TSH accuracy

[Seraph909]

What could cause the TSH to be low (0.009) T3 & T4 normal and I feel fine?  Doctors lowered Synthroid from 100ml to 75 ml, I felt terrible, hair falling out, hypertension, dry skin and nails, constipation, gained sudden 9 pounds, and muscle cramps.  I 'self-medicated' back to 100ml Synthroid and now after 6 weeks am feeling much better.  Doctor say no such thing as TSH being that low and be "normal" for me.   Does anyone treat 'Symptoms', not just numbers?

[flyingfool]

Thanks,

My Mom is working with a fantasic Dr for her thyroid.  It would be 100% cost out of pocket and about 400 miles away.  So it is not my first choice.  My mom is going to ask her Dr if he knows someone else who treats like he does that may be closer to me.

[Seraph909]

I don't know if it would work for you but I offered to my doctor that I would sign a statement saying that I take full responsibility for my physical health due to the requested medication.  If he/she only is worried about liability then this should relieve their responsibility and allow you to received the strength of thyroid support that you know you need.  If that didn't work then I would get another doctor.  Often Natural pathic or Wholistic doctors are more willing to listen to what the physical body is saying.  That is my intention if my doctor refuses to let me continue on my present level.  Bottom line is that at this point in time doctors do not really know How the thyroid and endocrine system actually works.  

[flyingfool]

Endo my wife and I were just at said something about increase I believe due to the T3 dosage raises "osteocites".  Which I inferred ***** out the calcium or whatever to make bones weaker.

This is the first I've ever heard of such a thing.

Endo going on and on about bone loss, and heart problems (palps) due to her being on T3 and her TSH suppresse to almost immeasureable/undetectable.  And loss of sleep or quality sleep.

Somwhat valid concerns EXCEPT for the FACT that my wife has NONE as in zero of those hyper symptoms other than lack of quality sleep which she had when known to be VERy Hypo.  

we're not at all happy with this Dr explaination and reduction of T3 dosage.  We are in the process of developing a long written response with factual medical and credible evidence to support "our" case for the endo's consideration.

But I'd bet $500 the endo will not even read the letter.  I'm really in a catch 22 situation.  If I really pile on the supporting documentation to boost my argument, the endo would be LESS likely to read it. But if I don't put enough credible research and studys attached to it, the endo won't be swayed from her TSH anti T3 bias.

[Totie]

I hope the doctor listens to you...I wish they would treat by symptoms not just the TSH level.

I have been on thyroid medications for over 20yrs now. Had a TT. I know my TSH is suppressed but all my lab work and vitals are all good and healthy...This new doctor is okay with my TSH being suppressed, however, my Endo (no longer my Endo-she moved) did not like it being suppressed and was worried I would get heart issues AND that my family would be very upset with her if anything happened. I can see her point of view in protecting herself. This was back in Nov 2013, however, I am still on the same dosage but this new PCP that I have agreed that if I am feeling great than don't change anything.

I wish they were all like him....

[Seraph909]

Thanks, I do take 5,000 Vit D3 every day but didn't know about DHEA, I'll check out your suggested web site.

[Seraph909]

Yes, I agree.  Thanks for the support.

[Barb135]

"Of course they are the doctors and should know all about their subject and I should not have to be researching it on the Internet. :( "  That's how we all feel about it; we shouldn't have to be here trying to find information and support like we are. Unfortunately, doctors are taught in med school that TSH is the end all, be all of thyroid testing and that higher levels of thyroid hormones are bad.  They'd rather keep us sick than think outside the box.

[gimel]

barb has given you good info.  I just happened to think that you might make some use of this link, especially the following.

"Thyroid hormone does not cause bone loss, it simply increases metabolism and therefore the rate of the current bone formation or loss. Most older women are losing bone due to their combined sex steroid, DHEA, Vitamin D, and growth hormone deficiencies. The solution is not life-long hypothyroidism,  but the correction of their other deficiencies."

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

[Seraph909]

Well, I am going to 'play' their game and get the bone density test and let the cardiologist check my heart.  My endocrinologist seemed very worried about his personal liability if I had problems, as did my Primary Care doctor, so I think something has alerted Kaiser doctors about their liability.  No one ever worried too much about my TSH low, and my high dose (according to them) medication.  I know if I yell long enough and loud enough they will give me what I believe I need.  Of course they are the doctors and should know all about their subject and I should not have to be researching it on the Internet. :(

[Barb135]

TSH has nothing to do with heart issue or bone loss.  TSH is simply a hormone that stimulates the thyroid to make more hormones.  When the thyroid has burned out and no longer produces any hormones, what difference does TSH make?  Absolutely none.

If your FT3 and FT4 are normal and you feel good, you're not on "high dose" thyroid... AND on top of that, the bone loss is simply increased metabolism; not a direct result of taking the thyroid hormones.

[Seraph909]

You are right and we must fight to keep ourselves healthy in spite of doctor opinion.  I had to go to a new doctor who yelled at me, threatened me and said I would never get her to write a prescription for the thyroid med I knew I needed.  I told my adult children that the doctors were trying to kill me.  I then drove a long way to see my former endocrinologist who was aware of the other doctor's opinion.  My two children went with me and the doctor discussed things very calmly, voiced his concerns and agreed to let me stay "temporarily" on the thyroid replacement level I self-medicated.  Now after five weeks I am feeling way better, am scheduled for an exam by a cardiologist (doctors worry about heart damage on high dose thyroid) and will have a bone density test (due to bone damage risk from high does thyroid).  But one wonders why when a patient feels good (at 83 years old) do they have to send the patient into physical crisis because of some lab test.  The endocrinologist said he didn't know of any people who have a TSH like mine, being healthy and it being normal for them.  He is a nice older man, I've seen him for nearly 10 years, so WHAT THE HECK?  

[Barb135]

It's not the least unusual to see suppressed TSH with normal T3 and T4 levels, when one is on a thyroid hormone replacement.  My TSH drives doctors crazy, because it stays at < 0.01.  It's been there ever since I started on thyroid hormones and nothing they do brings it up.

Doctors are no longer trained to treat symptoms; they are trained to treat the lab reports and to make matters worse, they're trained to believe that TSH is the only lab value they have to look at.