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Not Sure What to Do at This Point

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#1 AandA'sMom


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Posted 25 May 2018 - 03:57 PM

I've posted here before but haven't for awhile.  I felt like I was starting to sound like a broken record in my posts, plus work and home life just got super busy.  I'm back though, because I am just at a loss at this point.

My primary care physician had been treating my thyroid for several year.  After I started reading things about FT4/FT3/Reverse T3/T3 medications I started asking her to run additional tests, because I never felt "good" on my dose of Synthroid.  When I had my labs done on November 1, 2017 these were my results:


Nov 01, 2017 Iron Level 83 ug/dL     28-170 ug/dL


Nov 01, 2017 Ferritin 28.3 ng/mL     11.0-306.8 ng/mL  


Nov 01, 2017 Thyroid Antimicrosomal Antibody 0.30 IU/mL      0.0-9.0 IU/mL  


Nov 01, 2017 Thyroglobulin Antibody < 0.9 IU/mL      0.0-4.0 IU/mL  


Nov 01, 2017 Vitamin B12 Level 350 pg/mL      180-914 pg/mL  


Nov 01, 2017 25-Hydroxy Vitamin D Total 33.5 ng/mL CommentIcon.png      30.0-100.0 ng/mL  


Nov 01, 2017 Thyroid Stimulating Hormone (TSH) 0.05 uIU/mL      0.34-5.60 uIU/mL L


Nov 01, 2017 Free Thyroxine 1.31 ng/dL      0.40-1.40 ng/dL  


Nov 01, 2017 Free Triiodothyronine (T3) pg/mL 3.2 pg/mL      2.9-3.9 pg/mL


Nov 01, 2017 Reverse Triiodothyronine (T3) 24 ng/dL CommentIcon.png      8-25 ng/dL  


Nov 01, 2017 Total Triiodothyronine 116.00 ng/dL      26.0-178.0 ng/dL  


Nov 01, 2017 Thyroglobulin Level 3.53 ng/mL      1.3-31.8 ng/mL  


Nov 01, 2017 Thyroid Stimulating Immunoglobulin <89 % baseline CommentIcon.png      <140 % baseline



With these results my PCP wanted to lower my Synthroid from 175 mcg to 150 mcg.  I objected, so she wanted to refer me to an endocrinologist.  I had heard about an endo that was willing to use T3 medications.  I thought maybe she was more open to the newer ways of thinking, so I asked for a referral to her.  She did test my FT4 and TSH but said FT3 and Revers T3 were unnecessary.  Based on my FT4 (can't remember what it was exactly but know it was in the 1.30s) and TSH (I'm thinking it was 0.10) she lowered my Synthroid to 175 mcg four days a week and 150 mcg three days a week.  This was obviously based on my TSH along, since my FT4 was within the normal range.  I didn't argue, as she was a new doctor to me and I thought I'd just see what happened.  I went back two weeks ago, and my FT4 was in the 1.30s again (normal) but my TSH was either 0.05 or 0.10, so she lowered my Synthroid dose to 150 mcg all the time.  I'm two weeks end to the new dose, and I can completely feel the change.  I AM EXHAUSTED!  Exhausted as in I've had two people tell me this week that they can see it (they don't know anything has changed).  


I should probably mention that I did start taking iron and vitamin D after the above labs.  I think they helped some, but now that my Synthroid has been lowered, I feel like crap again.

I was at my PCP this morning for my annual checkup and we discussed it.  She said maybe I should try Cytomel again (she had tried me on it before) with the endocrinologist.  I just don't know at this point.  I need to find a doctor who will listen to how I feel and quit going on TSH alone.  I mean if my FT4 and FT3 are normal, is the TSH being low really an issue?  I never, and I repeat never have any symptoms of being hyper.  My heart doesn't race.  I'm not jittery.  I don't have loose stool (actually the reverse as I'm constipated all the time).  I'm never hot (again the reverse as I freeze all the time - sitting in my 73 degree office with three layers on).  Unfortunately finding a doctor here has been impossible.  They either don't listen or the ones I think that might won't take insurance at all (this alone makes me question their legitimacy).  


I am willing to travel within reason to find a doctor who will listen and is open minded and not reliant upon TSH results.  I live in the Charleston, West Virginia area and am wondering if anyone can recommend a doctor within say a four or five hour drive.  At this point I feel desperate and may even consider a longer drive.  

Thanks for "listening".  I hope someone will reply with some recommendations for doctors or advice.


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Posted Today, 08:28 AM

#2 jenny v

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Posted 26 May 2018 - 11:29 PM

I see several glaring issues in your labs, mainly very low vitamin D, high TSI and really high reverse T3. Your endo is an idiot for dosing you off of TSH alone, you need a T3 med to help lower the rT3 and bring up your Free T3 a bit. How much D are you supplementing with? Your iron and B12 levels could use supplementing, too.

Thyroid problems since 2002
Diagnosed with Graves Disease 2002 and Hashimoto's Disease April 2012
TT on October 10, 2013
Currently on 90mg Westhroid and 50mcg Cytomel

Information exchanged on these boards should not be construed as medical advice. We ARE NOT doctors. Please seek a qualified physician to answer your questions before acting on any information found here.

#3 AandA'sMom


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Posted 11 June 2018 - 04:30 PM

I take 5000 IU of vitamin D twice a week.  I was not taking any other than what is in my multi-vitamin when the above labs were drawn.  I wanted to take the 5000 IU everyday, but my husband said he thought that would be too much.  I've not had vitamin D checked since I started taking it.  I am taking extra iron now too.  My doctor said both of these were fine, but I thought they were on the low side.  I am not taking any extra B12.

I know the endo is an idiot for dosing off of TSH alone.  She doesn't even run FT3 or RT3.  At least my PCP would do that, but then she didn't know what to do with the information.  I'm stuck, because I cannot find a doctor in my area that understands.  I'm willing to travel some but don't know where to go.  I need to know that if I travel, the doctor I go to see is going to understand, because I don't want to travel just to be told I'm fine. I did that once by going to Cleveland Clinic, because they are one of the top thyroid places in the US.  It was a total waste of time and money, because my TSH was normal.  BLAH!

I also need someone that will accept my insurance, because I don't have excess income to be able to pay for it all out of pocket. 


If anyone can recommend a doctor in the Ohio, Virginia, Kentucky area, I would greatly appreciate it.  You can send me a private message with the info if you'd like.


#4 AandA'sMom


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Posted 11 June 2018 - 04:32 PM

Oh and if I read correctly my TSI is showing I'm hyper as is my TSH, but my FT4, FT3 and RT3 are not.  How is that possible?  I somewhat understand TSH as that is not a thyroid hormone, but I do not understand TSI or really even know what that is.

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