I think having more labs for comparison will be helpful for you and your doctor. If after your next appointment you are dissatisfied with your care, by all means press on in finding a doctor with whom you can work. Good luck!
Just out of interest, could you post a list of the quantities being tested in tomorrow morning's bloodwork?
Pulmonary, Complete PFT
Comprehensive MEtabolic Panel W GFR
Vitamin B12 & Folate
Anti TPO and Anti Thyro AB Panel
Thanks. Just looking for info on what I should get tested before I see my endo. Good luck with everything.
I have similar symptoms, and I was on synthroid for 8 weeks before I started synthroid i has a TSH of 3.75, I went on 50mcg synthroid for 8 weeks and i felt like crap. I went to a top endo dr for a second opnion in ny and he said you are not hypo and is now testing me Cortosol and adneral functions. He said that if you were truly hypo your numbers would have dropped more and that I am within the range that 95% of the population is in. Also my free T3 and T4 and antibodies are normal. He said no need to take medication when it is not meant for me and is not helping me. Please seek a second opnion from a dr who is willing to first explore other areas. i am now being test for cortosol, but no free cortosol, it has to be tested by taking a single corotsol pill at night and then going in for a test at 8am.
Wow! Great article. How do we get an appt. with the author Dr. Lindner? Sign me up! It looks like your doctor is testing all the right stuff. Free ranges instead of total and those antibody tests are going to be your biggest indicator of what is going on. After years of battling these symptoms and many many many doctors and specialists, I am still looking for someone willing to treat my symptoms and not my levels. Hang in there and keep searching. Someone on here I think has a list of fellow members' recommendations on endos, so maybe there is one on there that is close to you.
Not handling stress is my number one symptom when i had severe adrenal insufficiency. What you don't think could possibly in a million years be a stress IS when you dont have enough cortisol to help you handle the situation.
An example of this: asking for something and being told it's not available. Normal reaction - that's fine i'll check elsewhere. Severe adrenal insufficiency reaction - major crying jag in front of everyone. :(
Just because a person is within the so called "normal" range means ABSOLUTELY NOTHING!
The "normal" referred to is a mathematical statistical term, not a medical term. Yes that means that 95% of the population falls within that range. The problem is that they do not remove all of the "hypo" or low thyroid people from the pool they test and simply ASSUME that the bottom 2.5% are the ones who are hypo, and the very top 2.5% are Hyper.
The problem is that a significantly higher percentage of the population is hypo than the bottom 2.5%. Some would even argue it would be near 20% but I don't know if I believe it is that high. I do know from being here that it is FAR about 2.5% of the population.
To give a ludicrous example of how silly this is. Consider that a sample of people from the population are examined for legs. And only the bottom 2.5% of the population who had their left leg missing and the top 2.5% of the population who had their right leg missing were excluded. That would mean that everyone else is "normal" because they fell within the 95% of the population. Yet clearly a person who has a broken leg is not "normal". But they fit within the statistical definition of "normal" so no treatment is necessary according to the Dr who goes solely by the numbers. You are told that you are normal and go home. This is what the current "normal" ranges are doing with regard to Thyroid and God only knows what other conditions.
MANY people who are symptomatic need in order to feel well need to be well up into the range. In fact the target to shoot for is BOTH of the following:
1) Free T4 in the MIDDLE of the "normal" range (50%).
AND-that means in addition to
2) Free T3 in the UPPER 1/3 of the "normal" range (66.7%).
Each person feels well at a little different level. Starting out on a low dose and working up in small dose increases SLOWLY with each change if T4 medication not really any sooner than every 6 weeks with labs. FT4 takes 6 weeks to stabilize in the blood. Go slow and when a person starts to have symptoms disappear then go even slower to get to optimization.
Like I said each person is an individual but many, MANY, MANY people here have found the above target to be WAY more accurate than simply being "within the normal range".
I've recently read an article that states that blindness caused by maccular degeneration is now being suspected may be due to undiagnosed Hypothyroidism or under medicated hypothyroidism.
Also it is interesting to note that prior to all this sophisticated blood testing, the patient was medicated using only symptoms and increased the dosage until the patient felt better. What is interesting is now that all this testing is being done, there are FAR fewer people who get medication at all and also the people that do are on average taking about 1/2 of the dosage of the amount of thyroid that it "used to take" back in the old days.
Coincidental to this is the advent of strange new diseases known as Chronic fatigue syndrome and firbromlygia. Both of which are basically simply "unexplained" symptoms. They are now finding out that with the addition of Thyroid medication these symptoms are relieved. Interesting that the symptoms of both happen to be exactly the same symptoms of low thyroid. But because these people test "within the normal range" they now become "unexplained" because they unwittingly rule out low thyroid as being the cause.
This all suggests to me that the so called "advances" in testing have been incorrectly utilized. Leaving patient to suffer from symptoms and feeling like crap just because a persons labs fall within an arbitrary or ill defined so called "normal" range.
Put simply. If they changed the range to eliminate about 50% of the bottom part of the range, All of this might be avoided, and people would start getting the treatment and dosages they need.
As it is now, the patient is required to be their own advocate and go from Dr. to Dr. until they can find one who listens to them and treats them clinically using blood labs as additional information rather than the be all, end all.
Also the adrenals could be fatigued because they are trying to make up for the lack of Thyroid in the blood. The body is trying to do everything it can to make up for that loss. And the adrenals are not necessarily made to deal with a chronic long term issue and by over working them they "give up".
This suspected the reason why some people feel worse when they first start taking Thyroid medication. The body is not used to having the thryoid and the adrenals etc who were cranked up to make up for the loss, now have to recognize and adjust to the re-introduction of thyroid.
just another reason why starting out slow and making small adjustments over time is the best policy. Although it is AMAZINGLY frustrating when you just want to feel better and want to "cut to the chase".
omg, those who severely disagree with me, do you think its normal for people to take a "pill" everyday for the rest of there lives, do you know that when you are on synthorid it shuts off your thyroid, and your body relies soley on this synthetic thing to function. For those who are on the edge of wether or not to take it and their T3, T4 and antiobodies are perfectly normal and there TSH is under 4.0 , I say seek one additional opnion. Also ask you primary or any doctors that has your blood work from the past, go back to a time when you were feeling good, see what your TSH was then, if it is the same as it now. If your still at same TSH then think seriously whether you want to start synthroid. I dont think anything I have said anything here that is so crazy. Get a second opinion, look at the whole picture. I use to read posts like this and get all sacred and started taking it, there are not enough people like me, who want to inform those of us who are on the cusp of taking synthroid.
"...do you know that when you are on synthorid it shuts off your thyroid, and your body relies soley on this synthetic thing to function"? No, this is not true. If your thyroid is still capable of producing hormone, the synthetic hormones you take will work in combination with your body's own hormones.
"Perfectly normal" has to be defined. Many people with (legitimate) thyroid symptoms have in range labs. For a number of reasons, thyroid lab ranges are severely flawed. Many doctors also practice "reference range" endocrinology...the belief that all of us should feel well anywhere in the ranges. Some people have low thyroid levels naturally (I'm comfortable at relatively low levels), and some have naturally high thyroid levels, and each has to be treated as an individual.
Since TSH is seldom included as part of routine screening tests, very few people have the luxury of comparing current results to previous results when they felt good.
I think if you do much reading on this forum, you will notice that very few of us have a whole lot of respect for the TSH test. I don't know how often I've told people that diagnosing and treating by TSH alone is a recipe for disaster. Tests, in order of importance, are FT3, FT4 and TSH. If TSH isn't supported by FT3 and FT4, then TSH has to be ignored. Since your T3, T4 and antibodies were "perfect", I think very few people here would tell you to start meds based on a TSH under 4.0.
Too many doctors think that FT3 and FT4 barely in the bottom of the range is sufficient and leave their patients with a myriad of hypo symptoms.
While you may have a legitimate complaint that you were put on Synthroid unnecessarily, do realize that the vast majority of people have a very hard time getting treated for thyroid problems. Many doctors order the wrong tests, and many won't increase meds until all symptoms are relieved.
Whether or not you were put on meds inappropriately remains to be seen. You have yet to get an alternative diagnosis.
I agree with everything goolarra and flying fool have said, plus I'd like to add:
did it occur to either you or the doctor that your numbers were perfect, BECAUSE you were on the synthroid? That's what synthroid does; it brings your levels into range and if given enough time, it should alleviate your symptoms.
I was on thyroid replacement medication for over a year, before most of my symptoms were alleviated.
I have never heard of a test for cortisol where you take one cortisol pill at night and then test your cortisol at 8 am. cortisol is short acting--so if you take it the night before it isn't going to tell you a whole lot about what your body's cortisol activity is.
i have a condition called central hypothyroidism, which is a rare form of hypothyroidism---my pituitary is not functioning properly, and TSH tests will never be accurate for me. When treated properly, my TSH levels should be VERY low.
Taking synthroid will only shut down your thyroid completely if you are on suppression therapy---my husband and I have both been on suppression therapy because we both had thyroid nodules---it was supposed to shrink them down. I went off the medication after 10 years at one doctor's request to see what my thyroid would do on it's own---after about a year, we discovered my endocrine problems--and they were much more extensive than they had been in the past.
My hubby was on suppression much longer than me, plus, he only has half of a thyroid--they had to remove the other half because his nodule was so large and they couldn't rule out cancer with various tests. He tried to go off of his medication a couple of years ago---but his face started swelling up---guess his 1/2 thyroid didn't want to work after all.
The problem that both of us had, was that the doc who put us on suppression therapy moved, and somehow our other docs got confused and treated us both as hypothyroid instead---which requires a different amount of medication.
I take NP thyroid, which is natural desssicated thyroid and has T4,T3,T2,T1 and calcitonin. Two symptoms that you will never get rid of with synthetic thyroid medication are dry skin and water retention--however, many people seem to do fine on synthetics---so it is really a matter of what works for each individual and what your particular symptoms are.
I have also read that if you are on a T4 only med, that you will be hypothyroid to some extent because our bodies are not meant to be on T4 only---we have to be able to convert it to T3 which is what our bodies use.
I read parts of that doctor's articles--i have secondary adrenal insufficiency--and when I was tested with an ACTH stimulation test--both my ACTH and my cortisol levels were extremely low--unlike the normal ACTH levels he was saying you would have with secondary adrenal insufficiency.
I question a little some of the things he says--but if it works for you--let us know!!!
"Two symptoms that you will never get rid of with synthetic thyroid medication are dry skin and water retention..."
After starting T4 therapy, I lost 25 lbs doing absolutely nothing differently than I had been doing. It came off pretty fast, so it had to be almost all water retention (my feet, ankles and legs had been little blimps while hypo). I've had dry skin all my life, even when living in very humid climates...it's no worse now than it ever was, and I live in the desert now.
"I have also read that if you are on a T4 only med, that you will be hypothyroid to some extent because our bodies are not meant to be on T4 only---we have to be able to convert it to T3 which is what our bodies use."
It's true that our bodies can only use T3, but some of us actually do convert T4 to T3 just fine. Conversion is not a thyroid process. It happens in sites throughout the body (mostly in the liver) and is a separate metabolic process. It does not necessarily follow that because we are hypo, we can't convert. Conversion has almost nothing to do with the thyroid gland.
It's also true that our thyroids, when healthy, produce both T3 and T4. However, the ratio of T4 to T3 that is produced by the human thyroid is about 20 to 1. About 95% of ourT3 comes from conversion. Desiccated contains T4 to T3 in a ratio of about 4.5 to 1. So, although our bodies are not meant to be on T4 only, they are also not meant to have that much T3 (4.5 times what our thyroids produce) from a source other than conversion.
It's actually a bit of a complicated, but interesting, question which is more "natural".
"...so it is really a matter of what works for each individual and what your particular symptoms are." Absolutely. Some people do well on T4, some on synthetic T3/T4 combos, some on desiccated. All have their drawbacks, and all have their positives. Different people have gotten totally well on each.
Holy cow - this really started some interesting info rolling.
I have read that seen a doctor involved in Environmental Medicine could help. One that came up happens to be an Otolaryngology doctor (aka ENT). After further reading, ENT's can specialize in thyroids. Thoughts on this? Any experience?
My neighbor had a TT a number of years ago for thyroid cancer. After the TT, her ENT continued to manage her meds. When I was looking for a new thyroid doctor, I contacted her because my neighbor had been so happy with her. As it turned out, she told me I should see an endo. She said that when she first started practicing here (rural area), there were no endos, so the ENTs treated thyroid. However, since we now have several endos, she really felt that I'd be better off with one of them. OMG, a doctor who recognizes her limitations!
By and large, except in very remote areas, I believe ENTs do the surgery on thyroids then turn the patient over to an endo for continuing care. However, ANY doctor can be a thyroid specialist if he has the interest in continuing his education on the subject.
I think you posted an interesting question...yes, some good info flying around!
Interesting thread indeed...I am still learning so no great info from me, but for future researching purposes, I have to ask: did you by chance get your FT3 and FT4 results flipped around? Just noticed your numbers and ranges.
You're right. FT3 and FT4 are obviously flipped. Autocorrect! The old mind just flipped them right back!
I knew that was how you veterans saw it, lol- I thought for the sake of future info seekers, I'd mention it :)
Hell yeah! Beautiful post.
I'm here for a new work up of blood work now. Including TSH, FT3 and FT4 as well as Hashi tests, low cortisol and adrenal.
Good catch on noticing my flip in numbers!!! I've looked at numbers so many times they all blend together now!
Has anyone had experience with calling a new doctor and they saying they won't take a patient without an "on paper diagnosis" from their PCP??
Just left my first Endo appt. Here are the old and new blood test results:
TSH 0.68 (.49-5.6)
FT4 1.0 (.80-1.80)
FT3 2.7 (2.3-4.2)
TSH 2.09 (0.40-4.50)
FT4 1.1 (0.80-1.8)
FT3 3.1 (2.3-4.2)
Iron 67 (40-175)
Ferritin 17 (10-154)
B12 - 452 (200-1100)
He says there is nothing wrong with my thyroid. He wouldn't treat hypo until the TSH hit 450.
"Most laboratories use 4 mIU/L as the upper limit of normal for TSH. However, new research has found that if a TSH is above 2mIU/L, the thyroid gland is probably in the early stages of disease." - Your Thyroid Problems Solved [book] - Dr Sandra Cabot
"Dr. Friedman recommends iron treatment for everyone with a ferritin less than 60 mg/dL. The goal of treatment is to raise ferritin levels to a value between 70 and 90 mg/dL and is usually achieved with oral iron treatment. Raising ferritin levels to this range may be needed for patients with hypothyroidism to have an optimal response to thyroid hormone treatment." - Good Hormone Health - Iron Deficiency and Fatigue
"At least six neurological and psychiatric papers, in top medical journals, have shown that the normal range should be regarded as at least 500-1,300 pg/ml (rather than 200-1,100), since the cerebrospinal fluid level can be deficient when the serum level drops below 500, and neuropsychiatric symptoms often occur at serum levels between 200 and 500 pg/ml (VanTiggelen et al, Lindenbaum et al, Mitsuyama/Kogoh, Nijst et al, Ikeda et al, Regland)." - John Dommisse MD - Vitamin B12 deficiency: Symptoms, Signs & Optimal Treatment