My Doctor, TSH Levels, and Frustration

[SwampWitch]

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.

[dahlek]

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

[SwampWitch]

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*

[dahlek]

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!

:hug: :hug: '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

[rumpled]

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.

[SwampWitch]

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.

[dahlek]

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

[SwampWitch]

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...

[dahlek]

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

[SwampWitch]

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. :) :mf_swordfight:

[dahlek]

It is YOUR appointment, it should be 'professional' quality time between you and your doc.
Doppler I had recently was a no-brainer kind of thing, Done in-office and well, DONE! It was a more 'fussy' procedure the decade plus ago when I'd had my last one.

DO do some homework about any other meds you are taking tho...some things, such as synthroid do not like to be taken within 2+ hours of other meds. That is in the fine print called 'prescribing information' ...if no connection or problem is 'found' call each med manufacturer and ask. That's what those 800 numbers are for! I've found the folks who answer to usually be very helpful - but expect to spend at least 20 minutes with each uninteruppted. They do track all this stuff and report to the FDA who tracks it all from all over. If we relied on docs to 'report' our problems, we would have no meds removed from the markets due to 'adverse reactions'.. You can also be kept up-to-date on any key med interactions that crop up-either thru the med-web sites or the FDA.

Pity we can't get revenge on the horrible docs. Wish WE the patients could do some sort of acknowledgement for the good ones! Nite and day the differences!

I am imagining all kinds of apparel one might wear when going to a doc's ...thing is, you gotta 'undress' on occasion and re-dressing could be awkward without your squire! - j

[SwampWitch]

I survived the doctor appointment, as anticipated, and (after seeing my panicked face ha ha) he said I don't have to lower my thyroid levels. :)

I told him I've been having pain in my right shoulder (old injury) and my left shoulder, and right leg. Also, I still feel very unwell. We talked about doing a pituitary function test and other hormone tests, and then he said, "You know what? I'd like to talk to you about Chinese medicine."

He explained how Western medicine tends to pinpoint problems and treat those specifically, where Chinese medicine take a "whole body" approach.

He said I need to get my heat back up. (I think he said I don't have enough Chi but I could have gotten it backwards.) Although I swim and walk a lot, he said that I need aerobics to bring my core heat back up. (I'm always freezing, and it doesn't help that I live by the Pacific Ocean and it's always cold here.) And he said we need to get me feeling well. Although I don't feel good enough to do aerobics, he said it's a vicious cycle and if I push myself to do a little bit at a time, everything should start improving.

I like this approach. Beats the heck out of throwing some pills at the problems. Here's what he prescribed.

Avoid cold foods: raw, dairy, sweet, sugar, cold
Encourage heat: cooked foods, hot drinks, soups, spicy, ginger
Aerobic exercise: 15 minutes, 3 times a week, heart rate up & sweaty
Panax Ginseng: 600 mg/day
Astragalus: 200 mg/day
Tyrosine: 500 mg/day
(herbs that support endocrine function)

I'm going back in six weeks and we will see how it's going then.

I had a major anxiety attack about two hours after my appointment! At least it was after, and I'm hopeful about this whole-body approach.

Gotta go now, I'm off for my "power walk"! :)

[rumpled]

I like the whole body approach.
Some stuff he put you on though.. oy... hope you don't bruise. But I tried tons of the herbal stuff when I was looking for anything to help me feel better. I even went to a Chinese Herbalist and had him formulate a tea especially for my health (too bad it made me vomit but that is another story - I did really try).
Do try them and see how they help. However in my experience, I had a pit problem and it only served to mask symptoms and not get to the root of the problem. We need to see if the underlying issue can be addressed and not just the symptoms. That turned out to be my biggest issue in the longetivy of my quest for a diagnosis is that doctors want to treat you piecemeal and not look at the whole you. This doc seems to want to look a the whole you but does not want to test the whole you?

[SwampWitch]

If the pituitary isn't functioning well, is the cause always a tumor? If not, is there treatment?

Thanks in advance!

[rumpled]

Tumor? Not that I know. In my case my Cushing's was caused by hyperplasia which does not show up on an MRI well - just a shadow so most radiologists do not see it. I have a friend who got growth hormone deficency from a car accident so trauma can also be the cause.

Treatments can be to make up for the absent hormones or surgery has to remove a tumor if it is causing too much of a hormone. I am panhypopitutary after pit surgery, thyroid surgery, adrenal surgery and ovarian surgery.. all were abnormal on me (oh and imaging said most if not all were largely normal, incorrectly, which is scary). I take every hormone but vasopressin. Some pills, some gels, some injections.

[dahlek]

should....How pray tell, is that soo far different from a thyroid? The meds may be a 'bit' different' but, malfunction IS just that: Malfunction.
Whether thru illnesses or disease or whatever we've done in the past, the best way to approach this all is WHAT CAN BE DONE THAT IS THE SIMPLEST with the LEAST S/E's?
Starting out slow, low meds and all that, should be the best and most comprehensive approach. Now I guess Its up to you to find out what all options there are and not panic?
The Majority of pituitary issues aren't cancer. While it doesn't hurt to check out that possibility thru biopsies and blood tests and other 'specialty tests' - [IF your doc and plan allows it!] I have to admit that having another cancer, well the whole concept of thyroid/pituitary and other 'glands' kind of makes me...well, spooky? You just have to 'go' with the tests. Hindsight in my case is that 'some' specialty testing could have detected thyroid and cancer issues earlier....BUT -BUT and I emphasize this...there simply was no reason to DO SO [at that time]! Don't forget, that even in the best and most 'progressive' of insurance plans...docs have to 'JUSTIFY' any testing that's done. It is a nasty evil cycle and one in which scoping out all potential issues outside of 'immediate symptoms' is hard to do.
IN the most BASIC sense, a malfunctioning endocrine 'organ' does not mean cancer. Usually it does not-but the 'ripple' effect on all other endocrine functions and thus lots of the rest of one's functions suffer. To what degree, is the question. If it were me [and I am NO doc, just a big time patient! - I would ask for a serious 'sit-down' with docs and ask OK WHAT NEXT? and what do WE do about it? {YES? We really LOOVE herding cats?-NOT!}
NOW is not the time to ask why it all happened....Key to this all is WHAT TO DO ABOUT YOU NOW.

We can't go back, we have to 'make do' with the NOW and do the best we can with meds and any other resources available that are prudent and safe.
If I could go back and change what was and wasn't done to me during my onset...well. things could be a lot different! But, then YOU wouldn't know what I try to share! - I surely hope this all helps - It's frustrating to the degree of outer space at times - it's so surreal. That is the medical world.
Hang in there, every step of progress is just that: PROGRESS! - j

[rumpled]

I understand what you are saying.
In my own case... my own story... I had what should have been very very good docs tell me to ignore a known pit tumor when the symptoms did not make sense.

Only 12 years later and now that I am disabled due to that poor poor poor tragic advice do I really want people to think that... well, yes, pit tumors are not cancer but there are two kinds that are potentially deadly. Lucky me, I had one of them. Did my tests show it - er - only sometimes! My symptoms showed it all the time but as my tests were all over the place, the docs felt that they could ignore it all the while my health was crumbling literalling in front of their eyes. In my brain, I know it is a problem with the testing and not me as surely as the day is long, hello! I was sick but the docs, as you say want numbers and it was not there. I came very close to dying before I got help with my Cushing's. And unfortunately I progressed so far that I cannot recover. I blame the horrid docs that ignored what I was experiencing even when the numbers were not clear - something was clearly not right. They felt with the labs, even though some were clearly abnormal, that they could just say come back in 6 months over and over and I am forever paying the price for that.

Yes, there is a tremendous ripple effect. Adrenals effect the male/female hormones and the pit and thyroid and very related in my experience.

[SwampWitch]

Thank you for sharing part of your medical history. I am sorry to hear about what you have been though. :hug:

Thank you also for opening my eyes. I have now realized I have almost all of the symptoms of Cushings, and am a little alarmed in the realization that I have been off and on cortisteroids for asthma and eczema for decades. :eek:

I'm weary of being told that I look healthy, when I feel awful and I hurt all the time. My doctor and I are going to have a different conversation in five weeks. I need some tests done. Once again, thank you so much.

[rumpled]

You are welcome. I don't want to come across as an alarmist - it is just that I was sadly served by following what should have been good advice. You may or may not have the same issue but sadly, I have come across too many that have had the same problem that was ignored and I never want to see anyone in the same boat as me.

I just had to ask for a handicapped sticker yet everyone tells me I look great so I know how it feels. I can hardly get around, I am on long term disability and lost the career that I loved.

I sincerely hope that you don't have Cushing's but if you do, hope you can get prompt treatment so you can recover well! And don't let some normal tests - especially dexamethasone suppression tests put the doc off - I suppressed on all of them and still had it.

[dahlek]

Throughout the few years I've now had CIDP, I find that so many folks who have ONE A-I issue, tend to get/have others as well.
About all we can hope for is that SOMEONE who suffers similarly reads this and learns from our shared experiences....
I for one, constantly asked any doc who'd listen "Is THIS related to the THYROID in any way?" and the answer was always NO. I think, and this is just one humble 'patient's opinion....that my having been constantly on Synthroid could have masked the deteriorating thryoid and subsequent sx's were so overlapping with my other 'issues', that no one professional even considered it a real aspect. It was only after I'd gone on the AI's for post-cancer treatments-crossing the 'line' to osteoporosis that they couldn't ingnore the connections anymore. Don't forget, all the meds you are on affect everything, and I MEAN everything if not taken properly.

Checking out those medication prescription 'sites' is useless as WE tend to get the more obscure and subtle s/e's when we don't take our key meds well timed apart from each other. Then to make it muzzier, taking some supplements too close to any key med can either enhance or detract it's effectiveness. I have called each key med's companies twice and I plan to do it annually from now on. Best way to 'keep up' on what's NOT in the news?

I don't know about you all, but, at times I feel as if I've a very small finger in a hole in the dyke that may get lots bigger fast! The more I learn, the more I realize that professionals, docs and others don't know the long term effects of what all we try to do to either feel better, well or even tolerable!

Being cautious to me seems to be the 'safest' approach, being informed, while cautious is whole bunches better! - j

PS: When I get so well that I actually feel "PERKY" You all will be the very first to know!