Aa
Aa
A
A
A
Close
Avatar universal

Miserable at .375 Synthroid

I am a 50 yo female that had a thyroidectomy and radical neck disection in 1992 at age 32 due to thyroid cancer.  My Synthroid has been raised many times over the past 19 years and I am currently taking .375 Synthroid (that is not a typo) and feel horrible, emotional, heart palpitations, depressed, gaining weight, forgetful, all the stuff you can imagine, but my doctor says there is nothing he can do for me at this point.  (Menopause isn't helping.)  I had a sonogram of the thyroid bed about a month ago and 2 "spots" were found -- 1 is 1 centimeter and the other is 4 centimeters.  The plan is to do nothing now, but repeat that test in 6 months.  I am just trying to understand why I require such a HIGH dose of Synthroid and am SO legthargic, emotional, etc.  Could my adrenals be shutting down? (not that I even understand what that means)  I also have severe reflux that we are unable to control.  I had an upper and lower gi a week ago and meds were adjusted, but nothing further abnormal was found.  I am about to start the process of working with a holistic/homeopathic doctor.  I don't know what else I can do.  Please offer any insight you can.  Thanks.
Best Answer
Avatar universal
Just a couple of initial reactions to your test results and symptoms.  Your dosage is very high.   I don;t recall but one other member taking that much T4 med and he was what is called thyroid hormone resistant.  He had found over time that he had to keep increasing in order to get any effect.   The last time we heard from that member, as I recall, he was slowly backing down from 400 mcg trying to relieve some slight hyper symptoms.  Before assuming this is the cause of your problems though, I would check out other possibilities first.  

Another observation is that I don't have a lot of confidence in a doctor that is still running T-3 uptake and FTI tests.  They are obsolete, along with that total T4 test.  It would be far better to know the levels of your actual, biologically active thyroid hormones, which are free T3 and free T4.  FT3 is the most important because it is the most active and it largely regulates metabolism and many other body functions.  Studies have shown that it correlates best with hypo symptoms, while FT4 and TSH did not correlate.  

Another thought is that it would probably be a good idea to be tested for reverse T3 as well.  You can read about it on this link.

http://www.custommedicine.com.au/health-articles/reverse-t3-dominance/  

You might also note in that article that they suggest the following.

"It is also very important that if elevated levels of cortisol are found (stage 1 adrenal exhaustion) it should be treated first because if it remains elevated it will only continue to inhibit the 5-deiodinase enzyme and thus continue rT3 production reducing the effectiveness of this treatment. Low cortisol levels should also be treated because low cortsiol will reduce the number of T3 receptors and also prevent T3 transport within the cell, again  impeding improvement while on this treatment. In addition some patients respond poorly to thyroid medication if adrenal fatigue is present. Therefore we recommend you test adrenal function and correct it before commencing this treatment."  

Last, but not least, I think you should make every effort to find a good thyroid doctor.  As I said I don't have a great deal of confidence in your current doctor, based on limited information, but with your problems, it is vital that you find a really good thyroid doctor that can also get into the other issues as well.  If you will identify where you are located, you might be fortunate enough to get a doctor recommendation from a member with personal experience with the doctor.  
10 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Thank you for responding.  This is an awesome site.  You'r'e the first person I have talked to that takes anywhere near what I take.  Do you still have your thyroid?  Have you seen a holistic/homeopathic doctor?  Have you taken Armour or Cytomel?
Helpful - 0
Avatar universal
That sounds to me like u have more of a problem then thyroid disorder.  I have been on levothyroxine for 17 years (supposed to have been on, rarely took) Three months ago my tsh level was >150, my t3 and t4 were way out of range as well.  Even at these levels I never felt that bad, so if u feel that bad on meds it's probably something else.  I take 300 mg so my meds r about the same!
Helpful - 0
Avatar universal
I am in Dallas.  Does anyone have any experience Dr. Marina Johnson?  Also, I noticed a typo.  The 2 spots found in the thyroid bed recently are 1 and 4 millimeters, not centimeters.
Helpful - 0
Avatar universal
Thank you so so much!!
Helpful - 0
Avatar universal
I cannot thank you enough for taking the time to respond.  This sheds a whole new light on my situation and I will pursue it with passion.  Thank you.
Helpful - 0
231441 tn?1333892766
Hi

You should  have the FT3 and Ft4 tested to really know what's happening with your thyroid hormones.

I also take an extremely high dose of thyroid meds.  I am currently taking 215 mcg of ERFA (this is a dessicated thyroid product), plus 100 mcg of Thyroxine.  

Second, with the GI symptoms  you may also be having malabsorption issues.  You need to be tested for Celiac.  You probably should also try a gluten free diet (regardless of what the celiac testing does or doesn't reveal).  

Along with this you should be tested for Iron, B12, and Vitamin D levels.  If any of these are abnormal, they need to be treated.

Yes, I think your doctor is out of date and a new doctor may be worth considering if your current one won't or can't test you appropriately.
Helpful - 0
Avatar universal
I left the ranges off - here they are.

T-4           10.9       ug/dl         4.5-12.5    
T-3 Uptake    27.8       %             25-35        
TSH           0.52       uIU/ml        0.30-4.50    
T-7 (FTI)     3.03                     1.20-4.30
Helpful - 0
Avatar universal

Thanks - good advice.  Here are my results as of 2 weeks ago:
T-4           10.9                      
T-3 Uptake    27.8                      
TSH           0.52                          
T-7 (FTI)     3.03  
  



Helpful - 0
Avatar universal
As a start, please post your thyroid test results and their reference ranges shown on the lab report.  If you don't have a copy it is always a good idea to request one and note on there how you were feeling at the time, along with what meds you were taking.  The doctor is required to provide a copy upon your request.  
Helpful - 0
Have an Answer?

You are reading content posted in the Thyroid Disorders Community

Top Thyroid Answerers
649848 tn?1534633700
FL
Avatar universal
MI
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.