Thyroid tests are normal?? Are you sure?

[nonstickpam107]

Believe she is.

Pam

[MAMZELLE]

I looked and it says only NY, it might not by new york CITY and still far away. Hope she answers. He/she also has to be able to accept my medical plan, which has been one of my problems too.

[nonstickpam107]

I'll tell you right NOW that most of the good thyroid docs in your area don't take ANY insurance, it's a cash basis. (it's horrible, but that's the way it is in SEVERAL states...my doc will take MY insurance but it's BC/BS...and he takes a couple of others). If you factor in the cost of all the blood tests you need right up front...that alone is around 1100 dollars right there. This is just one of the MANY reasons WHY the patients with 'subclinical' hypothyroidism can't get good treatment.

Have you done a 'docfinder search' at www.armourthyroid.com ?? You put in your zipcode to find a doc that does natural Armour replacement hormone (it's what I'm on). Now, if you find one on there, you need to be calling them to make sure about insurance, costs, and if they really DO give Armour (some put their names on there and only have like ONE patient actually on Armour, the rest are on synthetics). You also have to be aware of the hard fact that it takes about a year to get 'stabilized' on thyroid hormone with testing EVERY six weeks (about 300 dollars) for the first 24 weeks, and then about every four/five months.

Pam

[TinaBina]

Mamzelle, check your PM's

[nonstickpam107]

Bless you Tina!!!

Pam

[MAMZELLE]

I sent this private message, Tina, will paste here too.....

thanks for the info. I called immediately and they don't take my plan. I have no luck lol.... Even if he did, it would cost about 70 dollars in cabs every time I went there, which I knew before I called but I called anyway and he doesn't take my plan. Know of anyone else? Thanks again

[TinaBina]

Check again! I found a few more for ya! I sure wish I lived closer to the city, the pickin's are alot slimmer here in the burbs for me

[MAMZELLE]

Pam, can't look up where I can get your drug because I'm looking for TESTING first to see if I even NEED anything, much less WHAT I need. I'm not at that point yet. I just need someone who will TAKE the tests I need, then I will research what I feel is best for ME personally when I have my results in my own hands and talk to dr's, people, my Uncle [who is a dr., but in AZ] and do heavy reserch online. I did that with my blood pressure meds and refused two of the doctor's initial prescriptions after I researched those and consulted with the pharmicist who I gave them to and didn't want to take them, he said I was correct. I don't know what Armour is [though I've heard about it for decades] and don't know yet what would be right for "ME". I just need TESTS and that's my immediate problem. No I am not paying for this so that it's 300 or 3000 doesn't concern me..... the endo DID take everything but the Ft3 and the estrogen, and the two others hormone tests, but I have to try to get those tests at this point since everything else was normal including all the TOTAL T's and the free T4. That's my first mission I think, don't you? I'm not jumping for any specific medication/hormone till my TESTS indicate I need anything.

[backspace1]

Hi,

I wonder if someone could give me their opinion on my lastest lab work. Was being handled by my PCP, and when he received these labs, he decided he should no longer be handling my hypothyroidism. Kind of scarey because I really like him and he's one of the few docs who will spend quite a bit of time with you. He actually listens. He's always running late because of it.

The meds I'm taking are:

Levothyroxine 75MCG
Cytomel 25MCG

Here are my labs:

TSH 0.05 (0.34 – 5.60 IU/ml)
Free T4 0.51 (0.58 – 1.64 ng/dl)
Free T3 2.7 ( 2.3 – 5.0 PG/MG)
Anti Thyroid Peroxidase AB 276.0 (0 – 35 U/ML)

I've made an appointment with an Endo, but I can't get in until the end of June. Dr. Jennifer Patten in Hartford, CT. Does anyone here go to her? I hope I don't have to start over again.

Thanks

Joann

[MAMZELLE]

I'm calling those other numbers now, Tina, thanks.

[MAMZELLE]

Tina...Two I'm waiting for callbacks [they're not there] and the first one doesn't take my plan.

[MAMZELLE]

Pam.... I understand now about searching out Armour doctors specifically, thanks.

Tina... I called my plan [I have a woman there who really helps me] and she looked up your doctor's names and they aren't listed for my plan either. But I'll still wait for the other 2's callbacks and ask them directly.

[nonstickpam107]

Joann, you may have a pituitary problem, but I need to know how LONG you've been on those meds (75mcg. T4 is a paltry amount...and that's why the FT4 is so low) and the Cytomel would need to be split over teh course of the day. If you have taken that combo for LESS than three, four months, your labs would be 'expected', not frightening, if you've been on it for more than that time, then yes...then I'd be seeing someone else. You have Hashimoto's autoimmune hypothyroidism and your antibodies are much LOWER than mine were. Your PCP just doesn't 'do' thyroid a lot I'm betting. You might want to go to www.armourthyroid.com and read there and also they have a docfinder. Most of us are doing well on Armour, and most of us haven't found many ENDO's that do thyroid well (most are flipping at a low TSH when they SHOULD be looking at our FT's).

I don't know anything about the endo you name. If you go to Yahoo, there are thyroid support groups for each state. You might want to get into the one for YOUR state (and I DO know many from YOUR state are travelling for a good thyroid doc) and see what doc's they are listing as good.

Mamzelle, and everyone, I wish you the best in getting some help for your thyroid conditions.....I'm off to get ready for my pre op discussion with the surgeon and then spend some time with my grandkids this afternoon before surgery tomorrow.

Pam

[MAMZELLE]

Thanks Pam, and good luck with your surgery... will be in my thoughts.

[MAMZELLE]

Ok, everybody [hope Pam will also check in again, before she 'checks in' to the hospital] I have another question since this is all so new to me and confusing...... Also wondering if people with an unhealthy/problematic FT3 test result also have any abnormalities in FT4 that could indicate it, or can the FT3 be bad with the T4 normal as mine is and especially since it's in MID range normal where it should be? What is the percentage or likelihood of people with a T3 problem having their T4 indicating something TOO? ......

All I have to go by so far is that all my other T results are normal [Free T4 and all the "TOTAL" T's including Total T3] along with two doctors who say that my thyroid is normal, with an Endo saying the FT3 test is ""inaccurate and not even worth taking"" and that he doesn't believe in it, and the other Dr [my mother's, who kept her alive till the normal life span of 83 with NO complications from diabetes that required insulin shots all that time ALL her life and then the beginning of Alzheimer's, cancer and everything else it seems, in addition to her Diabetes, so he couldn't be ALL bad] and he says that ""ALL we need is TSH and T4 to judge if there's any thyroid problem and if THEY are normal, that means there ISN'T""..... so though I absolutely DO believe what all of you are saying, and it all makes so much sense .....all this still being so new to me, I have to take that into consideration for NOW at least till I'm further tested which I'm TRYING to be but one of the doctors also says that I have no thyroid problem at all with normal TSH and Free T4 and all the others except FT3, and absolutely believes most of my symptoms are from heavy smoking all my life since age 13.......

All I have going for me now to make me suspicious of thyroid problems are my symptoms, not any test results: always low temperature, hair [thinning VERY slowly for literally decades, no clumps coming out, and with a mother [and father and brother] with the SAME thinning so that COULD be hereditary]..... and along with also have been on Atkins off and on ALL my life, which EVERYONE says it's thinning their hair too, and my exhaustion which I've ALSO had all my life [very low physical energy at least, if not exhaustion all along, but which has ALWAYS been my nature even since a kid. Never the 'outdoorsy, athletic type'......only a MENTAL, and artsy dynamo lol so this isn't That much of a change later in life, from how I've ALWAYS functioned. In fact it still rings in my ears, my mother always saying to me ""MOVE!!!!!!"" when I was growing up in the house and mostly reading or watching TV and could sit for HOURS engrossed with no NEED to ''move'' other than going to the bathroom or for something to nibble! What do other kids do.... go for hikes in their homes in between?? [But it was later established that my mother, being on Zoloft the years before her death, and although a brilliant woman..... DID need to be medicated much earlier in life, and had many anxieties, and anger outbursts although a wonderful mother.......

To tell you the truth, I'm not exhausted when out, just get the pains in upper back and shoulders, neck and shortness of breath if standing too long or walking too far..... but not really TIREDNESS. I feel GREAT otherwise, when out, and when I get home and after I've caught my breath I'm so ENERGIZED and better than any other times! Or could I have been low T3 all my life, undiagnosed? Stupidly, I forgot to ask my deceased Mother's doctor [whom I'm NOT seeing yet and only considering as a last resort] if she had hormone/thyroid problems but I think since we were ON the subject of my thyroid and T3, he MIGHT have mentioned it [though not definitely would have] and he never did and kept TELLING me it ISN'T my thyroid but my smoking. This is the man who has been treating the 'original' version of me [lol] through all her illnesses later in life, so if SHE had these problems stemming from THYROID or T3 / hormonal abnormalities, wouldn't THAT be an alert to him and he WOULD have mentioned it since that is EXACTLY what our whole conversation was ABOUT, and wouldn't he be extra concerned about my hormones if my mother had the problem and NOT have cast the FT3 OFF so easily??? And since SHE is both of our common link here? ........

But basically I'm asking if Free T4 would even 'sometimes' [if not always] have some indications as well, if there was a FT3 problem? [Hope I didn't get too muddled in my writing above....my mind goes too fast and have to write before I forget my points and train of thought lol because always multi-tasking including two of my daily morning shows being on at the same time this hour, both of which I'm also trying to monitor at the same time as I type along with other distractions as well. :-(

[inatic]

Mazelle. Take the guess work out of it. Have your FRee T3 tested! MAKE the doc test your FREE T3 and while your at it, has the antibodies run.

That solves all the guess work. you can have symtoms of thyroid disease without having seriously low test results, which was the pt of this thread.

[ew1]

Hi Pam (if she's not in surgery!)or anyone else, here's the latest test results:
Test: Lab range
TSH 0.234 0.350 -5.500
Free T4 1.18 0.61 - 1.76
Triiodothyronine, Free 2.8 2.3 -4.2
Antibodies (TPO) <10 0 -34
AntiThyroglubin < 20 0 - 40
FSH 35.8 23.0 - 116.3 (post meno, I am on
on estradiol 0.05 2 x weekly)
Cholesterol is 218, it has always been high, it's lower than previous 235.
Trigylcerides are very high 216
Fasting sugar (all tests were done on a fasting stomach) 97

So, Whaddya think? Gotta get the tris down.
I gained 30 lbs after a hysterectomy. I joined a gym and started an 1800 cal diet (I am at 261), lost 5.1 so far.
Good luck Pam with your surgery! Be well.

[nonstickpam107]

Your tri glys are so very high cuz your FT3 is in the toilet. The FT3 should be about midway or HIGHER (and in some they need them quite high in range). You are not converting any of the T4 into T3. FSH doesn't tell you anything once you are on HRT and Post meno...you need estradiol test for that. FSH is only used to 'tell' IF you are post meno or not. Sometimes the tri glys come down nicely once the FT3 is midway of range or higher.

You have to understand that (here ya go Mamzelle) that if you don't convert T4 into T3, than you aren't getting any energy/weight loss help. T4 is like the main hormone and then it either converts or DOESN'T...I don't convert it at all, therefore I take hormone that HAS T3 in it. Some doctors don't want to work hard and will actually tell you that you don't 'need' T3, but if THEY didnt' have any, they wouldn't like it. Also, the reason they MAKE synthetic T3 (Cytomel) and natural (Armour has all the hormones in it) is for people like us who don't convert.

Pam

[ew1]

Wow I KNEW something was wrong. My doc runs the tests for me but he's a GP and doesn't really understand. You hit the weight loss/energy thing on the head. I am also achy and I remember you saying something is wrong when you're achy on meds.
OK, so is Cytomel something I can take with the Synthroid ? I checked Caremark and they cover it (another 30.00 every three months)-do you know what dosage I would be taking? There's a local internist on my insurance who prescribes Armour -would I be better off going to him or trying the endo I went to before? She was listed as a top doc on Mary Shomon's site but I wasn't all that impressed.
So do I go to a doc and ask them to try the Cytomel with the synthroid or the armour for awhile, what scenario am I telling them? If my GP would prescribe it, what dosages would I tell him to try to start me on? Are there any side effects to either of those drugs?

Thank you SO much, I know you have a lot to do for your surgery tomorrow and I appreciate you taking the time to answer today.
Elaine

[nonstickpam107]

I'm not a doctor, so asking me dosage and all won't work (sorry

BUT...I prefer Armour (because our OWN thyroids make T1, T2, T3, T4 and calcitonin and Armour has all that in it). If you can get a doc to switch you from a test tube synthetic (and you're taking the most EXPENSIVE one at that) over to Armour...I say go for it.

OR...I suppose "most" folks if they were wanting Cytomel....added TO their T4, they would start with 5mg. in the morning and 5mg. in the afternoon, then if that didn't bring it up, they'd add another 5mg. later in the evening, OR to the am dosage and if they needed MORE ...they'd add...........(hint, hint).

Inatic is on a T4/Cytomel combo...I'm sure she'd be more than willing to let you know how HER doc started her, what to look for, symptoms, etc. (and hint, hint again, lol).

The best of luck to you!! I'm all done with my 'prep' (I think...I HOPE, OMG...) for tomorrow. Thanks for the well wishes everyone. I'll be having DH get hold of Inatic as for post surgery info and update.

Pam

[MAMZELLE]

inatic.....i HAVE to do guesswork because TWO doctors already didn't do the tests I wanted after they agreed to and the second one PROMISED to and still didn't!!!! I've called about 20 doctors today to start from SCRATCH and can't deal with all this nor what it's costing me in CABS and HAS already cost me for nothing and now have to start all over with the third doctor if I can even FIND one and dwindle it down to a choice between all of them. .....

This is all making me sicker than anything else... including the effects on my blood sugar AND pressure which the new meds I'm taking for the BP are being overridden along with other things in my life in addition to all this which is fighting the benefits of the meds. You wouldn't BELIEVE what's going on with these doctors and the mistakes THEY'VE made already, and more than even innocent mistakes which I won't even go into because no one would BELIEVE all that's happened, but someone we all know has heard it all privately for a couple of months already, that this has been happening......

But aside from all THAT.... I also just got my results in the MAIL and the Endo made a mistake when reading the TPO to me...... he told me 27.8 but the idiot was reading the T3 ""INTAKE"" [not the FREE T3 either] and not the TPO that he said that number was..... Just found out the TPO is 574, thanks to a friend who knows how to read these because I DON'T and obviously can't depend on a doctor to either!!!! Need I say more.....

It was right there isolated and sticking out like a sore thumb in the ''abnormalities'' column and HE didn't NOTICE IT, telling me on the phone that he ""had GOOD NEWS FOR ME.......all my tests were NORMAL""! I was later told by this friend that the TPO might not have been completed yet when I spoke to him on the phone Tuesday, because it's a more complicated test, but HE should have known that if so, and not have given me the wrong numbers from ANOTHER test! We're not playing games here.... they're dealing with people's LIVES and should be CAREFUL and know what they're DOING. If I had NOT insisted on ALL my bloodwork and all tests being sent to me in the mail.....I never would have even known this. And there's something that the FIRST doctor whom I asked for an Endo referral from, didn't tell me EITHER....totally left it out from my original blood work! Don't know what the heck is going on here with these people... I now don't trust ANY doctors even more than before, and never did....

Problem is, now I don't know now how many YEARS I'm walking around in this antibody condition, nor how many DECADES....and almost STILL didn't nor might have EVER if I depeneded on just what HE told me!

There's NO ROOM for mistakes in Medicine, in MY book..... which is what already killed my father years ago. Sorry, I'm just a "WEE BIT" upset...

Has anyone even HEARD of a 574 TPO??? Shouldn't I be DEAD?

[ew1]

MOST very learned thyroid doctors go by a combination of TSH AND FT3. Yours is leaning towards hyPER. Although your T4 looks great, lol. You are a good converter.

How time flies. This is what Pam wrote in 9/2004 and here I am 2 yrs later with T3 in the toilet!!
Pam, I hope your surgery goes without a hitch.
Ileen, I PM'd you per Pam. No hurry, you can PM me back or post here.
Thanks everyone.

[Lilgrnize]

Mamzelle, 574 is a pretty high TPO level, but don't panic about it. My TPO is over 2500 right now...I feel like poop, but I'm working full time, driving, etc. I just have no choice and have to keep functioning somehow. Unfortunately, the only way I found help was to go outside my insurance plan. I'm traveling about 8 hrs to see a doc that's helping me. No, I can't afford it...I'm a single mom with 2 kids in college, and I've just had to make alot of changes in my life to make this work (like moving into a really cheap, rundown mobile home to cut my rent in half, gave up cable, eliminated all the little "luxuries", like eating out, etc.). I decided the sacrifices are worth a chance of feeling normal again someday.

[decodiana]

I have Hashimoto's - have been diagnosed for three years. When I had the thyroid scan three years ago, the results indicated my thyroid was functioning at the 25% level. I was given levothyroxine 0.1mg. This medication has never been changed due to "normal" tests done by the GP. I have not been back to the endo (shame on me) because up until about three months ago, I felt OK.

Weight loss was incredibly slow and has now nearly stopped. I just had my GP run another round of tests for the thyroid, and the lab results are sparse:

TSH 2.63 (reference range says MIU/L)
T3, Total 83 (reference range 60-181)
T-4 (Thyroxine), Total 7.5 (reference range 4.5 - 12.5)

I'm so confused about these thyroid results because I believe I'm undermedicated. I'm SO COLD, all the time (except when I'm having a hot flash - that started about three months ago), particularly my hands (my room temperature right now is 76 and I'm in my winter slippers and a sweatshirt. My temperature upon waking up is ALWAYS under 97. My blood pressure at night is usually around 100/58. Constipation comes and goes, even though I supplement my low carb diet with psyllium and eat lots of good veggies. The other results of the blood test indicate my HDL went up to 71, LDL went down to 98,and triglicerides are at my all-time low of 52.

I also have an artificial aortic heart valve and take warfarin, a diruetic and potassium. I've been taking these since the heart valve was replaced in '98.

I've looked at the Top Docs list and plan to see one in the very near future, but in the meantime, do these numbers look out of whack to anyone?

[nobimbo]

Decodiana,

Hopefully your new doc will order a Free T4 and Free T3 so it can be determined how much of these hormones your body is actually using. Your total T3 is way low and your TSH is too high for someone with Hashi's (should be 1 or less; TSH should be suppressed to take some of the stress off your thyroid gland). You probably would do better with the addition of a T3 med (such as Cytomel) or natural thyroid hormone (Armour).

Congrats on your amazing weight loss!

Linda

[inatic]

Heard from Pam's DH. She is doing well thus far. I havent any other info at the moment. Will post more when it comes in.

[MAMZELLE]

Hi lil..... wow, my friend did tell me that there were people in the 1000's and feel so bad about your living situation and the sacrifices you're making for your health with 2 children, but mine's not much better with NO car to even get around and even getting dressed being such a chore [car's being stored in Ca.] and 70-80 dollars to even GET to Manhattan by cab to find a good doctor, because of not being able to take public transportation OR get it free with my benefits which I'm entitled to [also the reason I'm changing dr's along with all the other reasons]. Is it because of your high antibodies that you feel so awful? Do the high antibodies affect us in that way? Guess that would be the reason for how I'm feeling and never realized that to this extent, till you wrote it. Figured it was caused by my thyroid along with my Diabetes. Well i'm a mess all around and can't get anyone to tell me exactly what's going on. Have you been told your not feeling well is CAUSED by your high antibodies?

decodiana...... All this being new to me, I'm far from one of the experts here so I'll leave your numbers to them, but I have such similar problems. What's your TPO? As far as weight loss, I wanted to lose 20 lbs. Took a whole YEAR on Atkins near induction because of high sugar, to lose even 11 without changing my foods, only cheating a few times and not that badly because I really don't even keep illegitimate foods IN the house but couldn't lose any more, ..... then gained those 11 back suddenly AND another 9, then on the Dr's scale it was 3 lbs higher so I was even more convinced it's my thyroid. My temp NEVER even hit 98 since I have this thermometer, so i stopped even taking it cause it was always the same between 97.2 and .5 but last week [after I've been taking Enalapril for hypertension for about 5 weeks] I happened to take it for no reason and it was finally 98.0, I couldn't believe it, [you'd think lower blood pressure would create a lower temperature] and yesterday 98.4......since then back in the 97's, but I wasn't feeling well yesterday, dizzy and totally disoriented, barely the strength to prepare anything to eat, so maybe that's why. I also get unbearable hot flashes, like dry sweats [not menopause] and also often chills at the same time and so cold! Hope the chills continue through the summer because hot weather & humidity makes me literally sick and immobile. I was ALWAYS constipated with Atkins until started taking 500 mgs daily [split mornings & nights] of plain ole' Magnesium tablets and that totally CURED it and the Ace inhibitor for BP sent me in the Opposite direction for the first week, but now back to normal again and can continue the magnesium. Great about your tryglic and that your heart is doing well!

[Cruzcrzy]

Originally Posted by inatic

Heard from Pam's DH. She is doing well thus far. I havent any other info at the moment. Will post more when it comes in.

Thanks so much for letting us know. Will you please continue to keep us updated as you hear more? It is greatly appreciated .


Marie

[inatic]

She sent a text message to me early this am.

It said.

"boring here. they had me up and walking."

[Lilgrnize]

Thanks, Ilene...really appreciate the updates. Send her my love!