After being treated (and saved) by Dr. Stephen Langer in Berkeley, I had to get a different doctor after moving to Vancouver Island five years ago. He has been pretty good - working with me, agreeing to keep me on desiccated thyroid (which is the only kind that helps with my Hashimoto's), and asking for Free T3 and T4 tests instead of just TSH. He even agreed to have my progesterone level checked which turned out to be very low and I am on Prometrium (by my request) for that.

Now, he said he has "heard" that low TSH levels mean I am going into hyperthyroidism, regardless of my Free T3 and T4 levels, because I am "on dessicated thyroid." This is driving me insane.

My last test results:

Free T4 = 11.9 (10.5 - 20.0 is normal)
Free T3 = 5.5 ( 3.5 - 6.5 is normal)
TSH = 0.01 (0.38 to 5.5 is normal - supposedly)

He told me to lower my thyroid to 90 MG from my usual 120 MG. I did this for three weeks until many of my hypothyroid symptoms began returning. I was so cold that I thought I was sick with chills. I took my temperature for several days. It ranged betweeen 96.3 F to 97.2 F! I was freezing, I was tired, and I was getting depressed.

There is NO WAY I am hyperthyroid. I still have symptoms of hypothyroidism. I called his office and told them I was going back on 120 MG, which I did. He wanted another TSH test, which I did. Now he wants me to come in and see him again. I KNOW this will be another battle. I am NOT going to lower my dosage again. My T4 levels are even on the low end of normal.

TSH is NOT thyroid levels. What if my hypothalamus or my pituitary gland aren't in top shape? Those are the glands that have to do with TSH levels. I've done this battle for so many years, I swear seeing doctors is the most stressful thing in my life.

Sorry for the rant and thanks for listening.

BUT, Isn't Hashi's a total or near total version of the most extreme for a hypothyroid condition? I'd gone from definite Hypo[damaged] to definite Hashis [essentially non-functioning thyroid] When I recently had auto-immune tyroid testing the numbers were high, but not outrageous...probably modified by IVIG infusions for other issues.
Because in my case, the thyroid appeared to be in control thru synthroid, with only one 'episode' right after the auto-immune onset, and the tests were fairly basic [tho resulted in a dosage change...upwards] No professional ever put the two-and-two together... Hindsight is wonderful-sort of.

Only things I can think of...and these options are both hard: first, find another doc and get a second opinion. Second, challenge this doc about WHY he feels you have gone from one extreme to the other Ask him for facts for his opinion -gut feelings here or biases against your taking the dessicated route should NOT be the 'factors' for decision making. If it takes an auto-immune thyroid panel to prove one point or the other, at least you have 'back up' paperwork to the pros and cons. Another possible tack would be to ask your OTHER docs about this quandry. Sometimes different minds and/or peer pressure can do wonders [has worked for me at times, not all tho]

While we all would like to take the lowest doses of everything we take...at times we have to take more to get on with life. Asking questions is a cheap alternative to being sick! This doc could possibly be doing harm for his opinions? That should be questioned and thoroughly at this point. It's more important to protect yourself and prevent further damages and backslides.

I definitely wish I could suggest more/better options. None are fun. But, WE have to work the 'systems' as best we can to our advantage -not to archaic philosophies that change daily to our detriment. I sure wish that I was a fly on the wall during those visits tho....Hope this helps? - j

You bring up good points. Thank you for your insight. If I have enough thyroid hormone in my body, shouldn't I have low levels of TSH?

I wish it wasn't so difficult to find a good doctor here in Canada - many doctors are not accepting new patients, and almost all inexplicably don't want to prescribe desiccated thyroid. I am fortunate that my doctor has been agreeable to it - I explained that I was on synthetics for eight years and my symptoms increased as my health went down. He also ordered progesterone tests when I asked, and it turned out my levels were low, and he agreed to prescribe Prometrium by my request. He's a good doctor - I don't know what's going through his mind with this now, but I'll find out during my appointment Thursday. I will order Armour over the internet if I have to, and will self-medicate. I won't go down and I will fight.

When my doctor temporarily left for six months (to be married) a year ago, his replacement simply refused to refill desiccated prescriptions because of Mad Cow Disease. Simply refused. It caused a panic for me. Never mind that desiccated thyroid is made from pigs, she wouldn't listen to reason... *sigh*

but I have been up and down the synthroid scales! In 'hindsight' that my thyroid acted up less than 6 months after my Neuropathy hospitalized me [altho shortly] It had taken a year to diagnose that the PN was auto-immune. Now 3+ years later finding that my 'scarred' thyroid from films and biopsy taken 10 years ago [these records were almost destroyed-I found that out when getting films for other issues 3 years ago & I rescued them!] really showed signs of damage. So that 'flare-up' right after PN onset.. I really wonder about - basic t-3&4 tests were taken, no Auto-I tests as I'd not yet been diagnosed in that quarter - since that 3yr old flare of the thyroid the synthroid was upped a good deal, tho not to the top of the scale..That no one thought to check the auto-immune aspects of the thyroid until a few months ago, well I do WONDER! Ironically, I seem to recall that no Auto-I thyroid tests were done for the immune tests that were done to diagnose my auto-immune-nesses. Drat it! I would dearly love some connections and one BIG AAH-HA Moment!?

Since I am and have been on IVIG for a couple of years plus now, the Thyroid immune #'s while high [upper hundreds, but not the thousands I've read about] are not NEAR what others have reported elsewhere. I suppose that should be a relief or that either real numbers are masked or infections are under 'control' from the therapy or meds.

I guess, that maybe, maybe? Your new doc wants to lower the dose to 'see what happens'? If so, I can sort of understand it...but YOU are the one who's gotta LIVE with IT! So, I would ask the questions, state your strong reservations [much more thoroughly, based on past experiences] And essentiall 'SELL' your views and see if you both can come to some sort of compromise? A GOOD conservative doc usually wants to 'test again' by his/her own standards and SEE what's what. Beating heads usually doesn't work? Asking, informing/fleshing out your 'past' so to speak then working out a compromise that satisfies you and he/she would probably be a way of opening doors to info about what can and doesn't work for some thyroid folks.

I give you snippets of my own history for you to know that we all are different, the road to thyroid issues is well 'muzzy' and overlaps with a lot of other stuff going on in US. We do have to listen and learn about ourselves and advocate FOR ourselves with what knowledge we can sift thru on the 'net. No we did NOT go thru medical school...Nor do I, possibly you wish to as well. But, constantly reminding the docs that YOU happen to be the ONE that happens to be attached to THIS problem. Well, that gentle reminder seems to get docs to know I am seriouosly unhappy about the 'attachment'! Keeping cool, factual and detached about those pesky 'objective' symptoms. Trying to do the same about the 'subjective' aspects as well...running down the 'lists', is the best way I've found to get a doc to want to work FOR and WITH me on this all.

Docs ask you: How are you doing? - Reply: Ok, considering [To self - feel like a pile of semi-dehydrated cow poo? Why'd you ask silly person?] Where's all that education? DUH!

's good person....and Good Luck? Sounds like you are going to need it? Wish I could offer more...I am not familiar with how Canada's systems work. I feel as if I'm still learning how to use my own insurance system to advantage. Keep me/us up to date! - j

Are you talking about armour as a dessicated thyroid drug? Your T4 results seem so low. But your TSH seems suppressed so that is why the docs would go into a TSH panic. My TSH is lower than yours but I have had pituitary surgery so finally they leave me alone and just judge me (the better docs - some are still not so bright) on the free T3 and free T4. TSH basically measures what the pituitary is telling the thyriod and you are right, if you are not sure if your pituitary is ok, then it is not a good test! And with your other tests, especially your T4 at the lower end, your doc *should* run pituitary function tests to see what else is amiss but alas, they tend to ignore the pituitary. After all, it is just the oh.. master gland? I had docs using my TSH for years even with a known pituitary tumor and changing my thyroid meds all the time. Funny how I never felt good.
Oh and I needed a T3 drug as pituitary people tend not to convert T4 onto T3 well so need the T3 directly that the body uses. I have no thyroid now due to tumors and all (I am an endocrine nightmare) and take both a T4 and T3 drug to feel as best I can.

Oh, you guys are great!

What I'm taking is not called Armour, since here in Canada desiccated thyroid is made (I believe, at the moment anyway) by Parke-Davis. Since it contains both T3 and T4, it makes sense that the T4-only synthetics didn't help me one bit, if indeed my pituitary gland is not up to par.

And if my doctor wants to lower my dosage again <shudder> to compare TSH, I'm going to ask that we increase it to compare TSH and T4 results after two months. That makes more sense, since my T4 is on the low end!

And if he refuses, I will ask for pituitary gland function tests!

You are both brilliant. Thank you so much. I'll let you know what happens on Thursday.

Is that TESTS measure what's there floating around to be used...or not. The ways of finding out what might actually is being used are invasive-meaning biopsies. The tests, their own foibles and viabilities are widely open to interpretation. Soo, It's up to US to clearly state dosage X =cause y, effect z, versus dosage A= cause b, effect c..and so on.
The whole thing is scary when you mix in the particular biases of any given doc. That's where I find that here in the US searching out their backgrounds...training, WHO they've trained under etc can give you hints sometimes or clues at to the Where They Are Coming From is. I've found that for some the more active they are on national/regional and areas specialty boards the more curious they are OR are selling their own philosphies very strongly. But if you can get a glimmer of their opinions thru papers they've worked on in the past it sure helps to see the where's of their approaches. Not always tho. Some very good docs are total sleepers in terms of research or clinical involvements...they just DO.
Trick is mostly to ask them to essentially DO what you want by asking them WHY NOT? And if not, what is the fundamental and further technical rationale for NOT? You usually don't have to get that assertive tho, should it come to that, it's time for second, third and multiple other outside opinions to put the peer pressure on to Do what needs to be done. THEN be sure it was THEIR idea?
Honestly in all -in all -it comes down to a lucky or unlucky roll of the dice, so to speak. Or how you play your 'patient' role [cards] to come out ahead in the whole process.
These days that old 'Trust me!' line goes no where [except out the door?] ...facts, clear facts, plus tests are what help me make decisions that get me thru the days.
Rumpled is right tho that in checking the parathyroid and pituitary further while maintaining status quo mite be interesting? That could be a persuader? Tho mite mean even more testing. Your choices and I sure hope you get lucky - j

It's funny you would post this because I was just reading how the thyroid hormone can be blocked at the tissue level. So, even if there is a "normal" amount in the blood, it isn't necessarily getting to the cells.

I also pulled up my May 2006 test results:

TSH 0.02 (0.38 to 5.5 is normal)
Free T4 = 9.7 (10.5 to 20 is normal)
(no Free T3)

I don't see why the sudden alarm in my doctor's attitude because of the difference from TSH being 0.02 or 0.01. (I was on the same dosage of desiccated with the results from this year and last.)

Digging even further back to 1996, when I was first diagnosed with just hypothryoidism, my TSH was 15.2. After two months and 25 mg. of Synthroid, my TSH was 8.0. Two months after that, and on 50 mg. of Synthroid, my TSH was 0.1.

Dosage was brought back down to 25 mg, and TSH was 5.6. Back up to 50 mg. (all two months apart) my TSH was 12.0.

Wild swinging, anyone? Wish someone then had known that was a symptom of Hashimoto's.

Thanks again for the thoughts... still preparing for battle...

synthroid are mini compared to mine.... I've been on the lowest 50 to a hi of 125 or 150, don't recall as it was a while ago....I'd gone down to 88, had a 'flare up' and am now in the low hundreds...for a while.

Has anyone done a doppler of your thyroid yet? I ask as it's now often an in-house, non-invasive look at what the 'gland' is like, rather than what it should be. [Doppler is a no-brainer exam, truly] Going on to the parathyroid, I gather is a different, less easy animal to examine - sigh. Worth asking a few 'sillly questions' about tho...mite get the docs' gray matter functioning and actually do something to make both you and he/she happy.

I too have to go back over some old and very old tests to see if any auto-immune thyroid testing was done [and, some of it as far back as yours! Congrats to you!] I think it was not done at all consistently until this spring...often simply a TSH and occasionally a T3-T4 thrown in for luck...but not regularly. Somehow think it WILL be a 'regular' now?

I've found that straight facts, about doses/meds and how they work or not, and what is changing now is the bestest, most honest way to 'present' your case... Remember you can cry and have a tantrum while driving home from that appointment for the good or bad then...Goodness Gracious! Don't want to become 'LABELED' as emotional, now, do we? - j

No, I haven't had a doppler or ultrasound or anything like that done. It sounds like a good idea, though. My thyroid has never been swollen (that you can see). Because I look healthy, I must be healthy. <-insert sarcasm here.

I'm dropping my daughter off at a friend's house while I go to my appointment. When I have to bring her along, she and the doctor spend half of my 20 minutes chatting, and I want him all to myself. (He's her doctor too, but this is my appointment.) No distractions.

My husband is telling me to chill... my doctor has been very good, and he listens, but I've had so many horrible doctors that I automatically stress.

Will ask about the doppler, too, and I'm taking my past tests with the wacky TSH levels.

When I get dressed for my appointment, I'm going to play that music from Lord of the Rings at the part where Aragorn suits up for the Battle of Helm's Deep.