Thyroidectomy

[craftmaker43]

I had my thyroid removed 2 years ago. I had multiple nodular goiter, Hoshimoto's disease, and after 2 biopsies, they found atypical cells. I am on levothyroxine 100mcg. According to my blood work, everything is fine. I am so severely fatigued it is getting hard for me to function. I still have all the symptoms as before the surgery.( Dry hair, hair falling out, sensitivity to cold, dry skin, constipation, brain fog, severe fatigue )  I keep getting told that I am depressed. After I argued that I am not depressed, I was told that it must be stress. REALLY???? I'm not sure what to do at this point. I currently work for a pain doctor who suggested a medication that would help with the fatigue. Even a short term prescription that might help until I can figure out the cause. I called my Endo doctor. They said NO! We don't write for that type of medication and made me feel like a drug seeker. I have never asked for anything! I have tried multiple vitamins and herbs. I have done everything she has asked of me! Nothing has helped. She has only performed the basic thyroid tests and basic blood panels. All of my blood work has been fine. Are there any suggestions to other tests that might help give me an answer to my fatigue and other symptoms?

[craftmaker43]

Thank you so much!!

[gimel]

I have a line on an Endo in Akron/Canton area.  I want to call his office tomorrow and see if I can get through to a nurse and ask some revealing questions about his testing and treatment of thyroid patients.  I'll let you know when I have more info.

[craftmaker43]

I am located in Wooster, Ohio  44691. I currently travel to Canton, Ohio. I don't mind the drive as long as I can find a doctor that will help me. Thanks so much to anyone that can suggest a doctor for me!

[craftmaker43]

I take a total of 2400 IU per day. I don't think my level was terribly low. I think the doctor wanted it to help with the calcium absorption.

[gimel]

Tell us where are you located and perhaps members can recommend a good thyroid doctor based on personal experience.

[payton382]

I'll let someone else answer the thyroid stuff.  Thinking you'll need a Free T3 though.  

As far as Vitamin D; do you know how many iU's you're taking per day?  So whatever is added in the Caltrate plus the 1,000 additional?  I ask because normally around 2,000 iU's is a maintenance dose for people with normal Vitamin D levels.  

Depending on where your Vitamin D level was/is will depend on how much you should take.  It's not uncommon to take somewhere between 5,000 to 10,000 iU's per day if Vitamin D is low (e.g., in the 20's or 30's).  

Vitamin D is fat-soluble so it needs to be monitored by a Dr with blood draws every 3-4 months.  However, I don't think Vitamin D would account for your symptoms but getting it up, if it's still low, will help with mood.  

I'd request a Free T3, Ferritin, and recheck your Vitamin D so you know where you are at with that.  

[craftmaker43]

I work for a doctor who ordered a few tests for me. He is not my Endo doctor. He wanted to give me a start. He looked at the results ( listed above ) and said that there is a problem. He suggested that I do find another Endo doctor for a second opionion since my current one is not doing anything for me! He did not run a Free T3. He did a T3 Uptake. I do not have the readings for my Vitamin D. I know I was low that is why I am on the supplements. If I am still low after taking what I do, then there is a real problem. I take Caltrate 600 + Vitamin D and also Vitamin D 1000 IU. If you have any suggestions for me to help with the search for a new doctor, I would greatly appreciate it!

[gimel]

What about the Free T3 test?

What is your Vitamin D level?

[craftmaker43]

I do take supplements for Calcium & Vit D. ( Caltrate 600 + D and also Vit D 1000 IU )   Last testing for B12   809    range: 211-911

I also just had a complete Liver panel which showed normal.

[gimel]

The T3 uptake test is somewhat outdated and not nearly as useful as the Free T3 test.  Would your doctor not agree with doing the Free T3 test?

Your limited lab results continue to  make me suspicious that your body is not converting the T4 med to T3 adequately.   You really need to confirm this by testing for Free T3.  I expect that you will find that your Free T3 is in the low end of its range, or below range, indicating the need to add some T3 to your meds, and then adjusting the Free T3 level until symptoms are relieved.

If your doctor is unwilling to treat you clinically by testing for Free T3 and then prescribe T3 type meds as necessary to relieve symptoms, you should fire that doctor and find one that will do so.  If you will tell us where you are located, perhaps a member can recommend a good thyroid doctor.  

Assuming that you do go back for Free T3 testing, please make sure they also test for Vitamin D, B12, and ferritin.  

[craftmaker43]

I have tried before switching to the name brand. Really didn't make a difference for me. Thank you so much for your input. I truly welcome any and all suggestions!!  :)

[craftmaker43]

Just had some lab work done yesterday.

T3 Uptake   0.87    Range: 0.80-1.30

TSH    0.20    Range:  0.27-4.20

Free Thyroxine  1.8   Range:  0.6-1.7

[Totie]

Have tried "Synthroid".

I had the same issue almost a yr. ago, but my Endo switched the brand from Levothyroxine to Synthroid. It made a difference for me.

[gimel]

Then I would still suggest that you should go back and request to be tested for Free T3 and Free T4, along with the TSH.  I would also suggest that you get tested for Vitamin D, B12, and ferritin.  One other thought.  When you go into the lab for testing, you should also make sure the lab techs know it is to be for Free T3 and Free T4, not Total T3 and Total T4.  You'd be surprised at how often they operate on auto pilot and overlook that is supposed to be Free T3 and T4.  

[craftmaker43]

I have never been tested for Free T4.

The last time I was tested for Free T3 was 02/16/09.
3.3   Range:  2.3-4.0

My Thyroidectomy was 06/2010.

[gimel]

Hypo patients that are taking thyroid meds frequently find that in order to raise their Free T3 and Free T4 levels enough to relieve symptoms, they have to increase meds to a dosage that will suppress TSH.   In those cases where patients are taking thyroid meds, the TSH becomes even less reliable as an indicator of thyroid status.  A suppressed TSH does not mean that you have become hyper.  You are hyper only if having hyper symptoms (which you do not have), due to excessive Free T3 and Free T4 levels.

So if the doctor insists on medicating you based on TSH you will continue to be kept ill.  You must take charge of your own health and persuade the doctor that you need more medication, and that TSH must be ignored, or else you MUST find a new doctor that will treat you clinically.

What are your latest test results for Free T3 and Free T4, along with their reference ranges?

[gimel]

Yes, I know about the Reverse T3 test.  I did not suggest it because it is only an infrequent contributor to hypothyroidism and doctors usually resist testing for Reverse T3 even more than Free T3.  In view of your TT and your medication dosage, It is far more likely that you will find your problem to be insufficient medication and or inadequate conversion of the T4 to T3.  So I suggested that you first get the tests necessary to confirm if Free T3 and Free T4 that are too low in the range are the cause of your hypo symptoms.  

[blsdnsvvd]

I also had a TT 2 1/2 yrs ago for a multinodular goiter with abnormal cells. The difference with me is that I only had high blood pressure before the TT. After the TT, a totally different story. I now have Anxiety/Depression  Disorder that returned after 10yrs, Rheumatoid Arthritis, Carpal tunnel, Extreme Fatigue, muscle aches, Arrythmia, Sensitivity to cold and Heat, Mood swings, Brain Fog, Loss of short term memory, No focus, etc etc. My doc is useless and tells me that I have to deal with the symptoms. Most endos only concern themselves with the TSH levels, however Normal is not always Normal. I have to tell my doc to request a FT3 for my purpose. My TSH level varies depending on the dosage of my med (synthroid). The higher the dosage, the lower the TSH, which is why i cannot go past 100mcg's. It tough not having a thyroid and there is no comparison between those who still have theirs.    

[craftmaker43]

Have you heard of the Reverse T3 test? Is that important as well?

[gimel]

Your testing for thyroid status is totally inadequate.  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, which are Free T3 and Free T4 (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 also shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate.  

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.   Be aware that Free T3 and Free T4 test results that fall in the lower half of their ranges  are frequently associated with being hypothyroid.  The ranges are too broad.  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 middle of its range.

I suggest that you should go back and request to be tested for Free T3 and Free T4, along with the TSH.  I would also suggest that you get tested for Vitamin D, B12, and ferritin.  If the doctor resists and makes excuses that it is not necessary, just insist on it and don't take no for an answer.  It's that important.  

Then when test results are available, please get a copy and post results and their reference ranges shown on the lab report and members will be glad to help interpret and advise further.  

[craftmaker43]

The last testing was on 12/30/11
TSH, Ultrasensit   0.57     Range:  0.27-4.20

9/23/11
Iron, Total             83        Range:  50-170
TSH, Ultrasensit   0.33      Range:   0.27-4.20

07/18/11
TSH, Ultrasensit  3.94       Range:  0.27-4.20

01/12/11
TSH, Ultrasensit  1.68       Range:  0.27-4.20
Thyroglobulin       0.3         Range:  2.0-35.0

[gimel]

You sure sound like you have hypothyroidism.  After a thyroidectomy, 100 mcg of Levo does not sound like what I would expect to be a full daily replacement.  Just because your thyroid test results fall within the so-called "normal" ranges does not mean that is adequate for you.  If you will post your thyroid related test results and their reference ranges shown on the lab report, members will be able to assess the adequacy of your testing and treatment.