New here and looking for advice

[Rene76]

Hi everyone!  About ten years ago I had a subtotal thyroidectomy for a very large goiter.  Up until a couple years ago I never was prescribed synthroid despite having hypothyroid symptoms, because my TSH was in the normal range (2).  Then, I started developing more nodules, and my doctor prescribed my .05 mcg of synthroid.  For these last two years I've really put forth my best effort to lose extra weight I've been holding on to (50 lbs).  I've tried low carb, low calorie, paleo...every diet you can think of.  I saw a nutritionist who put me on a thyroid diet, and still no luck. She accused me of not adhering to her plan, so I quite seeing her. :-/ I even did a juice fast for seven days and lost a whopping total of 1 lb!  I also exercise 5-6 days a week for 45 minutes.  I do circuit training, weights, and jogging. I weigh exactly the same as I did two years ago.  A couple months ago my doctor changed my synthroid to .112 mcg.  Still no weight loss, but my levels now show me being hyperthyroid.  I'm at .15 with T4 1.3 and T3 2.94.
My doctor wants to reduce my dose now.  I'm at my wits end and was just hoping one of you may have an idea.  If my issue isn't thyroid, is there something else it could be? The extra weight really bothers me, and while I'm proud of how hard I've worked, I'm getting discouraged.  Thanks

[Rene76]

Thanks, I will. I've been wondering about my cortisol. The serum test was normal but I've read saliva is more accurate.
Something else I've started researching is having the total thyroidectomy. I just feel like this small piece I have left is detrimental and throwing everything off. I have clearly defined hypo and hyper symptoms, and always have. They've just worsened as of late. I spent yesterday on pubmed reading about this. Evidentially TT is preferred to subtotal, and subtotal is actually looked no longer performed by many dr's, particularly in England. When I had the initial surgery I was schedule for a hemi but during surgery they discovered abnormal cells in the frozen section and ended up doing the subtotal. When the permanent pathology came back it showed the abnormal cells were actually carcinoma cells...hurthle cells. The surgeon said if that had come out during the surgery he'd have removed it all.

[gimel]

Now that you have confirmed the Free T3 result, that puts a different light on things.  The only thing that seems to fit with your hypo symptoms, in conjunction with a high Free T3 level, is something called "pooling" of T3.  Following is a quote from some info I found some time ago.

"If the Free T3 is still high in the range, then it could be related to something called "pooling" of T3 in the blood, for which I found the following info..

"Low cortisol/adrenal disfunction. AD often accompanies hypo and gives low T4 with much higher T3: Free t3 is pooling in the blood unable to reach cells due to low cortisol. A saliva (or urine) four-point cortisol test can confirm this."   So if Free T3 is still high, that is something else to ask the doctor about, a four point saliva, or urine, cortisol test."

Worth checking out with your doctor.  Insist on saliva cortisol tests (total of four over a day).  

[Rene76]

Sorry, I didn't specify this bit it's a Free T3

[Rene76]

I've got it. I went by today to have a b12 drawn and got a copy.  Everything looks in line with what she told me...

[gimel]

Something doesn't add up on the T3 results.  The usual range is more like 80-220.  Before trying to assess any further, I'd ask for a copy of the lab report.

[Rene76]

Okay, they "found" my T3 results and they are high, at 470 (Range 230-420).  My Reverse T3 was 200 (ref range 70-260) and my t3 ratio was 2.35.  Clearly I'm in a hyperthryoid state from the medication I guess.  I'm just so confused on the inability to lose weight, and the weight gain since starting Armour.  If I'm hyper how is that even possible?  The last few days my fatigue has become even worse, leaving me feeling almost flu-ish.  The doctor plans to reduce my meds, but says other than that I'm fine.  I'm not really sure what to think at this point...

[Rene76]

I just received an email from my doctor. Despite my specifically requesting it, apparently she didn't order the T3. The email said my TSH was 1.2, so nearly the same as the last reading was 1.15. The thyroxine free was 1.2, down slightly from 1.75. She also said my C-reactive protein was high at .9 but she wasn't concerned because it was a low high. I'm so confused by all of this. I'm going to look in to ordering my own labs tomorrow.

[gimel]

I would not even think about Reverse T3 unless you continued having hypo symptoms after getting your Free T3 into the upper part of its range, along with Free T4 around the middle of its range.  And don't forget about Vitamin d and B12.  Very important to find out those and supplement, if necessary.

[Rene76]

Thanks! I'll print those. I wish you were an endo. ;)

I've been reading about reverse T3, and wonder if that's why I've gained weight on Armour. Maybe the dose is too high. When she switched me from 112 mcg synthroid to Armour she said bc I was so hyper she was reducing my dose to 90 mcg. However, the conversion of synthroid to armour she actually increased it. When I tried to explain this she disagreed and said it was lower. If that hows what I'm dealing with....

[gimel]

You might give a copy of this link to the doctor and point out the majority of people in the study, with suppressed TSH, had normal FT4 levels.  Here is a quote," When TSH was suppressed, FT4 was elevated in 30.4% but normal in 69.6% of patients."

http://www.ncbi.nlm.nih.gov/pubmed/1366242

Further evidence from the British Medical Journal, in the following link.  Note the statement, " Measurements of serum concentrations of total thyroxine, analogue free thyroxine, total triiodothyronine, analogue free triiodothyronine, and thyroid stimulating hormone, made with a sensitive immunoradiometric assay, did not, except in patients with gross abnormalities, distinguish euthyroid patients from those who were receiving inadequate or excessive replacement."  

http://www.bmj.com/content/293/6550/808

And last this link to a scientific study that concluded that Free T3 correlated best with a composite score of the main hypothyroid  symptoms, while Free T4 and TSH showed no correlation at all.  So that is the reason that Free T3 is the most important thyroid test; however, the most effective treatment is clinical, based on testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms.  

http://informahealthcare.com/doi/abs/10.1080/13590840050043521

[Rene76]

Thanks. :) My doctor here order labs and may decrease my dose because she thinks I'm hyper. She also says the the FT3 levels are irrelevant. So, I'm hoping to get someone more knowledgeable when I move. I'm starting to feel desperate.

[gimel]

Don't be discouraged.  As long as your current doctor is willing to work with you by increasing your meds, as necessary to relieve symptoms, you can look forward to feeling better and better.  And I'm sure we can find a good thyroid doctor for you in the New Orleans area.

[Rene76]

I've been on it 6 weeks. I had labs drawn Thursday so I'll see soon.  I did discover one good thing. My blood pressure has been slightly high my entire life. Growing up it was always 120/80, but the last few years it has been 140s over the 90s. At my appt Tursday it was 126/70!
My appetite has nearly disappeared except for in the morning, and then I'm starving. I have to force myself to eat 1200 kcal a day.  I'm just getting really, really discouraged.

[gimel]

How long have you been on the Armour.  The dosage is just about  equivalent to your prior T4 dosage.  I expect that you need to increase.   About time for new tests for Free T3 and Free T4.

[Rene76]

Since I last posted I have been on armour 90mg. I thought this would be a game changer for me but I've gained 4 pounds and feel very tired. I do no longer have  brain fog though, which is great. I have been waking up most nights at 3am and can't return to sleep, my body feels achy, and this week the skin over where my thyroid used to be turned bright red and is hot. I went to see my doctor, who wasn't concerned. :-/ Has anyone ever experienced anything like this? I'm hoping to find a better specialist in the New Orleans area because I'm moving there in June, if anyone has any recommendations.

[gimel]

That ferritin level is fine.  Just being reported as "normal" is never adequate because ranges are frequently too broad to be functional for many people.  Vitamin D needs to be around the middle of its range.  Maybe you can inquire and find out the actual result.

[Rene76]

Also, my HDL is low now (43.7).  It has continued to decrease as my lifestyle got heavier.  My doc says there is a connection between HDL and thryoid.  The rest of my cholesterol panel is great.

[Rene76]

Vitamin D, 25-hydroxy serum just says "normal report".  Ferritin serum is 76.

[gimel]

What were the actual results on Vitamin D and ferritin?

[Rene76]

Thanks for your fast response.  I was surprised there was no free t3, and my doctor isn't there this week to ask.  My ferritin and Vitamin D was normal . My thyroid ultrasound showed a few very small hyperechoic cysts in the left thyroid lobe (3mm), and residual thryoid tissue in the right side.  
The symptoms I have aren't really weight gain, but I always diet.  I just can't lose a pound no matter what I do or how much I exercise.  I have very puffy eyes and face, brittle, thinning hair, dry skin, fatigue, and some joint pain.  I also have unexplained mild sleep apnea.  They found no obstruction, but I just quit breathing and I spend very little time if any in the deep sleep stage, which also explains the fatigue.  I'm at my wits end!

[gimel]

What symptoms do you have other than the weight gain?

Everything looks in order only because they did not do the most important thyroid test which is Free T3.  I still suspect that you will find that your Free T3 is way too low in the range, even though your Free T4 is in the upper part of its range.  That will be due to inadequate conversion of T4 to T3.  

If it were me, I would always make sure that Free T3 is on the lab order and also make sure the lab personnel know you are to be tested for Free T3 along with Free T4.  Also, since hypo patients are frequently too low in the ranges for Vitamin D, B12 and ferritin, you should test those also.  

I would also suggest that you accept your doctor's offer to switch to Armour Thyroid.  That would provide a source of T3, along with T4.  If you do that, be aware that you should not make the switch all at once, due to the way T3 acts compared to T4.  Best to phase in any change to Armour over a 3-4 week period.  If I understand correctly your dose of 112 mcg of T4 would be equal to about 1 1/4 to 1 1/2 grains of Armour, where one grain is 60 mg of Armour..  

[Rene76]

Sorry for the delay.
I finally received my results in the mail and the free T4 I was told verbally was I guess from my prior results.  The actual free T4 is 1.75 (normal range 0.6-1.8) and the thyrotropin sensitive was 0.150 (normal range 0.27-5.0).  I dont't show what they ran a free T3.  They also ran a cortisol free that was .26 mcg (no reference range shown) and a parathyrin intact which was 10 (normal reference range 10-65).
Everything looks in order, so I'm not sure what to think at this point.  

[gimel]

Please post the reference ranges for your Free T3 and Free T4 tests, as shown on the lab report.  

[Rene76]

Thank you.  I am moving to New Orleans in a couple of months.  My doctor has suggested trying Armour thyroid.  I don't know if that would make a difference.
Thanks again...I'm going to read the information on the link you posted.