Thyroidless and in search of new doctor and alternatives to T4 only !

[dmr2]

Hi!  
II am desperate, confused, a little irritatedand need guidance....
I have been Thyroidless for the past 24 years due to  thryoid cancer when I was 32.    I was given 2 rounds of RAI in 2 years, and have been varying doses of Synthroid ever since. I was tired back then, but not so much . I thought that was the way it was supposed to be.   At 39 I had a baby, and went through menopause at 41 years old.    Since that time,  I have been exhausted and 55 lbs heavier.
  My endo has always focused on the Synthroid and my TSH levels.  (Last labTSH was H and Free T4 L?)
He has pushed me to take calcium/ vitamin D  and meds for my osteoporosis and recently reduced my Synthroid to  .137-- even though I told him I was so tired all the time!    I asked to take Cytomel in the past, with the Synthroid, but he does not listen.    I am still very exhausted and gaining weight -although I eat less than 1000 calories a day.  I need lists for everything because I am so forgetful! I do take vitamin D and my synthroid.  I need a new Doctor and Endo that will listen and be open to T4/T3  ifthat is what I need!   I live in the Milwaukee area.  I will see an integrative  doctor this week and am hopeful, although she does not take any insurance.   I am confused about what to do next.  Help!  

[Barb135]

Yes, with a high FT4 and very low TSH, it's understandable, to a point, that your doctor would lower your thyroid med, but that "should" have been a trigger for him to order an FT3 test to find out the rest of the story.  I have little confidence in him, so you're right to be looking elsewhere.

NDH?  I assume you're referring to desiccated hormones?  I've never taken them, but there are some who can't get by on anything else.  In your case, I really don't see a need to switch completely, since you're already established on T4 med... Desiccated hormones have both T4 and T3 and you simply get what you get, whereas taking a T4 and T3 med separately allows you to adjust each one separately as needed.  Additionally, many people on desiccated hormones find that their FT4 is too low and they end up having to add a separate T4 med anyway; some also have to add a separate T3 med, as well.  I've taken mine separately for the past 7 years and it works wonderfully for me... I'd suggest that you try it and if you simply can't get by, then desiccated is always an option.

I'm really not sure what good bio-identical hormones would do you, 10 yrs post menopause... I had a hysterectomy at age 46, which was instant menopause and I did take hormones for a while afterward, but osteopenia set in, anyway.  I haven't taken any hormones (estrogen, etc) for well over 15 yrs and I've done well keeping my bone density stable without them.

One thing I've read is that vitamin K2 is very important, because that's the vitamin that helps make sure calcium gets where it's needed the most, which is the bones, not made into kidney stones, etc.

I have a bone density scan every 2 yrs.

[gimel]

Just wanted to make sure you saw the PM with doctor info.  

Also, regarding osteoporosis, my doctor did a bone scan on my hips/spine area a year and a half ago and found that I had it.  She mentioned some of the meds that you are understandably leary about.  I asked if I could work on it myself with supplements, and then come back for a followup scan in a year.  So, that is what I did.  In addition to the ones Barb mentioned, I also supplemented with DHEA, per some of the info in the link I gave you.  

Upon followup after a year, my status was much improved, and the doctor agreed with continuation of my supplements regimen.  

[dmr2]

   Barb135,

Yes, I mixed up my highs and lows as far as my FT4.   It is no wonder my endocronologist lowered my dose via his perspective---I must have been hyper (TSH)  and over medicated.   He consistanly asks me about heart palpatations---which I do no, t or ever have had.    

It will be good to get more insight with FT3, B-12, Ferratin  testing ....
You mentioned Cytomel, which I had years ago during my RAI /Thyroid scan days, what is your view of NDH?  

My osteoperosis kicked afte menopause.  I did not partake in any  HRT at the time.   I wonder there to about bioidentical HRT now,  to counter my bone loss.   I do not know how that goes 10+ years later than any menopausal symptoms.  

Yes,  love walking   and will check in to Yoga.
Thanks for your insight.

dmr2

[dmr2]

Thanks for your reply and kind words.   I have read the link you sent- and delved into a lot of info on that website.     It is so very insightful.
I will keep you posted!  Thanks,

dmr2

[Barb135]

Your FT4 is not low... 2.10 is higher than the upper reference range.  That means you're over medicated and/or you could be not converting the FT4, which is a storage hormone to Free T3, which is the thyroid hormone that's used by individual cells in the body... You need to have an FT3 test done.  

If your integrative doctor is willing to prescribe cytomel, typically, T4 meds are decreased by 25 mcg for every 5 mcg of T3 added.  Be sure to start at a very low dose of T3 med, though because T3 is much more active than T4 and it's easy to get too much very quickly...

You should not take a T3 med without first testing Free T3 levels to make sure that's what you need.

Since you have osteoporosis, are you taking calcium with the vitamin D?  I've rebuilt bone lost to osteopenia via a regimen of calcium, vitamin D, magnesium, vitamin K and exercise... always that exercise is very important.  Yoga and walking are 2 of the best.  You can google yoga on YouTube for simple poses to practice and you don't have to do anything real strenuous.

Your Ferritin level is too low.  Did your doctor recommend supplementing iron?  Both iron and vitamin D are necessary for the proper synthesis of thyroid hormones.  

You should have a vitamin B-12 test done, because B-12 deficiency can cause the most horrible fatigue/tiredness you could imagine...

[dmr2]

Last labs:
FT4 was 2.10
    Range .82-1.77
TSH was .011 , Range .82-1.77
Vitamin D 27.2, Range 32.0-100.0

Did not test for Vitamin B12 or Ferratin.  I told him I would not take meds for osteoperosis because I read about the side effects

[Barb135]

What were your actual TSH and FT4 levels with reference ranges?  

What kind of meds are you taking for osteoporosis?  Those can come with their own side effects...

What's your actual vitamin D level?  Have you been tested for vitamin B-12 and ferritin?

[gimel]

You have been inadequately tested and treated for a long time.  A good thyroid doctor will treat a hypo patient clinically by testing and adjusting the biologically active thyroid hormones, Free T4 and Free T3 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results and especially not TSH results.  Many members say that symptom relief required Free T4 at the middle of its range, at minimum, and Free T3 in the upper third of its range, or as necessary to relieve symptoms.  You can get some good insight from this link written by a good thyroid doctor.  

http://www.hormonerestoration.com/Thyroid.html

It is good that the doctor at least got you to take Vitamin D.  Hypo patients are frequently too low in the ranges for Vitamin D, B12 and ferritin.  Deficiency in either will cause symptoms.  Low D or low ferritin can adversely affect metabolism of thyroid hormone.  D needs to be about 55-60. B12 in the upper part of its range, and ferritin should be about 70 minimum.

So you do need to find a good thyroid doctor that will treat clinically, as described.  I have the name of a doctor near Milwaukee that was recommended by a Forum member.  I am sending the info by PM.  to access, just click on your name and then from your personal page, click on messages.