you?
i have been on it since i was pregnant i had my son and i cant loose weight for crap im walkin 8 miles aday and gaining weight they say im in normal range its killin me i cant even get out of bed im so depressed on it and they say its my fault im not loosing weight and i am mean on it i want to get off it i was loosing weight off it and gaining it back off it but now that im on it i cant loose weight at all
I have a question if anyone still checks this. I have seen over five different Dr's over the span of 9 years for thyroid. The first Dr. was trying to help me with my daily headaches, did a blood test and called with the results saying that everything was normal other than my thyroid was a little low but nothing they were worried about. About a year later I see another Dr. with symptoms thinking I'm pregnant, only to find out that I had an underactive thyroid. He then tells me that the headaches I have been having were caused by the thyroid. Go ahead and I see another Dr. who wants to help me lose some weight by increasing my medication a bit. Seemed okay got pregnant which threw everything out of wack. Had the baby and they kept me on the increased dose because they said it worked with my levels, trying to figure out why I wasn't feeling good still. Dr. sent me to a specialist a year later to have them tell me I was on the wrong dose for over a year and because of the increased dose it was causing me to gain weight. Now my new Dr. just did a test and said my TSH was .59 I think and I was wondering if increasing my dosage would help with my fatigue and the fact that I still can't lose any weight and they tell me that it will just make me more tired!! I asked about the T3 and T4 when they did the last test and they told me that they don't need to do them because they all tell you the same thing. I'm just trying to figure out how some many Dr's can all tell me something different. What do I need done so I can feel normal and not continue to gain weight all the time. I'm even on the prescription diet pill to help with the weight loss but it isn't working as well this time like it did before. Please help if you can and if you know any sources to print off information to take to the Dr. to get some strait answers. Thank you.
Your doctor is dead wrong...once on thyroid meds, it's absolutely essential to have FREE T3 and FREE T4 tested every time blood is drawn. TSH is totally inadequate to be used alone to manage meds. TSH is a pituitary hormone. As such, it is subject to many influences other than thyroid hormone levels. It's an indirect measure of thyroid status, not nearly as useful as the direct measures of the actual thyroid hormones, FT3 and FT4.
Not sure if anyone checks this. Looking for advice.
For the last year, I have gained weight (22 pounds), hair falling out, constipated, and had cold intolerance. I was seeing my GYN for several months last year trying to get to the bottom of this. I had my birth control pill switched numerous times, thinking that was the case. I stopped going to the doctor, and only went back in early March because I started forgetting things and couldn't concentrate at work. Finally then, my GYN ordered bloodwork for TSH and Vitamin D.
She called me with results. TSH was 9.9 and Vitamin D was 20. She told me I had to see my primary to be treated.
My primary Dr started me on 50mcg of levothyroxine, and 2,000iu daily of vitamin D, which I have taken every day since March.
I went back to the doctor this week because I am not feeling much improvement. The constipation has gotten slightly better, my hair isn't falling out as much, and I can concentrate better. However, there are some days where I feel MORE tired than I did when I first start thyroxine. It hurts to keep my eyes open. Yesterday I forgot to take my thyroxine for the first time, and I actually felt less tired. Took it this morning, and I am struggling to get through my day.
Anyways, my Dr checked did some blood work, and TSH is 3.65and T4 Free is 1.1 He did a CBC and said that since everythign in CBC was within normal range, there is no reason to believe I am deficient in iron or anything else.
I am wondering if the levels above are normal. He says they are. And, if it's possible for the thyroxine to make you feel more tired than if you didn't take it.
What's the reference range on your FT4? Ranges vary lab to lab, so you have to post them with results. It looks on the low side.
AACE recommended many years ago that TSH range be changed to 0.3-3.0. Given that somewhat more updated range, your 3.65 would indicate you are hypo (under medicated).
That's a serious D deficiency as D often has to be well up into the range for thyroid to function properly. Many doctors will prescribe 50,000 IU per week until levels start to rise. You might ask your doctor to retest, see if your numbers are improving and adjust dose if not.
If you're not being adequately treated, your symptoms can get worse. However, skipping one dose does little to lower your levels since your levels today are an accumulation of everything you've taken in the past 4-6 weeks.
This is what the lab results say:
TSH - value 3.65 - Std Rang 0.27-4.2
T4Free - value 1.1 - Std Range 0.9-1.7
I have been on the thyroxine since 3/20. Is it possible that it hasn't accumulated enough to give the full effect? Perhaps that is why my Dr didn't want to increase my dose?
I was a little concerned that he didn't test T3, after some things that I read here.
As I was leaving, he made a passing comment that fatigue is the #1 symptom of depression. Pretty bizarre - I certainly do not think that is or ever was an issue! It just worried me that he may be dismissing how I really feel.
I feel worse now than a few weeks ago. Maybe it's the vitamin d deficiency. (Which he also somewhat dismissed. I live in upstate NY. He said that we are all deficient until summer.)
My vitamin d level was 15 last year around this time. He did prescribe me 50,000 IU per week for 12 weeks. Then never tested again. My GYN did, sent the results (20) to my primary, and he said to take 2,000 IU a day. Maybe I will have him recheck.
I don't want to be over medicated for the thyroid, as I've read that can cause a host of issues as well. But, I started searching for some feedback today because I am sitting at work today fighting with my eyelids. AWFUL feeling!
Your dose should have reached its full potential in your blood at this point; it's been over 6 weeks since you started. I disagree with your doctor; I think that you need to increase. Your FT4 is only at 25% of range, and most of us find that it has to be right around 50% before we feel well. The need for an increase is reinforced by the fact that you still have hypo symptoms. Many doctors believe that everyone feels well anywhere in the range, and that couldn't be farther from the truth. We all have a level that we feel best at. Meds should be increased until symptoms resolve.
Doctors love to blame hypo symptoms on depression.
You're absolutely right; he should be test FREE T3 as well.
Vitamin D is necessary for thyroid hormones to be able to work properly in your body. Once again, some people can tolerate some deficiency in the winter, but many can't, especially people who are also hypo.
Oh, believe me, I've fought my eyelids, too. LOL You're a long way from being overmedicated. If you increase slowly (typically 12.5-25 mcg each time), retest at 4-5 weeks and increase more as necessary you should be able to avoid hyper symptoms. I've been overmedicated, and though unpleasant, being a little hyper for a short period of time is not the end of the world. Slow and steady increases work out best in the long run.
He is sending me for a stress test and echocardiogram on Tuesday, since I complained of very mild intermittent chest pains. I am sure everything is fine!
I was thinking I would wait for him to call me witht those results and tell him I am still feeling so terrible that I am having a hard time getting through my day. And will request Vitmain D recheck and Free T3. Although I venture to guess that he wouldn't know enough about the free T3 to even interpret what the results mean.
I was considering increasing my own dose by 12.5 mcg, but I hate to do that without a physician being on board and monitoring things.
Well, he has yet to even check FT3, so that leads me to believe that he doesn't (a) doesn't see the importance of it, or (b) doesn't realize that he should order this in conjunction with the others!
I just find it odd that I feel very sluggish for most of the day, but start to feel better at night. I take thyroxine around 7am, and by 11am I can barely keep my eyes open. Around 5 or so, it seems I finally start to wake up. Any thoughts on if the Levothyroxine is making me feel fatigued as a side effect? I don't understand why I feel worse now than I did a few weeks ago. (Or, as in our other posts, the vitamin d may me the culprit)
I'm sure vitamin D is contributing to your fatigue. Fatigue isn't a "side effect" of levo, but if you're not on enough levo, you can feel more fatigued (and other symptoms can worsen, too). That's because the pituitary sees the extra hormone that you're taking, cuts back on the amount of TSH it puts out, and your thyroid produces less. So, overall, your free levels might actually go DOWN a bit. Worsening symptoms is a very common complaint on starting meds.
Levo is very slow acting and has to build in your blood over time. So, the cyclical fatigue you describe most likely is not from the levo. Have you had adrenals checked? When we're hypo, our bodies compensate for the lack of thyroid hormones. Adrenals are infamous for stepping in and trying to compensate for lack of thyroid hormones. Once on thyroid meds, the adrenals have to rebalance. Adrenal hormones (cortisol) are very fast acting and can change how you feel from minute to minute.
Do you have your labs from before you started meds? Has your FT4 changed at all?
I do not believe I've had adrenals checked. Unless that shows on a CBC or lipid or metabolic panel.
I do have labds from before I started meds, however, my doctor didn't check FT4 at that time. He only checked this once my TSH initially came back at 9.9 and after I had been on thyroxine for 6 weeks. Unfortunately, there is nothing for me to compare it to. And, I think I mentioned before, he has yet to check FT3.
Have you ever experienced chest pain with any of this? Mine is mild and intermittent. But yesterday, it was happening more often and it worried me. (Possibly because now I am looking for it and causing myself anxiety - who knows.) So, I made the mistake of turning to Dr Google last night while I was laying in bed, and I have myself worried that I have something wrong with my heart! I had no idea that thyroid can affect the heart.
No, adrenal testing would be totally separate from the tests you listed.
So, all we have is your TSH to work with. It has come down, from 9.9 to 3.65, but it's still too high.
Thyroid very definitely affects the heart. I have a congenital heart defect that has caused me to have intermittent tachycardia all my life. Before thyroid meds, it was totally under control without any kind of meds. Once on thyroid meds, all hell broke loose.
I have had angina when overmedicated. For me, that was more of a "tiredness" across my shoulders. Your chest pains are probably meds related, but you should definitely have a cardio workup just to be sure. If nothing else, it might allow you to relax and stop calling Dr. Google!
Stress and echo all came back really good today! Thank goodness for that!
I have asked around about physicians, and have one I am going to check out. I think I will switch. Or ask to see an endocrinologist. However, I don't feel confident with how my doctor is handling this, so how would he handle something else? Much less if I ever had a crisis!
Another piece of news...my mom decided to go get her thyroid checked. She's had some similar symptoms as mine, and some very different. Results back today, and her TSH is 24. She's starting on 100mcg tomorrow morning!
That might be a very high starting dose for your mom. How old is she? Typically, starting dose for people over 50 or people who have been hypo for more than a few months or people with a history of heart arrhythmia is in the range of 12.5-25 mcg, increasing as needed and as tolerated.
She should ask for a copy of all her labs and start keeping her own history. Did her doctor test FT3 and FT4 as well?
I thought that seemed very high to start with as well. My doc started me at 50 and I tried that for a week and couldn't sleep and felt achey. So I had to take 25 and increase to 50. My mom is 52. I believe she has arrhythmia as well - her heart skips beats, but her doc has never been concerned with that.
She has been experience belly pain for about a year. It's to the right of her belly button, and hurts her more often than it doesn't. She says it really hurts when she presses on it, or if there's any pressure on her tummy. Sometimes she has to visit the bathroom very shortly after eating, due to tummy upset. So she's been looking for answers. She had a colonoscopy, and had seen her GYN and they didn't find anything. She saw her primary doctor to see if he could figure it. He sent her for some blood work for that, and she requested to have her thyroid tested. When he called her yesterday, he said her TSH is so high that it's likely been causing whatever this belly pain is. (Really? I haven't read anything like that, but then again, I've been trying really hard to NOT google symptoms.) So he decided to hold off on the CT scan until she's been on the thyroxine for a few months.
My mom is very passive with doctors. She never asks questions, and just does what they say. Opposite of me, that's for sure! I will see if she will get a copy of her labs. He did not test FT3 or FT4. She goes to a different practice than I do. Seems that doctors around here just medicate based on initial TSH results.
I really think it would be better if your mom started out on a lower dose. Maybe she could ask her doctor about that. When I started meds, I was over 50, had been hypo for about 18 months and have a heart arrhythmia. My doctor started me at 88 mcg, and it was way too much.
Belly pain is not a typical symptom, but if her thyroid is off, it can exacerbate something already there. For example, old injuries will often flare up when hypo.
I'm familiar with "passive with doctors"...my in-laws. She just has to insist on FT3 and FT4. Once on meds, TSH often becomes useless. Good luck with that...maybe as the daughter, rather than the DIL, you can make an impression.
24 - holy crap! When first diagnosed with Hypothyroidism, was a 9.27 and I thought that was dramatically out of range. Yea, but tell your mom that this Levothyroxine will make her horribly fatigued as her body adjusts to this stuff. I've slowly built up from 25 mcg to 50 mcg and am constantly tired. So tired, in fact, my doctor told me to take it at bed time (but a couple hours after I eat as it works best on a near-empty stomach). FYI: I'm a 220-lb man.
Hi there! I'm glad to hear that both my mother and I are not alone with the fatigue actually getting WORSE once starting levothyroxine! I am happy to say that I no longer feel this way, however, my mom is still adjusting and needs frequent naps.
My first TSH test came back within normal limits. Months later I went to a new doctor because I wasn't feeling any better. I still felt depressed and extremely tired all the time. This new doctor did blood test for TSH, free T3, Free t4 and antibodies. I was diagnosed with Hashimotos. I read that people usually have Hoshimoto's before it becomes hypothyrodism. I hope this helps.
Im not a medical person at all but Im been reading holistic medical stuff for a long time so something I came across today. There is a book called the medical medium. I briefly skimmed it and the author says that a lot of illness, especially the mysterious ones ie. fibromyalgia/thyroid disorders/ etc is actually caused by the Epstein-Barr virus setting up shop in the body and in fact Mono is just a stage 2 version of this virus but it can remain hidden creating all sorts of havac as it moves around. Ive been working with a naturopath and Accupuncturist who is trained in BIE. I just found out I have thyroid issues but Im so friggin fatigued its ridiculous. Next time I see my Accupuncturist/BIE practitiioner Im going to have her muscle test me for this virus. My body also has shown thats its been fighting a low grade infection for a long time so who knows...maybe its that.
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