frustrated

[ymlaura]

I had RAI 20 years ago for Graves disease. I had been on levoxyl very successfully for years. Later added armour and still everything was great. Never and issue. Last year I had my appendix out and 6 months later I was hyperthyroid. Just including the appendectomy info, don't know if it is relevant. Also, am 49 entering menopause.

Anyway...........doc took me off meds............had major hypo symptoms including depression. Started me back on 125 and I feel ok, not great.

I am constantly cold from the inside out......... hair falling out, sluggish, slight swelling of the ankles and face, no libido (all of which I know could be menopause also), slowly gaining weight with consistent exercise. But for so many years I was fine :(

The doctor still insists I am hyperthyroid and lowered my dose to 112. I swear I feel hypo. My levels are:

January

TSH .01
T4Free 1.4 (range .08 - 1.8)

September

TSH .01
T4Free 1.2 (same ref)

June

TSH <.01
T4Free 1.2 (same ref)

May

TSH .01
T4Free 1.5
T3Free 283 (range 230-420)

She doesn't want to see me again for 3 - 4 months. I am wondering if I should get another opinion. She keeps saying my TSH level insists I am hyper and it just needs to get kick started because I had been hyper for so long. (When in fact, I think I may have only been hyper for 6 months or so) Couldn't my pituitary not be working correctly.

Any suggestions?

[nasdaqphil]

You do not appear hyper to me. My first question would be why your TSH is so low given your "normal" components, T3 & 4.

Assuming you have no thyroid, what would cause your pituitary to think you have too much hormone when you really don't?

The first thing that comes to mind is a TSH secreting pit tumor but I have no idea how menopause plays into the equation. I am sure menopause is probably playing a big roll.

[Andros]

I had RAI 20 years ago for Graves disease. I had been on levoxyl very successfully for years. Later added armour and still everything was great. Never and issue. Last year I had my appendix out and 6 months later I was hyperthyroid. Just including the appendectomy info, don't know if it is relevant. Also, am 49 entering menopause.

Anyway...........doc took me off meds............had major hypo symptoms including depression. Started me back on 125 and I feel ok, not great.

I am constantly cold from the inside out......... hair falling out, sluggish, slight swelling of the ankles and face, no libido (all of which I know could be menopause also), slowly gaining weight with consistent exercise. But for so many years I was fine :(

The doctor still insists I am hyperthyroid and lowered my dose to 112. I swear I feel hypo. My levels are:

January

TSH .01
T4Free 1.4 (range .08 - 1.8)

September

TSH .01
T4Free 1.2 (same ref)

June

TSH <.01
T4Free 1.2 (same ref)

May

TSH .01
T4Free 1.5
T3Free 283 (range 230-420)

She doesn't want to see me again for 3 - 4 months. I am wondering if I should get another opinion. She keeps saying my TSH level insists I am hyper and it just needs to get kick started because I had been hyper for so long. (When in fact, I think I may have only been hyper for 6 months or so) Couldn't my pituitary not be working correctly.

Any suggestions?

Hi and welcome to the board. No way. The "Frees" should be mid-range or a bit higher; especially the FT3 which is your energy source.

What thyroxine are you on and how much? I personally believe you are undermedicated.

Sorry about the appendix thing. That combined w/ anesthetic and antibiotics would definitely throw your body into dive metabolically speaking.

Just because TSH is low does not necessarily mean hyper; especially when the FT3 and FT4 are mid-range or a bit higher. Now, if the Frees were at the very top of the range or over; I would say yes, hyper. But you are not.

Hope my input helps. You may have to find a doc who understands this stuff better.

[nasdaqphil]

Andros, how does TSH come into play after RAI? Can it even be used as a reference point any longer with any accuracy or does RAI have no bearing on TSH?

My question is why is her TSH so low given her low side of normal labs?

[ymlaura]

Thank you all for your responses. I wanted to cry...to know that I am not crazy or a baby. She just lowered my dose of Levothyroxine to 112 from 125
She doesn't want to see me again for 3-4 months :(

My visit before this, I asked her about the pituitary and she said if the TSH didn't come up she would test it but that Pituitary problems were rare. This time she didn't even mention it, and I was so depressed about what she was doing, I didn't push it. I just left.

My daughter was just diagnosed with Graves and goes to a different endo. Maybe I do need to get a second opinion. I probably should request another T3Free test also? It has been a while since I had that one.

Thank you very much.

[Andros]

Andros, how does TSH come into play after RAI? Can it even be used as a reference point any longer with any accuracy or does RAI have no bearing on TSH?

My question is why is her TSH so low given her low side of normal labs?



Yep; your instincts are right on. No thyroid so therefore the Pit eventually shuts down; that is provided the patient is on thyroxine.

The pituitary gland emits signals to the thyroid gland via TSH, or thyroid stimulating hormone. Thyroid stimulating hormone is the hormone that makes the thyroid gland produce the right amount of thyroid hormone. The pituitary and the thyroid receive feedback signals from one another and are delicately balanced.


See, no feedback to the pituitary gland and vice versa. And this is because the patient is on thyroxine. The Pituary gland can now take a vacation for all is seemingly well. If the patient was off the thyroxine replacement, the pituitary would wake up and we would see the TSH rise. And fast too because there is no thyroid gland to send a signal to the pituitary to stop.

This is a very very common phenomenon for those of us who no longer have a thyroid gland.

[Lovlkn]

Andros, how does TSH come into play after RAI? Can it even be used as a reference point any longer with any accuracy or does RAI have no bearing on TSH?

My question is why is her TSH so low given her low side of normal labs?

Antibodies can keep the TSH low with normal or mid range FT's

yamlaura-

Your FT-4 is low - the doc should realize this but they don't. If you still have your 125's keep taking them.

You need to find a different doctor - my doctor pulled the same crap on me and I went and found another doctor who isn't as focused on TSH - keep looking until you find one who will treat you on FT-4 and FT-3 , they are out there - you just need to look.

[Andros]

Antibodies can keep the TSH low with normal or mid range FT's

yamlaura-

Your FT-4 is low - the doc should realize this but they don't. If you still have your 125's keep taking them.

You need to find a different doctor - my doctor pulled the same crap on me and I went and found another doctor who isn't as focused on TSH - keep looking until you find one who will treat you on FT-4 and FT-3 , they are out there - you just need to look.

That is so true, there are antibodies and autoantibodies to the TSH receptors. In depth testing is needed.