Total Thyroidectomy & Synthroid Dosage

[lilypad300]

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?  

help!
thanks!

[gimel]

If you have had any thyroid related tests since the surgery, please post results and reference ranges shown on the lab report.  

[lillypp]

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

[gimel]

Make sure that they test for Free T4 and Free T3, not Total T4 and Total T3.  Also the Vitamin D, B12 and ferritin are very important to know.  

[msvee61]

I do take 650mg of calcium twice a day. I have been set up to see thyroid doctor on 24th of month. I'm sure they have given me the same exact test. I will keep you posted

[gimel]

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.

[msvee61]

Yes that is correct.

Test results:
June 17 2015 @ 19:23 TSH 26.364 H
July 17 2015 @ 09:43 TSH 0.032 L

Also that night at er i was given a angiogram to check my heart because of palpitations. My numbers are correct reading straight from results. Is there anything else from results i can give you

[gimel]

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?

[msvee61]

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

[gimel]

OMG.  Your doctor reduced your dosage from 175 down to 25?  

Please post your thyroid test results from before you started on the Synthroid and latest, including reference ranges shown on the lab report.  

[msvee61]

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.


                                                                            Msvee61

[madameheaper]

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......

[annie_2013]

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.

[annie_2013]

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!

Ana =)

[gimel]

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.

[annie_2013]

FERR.  29                 Ref. range  18-137ngl/mL
IRN.      127               Ref. range  37-170ug/dL

IBCT.    355.7            Ref. range 265.0-497.0

[gimel]

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.

[annie_2013]

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.

[gimel]

Sent PM with doctor's info.  To access, just click on your name and that takes you to your personal info page.  Then click on messages.  

[annie_2013]

Of course!!!!!!  :)

[gimel]

Well, if you are willing to travel a bit, I have personal knowledge of an excellent Endo in the Austin area.  Any interest?

[annie_2013]

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. = )

[gimel]

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.  

http://www.thyroid-info.com/topdrs/texas.htm

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.

[annie_2013]

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

http://www.hotzehwc.com/en-US/Treatment-Programs/Hypothyroidism.aspx

http://www.taylorwa.com/

[gimel]

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."

http://hormonerestoration.com/files/ThyroidPMD.pdf

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.