I've been suffering with a slew of symptoms over the past few years that sound a lot like hypothyroidism. A little over a year ago I went on medical leave because the fatigue, pain and brain fog was too much to work through. I had been pushing myself very hard up until the end trying to deal with it and it kept getting worse. Every doctor I saw thought maybe it was my thyroid, but testing showed my thyroid was normal. Eventually wound up with a diagnosis of fibromyalgia and chronic fatigue syndrome.
I found a doctor last week recommended by two of the pain specialists I see who is an integrative medicine specialist. Initially skeptical, she's the first doctor I felt REALLY listened. She decided to prescribe a low dose of levothyroxine even though my thyroid levels are in the normal range, the t4 is just barely above the lowest level of normal. She said I'm the first person she's treated for hypothyroidism with levels in the normal range, but hearing my history; she said "thyroid" kept jumping out at her.
So Thursday, I started the medicine first thing in the morning. By Thursday afternoon; the chronic pain I normally feel (a deep, muscle ache that feels like its almost in the bones, similar to the flu or growing pains) went away on it's own. This sometimes happens on its own, and I never know when or why. But by the next day, I swear my thinking was much clearer. I've had a two day long migraine (probably unrelated, I get them frequently and I was over due for one) so I haven't been able to really test how much better I am.
But, from what I'm reading it takes time for thyroid meds to build up. So am I imagining it? I've had period of increased energy and less pain up to two weeks, but the brain fog never seems to go away, and increased energy isn't the same as normal energy. I also can't tell how my energy level is now because sumatriptan, the medicine I take for migraines always makes me feel tired.
Is it possibly real or it the placebo effect? I normally am very sensitive to medications, or even worse, have paradoxical reactions. Everything I've read says it takes several days to build up to the right plasma level, and weeks for symptoms to subside. I'm on 25mcg (0.025mg).
I've been tested for thyroid antibodies and it came back negative. The most recent thyroid panel was this past October and it was:
TSH - 2.57 [0.45-4.5]
T3 Free 2.8 [2.0-4.4]
T4 Free 0.87 [0.82-1.77]
T3 Total 119.4 [83-200]
My TSH has fluctuated between 2.2 and 3.5 over the past 2 years (because doctors keep testing, expecting to find hypothyroidism. That test above was the first time all the important hormones were tested, though I did have my t4 tested in March of last year along with my TSH - at that time it was
TSH - 2.2 (lowest I've seen it) [0.450 - 4.500]
T4 Free - .94 [0.82 - 1.77]
To be honest, I'm not even entirely convinced it could be my thyroid - the level of debilitation has been severe, especially if it is an extremely mild case of functional hypothyroidism. But one of the pain specialists I saw was the one that pointed me to this doctor, and she said she did have one other patient with similar symptoms that resolved with thyroid medications.
The following user gives a hug of support to vickyb2011: lisa789 (01-13-2013)
Welcome to the board although I'm sorry for the reason you're here.
Several things in your post caught my attention for one, I don't agree with your doctors that your levels are oh so normal (aka within ranges) so your thyroid would be fine and would not be causing symptoms.
1) TSH can be influenced by several factors (fluctuates up to 3 points during the day - what time has your levels been done); point is it can give an indication of hypoT but it does not give sufficient information
2) the reference ranges of TSH are too broad, healthy people will have a TSH of around 1 (or little above); AACE has stated that TSH of >2.5 is suspicious of hypoT.
All this just to say your levels aren't all that great, so it's good that your doctor started treatment (because imo you need it).
Were you ever tested for antibodies? might be good to have those done too so you know whether you've got those or not.
Symptomwise: TSH does not cause symptoms, it's not an actual thyroid hormone (FT4 and FT3) are the actual thyroid hormones and the ones causing symptoms when they drop too low for the body's need. Healthy people will have FT4 and FT3 about 60-80% of the ranges, so keeping that in mind, near bottom might be within ranges but sure can be (and will be for most) causing symptoms.
With those levels I'd be feelign very sick so again so yes even with levels looking a bit off at first sight one can feel very sick.
within ranges is not good enough when it concerns thyroid.
As for the timing: think 2 things are to keep in mind
1) thyroid symptoms can come and go, migraines for a few days, gone again and it's like that for a lot of symptoms, so the medication of today is not solving the symptoms of today, does not work like aspirin.
2) there are adjusting 'symptoms' or an adjusting phase: meaning after every dosage adjustment/increase the body needs time to adjust (in general that starts about a week later).
In general it boils down till :some don't feel much, others experience hypersymptoms (those flare out and are temporary) and others feel improvement soon since the body gets what it needs and like it.
all this is temporary until levels are at a good point, stabilized, optimalized. so it's possible that there is improvement in energy level, it's also possible that this seems to worsen again (the dosage still needs to go up), but all that is part of the meds titrating process.
In short: it does take time for the meds to build up in the blood, the meds titrating process takes time and achieving wellness again requires patience, but it's possible that one feels some improvement rather soon, it's also possible that that improvement does stick yet, all that is quite individual.
For those of you with hypothyroid symptoms, how many of you experience pain? And how would you describe it? Pain is one of those things I seem to see a lot of varying opinion on as it relates to hypothyroidism.
Thanks for all the helpful information, Lisa. I'm glad to hear I'm not crazy for having severe symptoms even though my levels are "normal". As for the treating doctor, she too felt that normal isn't necessarily normal for me. It's just taken me several years to find a doctor that is willing to think outside the box while not being crazy pants. (I saw a doctor earlier this year that was just . . . well, he did prescribe thyroid medicine but his other treatments were soooo off the wall that I didn't trust him and he started me out with a very high dose. As someone with high blood pressure and a propensity for palpitations and tachycardia, it seemed really dangerous.)
Your description of symptoms changing seems to be right on the nose, they fluctuate wildly, sometimes I'm "okay", most of the time I'm not, but even within that I tend to have wildly fluctuating symptoms. The fatigue and brain fog are always though. My hair is not particularly thin but it is extremely dry. I did have some thinning though in the beginning. Lots of acne too.
The doctor that is treating me with levothyroxine wants to see my TSH between .8 and 1. Now, I know a lot of things suggest that you shouldn't only go by TSH, but I don't think she plans to only use that. During our initial visit, she said she wanted to see a corresponding rise in FT4 and FT3 and that would cause the TSH to go down. She doesn't believe in treating with natural hormone, though she has in the past in certain circumstances. Her preference is to treat with T4 first, and if necessary, add T3, so if all my symptoms don't go away, she's going to be monitoring all of the above.
I have had thyroid antibodies tested, and they came up negative:
Reference range: <9.0
I don't know if that means I have a small number or if 0.3 is as low as the test goes.
My big concern is that thyroid isn't the problem. I've seen a lot of doctors over the past few years, and been out of work the last year. One doctor diagnosed me with fibromyalgia, another fibromyalgia and chronic fatigue syndrome; but in both cases they said they were diagnoses of exclusion; because they couldn't find anything else wrong.
I've also been reading some information from some well respected Dr.'s, Dr. Mario Skugar of the Cleveland Clinic and Dr. Theodore Friedman of UCLA, and at least with Dr. Friedman, he discusses all the endocrine things that other doctors don't think to look at such as HGH deficiency, or aldosterone deficiency, which is often missed if it isn't concurrent with cortisol deficiency as in Addison's. If money were no issue, I'd go to see Dr. Friedman in an instant, I think he's probably the most likely to find exactly what is wrong, while the doctor that is currently treating me seems good, her specialty isn't weird, difficult to diagnose fatigue-type illnesses with endocrine causes.
Plus I've read that if you have a chronic illness it can CAUSE low thyroid levels, not the other way around. So I don't know what to think anymore.
My little bump in feeling better seems to have passed, unfortunately. I guess I wait and see now if it was placebo effect, or if as it builds up I start to feel better.
The late Dr. John Lowe was an expert in the treatment of fibromyalgia. His research (and that of others in the field) concluded that it's basically a thyroid disease, a flaw in the way thyroid hormone is used at the cellular level.
Widespread muscle and joint pain is considered a classic hypothyroid symptom. Most people report at least some degree of it, others are debilitated by it.
Your basement-level free T4/3 are proof that you're hypothyroid. Have no doubt about the diagnosis and be grateful for it.
__________________ "We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses." Abraham Lincoln