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Avatar universal

JUST CONFUSED*******

Ok, here goes.... In 2006 I started feeling fatigued, depressed, weight gain, took every bit of energy I had to go to the gym. *NOTE* prior to this I was a very active, happy, thin individual. So, I started seeing my Doctor, blood work was done, he said everything looks normal.  My symptoms continued to get worse, then got fibermyalgia. Doctor continued to have blood work done "normal". But, I wasnt, I kept telling him something was wrong. Finally, he put me on levothyroxin 25mcg. Continued blood work, still readings were normal. Symptoms continued to get worse. At one point he sent me in for a brain scan, Pituitary "normal"/ more blood work. I go into see him, he states "I'm confused, your blood work is telling me to decrease yours meds, brain is telling me to increase your meds. At that time I was taking 175mcg levothyroxin and 25mcg cytomel. So, Aug 2009, he sends me to an Endocrinologist. She does blood work, checks to see if my body is absorbing meds, it was. She takes me off cytomel and switches me to sythroid and ups it to 200mcg. I started feeling better, weight started dropping. Went back for 3mo check, blood work said hyper, but Endo went with my symptoms and left med at 200mcg. Went back in Jan 10, blood work said hyper, she lowered dose to 175mcg. Within a month hypo symptoms returned, so Endo put me back on 200mcg. So, Dec 2010 I was still feeling like myself. TSH 11.40 (range 0.30-5.27) Free T4 1.00 (range 0.8-1.8). Then July 2011 I started feeling hypo symptoms again. So, I went to see regular Doctor and he scheduled me to see an Endo. Aug 2011 blood work TSH 0.04 (range 0.49-4.00) Free T4 1.36 (range 0.60-2.00). She immediately dropped my dose to 175mcg, I tried to explain to her what would happen. She didnt want to here it. Started stating bone loss, heart problems that will happen if TSH continues to be this low. So needless to say I left her office feeling extreme anxiety. I knew what was coming. Went back and had blood work done Oct 2011. TSH 1.67 (range 0.49-4.00) Free t4 0.37 (range0.60-2.00). I told her how bad I was feeling, she refused to understand and said she is leaving me on the meds she prescribed. I fired her. Now it's Jan 2012, I feel horrible, have put on 12lbs since Aug and for no reason. Went back to my Primary Doc, he put me back on 200mcg. Said he will go by my symptoms, not blood work. I will post updated blood work as soon as I get results. I have been back on 200mcg since Nov 2011 and it doesnt seem to be working. Soooooooo????????



12 Responses
Avatar universal
One thought for you is that many patients taking large doses of T4 meds find that their body does not adequately convert the T4 to T3, resulting in a Free T3 level that is too low in the range, with resultant TSH levels.  that was my very situation for over 25 years until I learned about the importance of Free t3 here on the Forum.   I got tested for Free T3 and it was confirmed as low in the range.  Meds were changed to a T4/T3 combo type and after some tweaking of dosage, I now feel best ever.  My Free T3 is 3.9 (range of 2.3 - 4.2)  and Free T4 is .84 (range of .60 - 1.50).  You have not indicated ever being tested for Free T3, which you should have done.

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.  I think 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 from a distance.  The letter is sent to the PCP of the patient to help guide treatment.

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


Note especially the statement, "The diagnosis of thyroid insufficiency, and the determination of replacement dosing, must be based upon the patient’s symptoms first, and on the free T4 and free T3 levels second. The TSH test helps only to determine the cause."

Also note, "The ultimate criterion for dose adjustment must always be the clinical response. I have prescribed natural dessicated thyroid for your patient (Armour or Nature-Throid). These contain T4 and T3 (40mcg and 9mcg respectively per 60mg). They are more effective than T4 therapy for most patients. Since they provide more T3 than the thyroid gland produces, the well-replaced patient’s free T4 will be around the middle
of its range or lower, and the FT3 will be high-“normal” or slightly high before the AM dose."
Avatar universal
So if that's true. Why didnt I feel better or have better results when I was on levothyroxin 175mcg and cytomel 25mcg. Things continued to get worse until the Endo dropped the cytomel and put me on synthroid 200mcg then I began to feel myself. Are you saying the continued use of 200mcg is causing me to go backwards? This has just become a confusing mess. I did read the document, but it doesnt explain my situation. I had assumed Free T3 was done, but after reviewing my results, I can see they werent. I have just had lab work done, I will post when I get them. What do you suggest me asking my Doctor. I know how bad I get when Im dropped to 175. I just dont want to go backwards..
Avatar universal
25 mcg  of Cytomel plus the 175 mcg of T4 was a very large dose.  What kind of symptoms did you have at that time?  Did you feel different than when you were being undermedicated on lower doses of T4 only?

Will there be a Free T3 test, or even Total T3  in your current results you are waiting on?

Certainly no need to go back at this time, since you are still having symptoms. The clinical response is all important, not dosage.
Avatar universal
Felt no different when on both. Im pretty sure the Free T3 was included in the bloodwork. The only time my symptoms got better is when the Endo took me off the cytomel and change me from levothyroxin 175mcg to synthroid 200. And now, that doesnt even work. Here's my current symptoms. fatigue, lathargic, full nights sleep and then sleep more after I get up in the morning, dry skin, hair falling out, depression, cold (sometimes ice cold) hands and feet, fibermyalgia worsens, constipation, I force myself to go to the gym 5x a week, low appetite, migraines have increased and the weight is coming on. So are you saying both cytomel and levothyroxin were too high of a dose? I was started at 25mcg levothyroxinin Oct 2006 and slowly increased. By Aug 2009 I was taking 175mcg levothyroxin and 25mcg cytomel. I just feel like Im banging my head against a brick wall.
Avatar universal
What I meant about the 25 mcg of Cytomel and 175 mcg of T4 med was that it was a large dose, compared to that of most hypo patients.  That was the equivalent of about 275 mcg of T4 only.  So I am very surprised that it did not relieve hypo symptoms.  That was the reason I asked about what type of symptoms you were having at that time, I was wondering if maybe you had developed hyper symptoms from that dose.

Even though a doctor said previously that you were absorbing the meds adequately, I see in your Oct. test results that your FT4 was very low, indicting that you were not absorbing the 175 mcg of T4 very well.  Which reminds me of some advice given be a very good thyroid doctor for a ptient that was also taking large doses of meds, yet still had bad symptoms and low test results for FT4 and FT3.  The doctor said that patients absorb and react differently to thyroid meds.  He said that the only thing that was important was the clinical response.  

So it is very good that your primary doctor is willing to treat you clinically, for symptoms.  I would say that it is time to go back for testing again.  Make absolutely sure they test for Free T3 and Free T4.  I'd even go so far as to quiz the lab people drawing your blood to make sure they know it is to be for Free T3 and Free T4.  That way there won't be any mistakes.  

From your blood test results and your symptoms, the doctor can then adjust your meds further.  If you will please post your test results and reference ranges shown on the lab report members will be glad to help interpret results and advise further.  
Avatar universal
Im still waiting on results. Hopefully Monday. I take my meds exactly the same way everymorning. I never change a thing. But, my results are always fluctuating from one extreme to the other. If I dont hear from Doc by Monday and he didnt do a Free T3 I am ordering my own. I will post results as soon as I receive them.
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