This is a very long story so I'm going to quickly sum it up.
I was fine on Armour until 6 months ago when my TSH went too low and I was told to go off the med. I did and then in December my TSH went to a low normal (.38) I was pushed away by everyone even though I was having a hard to breathing, racing heart, all hyper symptoms.
My TSH is now a tiny bit higher but never goes higher than 1.0 so I am still feeling a little hyper. HOWEVER.....Now I'm having massive kidney pain (trace blood in urine) and NO ONE will do anything. I have one good Dr who is helping me but she's hard to get into to see because she's a cardiologist. I'm tired, gaining weight and all kinds of hypo symptoms to.
My lastest lab results.
What does this mean? I cant take thyroid replacement because my TSH is already too low and believe me I'm feeling the effects of it. Is this a pitituary disorder? ANYONE please... thank you so much
The following user gives a hug of support to AnnMarie36: marcella1935 (12-30-2010)
Until others who know more about Hashi's than I do respond I'll give you my thoughts. You are HYPO and need medication. An FT4 of .65 regardless of lab ranges is not high enough. You were on Armour (which suppresses TSH) so your low TSH while medicated is not an inidcator of your thyroid status. They should have been using your FT4 and FT3 levels as an indicator of your hypo/hyper status, not TSH. I don't know how long it normally takes the pituitary gland to kick back in and start raising tsh after one stops Armour but it may be enough time hasn't passed (I think it's probably been long enough though) or it may be you have secondary hypothyroidism and your pituitary gland just isn't able to send a strong enough signal to your thyroid gland telling it to make more thryoid hormone (if you even have a gland left due to hashi's). Thus, your need for medication. Even if you did go a little hyper at some point, the solution is not to stop your medication - it would be to reduce it. Maybe Armour is not the right med for you? I don't know. Mkgbrook on this board has Hashi's and Secondary Hypothyroidism so maybe she'll be a good resource.
Thank you so much for responding. After reading your post I realized I should add a few things. I went off Armour per orders of my Dr because everything read normal, even my antibodies. When my TSH level dropped it was in December and again it was .38 and believe me I felt it and even dropped 20lbs in 2 weeks. It was then they first took my PTH which at that time was 9.0 (range: 14-74) and my calcium went to 10.8 (normal high). My calcium is normal right now but now my PTH is 5.1, so its dropping more over time.
I guess I'm just confused by my TSH being so low normal right now (.95) and my T4Free being low (.66). What does this mean? I've NEVER heard of this. I've noticed when my TSH starts coming up the tightness in my throat and heart rate both start going down and it feels soooo much better but when its down like this I cant breath. Sorry so confusing but I'm lost here. I'm feeling depressed and the weight gain isnt helping that at all. THANK YOU all.
Watching TSH is not the proper way to dose Armour. The T3 that it contains suppresses TSH, making it a moot measure of the right dose for you. I take 2 grains daily, and my own TSH has never been higher than .02 in over 4 years, I'm not hyper at all, and my MD is fine with things as they are.
The way to dose Armour is to watch the free levels of the actual thyroid hormones, T4 and T3. TSH is a pituitary hormone, and it's only an indirect - and often inaccurate - indication of where the thyroid hormone levels are. Your low FT4 is what your MD should be going by, and that's equally as important as your free T3 level, which apparently hasn't even been tested??? Bad move. Makes me wonder if your MD knows Armour as well as he should.
There are absolutely no symptoms associated with TSH levels; it all boils down to low or high T4/T3 levels. Low (or high) FT4/FT3 levels are what creates symptoms. The fact that your FT4 is abysmally low tells me that you should be taking more Armour than you're getting, and someone in the know should also be checking those FT3 levels.
Never, ever simply accept the MD's word for it that levels are "normal" without getting your own copy of the labs and checking to make sure you're being given accurate information. You have your own particular "normal", and it shouldn't be gauged against every single person tested within that lab range.
Hypo symptoms can feel for all the world like hyper ones, and vice versa. Your problems could as easily be from undermedication as over-. If you want to know where you stand, insist on FT4 and FT3 tests. Have the blood drawn before you take that day's dose for the most accuracy. If those levels are not above 50% of the lab's reference range, you need more Armour not less... despite wherever TSH falls. It should be ignored altogether.
Thank you. As I've said though I havent been on any meds for 6 months. I was told to go off of it because my TSH went to .38 and I was having major hyper symptoms. I know TSH doesnt determine anything but with it being so low they CANT put me on anything because it will push my TSH even lower making me hyper. This is why I'm lost.
Have you tried any other thyroid med? I had the same reaction to Synthroid, the first med I was given. It suppressed my TSH and raised my FTs above range. (This is certifiable "hyper"... not just feeling hyper, which is different.) The endo who prescribed it told me to stop taking it and said, "Wait until you get sicker" before trying it again. That certainly wasn't an option for me, so I went to an MD whom I knew would keep trying till we found something that worked. The next med we tried, Armour, did work very well without overmedicating me.
Maybe Armour isn't right for you like Synthroid wasn't right for me.
Again, I'M NOT on any thyroid med right now and havent been for 6 months. Thats why this is so confusing for me right now. I went off it per order of my Dr because everything had leveled out. Then in December my TSH dropped to .38 but now its .75 and my FT4 is .66 which shows hypo with a low TSH. PTH is 5.1..... any suggestions? Again, I'm NOT on any meds right now.
Thank you all
PS. 4 years ago when I was hypo I tried Synthroid and Levoxyl and neither one agreed with me.
Last edited by AnnMarie36; 04-07-2008 at 10:44 AM.
Thank you, I hope someone has some ideas. This thing is even making my heart beat all over the place. One day its fast, today its very slow. I'm seeing a cardiologist who is helping me more than anyone but this is out of her field. Its frustrating when you know your thyroid is causing all this but the Drs just look at what the problem is at the time. They never try to get to the source.
Any suggestions? What kind of tests should they run?
the pth test is a test for parathyroid hormone.It looks like you can have a normal pth level and still have a parathyroid tumor,which would cause the heart palps. Do you have a high end calcium level? look at the website www.parathyroid.com/parathyroid-disease.html .It shows the symptoms list and the test that are needed. hope this helps.
Your pituitary and adrenal function need to be thoroughly tested especially if your T3 is out of bounds with your T4:
Now you have Hashimoto's right? If you haven't been tested for Hashimoto's you should be. Tests:[TPOAb and TGAb] Antibody attack and binding can interfere with pituitary operation as well. If you haven't had an MRI that should be asked for as well. This will determine if there is a pituitary tumor involved. You don't need to worry about that.. blood work will tell you if this is a possibility. The pituitaries can also just die.. surgery, excessive blood loss and many other things can affect them. Over all you need the following tests run for a thorough evaluation of your thyroid function first.
TSH 3rd Gen
FT3 YOU MUST GET ONE OF THESE RUN. It may not be the pituitary gland.. but your adrenals in particular adrenal insufficiency causing too little cortisol and unchecked conversion of T4 to T3. In cases where T3 levels are much higher than T4 levels. A T3 supplement is not a good treatment regime in these cases because it guarantees hyperT states.
Now if the Ft3 and Ft4 levels are low.. you are looking at pituitary malfunction most likely and need to see if the adrenals are also effected. What Tests?
TSH - pituitary call to the thyroid for more T4 production... well we assume this is not working given your statement of TSH trend.
ACTH - pituitary call to the adrenals for cortisol production. This test must be drawn at 8 am and is fasting.
Blood cortisol, and a 24 hour cortisol rhythm test (saliva or urine). You need a rhythm and a blood test.. they support each other or can identify adrenal fatigue.
DHEA Sulfate (blood)
Addison's antibodies (ACA) for autoimmune destruction of the gland.
other tests of note are B12, Vit D, Ferritin, and Magnesium (Mg). Potassium and Calcium should be followed as well. You need a new MD that doesn't cut you loose for 6 months to a year at a time! Something is going on and levels adjust in 4-6 weeks MAXIMUM. That is basic pharmokinetic interaction. *grumble* Getting mad at a new incompetent MD rearing his head.
If we learn by our mistakes, I am working on one hell of an education.
Everything else was normal as well. Calcium, Vit D, B12, Magnesium. Believe me I've been tested for everything. They even did an ultrasound on my thyroid and its normal with no lumps or anything. I was diagnosed 5 years ago with hashimoto's so I dont understand how there is NOTHING??? I also have a cyst on my ovary they are watching because it has a small nodule on it (I'm now going to a different hospital and trust the new Dr's) I still have the tightness in my throat with chest pressure which makes it hard to breath and some days its worse than others. That is the one thing that baffles the Dr's the most. They have no idea what is causing it. It depends on what I eat but then again sometimes not... calcium makes it MUCH worse. Weird I know but I'm so lost. There was a question of Sarcoidosis but thats up in there air too.
Any suggestions? Thanks so much. I will get back to you when I get new test results too.
Last edited by AnnMarie36; 07-31-2008 at 09:22 PM.
Just in case anyone was curious this is what I found.
A suppressed TSH with a low or low-normal free T4 and free T3
indicates hypothyroidism due to a pituitary problem.
An elevated TSH indicates hypothyroidism due to a thyroid problem.
So it's looking like a Pituitary issue. Now what?
We need a list of possible pituitary problems?
And does Hashi's fit into this? I'm just starting to ask about that. Just read that adequate medication can PREVENT or SLOW the development of Hashi's, with which there would be antibodies. Different from having an allergy to own bacteria I'm sure.