I know it's different for everyone, but what is the average dose of synthroid for people who have has a thyroidectomy?
My doctor started me off on .175 and then I had an anxiety attack the other day (see journal) today he said my numbers were good, but reduced me to .137 and gave me some .150 samples as well. He said to start on the .137 and if I felt sluggish to take the .150's . How will I know the difference between general fatigue and not enough synthroid. Would the .175 have caused my anxiety attack?
I had a TT last August and was put on Levoxyl .175 at the end of September last year. They're keeping me slightly hyper for cancer suppression, but am not having any issues due to it.
Unfortunately, it takes some people more time to find their correct dose - one where the numbers are where they want them, and more importantly - where you FEEL GOOD. Hopefully you find that spot real soon!
I had a TT in February, and take 175 mg of Synthroid. I finally am starting to feel less tired and closer to my old self. I'll stay on the higher dose, too, to keep cancer at bay and then undergo RAI again next March. In the inbetween times I had panic attacks, several weeks where I needed only 2 - 3 hours of sleep, feelings I was going crazy...It was an adjustment, and not easy to get to this point, but I did....and you will too.
I had a partial in 1/07 and the other side decided to stop working ... so I am on Synthroid 75mcgs with TSH of 1.8 .. and feel great .. .although it took a good year to find the right dose and then a good sum more to tweek it along!
I am so happy to have found all of you and this site. It has helped with my sanity. I had TT 3 weeks ago and am on 100mg of Levothyroxine. The first few weeks I felt real good. After a a day or to back to work I was barely getting through the day. I feel like something is draining the life out of me. I also have alot of aches and pains that I can't explain. I just know that I am not feeling right and am hating every minute of it! I have yet to see my Endo doc or the surgeon for post op. But with all of your help I can go in with more knowledge and more patience. I am also doing alot of research, which I should have done prior to TT. Live and learn. Good luck to all of you. I hope it does get better!!
I had a TT 3 years ago and my dose of synthroid started at 150. Then I alternated 150 and 137. Then it went to 137. Then I alternated 137 and 125. Then only 125. Now I'm back to alternating 125 an 137. Confused yet? Hahaha! It's all a guessing game I think. Just a matter of where you feel well and where the cancer can be surpressed. I'm walking that line now. Sort of.
Hi, I had a TT in June of 2010, due to Papillari Cancer. I had an ablation. (RAI) four days ago, and took my first dose of synthroid this morning after being on cymotel for 4 weeks following my surgery. I had to stop taking it for two weeks in order to receive my RAI treatment, and that's when I started to feel awfull. Now Im wondering how long is it going to take for me to get my energy and muscle weakness back. I have to go back to work in three days and my children start school Monday. Im really worried about how Im going to cope with everything. Its been a very rough two months. Can any one help me? please.....
Don't panic...I am only a few steps ahead of you...I had my TT July 9th 2010 and at almost 7 weeks out, I am still trying to get my body on track. The Cytomel is a shorter acting hormone than Synthroid and that is probably why they put you on it before RAI. Synthroid takes 3-4 weeks to bring those levels back, but it is a process, a slow one...of finding that right dose. I was just reading through the other posts and how everyone is dealing with dosage issues. I had to take baby steps because Synthroid causes me panic and elevated heart rate...so from 75 I just graduated to 100 and after a few days am pulpatating and feel the yukkies....so it is now a process of how to find the right balance and the right dose so your body feels ok and your levels are where they need to be.
I was also one of the lucky ones who lost my voice totally and just now straining to get it back...it is a tough process...so you have to be patient with your body. It woke up one day and there was no thyroid gland anymore..so it is trying to compensate and adjust.
The surgery as well is not easy to get over, so three weeks out is still very fresh....you were dropped to nothing so your body would be receptive to the RAI..I couldn't do it because I became so weak that I couldn't even function, so my endo took a more conservative approach and with the agreement of my surgeon, they put off indefinately the RAI...the amount of cancer (Papillary) was so small, they weighed out putting me through that process unnecessarily...at least for now..
You are completely normal in feeling all of what you are...I know life doesn't stop to accomodate this kind of deal....I had to move my daughter to college 4 weeks post and thought I was going to drop dead! :)....I still try to go shopping and swear I am lugging a steel cage behind me when I walk a half a block.,.....don't push yourself with work...can you take any more time off? Work from home? Half days? At least until you can get enough Synthroid going to get your energy back up.... I have talked to so many who are steps ahead of me..and I like you, was and even still am, thinking will I ever feel human again?! But those who are ahead say YES and you will feel even better....!!! Just be patient with your healing. It takes each body a different amount of time...rest when you can and all you can....get help and let others take care of themselves as much as they can...take care of you first...
I appreciated reading your commentary since your TT. I am 3½ weekd post TT. Feeling absolutely exhausted...no energy. I am on 125 mcg synthroid and thinking it may need to be increased. This is very informative because I really thought I was losing my mind. My surgeon said I should have been back to work 2-weeks post-op. I had to go to my family doctor to get more time off. I am having numbness, tinglign and weakness on my entire left side. Now they're ordering an MRI to rule out stroke. Anyone else had this happen?
I go for my 4-week post-op check this week.
Hi, I am glad it helped...I have found such great support myself, as I am not 12 weeks out and just exhausted and still having trouble regaining my voice (I was the lucky one who lost it after surgery) and just dealing with the swallowing/pain issues...as for your tingling and weakness..you are most certainly sounding "hypothyroid"...it takes at least 4 weeks for the dose to take effect. What my endo has told me is that the body normally produces anywhere from 125-175..somewhere in that range, a healthy thyroid. He has told me that to maintain normal function that I would need between 125 and 150. I haven't heard of too many on higher dosages than that, but you have to trust your dr on that one. As for the tingling/numbness...be SURE you are taking calcium. I have been so bad about it and it has slowly gotten worse...I had great advice from Suzanne in another post area to chew tums and get as much calcium as you can for those muscles. I get frustrated too as the drs will tell you that life will be grand a few weeks after and you can return to normal...not so true...and there are hundreds of posts here on that subject :)....We are all in the same boat...trying to balance our bodies out...to adjust to meds and fight the fatigue and discomfort that comes from the body waking up and realizing the engine is missing :)....Hang in there and keep reading and posting...we all help each other along.
Hi Sophia. Thanks for the support.
Went to my family dr. today only to be told that he thinks I'm experiencing anxiety and depression. Sent me away with Rx for antidepressants. Guess he hasn't had his thyroid removed. hmmm
Had my 4-week check last week with surgeon. Healing well and thyroid and calcium levels are great. Although there were cancers found, it is felt that they go it all. The nodules have been sent to another specialist to determine whether RAI will be needed. Guess it's just a matter of getting my energy back.
As for the tingling, am being sent for an MRI to rule anything serious out.
Hoping they find nothing and yet frustrated not to be feeling better. Blood pressure is up as well. I guess it gets frustrating when it's out of character for me to be down for the count for so long. Letting my employer and coworkers down doesn' t help either.
I had my TT on May 10, 2010. Papillary cancer. Although I feel fully recovered from surgery, I'm still adjusting to life without a thyroid and a life on Synthroid. It took until around the middle of August for me to feel fully recovered from the surgery. With all pain and/or numbness of the incision area completely gone. Also, my para's were stunned and my calcium dropped so low I went into Tetany (look it up - such fun) four days after surgery. Was in the hospital for an additional 10 days because of it. Be careful of any signs of tingling. That could mean low calcium and damaged para thyroids.
Right now I'm having a hard time keeping myself from jumping off a bridge because of the weight I'm gaining. About 1.5 to 2 lbs per month. I started noticing slight weight gain right before being diagnosed with the cancer and the inability to lose it. At the time of the operation I weighed 172 lbs. I normally weigh 150 ( I'm 5'8"). I went from 150 to 172 before the surgery (in 6 months time) and since the surgery I'm now 182. I take a 2 mile power walk every day (and I mean powerwalk - not a stroll) and for the past three weeks I've been limiting my calorie intake to no more than 1500 per day, yet as of this morning I put on 2 more lbs. I go to an Endocrinologist at Jefferson University Hospital in Philadelphia. When I mention the weight gain his response is simply "most people on this much thyroid hormone find that they can't keep weight on, no matter how much they eat". Yea, well, good for them! How does that help me?
I was taking 150 of synthroid for the first 6 weeks. Hot flashes were unbearable. Body aches that made me feel as if my bones were made of glass and would break at the slightest pressure. Then, Dr. lowered me to 150 for only 6 days a week (that equals around 128 per day). Slight improvement in symptoms, but still miserable. Now, I'm at the beginning of a new 6 week cycle and I'm on 137 for 6 days a week (which equals around 117 per day). I'm hoping this will make me feel better but I'm depressed to the point of tears about the weight. I've never been this heavy in my life. And all I can see is myself in three years being 300 lbs. I'll kill myself for sure. Oh, yea, and I haven't had a period since July.
Had my TT two years ago and still haven't gotten adjusted on Synthroid. Just this week my new prescription is for 225mcq. I have a atril fib condition to start with and take daily coumadin....Should I check in with my primary doc and find out if this dose is going to KILL me? I have 5 "specialists".
If 225 of Synthroid is not doing it for you, it may be because your body is not converting the T4 to T3 adequately. Metabolism and many other body functions are largely regulated by the biologically active thyroid hormone free T3. Studies have also shown that FT3 correlated best with hypo symptoms, while FT4 and TSH did not correlate.
I had a similar experience where, as a result of Hashimoto's I was taking between 200 and 225 mcg of Synthroid, with a TSH of about .05, and still had lingering hypo symptoms. When I found out on this Forum about the great importance of FT3, and found mine to be low, even with high FT4, I got my meds changed to add in a source of T3. Now I am taking 2 1/2 grains of Armour thyroid and feel best ever.
A good thyroid doctor will test and adjust FT3 and FT4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important. So I suggest that if not done previously, you should insist on FT3 and FT4 tests, and don't take no for an answer. I expect that you will find that FT3 is low in the range, which is consistent with having hypo symptoms. If so, then you will need to find out if your doctor is a good thyroid doctor, that is willing to treat you clinically, as I described.
I have been on Levothyroxine for about 10 years now. I have ups and downs,the dosage has to be changed every few months, but I do what I have to and keep taking it, I have to because I had total thyroidextomy 10 years back and was told then and many times over the years, take the pill, do not miss it, take it at the same time every day, if I forget take it as soon as I remember, very important.
Well now my Doctor is taking me completely off of it, for one week, nothing, none, for some tests, and I am scared, what is going to happen? has anyone else had to do this? please let me know if so, if nothing else it might help me to calm down and not worry so much.
Kathy Very Scared
I don't exactly understand why the doctor is taking this step. What test does he plan on running? One week will only reduce your blood levels of T4 about 50%, which will cause you to start having some degree of hypo symptoms. I expect this to be unpleasant, but not unbearable for you.
Why does your doctor keep changing your med dosage? could it be that it is based only on your TSH level? If so, that doesn't work. TSH is a pituitary hormone that is affected by so many variables that at best it is an indicator, to be considered along with more important indicators such as symptoms, and also levels of the biologically active thyroid hormones, Free T3 and Free T4 (not the same as Total T3 and T4).
If you would please post your thyroid related test results and their reference ranges shown on the lab report, members can comment on the adequacy of your testing and treatment.
All I know is he said he wanted to do some testing, he said that the best results would come without any meds in my system, he started by moving me down to 100 mcg for one week, then 75, 50, 25, i am this week on the 5's and next week I have none, the after that week I go in and have blood work, checking calcium, parathyroid hormone, intact, phosphorous, thyroglobulin, tsh, vitamind, 25-hydroxy, for papillary thyroid cancer. then he said I could go back on my regular dose. I have always just did what my doctors have told me to do, this is a new doctor that I am seeing, so I am really nervous about it.
Best I know every few months i have lab work done and I know they always check tsh, the t3 and t4 is only checked like once a year or so, they keep my levels at 0.01, every little bit my levels change, and I can tell when it does, so every time it is checked and the levels are up they change my dose and when the levels go to low they change it again, I am constantly feeling like I am going crazy, I stay confused in my head, I forget things all the time, I feel worthless, I feel useless, you would think after 10 years of this, someone could figure out what I need to be half way normal again.
Sounds like they are changing your meds based only on TSH, which does not work, for the reasons I gave you above. Every time you go in you should make sure they test you for Free T3 and Free T4, not Total T3 and Total T4. If the doctor resists testing for Free T3 and Free T4, then you should insist on it and don't take no for an answer.
Even when taking the maximum dosage you have been on, did you still have hypo symptoms? If you are not sure, take a look at this listing of typical hypo symptoms and tell us which ones you have.
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.
I think you can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he consults with from a distance. The letter is sent to the PCP of the patient to help guide treatment.
I think that after reading the above letter, you will see that you have not been getting the right kind of treatment. So when you go back to see your doctor I suggest that you should ask him if he is going to be willing to treat you clinically as I described above. Also ask if he is willing to prescribe T3 type meds when necessary. If either answer is no, then you need to find a good thyroid doctor that will do both.
I now have some of my test results in,
My free t3 is 1.9 pg/ml normal range 2.4-6.8
My t3 total is 0.5 ng/ml normal range 0.8-1.6
My t4 total is 3.2 mcg/dl normal range 4.5-13.9
I will have others on the 7th of February
I'd guess that you have been weaning yourself from the med for about 6 weeks, correct? Assuming that you just recently had these tests done, I'd say that they reflect having only a little of the med left in your system. Because of that your Free T3 and Free T4 are way below the levels required for symptom relief. Many members report that symptom relief for them required that Free T3 was adjusted into the upper third of its range and Free T4 adjusted to around the midpoint of its range.
What starting dosage has your doctor prescribed for you to increase those levels to relieve symptoms? Also, how quickly are you supposed to ramp up the dosage?
What test did the doctor run, that required the reduction of meds? Has the doctor given you any info from that test?
I had my thyroidectomy June 2009 and I have been struggling to find the right snythroid levels since that time. My Endo continues to change my meds every 6 weeks. Now due to low t3 and t4 levels he has changed me again for a 2 week period and then said redo your blood work and call me. Currently I am taking 125 Monday - Friday and 270 for Saturday and Sunday. Does anyone else experience these medication changes so frequently? I have told him I am exhausted, tired when I wake up and yawing by 2 pm and wanting to climb under my desk and sleep. I WAS enjoying kayaking, yard work, exercising etc but for the last 6 months my energy levels have hit rock bottom.
My eyes are hurting all the time and I can’t focus as well as I use to. I wear my glasses and it does not seem to help. I am now having headaches again (like before the surgery) and I am easily frustrated and short tempered. Does anyone out there have any advice? He told me well you are pre-menopausal and this is part of the life cycle. REALLY! Should I look for a 2nd opinion? I am currently using a Navy doc and he NEVER sees me face to face only does consults over the phone with me and has me do blood work and call for the results. Really feeling like something is wrong and can’t seem to have him feel my sense of fear. Thoughts????
"I am currently using a Navy doc and he NEVER sees me face to face only does consults over the phone with me and has me do blood work and call for the results."
We've seen others who deal with military doctors, have similar issues. It seems military only tests TSH and they adjust medications based on that, which would explain your constant medication changes, because TSH fluctuates greatly, even intraday.
You may have to request a different doctor, or if possible see a civilian doctor.
I had a TT on June 25, 2012... I've spent most of my summer sleeping and still not feeling quite normal. I'm on .225 mcg of levothyroxine and my levels are still low. I have lost 26 pounds since my surgery (still have a ways to go, gained about 60 pounds over the past 6-7 years.)
My main concern is that I'll again become complacent and "use" to feeling tired and foggy. I can't fall back into that again. I wish you all well and remember... don't give up!
Hi I am sorry your going through so much.I been going through this since i was 10 with medication changes or dosage changes i should say. I been fighting thryroid disease for a long time. It turned into hashimoto's disease, I finally had to have my whole thryroid out. They did find one cancer cell they removed everything thank god. They started me off on 175 of levoxyl and it didn't work, I became hyperthyroidism rather than HYPO that i am. So they switched me to synthroid the name brand. I been on it for 2 weeks now. 2 weeks ago I didn't know what was wrong with me. I had aches and pains, and tired to the point I couldnt' drive it took everything to get out of bed. Now the only symptoms i am having is a little tiredness not so much, but blurred vision, and major headaches so your not alone, I am going to a headache doctor soon, and a new thryroid doctor to see what happens. keep me informed good luck. sincerely, angie
i had my thyroid removed 5 days ago because of a large mass doctor said it didnt look like cancer ,I did not know i would feel so bad he said i could go back to work in a week all i want to do is sleep and i feel sick to my tummy and and keep coughing and it hurts so bad!
I had a partial thyroid removal done 4 years ago. I had a benign nodule the size of a baseball. Up until 3 months ago my TSH levels were normal. I went in for a routine screen and my TSH jumped to 4.5. I was put on 25MCG of levothyroxine. Last week, my TSH was tested to be high again and I am now on a dose of 50MCG. My doctor told me that I have Hashimotos disease which probably means that I will need increasingly higher dosages as time progresses.
Unfortunately, TSH is not the only parameter that needs to be tested. You need, also, to have free T3 and Free T4 tested, to see what your actual thyroid hormone levels are. Your medication should be adjusted, based on actual hormone levels, rather than TSH, which is a pituitary hormone and can fluctuate greatly, even intraday.
Wished I had seen this post in 2010. Guys if you have tingling and weakness even on one side of the body, make sure the docs are checking your calcium levels. It could be low calcium since your parathyroids may have been inadvertently removed or irritated during surgery. Took years to get things smoothed out for me. Been on 425 MCG (0.425mg - yes you read correctly), 3000mg calcium daily, 50,000 units Vitamin D 3 days a week to get levels where they should be and make sure I am suppressed for papillary CA.
I'm in trouble been on thyroid since 70's removed for cancer last weeks felt like heart attack aches headaches eyes weird went to hospital they checked for heart attack said blood pressure 200/ put me on blood pressure med istl feel terrible really bad said level was a little high I fell its more than a little high can a test be wrong
hi, I know its a little late to respond to your comment. I had a total thyroidectomy in 1993 because of thyroid cancer and for so many years I was ok taking synthroid .1mg. When I got pregnant 4 years ago thats when the nightmare started, I was changed back and forth from .75 to .1 dand then when my baby was born I started to take .125 ..then 2 months ago I started to feel the stmptoms of heart palpitations. I started to feel anxiety and sometimes panic attacks, very tired that I had to sit down most of the day so I was sent to the ER by this doctor who did not know anything of my past medical history. he did an ekg on me and told me I was probably having a heart attack...so at the er they did all this special tests to see if it was my heart and they said it was ok...so I went to my endocrinologist the next day and did the blood work and he said I was feeling like this because my pill dosage was a little high so he changed it back to .100, I felt better for a month or so and again last friday I started to feel the same symptoms. So today I had blood work again and a thyroid ultrasound to make sure cancer has not returned... I feel so depressed thinking I may never get my normal life back...This thyroid thing brought me so many complications specially infertility issues and miscarriages and ectopic pregnancies, so I can say what other people say that after the surgery I did not have problems with symptoms but it did messed up other health issues in my life. so im waiting on results and really hope it was only the pill and needs to be changed to another dosage...otherwise they will send me to a cardiologist =(
Please post your thyroid related test results and reference ranges so that members can assess the adequacy of your testing and treatment. Also, have you been tested for Vitamin D, B12, ferritin, and a full iron test panel? If so, please post those results and their reference ranges as well.
no I dont think they have performed those tests on me, but as soon as I receive my results I will post them here so we can all compare...I will ask my doctor about vitamin D, B12, ferritin and iron tests...thank you for advising this
When you go back for tests, I highly recommend that you insist on Free T3 and Free T4, in addition to the TSH they always want to test. Note that these are not the same as Total T3 and T4. Free T3 is the most important because it largely regulates metabolism and many other body functions. Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.
yes....I just checked on some of my previous results and they have checked the free t4 too...these were my results
T4,Free(Direct) 1.67 ng/dL normal ranges- 0.82 − 1.77 01
TSH 0.084 Low uIU/mL normal ranges- 0.450 − 4.500 01
Thyroxine (T4) 13.6 High ug/dL normal ranges- 4.5 − 12.0 01
these were my levels when I was feeling lots of palpitations and was taken to the ER ..the doctors thinking it was a heart attack
as for the free t3 im sure they did that test yesterday too and as soon as I get resultsI will post them here...thank you so much for your recommendations...you 've made me dig through my previuos lab results to find out if they are checking what is needed to correct my dosage...I appreciate it a lot! =)
After having a TT, and taking 125 mcg of T4 med, I am somewhat surprised that your T4 levels are as high in the range. That is not such a huge dose as to account for your experiences. Which makes me wonder even more about your Free T3 levels and also your ferritin/iron levels. Low ferritin/low iron can affect in several ways, including adversely affecting the conversion of T4 to T3. Also, from what I have read, ""Low ferritin can cause negative reaction like palpitations, nervousness, and anxiety in someone starting thyroid hormone replacement. Someone described it like being shot out of a cannon. It is therefore imperative that ferritin not be at the bottom of the range before starting thyroid hormone medication."
I think this can also apply if your ferritin/iron levels get too low while already taking thyroid meds.
Following are some of the symptoms of low ferritin.
Loss of energy
Loss of libido
Shortness of breath
So just be aware that it is recommended that ferritin should be about 70-80 for women. All the above is why I recommended that you should be tested for Vitamin D, B12 , ferritin and a full iron test panel. One other I want to add is magnesium.
When your Free T3 result is available, please post with reference range. When additional tests are available, please get a copy of the lab report and do the same for those. If those don't reveal anything then you will need to do some further testing. But let's wait and see what we find out from these tests.
thank you so much for all your information and advise, I will definitely ask my doctor to send me to have these tests done...I am anxiously waiting for my results today or monday and I cant wait to show them to you too. =)
So I got the call from endocrinologist nurse saying they got the first results which were the T3 T4 and TSH and they were normal, the nurse told me to stay on synthroid.1mg. She said to keep taking it until they get the freeT3 and other results. Later my obgyn called (he has also been checking my tsh hormones and I called him to tell him about my symptoms 2 days ago so he called the lab and requested a copy of the results to be sent to him. He said before he went home he checked and found that my free T3 level was slightly elevated and asked me to stop the medicine until monday, he will talk to my endocriologist. I havent gotten the numbers of lab results on my email...but his call made me nervous, my pulse has not gotten to the 100's unless I walk the whole day...but still Im scared about my heart , I've read about atrial fibrillation and I did make an appointment with the cardiologist this monday... Im wondering if not taking the medication will make any positive changes soon? Now im thinking what you have said in other posts, that doctors base their decisions on the t3 t4 and tsh results this is what this endocrinologist did she told me to keep taking the same dosage before getting the free t3 numbers...I will start to look for another one ASAP. i will still post my results and I would appreciate any info or advise you could give me on those...thank you so much for every single reply you make to all of us on this thread...God bless you
Cant sleep im just very anxious thinking I had an overdose. And then the doctor asked me not to take any synthroid until monday, so 3 nights without it, was this the right thing to do? Is this the only choice in my case? I dont know anything about these numbers but when you say that u expect the freet3 to be in the lower half of the range is that something i should be concern of? Do u know of a good or excellent endocrinologist in the houston area?
Sorry for your sleepless night. No need for that much concern. No Synthroid for 3 days will just reduce your T4 level a bit and give you a respite and see what effect that has on the palps. The Free T3 test result will tell a lot about what is going on. If low in the range, that is often associated with having hypothyroid symptoms, which can include palps.
I don't have a member recommended thyroid doctor for the Houston area. I'll do some looking later today and see if I can find any good prospects.
I Tried to make an appointment with dr. Medhavi Jogi at the Houston Thyroid and Endocrine Specialists but since he is a very famous endocrinologist in the area the soonest appt available was on Aug. 28 and made an appointment with Dr. Juarez in the same clinic. Their website is www.houstonendocrine.com
I just cant thank you enough for ur quick responses, i know there are a lot of other people asking u and we are bombarding you with so many questions and concerns inquiring your thoughts and opinions. You are such a great person with a great heart. you are like an angel to all of us who are going through this type of situations. God bless you always.
Thanks vou for the kind words. There are numerous members here that spend lots of their personal time searching for useful info, reviewing scientific studies related to thyroid issues, and giving other members support and any help that can be provided. We were all helped in the past and are trying to "pay it forward".
I have found some doctors that appear to be prospects (as opposed to being suspects), for good thyroid doctors. Before sending you a PM with names, I would like to see the result from that Free T3 test, to better understand what is needed.
Also, I think you need to be aware that being an Endo does not guarantee a good thyroid doctor. Many of them specialize in diabetes, not thyroid. Many also have the "Immaculate TSH Belief" by which they only want to use TSH to diagnose and medicate a thyroid patient. That is very wrong. For those that do test beyond TSH, many use "Reference Range Endocrinology", by which they will tell you that a thyroid test that falls anywhere within the reference range is adequate. That is very wrong also.
A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve hypo symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not just test results, and especially not TSH results.
So, I'd like for you to be as confident as possible that whatever doctor you choose to spend your time and money on, turns out to be a good thyroid doctor.
So I went to the cardiologist today, she requested my labwork from last friday the ones my endo ordered. So when she received them she told me all were normal and I asked if my freet3 too? And she said "yes your t3 was normal too" and I told her that t3 and freet3 are not the same tests. So she said " oh, let me call your endo again and ask about it" and to my surprise this endocrinologist did not order lab work on my freet3. So the cardiologist is ordering them and a cbc as well to check my iron, ferritin, cholesterol, diabetes , blood count etc. tomorrow morning. We did an eco today and an ekg since my pulse was 120 when I arrived at the clinic and my BP was 148/? , but everything looked perfect. So I was sent home with a 24hr heart monitor . Im not sure what to do since my ob/gyn called me last friday to tell me my t4 was slightly high and to stop synthroid and today the endo is telling me the opposite to continue synthroid .100 because the 2 labworks from both doctors last friday showed normal numbers. So I guess im going to keep waiting for the freet3 and cbc that hopefully will be done tomorrow. Tonight im going to try and take half of my synthroid.1 pill. Im tired of this situation already. :(.
Okay, will wait for Free T3 result. Whenever a doctor tells you that a test is in the so-called "normal" range, just give the doc a copy of the link to the scientific study from which I quote as follows.
"High individuality causes laboratory reference ranges to be insensitive to changes in test results that are significant for the individual.
The width of the individual 95% confidence intervals were approximately half that of the group for all variables.
Our data indicate that each individual had a unique thyroid function. The individual reference ranges for test results were narrow, compared with group reference ranges used to develop laboratory reference ranges. Accordingly, a test result within laboratory reference limits is not necessarily normal for an individual."
Andersen S, Pedersen KM, Bruun NH, Laurberg P. Narrow individual variations in serum T(4) and T(3) in normal subjects: a clue to the understanding of subclinical thyroid disease. J Clin Endocrinol Metab. 2002 Mar;87(3):1068-72.
As I previously mentioned, 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."
The more you learn about hypothyroidism diagnosis and treatment, the better able to persuade your doctor to do what is necessary. If the doctor remains obstinate, then you have to find a good thyroid doctor.
Im going to print many copies and pass them on to my endo and to people I know that have this same problem so they can pass them on to their docs too...thank you. Been searching for someone who checks freet3 and 4 and I found these . I think I will make an appt with both . Would love if u would give me ur opinion on these specialists
Obviously I don't have any direct experience with either of those. From what I can pick up from an internet search, I think both places fall into the category of clinics that have been set up to fill the huge need for good thyroid doctors, which is due to most doctors having the "Immaculate TSH Belief" and using "Reference Range Endocrinology". The potential problem is one of potential cost.
I expect that you can get the diagnosis and treatment needed from either place. If they are like many others that I am aware of; however, , I think you may find that they do lots of testing, prescribe specialized hormone therapy that is expensive by nature, and also push supplements. Some of these places also only recommend supplements that they sell. Much of all this is not covered by any medical insurance.
So, if you are comfortable with all that, then I think either place might work for you. If cost is also very important, then there may be other viable alternatives. For example, on this Top Thyroid Doctors site, for Texas, there are a number of doctors listed for the Houston area. There might be a good prospect among them. The best way to find out is to read the patients' reviews, looking for evidence that symptoms are considered in treating patients. Also look for indications that the doctor is willing to prescribe T3 type meds, such as Armour, NatureThroid, or Cytomel.
After you select some potential doctors, the next thing I wold do is call and say that you're looking for a good thyroid doctor. Ask if the doctor is taking new patients. Ask if he accepts your insurance. Say that before considering an appointment, you would like to get answers to two questions. First, is the doctor willing to treat a hypothyroid patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, instead of using TSH levels? Second, is the doctor willing to prescribe T3 type meds? If someone will answer these two questions, and the answers are yes, then it is worth making an appointment. If either answer is no, then keep on looking.
If you need help in your search for a good thyroid doctor, just let me know and I'll be glad to do whatever I can.
I will follow your advice, I guess im getting desperate when I read on almost all of the houston area thyroid doctors' websites about Tsh t3 and T4 and nothing about freet3 or 4. Im also willing to travel around the Texas area to find the right doctor I'll keep loking and will definitely call for more info. Thank you so much again. = )
Finally got the results
Ferritin and iron levels were normal
T3 FREE (V) 2. Pg/mL. Ref range 3-5 pg/mL
So it's low right?
Also the cardiologist ordered a comprehensive metabolic panel I dont know anything about this but according to the ref ranges some of my numbers are high like NA , CO2 , CL, GLUCOSE . The CREA came out low. From the lipid panel the HDL was on the borderline of being high. Also I wanted to mention that when I stopped the medication over the weekend I started feeling a lot better and after the last 2 nights when I took half of my pill I started having the high pulse symptoms again.
Your Free T3 result of 2 is even lower than I expected. No wonder you would have hypo symptoms from that.
So, the obvious question would be why do you seem to react to the T4 med? That question makes me wonder about your ferritin/iron levels. I know they were "normal', but would you please post the actual results and their ranges.
I think your ferritin level explains some of what is going on. You have very low Free T3 level, yet when you start on T4 med to raise your Thyroid hormone levels high enough to relieve symptoms, you seem to have that reaction.
Here is some info on the effect of ferritin.
"Low ferritin can cause negative reaction like palpitations, nervousness, and anxiety in someone starting thyroid hormone replacement. Someone described it like being shot out of a cannon. It is therefore imperative that ferritin not be at the bottom of the range before starting thyroid hormone medication."
Also, from another source.
"I frequent another board where the role of iron in the metabolism of thyroid hormone is discussed. Along with selenium, iodine, L-tyrosine, zinc and other vitamins/minerals/amino acids, iron plays an important role in the conversion of the less inactive T4 form of thyroid hormone to the more bio-active T3 form.
I've seen iron discussed a bit on this board but not so much about ferritin . I thought you might be interested in what I found. Ferritin levels often begin dropping before serum iron levels become critically low or before full-blown anemia becomes apparent.
Many hypothyroid patients find that having good ferritin levels improves their use of thyroid hormone (their own body's or supplemented). The range of 70-90 is quoted as optimal for hypothyroid patients. Someone on another board asked me if I knew of any research she could show her doctor to support this. He wanted her to stop supplementing iron when she raised her ferritin from 17 to 44.
Here's some of the research I found that suggests a minimal ferritin
range of 50-70 and an optimal range for hypothyroid treatment of 70-90. I have read that in Dr. Gillespie's book, "You're Not Crazy, It's Your Hormones", she advises a ferritin level of around 100. I haven't read her book, so I can't confirm the research basis for her recommendation, but the experience of many hypothyroid patient certainly bear her out.
Improving ferritin levels can be beneficial for both reducing or eliminating hair loss & unexplained fatigue. Both of those are also frequently associated with hypothyroidism."
Here is some further info.
FERRITIN test: Measures your levels of storage iron, which can be chronically low in hypothyroid patients. If your Ferritin result is less than 50, your levels are too low and can be causing problems…as well as leading you into anemia as you fall lower, which will give you symptoms similar to hypo, such as depression, achiness, fatigue. If you are in the 50′s, you are scooting by. Optimally, females shoot for 70-90 at the minimum; men tend to be above 100.
"The recommended way of taking iron to build up levels as fast as possible is to build up slowly over a week or two to let your digestion get used to the added iron and take the iron twice a day. You are aiming to ramp up to 150mg to 200mg of elemental iron a day which is 8 of these capsules a day. You need to build up to this dose over a week or two letting your digestion settle at each dose level before increasing. We have found that if you take several grams of vitamin C with each dose of iron that it both helps absorption and helps counter the constipation that iron can cause. These iron capsules are available from health food shops, and pharmacies"
From another source.
The goal of treatment is to raise ferritin levels to a value between 70 and 90 mg/dL and this 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. Ferrous Sulphate (325 mg orally, available over the counter) is usually the recommended treatment. Doctors usually recommend one pill a day for a ferritin level between 50 and 60 mg/dL, two pills a day for a ferritin between 30 and 50 mg/dL and three pills a day for a ferritin less than 30 mg/dL. Note: Other good iron supplements are ferrous fumerate and ferrous gluconate.
After you start supplementing, keep in mind that you should be off all iron for at least 12 hours before any test to see what your body is hanging onto.
WOW!! I can't believe all this time and other times I've felt like this its been related to ferritin...since my previous thyroid tests have resulted on a normal range. I'm still waiting for the cardiologist to call me and explain my results...lets see how much she knows...last friday my obgyn called me twice. First he said all tests were normal (excluding the freet3) . So I asked if my symptoms could be realated to iron deficiency or ferritin levels...as u adviced me...and he said yes and asked me to start taking some over the counter Iron supplement and to go back to the clinic on monday to check these levels...then later that night he called and said he took a second look at the numbers and said one of the levels was slightly high...that's when he suggested to stop the synthroid over the weekend. So I didn't take the iron supplement thinking it was just my thyroid pill..I have learned a lot from all your researches...and thanks to u I will know how to choose the right doctor who could take care of my problem..I feel more confident about what to ask and ask and fight for when visiting a thyroid doctor....thank you for all your help..from the bottom of my heart many many thanks! I'm runnng to the pharmacy to look for some iron!
Just went through all my thyroid labs since january of 2012 and almost on all of them showed results of low tsh (under ref range) and high t4 (on the border) .. in two ocassions the FT4 was also high and even had a note saying "a low tsh with an elevated FT4 would be consistent with hyperthyroidism in the appropiate clinical setting or similar values have also been associated with non-thyroidal illness in severely ill patients"...never had read these labs before because I never requested copies until I started getting informed with you and decided to make an account with the lab so I could see my lab records too. I will not overlook my lab results again in my life.
Good for you...My endicrinologist lowered mine from 125mcg to 112 mcg. because I had a 30 lb weight loss(purposeful)..after 3 weeks, I felt like crap. I dissolved my 112 mcg in water...(1 oz. )and took a 112 tab and measured out water to equal 13 mcg.aqnd tookj that. since doctor was not available for a few days. I will call him Mon to see what my b/w showed..and let him take it from there. If we are not our own advocates......
I had tt in December 2014. Dr. Had me on .175mg of synthroid. Went to doctor in march was experiencing some heart palpitations told doctor she seem not to be concern. My test level a little high, I was feeling great absolutely great spirits were high energy level good except for palpitation. Went back to doctor told her how palpitations were jumping out of my chest she reduced my synthroid down to .025mg now i am extremely sluggish and tired no energy. I have gain 30 pounds since may my diabetes is harder to manage. I feel HORRIBLE.
Sorry took so long to get back to you. I gave a wrong dosage she reduced .125 down to .025. Here are my test results from sept 2014 before surgery (level 1.075)tolerance 0.465-4.680) and after surgery jun 2015 emgergency room visit heart palpitations (level 26.364) I went to primary care doctor a few days later meds reduced to .025 took blood test 30 days later (level .032) took another blood test aug 31 still waiting on results. Had surgery because goiter the was closing airway
So when you went to the ER they tested your TSH and is was 26. Is that correct? Then your PCP reduced your med from 125 down to 25. Then your test result 30 days later was .032? Please double check the test results against the time frame. I don't understand how your TSH could go down like that from reducing your med dosage?
Well, the results are puzzling, but it is clear that you are not taking enough thyroid med and have become hypothyroid, with those symptoms. You should know that TSH is a pituitary hormone, not a thyroid hormone. At best TSH is only an indicator, to be considered along with more important indicators such as symptoms and also levels of the biologically active thyroid hormones Free T4 and Free T3. So, you should always make sure they test you for both Free T4 and Free T3 each time you go for tests. If they resist, you should insist on both.
A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not just test results.
So when you get results from your latest tests, please post them and we can see what the doctor has tested for and what results indicate. Hopefully the doctor will also start increasing your meds again to get back to the levels needed to relieve hypo symptoms.
Also for the future, you should be aware that hypo patients are frequently too low in the ranges for Vitamin D B12 and ferritin. So those need to be tested and supplemented as needed to optimize. All three are important for hypo patients. D should be about 55-60, B12 in the upper end of its range, and ferritin should be about 70 minimum.
I had my whole thyroid removed because of large mass no cancer but it was huge going into my chest I am trying to recover just had the surgery last month march 8th. I am on Levothyroxine 137mcg now just saw my endo and surgeon for post op,, I am always tired I know its still to soon but I truly hope Im myself again soon I was active Im 65 but I was always walking doing things I know to heal takes time but I just dont feel like me anymore any advice please Lilly
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