Thyroid tests are normal?? Are you sure?

[nonstickpam107]

Kelly, my hyper IgE (with an IgE of over 22,000) was exacerbated by having ovarian cancer from taking Xolair. I show all the markers of the disease...I have almost NONE of the skin effects from it (I have more problems from herpetiformis from Celiac). A lot of my relatives were the test subjects in that study online (I'm sure you've read that).

So, I don't fit the overal DX (although I also have Sjogrens, Hashimoto's, etc.). I've experienced mainly internal and lung (cancer) problems from it. I took Xolair (has that been recommended in your DD's case? Is her HIE mainly skin condition, or lung?) and it gave me cancer. There are about 300 adults with hyper IgE that are only lung/internal organ afflicted...and are you aware of the study being done at the NIH (National Institute of Health)?

Pam

[kmr7275]

Xolair had not been talked about. What is it for? Hannah has had 2 huge skin infections starting at about 1 month old. One that covered the entire back of her head and one that was on her face. She has also had 2 lung infections. She has had the swimmers ear that can go along with it as well. Her Ige levels are at 2355, but the doc also stated that her whote blood cells do not move at all and currently she is slightly neutropenic. She was started on antibiotics Dec 20, 2007, and has been on it ever since---Cephalexin. That's the only med besides her breathing treatments and skin creams. I am not sure of the study being done at NIH, but her blood has been sent there to Dr. Holland for more genetic testing. They are looking for the STAT3 gene mutation in her, and checking to see if it is dominant or recessive. It sounds like your Hyper Ige was caused by something else? Is that what you are saying?

[nonstickpam107]

They know 13 of my cousins died from HIE. I have a bit lower IgE count than they did. I don't have any of the skin problems. It's mainly contained to the lung, although I had herpetiformis when young...and we pretty much think it's from me having Celiac Sprue.

Look up Xolair. It is an injection that lowers the IgE count. It CAN cause other disease (cancer...but mainly in adults...I got cancer) but is being used in those who's IgE is well above normal (normal is 150, mine at 22,000 was high, I'm betting your daughter's is much higher than mine) to bring the IgE down.

My Hyper IgE is genetic, we know that...both my parents died before they were 50 yrs. old. BUT I also worked in the field of pyrotechnics, with several chemicals and that's when my IgE went way up. There are a couple hundred people that I know of who are adults and have a very high IgE (of course, it is also a question of allergies...for that is what makes the IgE go very high..in my case I carry Epipens constantly, and have the inhalant allergies...a 'whiff' of peanut oil can be deadly for me, that sort of thing).

No doctor (I've seen immunologist, pulmonologists, internists, oncologists, etc.) can explain WHY I have this extremely high IgE...everything except for my exposure to chemicals and my family lineage has been ruled out). They just know that there are more and more adults with excessively high IgE's springing up. They were really worried when they found out my family had had cases of full blown HIE..but it seems like I almost have the 'mutated' or 'dilute' type.

I do know another woman who had a small child did correspond with me trying to find out why I'm not 'as' affected skin wise...that was about 10 years ago. I do believe she belongs to a forum for HIE afflicted people. Wish I could help more (I don't know if they are using Xolair widely for full STAT3 folks either..but you might just do a search for it and maybe see..I was one of the very FIRST patients to have Xolair injections, and know I was the second one in my State to have it nine years ago).

Pam

[PalmTreeGal]

Tomorrow I meet my new primary care doc (I moved recently). I am pretty sure my thyroid is messed up because I just found my TSH from a year ago and it was 4.2. My doc at the time didn't think it was abnormal and I let it slide, then did some research later and found out the new range is way under that. So I will ask the new doc for TSH, free T3 and T4. I hope she's on the ball with this stuff.

I read this thread and others and am SO overwhelmed - I am a graduate degreed nurse for pete's sake but thyroid seems so complicated, especially since apparently mainstream docs don't get how to treat it! It makes me feel hopeless. My depression is a major issue in my life (since age 16) and it has been a struggle to get appropriate treatment, so the thought of another misunderstood chronic disease is like . . . whoa. Shoot me now.

I don't really understand about the free T3/T4. Why is it not good enough to have numbers within the reference range? Why do they have to be at a certain place WITHIN the reference range?

[nonstickpam107]

Mandy, did you see my thread looking for a doc in Maryland? There aren't ANY who do T's, or FT's or Armour. There IS, however, a doc over the PA line (two) who do Armour and the corrects tests. The person I was looking for the doctor FOR works at Johns Hopkins if THAT tells ya anything.

Pam

[PalmTreeGal]

Pam, I did see that about Baltimore and found it disappointing. I have heard good things about this PCP and I feel confident I can talk her into running the FT3/4 but from there looks like I might have to go out of state. But it sounds like you think a doc who is clued in about T3 replacement with synthetics is okay? I'm not going to stress about finding appropriate treatment yet, I'm just going to get the tests run and then come back here and have you tell me what to do with them!

[nonstickpam107]

Do have the Free T4 and Free T3 and TPO antibodies run. FT4 should be midway of it's range, FT3 should be higher than that and TPO should be under range given. Problem with MOST docs is they rely on the pituitary test ONLY (the TSH worshippers). NO one should have their thyroid measured using TSH.

Yes, many doctors will give a COMBO of T4 AND T3 (not JUST T3...so far I've not met one person who has stuck with that treatment, seems that 'mimicing' the human thyroid works best). And the combo works IF the doctor has lots of practice with it. Many who have NEVER Rx'd Cytomel (synthetic T3) tend to overmedicate the patient.

May have had really good luck by calling their local pharmacies, ask if they fill Armour prescriptions and then, if they do, ask which docs are Rx'ing it..you can do the same with asking about synthetic T4 and Cytomel. You might even find a doctor who takes your insurance with a lot of experience in treating patients.

Pam

[nonstickpam107]

Also, if your doctor won't do the proper tests (and keep in mind some LABS refuse to do FT3 if the TSH is 'within parameters') you can get those tests yourself through Online Lab Tests: blood work, blood testing and laboratory tests you order there at website, pay there, they send you to a lab near YOU and then send the results to you ...docs usually charge insurance over 500 dollars to do those tests (TSH, FT4, FT3, TPO antibodies) yet that website will cost about 160 dollars for all of those...use coupon code: 12345 for the discount at check out.

Pam

[PalmTreeGal]

Pam, I thought that in some past posts you had seen some people doing okay with Synthroid and Cytomel? If not why do you recommend docs who prescribe like that?

Also, can you explain why the FT3/4 need to be at a certain point within the range? Is it like TSH where the range isn't truly "normal" or where most people need to be to feel okay?

What can you tell me about thyroid and depression? I was dx'd with depression at 16, have always been medicated, had periods of well and of not-so-well. One of my biggest struggles has been low energy and lack of motivation to do anything I don't HAVE to do, even when I feel okay moood-wise. Is it possible/likely that my thyroid has been out of whack since my teens and contributing to all this?

Another question - why is it that thyroid issues are so much more common in women? Do you ever have men consulting you for advice?

One more question and I promise I will stop! Where does most of your thyroid advice come from (as far as testing, appropriate results, treatment etc)? Is it your own endo's protocol? I am not meaning to challenge you, just curious where it all comes from since the "official" recommendations are somewhat different. It is like low-carb - all the mainstream info seems to be totally WRONG!

[nonstickpam107]

Originally Posted by PalmTreeGal

Pam, I thought that in some past posts you had seen some people doing okay with Synthroid and Cytomel? If not why do you recommend docs who prescribe like that?

Also, can you explain why the FT3/4 need to be at a certain point within the range? Is it like TSH where the range isn't truly "normal" or where most people need to be to feel okay?

What can you tell me about thyroid and depression? I was dx'd with depression at 16, have always been medicated, had periods of well and of not-so-well. One of my biggest struggles has been low energy and lack of motivation to do anything I don't HAVE to do, even when I feel okay moood-wise. Is it possible/likely that my thyroid has been out of whack since my teens and contributing to all this?

Another question - why is it that thyroid issues are so much more common in women? Do you ever have men consulting you for advice?

One more question and I promise I will stop! Where does most of your thyroid advice come from (as far as testing, appropriate results, treatment etc)? Is it your own endo's protocol? I am not meaning to challenge you, just curious where it all comes from since the "official" recommendations are somewhat different. It is like low-carb - all the mainstream info seems to be totally WRONG!

I have an extensive medical (endocrinological) background. The rest of your questions are answered within this thread.

Pam

[PalmTreeGal]

Originally Posted by nonstickpam107

I have an extensive medical (endocrinological) background. The rest of your questions are answered within this thread.

Pam, can you be a bit more specific about your background? I am in awe of your expertise, but I'm sure you understand that I like to know the qualifications of those I take medical advice from, especially on the internet. I have absolutely no doubt that you know what you're talking about. I am very interested in why the care that seems to make people feel best isn't the care recommended by the mainstream groups!

I'll tell you my background - I am a certified registered nurse anesthetist with a bachelor's in nursing and a master's in nurse anesthesia. About all I know about the thyroid is how to do anesthesia for thyroid surgery!

I'm really excited to meet my new doc this afternoon and hopefully get moving on this!

Thanks so much for your help.

[nonstickpam107]

Mandy, I'm not 'treating' you. YOU can find ALL the information I have just by researching (albeit for over 22 years). I've only helped about 2500 thyroid patients 'to date'. If what you are asking if Im a DOCTOR ..no I'm not..and I'm not YOUR doctor. I'm a Thyroid Patient Advocate. That means I put in about 20 hours a week researching, getting the latest research on thyroid disease and helping put doctors WITH patients who are looking for teh BEST of thyroid treatment (not the ol' 'just look at the TSH and throw some synthetic, patented, made in the test tube hormones at 'em...they're all made from the same cookie cutter).

I'm not giving you advice. I'm not requiring you to take advice. After all..I'm just an ol' cripple (quite disabled) who has the FREE time to research thousands of papers and books and websites and then bring the best of that research here.

I'm glad you, as a nurse, are willing to research on your own, you'll find all the same research I have...and probably not have to pay for a lot of the publications I've had to. Oh, the emphasis is on the word 'FREE'. I'm sure many RN's such as yourself would LOVE to volunteer their time to research and advocate to patients. Don't they?

Pam

[nonstickpam107]

Mandy, here is a page from a very FAMOUS thyroid patient advocate (she's not a doctor either...almost none of us are) that can help in starting your research about how hypothyroidism is 'treated' (and how it shouldn't be treated!). Many of these articles are written by doctors, like Dr. Shames (certainly you know of HIM because you are an anesthesia RN who assists at thyroid surgeries...he's one of the most famous thyroid doctors in the world), and also Dr. Teitelbaum (forgive the spelling), also should be WELL known by ANY medical personnel who are in any way involved in thyroid surgeries.

Mary Shomon's Thyroid Disease Articles, Interviews and Information, 1997 to Present, Covering Hypothyroidism, Hyperthyroidism, Synthroid, Armour and Other Thyroid Drugs, Thyroid Cancer, Nodules, Goiter, News, Weight Loss, Diet, Pregnancy, Fertility,

Pam

[PalmTreeGal]

Pam, you seem angry and as if I have offended you, and I'm not sure why. I did not in any way mean to be offensive.

[Beth1121]

Originally Posted by PalmTreeGal

Pam, you seem angry and as if I have offended you, and I'm not sure why. I did not in any way mean to be offensive.

I don't want to speak for Pam, but I think you have misread her. She is very straightforward. She also points a lot of people throughout the country in the right direction. She's a busy, busy lady....also a very helpful, informative one.

[nonstickpam107]

When you read enough research and read about how thyroid patients are virtually IGNORED and treated like crap by 'most' doctors, you'll know why....it's a constant 'witch hunt' by the medical society if advocates ignore TSH worshipping, $inthroid pushing doctors in favor of those doctors who do the correct tests and give natural hormones. It's almost the SAME witchhunt the FDA has manned to go after women who want Bioidentical HRT in favor of horse urine pills and synthetics HRT.

We who have had years of research and experience have to get the word out. I've heard THOUSANDS (not hundreds!) of geriatric patients afflicted with osteoporosis, dementia, mental defect tell the stories of how, back in the 40's and 50's they had their beloved Armour Thyroid (dessicated pig thyroid from Armour meat packing company) and then when expensive, T4 ONLY $inthroid came along from Big Pharma, how their lives came crashing to a hault, and their worlds turned from color to grey. You can't get a patent on a PIG part, and thus doctors were told, over and over, the mantra from Big Pharma...'get your patients on $inthroid and T4 ONLY, cuz they'll all convert it into the necessary T3 (it's a lie) and we'll get this new test, called TSH (which tests the pituitaries control of the thyroid) and we'll test it out on only MEN, young MEN, and then we'll kind of make up a little lab range for it (almost all NORMAL thyroid women have a TSH of 1 or UNDER) and then we'll just STOP testing the ACTUAL thyroid hormones, T4 and T3.

My Mother was in and out of mental facilities for over 10 years, during my formative years. She was given electric shock therapy. She finally died at the ripe ol' age of 49...and the autopsy showed: Hashimoto's Encephalopathy. It started at depression (as most cases of autoimmune hypothyroidism do) and ended up killing her for WANT of just a little bit of thyroid hormone. Yep, they did that damn TSH over and over and pronounced her 'normal'.

I have five autoimmune diseases. I have five because the ONE I started with never got treated for over 15 years. Oh, my, yes..I went to the BEST doctors money could buy...and each did their little TSH gig...and then dx'd me with fibromyalgia (wrong), and chronic fatigue syndrome (wrong) and all kinds of things, and tried their best to push their anti depressants at me, all the while smiling that smile and saying "It's not your thyroid, all the tests (the ONE test) are normal".

And now, I have over 100 emails a WEEK..from countries all over the world. Sweden (where I can't help much) and Japan, China, S.Africa, but I find it quite frustrating to get the majority of the letters from Florida, and California, and Maryland, Pennsylvania, etc.

Two out of every ten women have Hashimoto's autoimmune hypothyroidism. ONE out of every 57.5 doctors know what tests to do, and how to interpret those tests. That ONE doctor knows that giving natural thyroid (or a combination of T4 and synthetic T3...and most of THOSE won't realize the TSH will go in the toilet first, and THEN they need to be titrating dosage using FT4, FT3 tests..nope, they'll cut that patient off at the knees..and keep them sicker and sicker all the while saying 'But your TSH is so LOW..you are HYPER'....ACKKK).

I'm angry all right. I'm so angry that doctors and nurses can't be taught this...that they have to hide behind Big Pharma to keep their money rolling in.

You can't get a patent on a pig part. And that makes them angry. If I COULD tell people who I am, if I COULD 'brag' a little on how I know what I know...it just wouldnt' 'sit well' with the medical community. And then I'd not be able to help all the people who need it...I'd be sittin' in the 'catbird' seat of the medical world...unable to do anything but what I'm TOLD to do.

You're a nurse. You have the background to delve into this. Even if you're tired after your shift....just a few minutes here and there...I'm lucky..I'm disabled, so I have some time to do all this. I am now able to work a full time job for the first time in YEARS (and even if it kills me..I need to do that, and devote a little LESS time to this).

This thread here..these wonderful, wonderful administrators at LCF letting it stay here...and get the word out...I just couldn't ask for more than that. It's you nurses that are going to finally get the word out...cuz if you start researching this...and get the passion for it...you will sway the medical community to 'do the right thing'.

Pam

[PalmTreeGal]

Pam - okay, maybe I am misreading your anger at the medical world as anger at me. I can be a little hypersensitive sometimes.

[PalmTreeGal]

Pam, I AM interested in this stuff for my patients as well as myself. I notice that TONS of my female patients are on Synthroid. I don't think I've ever seen one on Armour or Cytomel. I'm going to start asking them about their thyroid disease, how their meds make them feel, etc.

As I've said above, I have tremendous respect and appreciation for all that you know and do in this area. This board is lucky to have you. I certainly wouldn't have known to push for these tests without this thread, and supposedly I'm an "insider" in the medical world.

[PalmTreeGal]

As for my MD visit today - she did order all the tests I requested. When I asked for TPO she did "thyroid antibodies" instead, I don't know if that's the same thing. She wrote T3, free T4 and TSH. I asked if T3 was the same as free T3 and she didn't really answer, just added "free T3" to the paper. Gotta go look that one up. I didn't get a lot of chance to ask her how she treats thyroid, if she uses Armour etc. She was nice and did the stuff I wanted but I'm not sure if I'll keep her as my primary if she doesn't SLOW DOWN a little! She barely let me finish my sentences. Luckily I went in with typed notes for her to read so I didn't have to keep butting in.

She also didn't palpate my thyroid, which seems like an appropriate thing to do when discussing possible thyroid disease.

[nonstickpam107]

The difference between FT3 and T3 (Total T3) is in this thread too. In the beginning of it.

If the doc doesn't KNOW which tests to get, he/she's not going to know how to interpret them either. MOST (not saying YOURS) doctor, when they get all those asked-for labs back will JUST look at the TSH and say 'Oh, that's normal, cuz it's 'anywhere at all in the range, now pay on the way out!'. I'd no sooner let MY PCP (internist) or my ENT, or my GYN, or my GYN/oncologist, or my pulmonologist, or my immunologist do my thyroid than I would let my dog do it. None of the above listed know jack squat about thyroid. There are TWO really good thyroid docs (and three up and coming..that MY thyroid doc has trained/interned) in my whole STATE. I see one of them, and he has patients flying in from all over.

There are a few really good thyroid docs in all of Florida. Just a few, one very good in Boca Raton (but he 'thinks' he knows nutrition and likes to force sales of supplements and things made from rice on people instead of sticking to thyroid and adrenals).

Pam

[PalmTreeGal]

Okay, so T3 is the same as TT3. Thanks for clarifying.

I don't know this doc well enough yet to say what I'll do, but if the labs do look hypothyroid odds are I will look elsewhere for thyroid management. But at least I've gotten started on the road to figuring things out.

[PalmTreeGal]

Pam. my new doc wrote out my lab orders on a prescription pad so I can pretty much add on whatever I want (naughty me). How will the lab interpret "thyroid antibodies"? Should I just add on TPO? TIA!

[Lilgrnize]

Mandy, I"ve been known to tweak my labs on occasion to make sure I'm getting what I pay for.

When you get the results, be sure to get a copy of the actual lab report, not just their meaningless little piece of paper they mail you that says, "normal" on it. Come back and post your results with lab ranges, with your doc's recommendations, and we'll be able to tell you if she knows what she's doing or is a member of the Cult of the Holy TSH Worshipers.

Hi, Pam! Hope you are doing well. Glad to see you're well enough to work, but wish you didn't have to! I'm actually starting to feel a little bit human again. I'm a little over 2 yrs into treatment with my doc, and am feeling improvements right on the schedule he predicted. I've been at 3.5 grains of Armour for over a year now. The big difference is a result of my antibody count, I think. I went from over 2600 to a little over 900 in the past 2 years. My doc and I were both pretty excited about that. My biggest hurdle now is my adrenal function...it's still all over the place...really high in the mornings, but craters by 10 am and downhill from there. I function by taking bio-ID hydrocortisone in small doses throughout the day. If I have a sudden adrenal rush (car pulls out in front of me, etc.) I am worthless for hours! But it's getting better, and I even have been able to exercise a little recently.

Hopefully, now that I'm feeling a better, I can spend more time here and help answer some questions...I promise I'll try!

[PalmTreeGal]

Wow, Niki, two years to feel better? I'm glad you are but wish you didn't have to wait so long!

I always insist on original lab reports etc - I am a health care provider so a reasonably savvy healthcare consumer. My problem is I am not always assertive enough, especially if I feel I do not know the subject matter well!

[Lilgrnize]

Don't get discouraged...I think I was a pretty complex case. I have Hashi's, had been severely hypothyroid for years, but couldn't get a dx because my TSH was normal. I had a bazillion symptoms, but most docs thought they were unrelated, labeled me a hypochondriac and tried to throw anti-d's down my throat. By the time I did get a dx (thanks to this thread!) I also had adrenal fatigue and some other problems. My doc told me I would start to feel a little bit more human after 2 years, and if I'm a compliant patient, I can feel well in 4 years. I am compliant in all areas except for rest. I'm supposed to be resting as much as possible, and I tend to push myself...as I regain energy, I use it to do the things I haven't been able to do for years, when I'm supposed to be saving the energy so my body can use it to heal.

[PalmTreeGal]

I'm sure I would/will do the same thing as far as pushing myself, it would be so exciting to have the energy to do things! May I ask how old you are, and how long you think you'd been hypo?

[Lilgrnize]

I'm 45, and I suspect I've been hypo at some level most of my life. Nothing you could put your finger on through childhood or even as a young adult, but looking back, I see symptoms I never thought were important at the time.

[olsufka2]

Pam Please Help.
I hope you remember me. I posted about a month or so ago concerning my thyroid lab results. Well, my Dr. put me on Levothyroxine 25 mcg. When I seen him my lab results were as follows my TSH was .98 on the low end of the margin.
My FT4 was .71 out of range with .82 being the the low end range. So, with that he perscribed levo at 25 mcg. to see what happens, to see if my FT4 would come up. Well, my FT4 came up from .71 to .79 but my TSH has dropped dramatically, from .98 to .67 He is out of his office until Monday so his nurse told me to continue my medication and call him Monday to come in and discuss this. I am wondering why in the world my TSH would be dropping so dramatically. Is there a possibility there is something wrong with my pituitary????? I am a little freaked out. I have read that when there is a pituitary problem it is common to have a low FT4 as well as a low TSH. And, doesnt a low TSH indicate hyperthyroid?
Anybody got any answers for me??????? Thank you so much!!!!!!!!!!!!!

[nonstickpam107]

olsufka, the dosage you are on is a starting dosage. I see your doctor doesn't do any T3? And TSH isn't 'remarkable'...it can change all day long up to 3 WHOLE POINTS. TSH means..um...nothing. It's the T4 and T3 that tell you what the thyroid is doing. It takes many months with very slow increases in hormone to get you well, It's not like taking antibiotic and feeling well tomorrow. Let me know your T4 and T3 in about six months.

Pam

[nonstickpam107]

Originally Posted by Lilgrnize

Mandy, I"ve been known to tweak my labs on occasion to make sure I'm getting what I pay for.

When you get the results, be sure to get a copy of the actual lab report, not just their meaningless little piece of paper they mail you that says, "normal" on it. Come back and post your results with lab ranges, with your doc's recommendations, and we'll be able to tell you if she knows what she's doing or is a member of the Cult of the Holy TSH Worshipers.

Hi, Pam! Hope you are doing well. Glad to see you're well enough to work, but wish you didn't have to! I'm actually starting to feel a little bit human again. I'm a little over 2 yrs into treatment with my doc, and am feeling improvements right on the schedule he predicted. I've been at 3.5 grains of Armour for over a year now. The big difference is a result of my antibody count, I think. I went from over 2600 to a little over 900 in the past 2 years. My doc and I were both pretty excited about that. My biggest hurdle now is my adrenal function...it's still all over the place...really high in the mornings, but craters by 10 am and downhill from there. I function by taking bio-ID hydrocortisone in small doses throughout the day. If I have a sudden adrenal rush (car pulls out in front of me, etc.) I am worthless for hours! But it's getting better, and I even have been able to exercise a little recently.

Hopefully, now that I'm feeling a better, I can spend more time here and help answer some questions...I promise I'll try!

I was about on the floor laughing at the 'Cult of Holy TSH Worshippers', hee hee Ain't it the truth though (wish it wasn't). Yeah, I wish I didn't have to work either..had a pretty spactacular asthma attack last night, and my allergies were going strong (a co worker likes to drown herself in reeking perfume, the boss and I (well, I told him and HE told her..I didn't want to get that close!) let her know that I can't work if she insists on smelling like that. The customers were even commenting!

They are really working with me and my disabilities though, and I really like what I'm doing (and the fact that I can afford 'some' of my medications).

I know what you mean about it taking time to heal. I had been misdiagnosed for years and it was a good four years before I really felt I was on my way to feeling better..well, even NOW..with my other autoimmune diseases, I have my bad and my good days. I sure do love being out there in the working world though (after four years of not being able to work AT ALL with the cancer and everything else).

I'm just wondering how long it will take for my IgE to climb back up again now that I'm exposed to 'the world'. But enough of holding my breath and waiting..I'm just gonna throw myself into it.

Thanks so much for pitching in here...I think people need to know just how long it can take to heal (and how long it takes to even FIND a doctor who's willing to work with you and knows about thyroid disease) and you're a gem!

Pam