I was diagnosed in October 2004 and had been taking 100 mcg/day, which was recently upped to 125 (I’ve been taking that dosage for about 7 weeks now). I’m still experiencing some of the symptoms, but seem to have a bit more energy now. I’m not sure that I thoroughly understand what the T3 and T4 levels mean, though. Please share with me your experiences with Hypothyroidism as well as with taking medication for it. A friend recently shared with me that generic thyroid hormone doesn’t work as well as a name-brand (my prescription is levothroid, which isn’t generic, I think).
I’ll admit I don’t know the most on the subject, but my girlfriend has that condition and was recently prescribed a medicine called “armour”. I would highly recommend looking into it, as it contains all the horomones your thyroid produces, not just a couple.
Yep, I was diagnosed about 3 years ago. It took nearly 2 years to adjust my Synthroid to the 125 mcgs I’m taking now, and although my TSH level is well within the low-normal range (around 1), I still have some of my symptoms. The migraine headaches; brittle hair; dry, craking skin; constipation; and chronic fatigue have mostly vanished.
I suffer the anomia to a much lesser extent, but still have some difficulty finding the word in my brain that I want to say (my husband has gotten quite used to figuring out what specific item a “thingie” is most likely referring to). In the beginning, it was quite literally painful to try to express myself. My head would hurt from trying to come up with, for example, the word ‘fork’, even though I obviously knew what the four-pronged item in my hand was. Very frustrating and very scary.
The severe, and sometimes debilitating joint pain I used to suffer is also greatly diminished – I can at least roll over in bed without having to sit up, reposition, then lay back down. But I still have extraordinary pain in my left elbow, which there seems to be no explanation for. And the only symptom I haven’t been able to combat is the weight gain. At one point (last fall) I had lost 20 of the 45 pounds I’d put on, but at enormous effort and gruelling workouts. Not that I’m complaining about having to put in the effort, but then I injured my back and was not only laid up in bed for a week, but on strict doctor’s orders not to do any form of exercise for months. Naturally, I’ve gained back half the weight I’d lost, and though I’m working with a trainer again, it’s being stubborn and not coming off at all this time. GRRRRRR.
I think I might benefit from the addition of T3 supplementation, but was unsuccessful in ever convincing my former endocrinologist to prescribe it. I’ve just switched doctors, and even after only one visit so far I like this one much better. Perhaps she’ll be more open to considering prescribing T3 or switching me to a combo med, like Armour.
For more info on T4 and T3, I recommend reading “The TSH Story” and “The T3 Story” at alt.support.thyroid. It’s an excellent reasource for information, written so that it’s very easy for the lay person to understand.
And just in case your doctor or pharmacist hasn’t warned you (I’ve talked to quite a few hypothyroid women who weren’t told this), don’t take anything with calcium within an hour of taking your thyroid meds, as calcium inhibits its absorption and it’s basically like not bothering to take your meds at all!
I was diagnosed in 1999 or so but I’ve been borderline since about 3 years old (I’m 27). I’ve been on 50mcg ever since. I upped to 100 once. It was a disaster. I was
It’s amazing the difference it can make in your life. I went from sleeping 12 hours a day with naps to 8 hours. My random pains disappeared. My hair straightened. My skin stopped cracking in dry weather. My headaches disappeared. The tremors in my arms and hands disappeared. However, it’s still quite hard to lose weight with the combo of birth control and hypothyroid.
I haven’t seen a difference between levothyroxine (generic) which I’ve been on for 3 years and Synthroid (which I was on for the other 4), other than it saves me $25 a month. I’m on a very, very low dose, though, if that might make a difference.
That unfinished sentence should read:
I was jittery, my heart raced and I was always hot.
Thank you all so much for the information, especially Shayna - it was extremely helpful in explaining things to me. I’m very careful to take my med on an empty stomach, first thing in the morning, but you’re right - the doctor hadn’t told me about not taking multi-vitamins until 4 hours later.
My HMO (who shall remain nameless but it starts with a K and the second name starts with a P …) hasn’t explained much to me about the hypothyroidism; I’m not even certain that I have Hashimoto’s Syndrome. I’ve had terrible problems trying to lose weight and unfortunately need to lose - a lot. Right now, I’m in preparations to have the bariatric surgery - I’ve started the process but it will be about 6 months before it will happen. I’m also going to try Weight Watchers (we’re supposed to try to lose weight before the surgery) in the mean time. My knees are very arthritic and it’s hard for me to walk any distance, so I’m also looking into aquatic exercise programs.
I’ve had problems with my weight for a long time, but right after I was diagnosed with the hypothyroidism, I fell (at work) and broke a bone in my left foot, so was in a cast up to my knee for 6 weeks. I was pretty much laid up and that’s when I put on an extra 50 lbs.
Anyway, that’s my story. Thanks again for the info on Hypothyroidism; I’m also going to work on getting my primary care doctor to refer me to an endocrinologist because I think I need to see one.
Far as I can tell, my thyroid packed up and moved out a few years ago. Currently, I’m on 300 mcg of Levoxyl. (Strangely, my insurance covers Levoxyl at the generic price, but Synthroid is a non-formulary brand name, costing 5x as much.)
I was diagnosed a few years ago. No bad symptoms, my blood work came back with strange readings from a company health fair and I checked with my doctor. Been on 0.1 mg a day of levothyroxine since. I was told about avoiding calcium. And it has been easier to control my weight since then.
Holy Cow!
One of my mother’s cousins has “some sort of thyroid problems”. She married a cousin (from the other side of her family); their daughter has “some sort of thyroid problems, too”. Thing is, we only run into them at weddings and funerals, so I’d never heard what the symptoms are.
Excuse me while I go grab my mother and send her to get her thyroid checked… you’ve described symptoms that both Mom and her mom suffer, in lowish degrees but the “I speak for intelligent people!” is a pain.
I have Hashimoto’s. I was on 112 mcg for years, but that’s been upped to 125 in the past 6 months. My doc told me that, although it’s not supposed to happen, she’s found that the generic meds vary in quality, and she’s had a number of patients with problems that settled down at the same dosage once they switched to Synthroid.
I feel much better these days at 125; I was constipated and cold and lethargic for a while and gained a bunch of weight. The weight hasn’t gone down, but I’m not freezing all the time, and I don’t need naps like I did before.
I take my vitamin with calcium before I go to bed. I take the Synthroid on an empty stomach at least 1 hour before breakfast.
I was diagnosed at 14, more than a year after having had a very high fever for two weeks that left me feeling drained. Mine is autoimmune, which is called Hashimoto’s disease. The autoimmune kind is interesting because the body’s attacks on the thyroid ebb and flow, and the thyroid recovers a little and is then beaten down, so the TSH and T4 readings don’t always make sense with each other (if the T4 is too low, for example, the TSH is supposed to be high, and vice versa).
When I was diagnosed, I wasn’t sure that I had ever recovered from feeling tired after the long fever, or if I’d just gotten used to feeling tired. I had a slight goiter, and my periods were light but nonstop. I was actually diagnosed when I passed out from anemia. The medication did not provide any appreciable increase in my energy or any weight loss. The goiter went away, and I was put on birth control pills to regulate my periods, and I’ve been on them ever since.
Because I’ve been on thyroid medication for so long, I can’t really say what life was like before it and before my autoimmune attack (which happened right before my 13th birthday, when people tend to change very suddenly anyway). I do sleep a lot, averaging 9 hours a night, and I don’t have the stamina that I should. I’ve also always been a little overweight, and find it a very slow and difficult process to lose weight. Possibly this is because of the thyroid thing–possibly I’m just lazy and out of shape. I don’t know.
Just to clarify: as I understand it, TSH’s correlation to hypothyroid is that as your thyroid slows down, the TSH levels ramp up because its job (Thyroid Stimulating Hormone) is to try to ramp up the thyroid. So a reading of, say, 7 would mean you’re hypothyroid while a reading of 2ish would mean you’re in the middle of the normal range (I don’t remember exact numbers but 7 is certainly in the “thyroid is too low” range). A TSH level of 1 would seem to imply your thyroid levels (natural and/or supplemented) are either just fine, or perhaps even too high.
I don’t recall what the T3 and T4 numbers correlate to - I think low T3/T4 numbers mean low thyroid, as opposed to the inverse with TSH.
Anyway… my own experiences: Summer of 1998 I saw a new internist because I’d switched health insurance. She took one look at me and tested me for hypothyroid: weight gain and extreme fatigue. Also high blood pressure (more common with hypERthyroid but apparently can happen with hypO). I tried arguing that there were excellent reasons for both of those (overeating, plus two young kids with very severe sleep issues, and of course weight triggers hypertension) but she tested anyway and sure 'nuff my thyroid was slowing down. I was put on Synthroid and felt better for a while. Weight inched down a tiny bit but not much - the overeating really was (and is) the main culprit with that. The BP didn’t respond to the thyroid meds which didn’t surprise me (that was dealt with a few months later).
Since then I get checked 2-3 times a year and the dosage has gradually been increased - right now I’m on 100mcg (I think) a day.
I got to feeling significantly worse over the years fatigue-wise because my RLS (sleep disorder) has been progressing, but this past fall I realized my fatigue was far worse than even I was used to, I’d become very cold sensitive, my weight was inching up, and I was having a lot of trouble with constipation. My thyroid-slowed brain finally put all that together, I went to the doc, got retested - and sure enough my levels had gone from “perfectly normal” 6 months earlier to “quite low”. Meds increased, cold sensitivity/constipation improved, fatigue still grinding.
I was in my first real job and had my own health insurance fresh out of grad school in 1990. I felt fine but hadn’t had a check up in years so I scheduled on. My blood test showed a cholesterol level of over 330. The doc ordered another test and found that my thyroid was way out of whack. My levels were way off. Essentially, my thyroid was present but it was just taking up space in my neck. The strange thing was that I felt perfectly fine, am slim, and hadn’t put on any weight.
The specialist put me on 150 mcg of Synthoid per day and had me come back in a month. He way overshot the mark. This time my levels were way out of whack in the other direction. I still felt the same as I always did though.
We finally settled on 75 mcg, six days a week. This has remained the correct dosage for fifteen years.
In the last 90’s there was some kind of class action law suit against the makers of Synthroid. Price fixing or something. I saw an ad in the newspaper about it and sent away for a form. Several months later I got a check for a couple of hundred dollars. Woo Hoo!
I’ve on the other end of the scale – I’ve got Grave’s Disease, a hyperthyroid condition. It’s actually the best disease ever – I eat and eat and eat and still lose weight. But I’m told that because my thyroid is revving hot, it will eventually burn itself out, so I’ve got all this to look forward to in 15-30 years.
–Cliffy
I’m also hypothyroid, Hashimoto’s. I was on 150 mcg for a long time, but last year had to go up to 175 mcg. I’m on levothroid, but have taken levothyroxine and synthroid in the past. I’ve been on thyroid meds since I was 18. Other people with hypothyroid include my dad, my grandma, and my three sisters. I don’t have much to say that’s already been said. Frankly, the medication doesn’t do all that much to ease my symptoms. I really wish I could find a doctor willing to put me on armour, because I’ve heard it works much better, but I can’t. I’ve had a terrible experience with an endocrinologist. He basically accused me of trying to get my medication upped so I could lose weight. In return, I gave him a nice piece of my mind. The meds do help with the brain clouds, but I still get really tired.
P.S. Cliffy, I hate you. 
I’m glad I could help, tarragon. I hope you’re able to find a good doctor who will help you feel better. It’s a lot tougher than it should be – for some reason doctors treating this disease have a reputation for not listening to their patients and for under-treating based on lab results instead of adequately treating based on symptom suffering. It’s bullshit, so just keep fighting and change doctors if you have to.
And having (or wanting) to lose weight when you have debilitating joint pain that prevents comfortably doing even the most basic exercise, like simply walking, is one of the most frustrating aspects of dealing with this thing. If you can afford it, look into working with a private trainer who is also knowledgable about nutrition. The guy I worked with last year designed a program for me that was very low-impact for my joints, but still metabolism-increasing and muscle-building, so I could get the maximum benefits with minimal pain. I wish you well!
Nava, direct your family members to this checklist, it’s much more comprehensive than the few symptoms I listed. Not everyone suffers from all the same symptoms. Interestingly, in re-perusing that list, I found another symptoms I’ve been suffering that I hadn’t associated with this disease; dry, gritty eyes. I wake up every morning feeling like I have sand in my right eye.
And speaking of the various symptoms, it’s one of the reasons many people don’t consider having their thyroid checked, because the symptoms seem so unrelated and can often be mistakenly attributed to other things. It didn’t occur to me that any of my symptoms were due to a single disease or source. Dry hair – been coloring it for too many years with OTC products. Dry skin – not drinking enough water, just drink more. Joint pain – well, I’m getting older, perhaps a bit of arthritis is setting in. Late day fatigue – not sleeping well enough at night because of the joint pain. Weight gain – like everyone said, maybe “marriage must be agreeing with me.” I was eating out more often and exercising a bit less because we were busy doing other things besides going to the gym. There was a perfectly logical reason for every symptom that might’ve had nothing to do with each other. Except they did.
So definitely encourage them to discuss their symptoms with their doctor. And if necessary, insist on the thyroid test even if the doctor tries to brush them off. That’s what mine did when I first brought it up. He only relented when he saw the condition of my nails (which I also hadn’t related to everything else I’d been feeling). And of course I was right.
Sort of, but not quite, as TSH isn’t the only indicator of a thyroid condition, nor does “normalizing” it through supplementation “cure” the thyroid. Also, labs and doctors can vary widely in their idea of what the normal range even is. Not to mention that it’s just that – a range. Some people feel just fine with a TSH level of 5, where others still feel like crap with it as low as 1 or 2.
For me, since I tested positive for thyroid antibodies and therefore have Hashimoto’s disease, a TSH level of 1 on a test taken today, only indicates that I am injesting enough T4 artificially to trick my pituitary gland into not having to send out the stimulating hormone to try to make the thyroid produce it. If I were to stop artificially replacing the thyroid hormone (thyroxine), it would once again trigger my pituitary to send out greater and greater amounts of TSH, because my thyroid simply doesn’t work on its own. It’s broke. 
In addition, because TSH is a pituitary hormone, it only tells part of the story. As the link I posted up thread says:
And then there’s the issue of Free T3. I may be ingesting just enough thyroxine to mimic normal thyroid signals to the pituitary, but if my system isn’t converting the T4 into T3, that can also result in persistent symptoms.
If you’re still feeling bad, I’d definitely talk to your doctor about testing for antibodies and T3 if they haven’t already. I wish you well, too!
And on preview, you too, yellowval!
(And I can’t hate Cliffy, because until I turned 41 and contracted this disease, I basically was Cliffy (though without a diagnosed over-active thyroid due to disease). We had a longtime family joke about how my sister, who had been chubby and overweight since birth, could merely look at a single piece of chocolate cake and gain 10 pounds, whereas I, who was born underweight and stayed that way, could eat an entire chocolate cake and lose 10 pounds. <sigh> It was great while it lasted.)
I also have autoimmune/Hashimoto’s - was diagnosed about 13 years ago (I’ll be 43 this Nov.).
At first, my GP was treating me, so I only got Synthroid for years. I’d tell my doc I wasn’t feeling any relief of my symptoms, and she’d say “well, the tests say your TSH level is fine.”
Very frustrating.
Then I had a test come in that made her take me completely off the Synthroid cold turkey! I was pretty upset, and asked another doc for a referral to an endocrinologist.
He put me back on Synthroid and added Cytomel (for the T3), gradually getting me to where I need to be. I’m at 150mcg Synthroid, plus 5mcg Cytomel twice a day.
I also did learn to take my thyroid meds on an empty stomach (which can be damned inconvenient), and to avoid calcium and iron within several hours of taking them.
Yeah, it’s the bee’s knees. For now.
–Cliffy
I’m hypothyroid, formerly hyperthyroid. I had (have?) Grave’s disease, of such severity that my resting pulse was around 120, and climbing a flight of stairs left me completely out of breath. The doctors gave me radioactive iodine to kill off my thyroid. Two doses, to be precise, with the goal of making me hypothyroid because it’s an easier condition to treat. I’m now taking levothyroxin, 100mcg/day, though they’re still in the process of fine-tuning the dosage.
I know it’s a bit late to contribute to this thread, but I cannot recommend highy enough this site from a prominent endocrinologist. The site is balanced and very evidence-based. In other words, as much as poosible, any statement or recommendation it contains is based on the results of sound medical studies.
In particular, I urge to check the section on “Optimal Thyroid Replacement”.