Thyroid Disorders Community
will I ever feel better?
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This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

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will I ever feel better?

I was dx with Hashis almost 9 years ago! I was put on armour and then I moved and was switched to Synthroid. I was then given Synthroid/Cytomel and have NEVER felt any better. I joined this forum a few years ago and with all the info you guys provide, I am still confused! A little over a year ago I asked my endo to try me on Cytomel again, because I was off for a few years, and sure enough she said ok. My free T3 was low, so she went with it. The first few months I was still achey (achy) and then after upping Cytomel to 10 mcg a day, I was really racey. I felt like I was going a million miles a minute, even though my levels looked better. I then experienced a racey heart and was put back to 5 mcg of Cytomel. I am on 137 mcg of Synthroid and was just lowered because I was not sleeping either. I have had adrenals looked at, and they seem ok. I was tested 3 different times for congential adrenal hyperplasia and it came back inconclusive. I am on iron, vit D and do not eat any gluten. I had an elevated IGG blood test and feel better "gluten free" so I avoid it completely. I DO NOT have celiac though and made sure with an upper endoscopy and even had genetic testing for it. I do have a nodule on my thyroid that they say is to small to biopsy.
I am also low progesterone and recently had a uterine ablasion to stop my heavy bleeding.
I am so confused on where or who to turn to. I have spent thousands and I am sick of getting nowhere with this!
I want to feel better this year! I need a good doctor that gets this whole thyroid thing! MY WHOLE life I have felt sluggish and crappy! I was figured out with hypothyroid in my early 20's and have suffered from what they claim as PCOS my whole life. I had all the tests last year to prove the PCOS though and they all came back negative.
I am scared to try anything like armour or naturethroid again because I feel like it could be something I am missing!

PLease, Please can anyone helP?
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17 Comments Post a Comment
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1369218_tn?1282427484
hello? Anyone?
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Avatar_m_tn
Please post your thyroid test results and reference ranges shown on the lab report.
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1369218_tn?1282427484
My results from 2 months ago are:

TSH             0.28  L (.4-4.5)
Free T3        2.9   (2.3-4.2)
Free T4        1.3   (0.8-1.8)

I was on 150 Synthroid and 5 of Cytomel and was lowered 2 months ago to 137 Synthroid and 5 of Cytomel.
I was on 10 of Cytomel split up twice a day about 2 months before this and my Free T3 looked better, but my heart kept beating out of my chest so I was lowered to 5 a day.
I also feel AWFUL with more Synthroid, so upping it isn't my solution.
I was very aggitated and irritable at the 150 Synthroid. I also really do not feel any better being lowered and I have gained 10 pounds too! I don't feel like it might be a thyroid issue anymore!!! I am seeking out a new doc that looks at adrenals and other issues! I cannot get into him for a month though.

What testing do you suggest? I constantly feel wired and tired, achey (achy), irritable and I have about 40 lbs to lose.
I was tested for Congential adrenal hyperplasia and tests came back inconclusive!!! So irritated with that one too!
I need help! Please any advice is helpful!
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Avatar_m_tn
From your symptoms and your FT3 level, I'd say that you are still under medicated and  need to increase your FT3 level.  Just being in the lower end of the so called "normal" range does not  work for many peoploe.  My best explanation for this is that the range has never been corrected like was done for TSH over 8 years ago.  At that time the AACE acknowledged that there were far more hypo patients than would be predicted by their old range of .5 - 5.0.  When they purged from the data base suspect hypo patient data and recalculated the range it became .3 - 3.0.  This was a huge change.  Unfortunately as you can see by your own lab's range, it has not been adopted by most labs and doctors yet.  

Having a background in statistical analysis, I can tell you that if suspect hypo patient data were also purged from the reference ranges for FT3 and FT4, then the new ranges would look more like the upper half of the current ranges.  I firmly believe that is the reason that we hear from so many members with lingering symptoms, yet their FT3 and FT4 levels are in the low end of the ranges.  

So, you were trying to increase your FT3 by using Cytomel.  Directionally correct, but you had trouble with it.  I have had a similar experience with Cytomel.  Can't explain it, but never felt comfortable with it.  Have since switched back to Armour thyroid and it is doing quite well for me.  You might consider talking to your doctor about switching to a couple of grains of Armour, as a replacement for the Synthroid/Cytomel.  
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1369218_tn?1282427484
Next month I am seeing a new doc that has great reviews with thyroid. I am scared to try armour because of the new formulation. Aren't most people going to Canada for meds?
Cytomel makes me very racey and hyper. I do not like it. I have been told by different endos that I am on a high dose of Synthroid and I might feel pretty bad if I switch over. I also last year tried Synthroid and Naturethroid together and did not feel better.
I understand I could use more medicine, I just cannot handle it. I am just hoping that after the thousands I have spent that I can find a doc that gets it!!!
The book Stop The Thyroid Madness is great, but most docs that I see don't understand the thyroid! This new doc is unfortunatly a "cash only" doc! I have great insurance, but not always the way to go!
Are you on the "new" armour? Have they switched it back yet?
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Avatar_m_tn
Have you seen this link on Top Thyroid Doctors in Colorado?  There are several listed in Colorado Springs.  If any look interesting, then have a look at the patient's reviews also.  You might find a good one that also accepts insurance.

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

I am taking the new Armour.  I know some people are leery about it, but I can only say that is fine for me.  
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1369218_tn?1282427484
Thats where I found the doc I am seeing!!! He has great reviews and he seems to look outside the box! Also, he does use armour! I am excited to get a "new" opinion! I was really trying to avoid using those docs that don't take insurance, but oh well! Thanks for your help! I also just had my thyroid levels checked yesterday so I will post the new levels when I get them. Thanks again!
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1369218_tn?1282427484
My new levels are:
TSH     1.47   (0.40-4.50)
Free T3  2.6    (2.3-4.2)
Free T4  1.4    (0.8-1.8)

So again my Free T3 is low. Like I said before that I am on 5 mcg of Cytomel and cannot tolerate anymore!!! So frustrating considering I am gaining weight and feel awful!!!
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Avatar_m_tn
Your meds change two months ago reduced  your FT3 level significantly.  Just looking at the latest FT3 result, I would expect that you would not be feeling very well.  I think you need to ask about switching to a combo T4/T3 type med and ramp up very slowly, to possibly avoid a "racey heart" again.  Some patients have to increase very gradually to allow their body to accommodate the change and avoid unwanted reactions.  

I'm sure your doctor will be happy to discuss a possible change in meds with you and determine the best way to make the change.  Your old dosage was pretty close to being equivalent of 2 1/2 grains of Armour.  From your current medications, I would think you could switch to 2 grains of Armour, or the like, and then increase very slowly from there until symptoms were relieved.
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1369218_tn?1282427484
I take Nexium for acid reflux. I have been taking it at the same time as the Cytomel.
Do you think it is affecting it? I asked pharmacist a while ago and she said no. I beg to differ though. I am also going to try and do 2 Cytomel again and see if that helps until I can get into this new doc next month. I have plenty on hand.
I do take Synthroid in the morning without any other pills too.
What tests should I have run with the new doc?
I have never had reverse T3 or any of those tests ran? I think if I am going to switch I will try Erfa because of what everyone says about it. How long does it take to convert?
Am I going to go through hell before I feel better again?
This thyroid thing *****!!!
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1369218_tn?1282427484
I did not even say a bad word at the end. How funny!!!
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Avatar_m_tn
I got acid reflux so bad that I was taking two Prilosec every day plus some Tums when needed.  this was when I had gotten my meds messed up and gone hypo.  I went back to Armour and in two days, the reflux was gone.  Honest to god.  

If you just switch over to Erfa, or Armour, or Nature-Throid, I don't think you should have to go through a bad time making the transition.  I also think you could feel better fast that way, although symptoms do tend to lag behind changes in blood levels of thyroid hormone.

As far as testing, you've already had the most important ones done.  Since hypo patients frequently also have low Vitamin D, B12, magnesium, iron/ferritin, and selenium, might be good to get tested for those.
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Avatar_m_tn
You should also be careful experimenting with Cytomel, it is a very strong T3 and will cause the rapid heart rate very fast. I just switched from Synthroid to Armour and optimistic  about it, I have been on Synthroid for 2.5 years and never was symptom free.
Good Luck FTB4
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1369218_tn?1282427484
I was on 2 Cytomel for a while. I am not worried about it. I also take iron and Vit D because both were low. I take the 2 together at dinner. It gets so confusing on when to take.
What other tests should I have this new doc run?
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Avatar_m_tn
My test recommendations shown above.  
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1369218_tn?1282427484
What about RT3? What about adrenals??? Should I not take thyroid with other pills?
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Avatar_m_tn
I said nothing about the adrenals, because you mentioned that you were going to see a new doctor and get adrenals tested.  The main thing I see is the low-in-range FT3, which, along with your symptoms,  is indicative of being hypo.  The other tests I suggested are because they frequently are deficient when hypo.  One other I have seen mentioned as helping T4 to T3 conversion was Zinc.  I see no reason right now to be suspicious of your RT3 level.  I'm sure your new doctor will also have his own ideas about testing.
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