I have been on synthroid for about 10 years and had a Total Thyroidectomy and Ablation last year due to a cancerous nodule. Prior to the surgery, I was taking 200 mcg of Synthroid with in-range TSH values. My endo started me on 225 mcg right after the ablation and then I changed endos due to a change in insurance. My TSH stayed at 0.01 for about 8 months and the most recent test was 0.09. My endo keeps giving me lower dosages of Synthroid to try to up my TSH closer to the normal range. I have been taking 150 mcg and now she wants me to take 125 mcg. I feel like I'm hypothyroid, not Hyper. I'm not a small person. I hope to talk to my endo about this, but was wondering if this type of thing has happened to anyone else. I want more synthroid!
I am having exactly the same problem. My RAI was in November and prior to that I was on 200mcg of Synthroid. After RAI I stayed on the same dose then ended up in the ER with palpitations and high blood pressure. My TSH was 0.07 at that time. I've was dropped to 175mcg and my TSH was 0.06. Now I'm down to 150mcg.
I am also having the exact same problem. I had a total thyroidectomy in jan. and my TSH has been low since. My endo lowered my levothyroxine dose and my TSH actually decreased. And I also seem to be more hypo- than hyperthyroid. Did you get any answers from your endo or from anyone?
I am in the same boat and so is my brother. My question is if one does not have a thyroid gland what is there to stimulate? Therefore, why do you even need to look at the TSH in that individual. I would think when there is no TSH it means you have enough from another source such as your meds. I would think ideally we all should have no TSH and then we would feel better because we were getting the proper amount.
Since the arrival of the TSH test in 1997 there are more complaints about people feeling bad, weighing more, fatique, etc. Someone must be making a ton of money of the TSH test or doctors must be getting some sort of kick backs. Just thinking outloud.
I also have the same problem guys!!!
Before my thyroidectomy my TSH levels were normal, but after it they are quite low, which I thought is expectable since there is no thyroid gland to stimulate! (Just like "bebehoward" mentioned above!)
Thankfully I feel fine for the moment and I have no weight problems whatsoever, but I'm afraid my doctor will reduce my T4 dosage in order to increase the TSH levels, and I can't imagine what the side effects will be!
I've read some terrible stories about that of people who have had a hard time with their weight, mood etc while trying to regulate the dosage.
Does anybody else has some more info on why could the TSH levels be low after a thyroidectomy???
It is not at all unusual for the TSH to be suppressed when taking thyroid medication. This does not mean that you become hyper. You are hyper only if you have hyper symptoms as a result of excessive free T3 and free T4 thyroid hormone levels. In my oft stated opinion the best way to treat a thyroid patient is to test and adjust levels of free T3 and free T4 (not to be confused with total T3 and total T4), with whatever meds are required to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not TSH level. Many of our members report that symptom relief for them required that FT3 was adjusted into the upper part of its range and FT4 adjusted to at least midpoint of its range.
So there are a couple of things you need to discuss with your doctor. First is that you want to be tested for FT3 and FT4, in addition to TSH. If the doctor resists, then you should insist on it because these are the hormones that affect metabolism and many other body functions. TSH does not affect symptoms directly. TSH is only an indirect measure of the actual thyroid hormones. Studies have shown that FT3 correlates best with hypo symptoms, while FT4 and TSH did not correlate. If you will get that testing done, and post results and reference ranges, then members will be glad to help interpret and advise further.
The second thing you need to discuss with the doctor is to find out if he is going to be willing to treat you clinically (for symptoms), by testing and adjusting FT3 and fT4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. If not, then you will need to find a good thyroid doctor that will do so.
To better prepare yourself for the discussion with your doctor, I suggest reading this article written by a doctor, who deals with thyroid issues a lot.
I had thyroid removed in 1997. My weight freaked out the next few months after surgery. It increased. I was on 200, then 175, 150 and just this week 100mg.
The thyroid levels are exactally back-ak-wards of what other meds do. Decreasing Synthroid will bring up your numbers. The thyroid is part of a system. Thyroid levels trigger the other parts of the system to do their job.
It is backwards in understanding as to every other medicine dosages.
I had my thyroid removed four years ago due to cancer. For the most part, I have been ok on .175 mcg of Levothyroxine. 4 months ago, my body was going nuts....symptoms all pointed to being hyperthyroid. Lowered my dose to .150 mcg. My tsh was at .027....My question is why after 3.5 years did this sudden change occur?
Might be able to better understand if we had lab test results from a period when you were feeling well, to compare to when you were not doing so well. Since Free T3 is the thyroid hormone that largely regulates metabolism and many other body functions, that is the test that is most important to track. Also, when taking T4 meds, the T4 has to be converted to T3 in the body. Conversion is affected by a number of variables. Granted that such a swing in how you feel is infrequent, in cases like yours, I could envision it being related to changes in how you were converting the T4 to T3. Also,did you make any change in how you take your meds daily? Any change in supplements you might have been taking?
I had a total thyroidectomy in 1995 when I was 15 due to a papillary carcinoma..been on brand name synthroid 300mcg for 10+ years. Just a few months ago I started with weight gain,
Confusion, swelling, palpitations, irritability, sporatic cramps, increased appetite, depression, and high blood pressure. Had my tsh tests in July n it was 13...Md didn't do anything....and tsh rechecked in sept and now its at a 25. Don't have appt with endo till Jan. So my question is if my levels keep rising and me feeling horrible...should I just go to er?
If you go to ER they might be able to give you something for short term relief, but I doubt they are going to know what would be best for you. TSH does not cause any symptoms directly, so a rising TSH is not the cause for your discomfort, but it may be an indication of another issue.
My suggestion would be to go to your MD right away and request tests for the biologically active thyroid hormones, Free T3 and Free T4 (not the same as Total T3 and T4), along with TSH. That will give a much clearer picture of your thyroid status. I would also suggest testing for Reverse T3, just to make sure of that. Since hypo patients are frequently too low in the ranges for Vitamin D, B12, and ferritin, I would also request those, along with a full iron test panel (TIBC, serum iron, and % saturation) plus magnesium and calcium.
When test results are available, please get a copy of the lab report and post results and their reference ranges shown on the lab report and members will be glad to help interpret and advise further.
Hi, I had a total thyroidectomy 5yrs ago, and have been happily recovered since. Recently I moved and changed GP, who did bloods and says that because my tsh is low, 0.05, it's always been this or 0.03 since the surgery. He says my levothyroxine dose must be reduced, so I reduced from my usual 150mcg daily to 125 then 3m later I had bloods done again. The tsh is still the same - this came as no shock to me, but now I'm tired all day, struggling to concentrate at work. Feeling low, and have sore achey joints most of the time. My GP wants me to reduce again.
Unfortunately most doctors don't understand how to diagnose and treat hypothyroidism. When already taking thyroid meds, TSH is frequently suppressed. That does not mean hyperthyroidism, unless you do have hyper symptoms, due to excessive levels of Free T3 and Free T4, which I'm sure is not the case, since you still have hypo symptoms. If you haven't even been tested for Free T3 and Free T4 (not the same as Total T3 and T4), then you should insist on those tests.
A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with after initial tests and evaluation. The letter is then sent to the participating doctor of the patient to help guide treatment. In the letter, please note the statement, "the ultimate
criterion for dose adjustment must always be the clinical response of the patient."
Since hypo patients are frequently too low in the ranges for Vitamin D. B12 and ferritin, you should also make sure to be tested for those as well.
As I finished this post I noticed you were in the UK. That presents additional problems for getting properly diagnosed and treated. The NHS strongly advocates TSH as the only test necessary to diagnose and treat hypothyroidism. That strictly does not work for most people. In order to get what you need, consider the words of a fellow UK member in similar circumstances. This describes how she was finally able to get treatment.
"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge. You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid. If you fight for what you want, you will eventually find someone that is happy to go along with your wishes. But we all have to take charge of our own health, right?"
If even that approach does not work, then you will have to consider going private. If that happens, I have names of some good thyroid doctors in the UK, mostly around London.
Doctors like to tell us that TSH accurately reflects a patient's thyroid status,; however, TSH cannot be shown to correlate well with either of the biologically active thyroid hormones, Free T3 or Free T4, much less correlate well with symptoms, which should be the main concern, instead of test results. Also, doctors like to keep TSH low after surgery for thyca.
TSH is frequently suppressed when taking thyroid medication. A suppressed TSH doesn't automatically mean you have become hyperthyroid, You are hyper only if having hyper symptoms. TSH causes no symptoms. So, the main value of TSH testing is during initial diagnosis, to determine if hypo symptoms are due to primary hypothyroidism (Hashimoto's Thyroiditis), or central hypothyroidism (hypothalamus/pituitary related).
So, are you having symptoms of any kind? Also, iI tested for Free T3 and Free T4, please post results and their reference ranges.
same thing is now happening to me....saw endo the other day and he said TSH is too low. i had thyroid removed 10 years ago and iodine rad. we have keep this low on purpose. now all of a sudden doc wants to lower synthroid to 112. i was on 150 for a long time...then to 125....then 3 months ago to 137 now he wants to bypass 125 and go to 112. I am afraid of weight gain & loss of hair. but maybe the excessive sweating will stop. after surgery i gained 75 in matter of months.....i am still battling to get it off....i hope i can continue to lose weight and not gain....
Please post your thyroid related test results and reference ranges shown on the lab report, so that we can better assess your status. And you are right about keeping the TSH low for patients who have had thyca.
So, don't let the doctor lower your thyroid meds based only on TSH level. You can use the info from this prior thread that I posted to help another member fight with her doctor that was trying to reduce her med just because of low TSH.
You can use these links to try and get your doctor to change, or lacking that, you will need to find a good thyroid doctor. A good thyroid doctor will treat a hypo patient clinically by testing and adjusting free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not just test results, and especially not TSH levels.
Again, knowledgeable physicians are finding that TSH suppression below the lab reference range is required for adequate treatment of the low thyroid condition. In this Kuma Hospital study, they found that TSH-suppressive doses of Synthroid were needed in post thyroidectomy patients to achieve the same normal Serum T3 levels which were present on pre-op labs.
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