Thyroid tests are normal?? Are you sure?

[Windchimes]

Hi Pam,

Thanks for your reply. I'll send you a message.

[nonstickpam107]

Sjogren's is an autoimmune disease that attacks the mucous membranes in the body. I required a biopsy of the lip to dx. It doesn't "JUST" make the eyes dry....if you can imagine, it also makes the synovial fluid in the joints dry and any other mucousal organ. Think about it...pretty darned uncomfortable at times. I enjoy quite a respite from the symptoms most of the time, but only because I use inhaled and oral steroids on a daily basis. They can Rx. Salagen (keep mouth wet), but I'm allergic to that.

I've gotten a LOT of relief from a lowcarb lifestyle. Hashi's folks who are undertreated will have dryer eyes.....and it takes sometimes getting the antibody level to fall to see it go away. I'm happy your doc is keeping an eye on it....cuz some docs think TED (thyroid eye disease....look that one up) ONLY happens with hyPERthryoidism. It doesn't.

Pam

[Carb&Driver]

Originally posted by nonstickpam107
No, I don't think the Synthroid is going to help much. Sorry, but your doc should KNOW the "usual" dosage of Armour is around 3-4 grains. And on Armour patients have a very LOW TSH (if they are properly medicated) and a very high FT3 and a low-ish FT4.

Most doc's good with thyroid get the TSH down to under a one (unless they are TSH 'worshippers'), THEN you tweak. My TSH on Armour is around .35 or LOWER (not unusual to see is <.01), my FT3 (and you WANT FREE T's, not total) is about 3/4 of it's range and my FT4 stays lowish. I think you might want to ask the doc where he is going with your TSH. Also, did you JUST take a dose before these tests??? (Within three hours?).

How long were you taking that Armour before testing?

I take my Armour at 6am, and don't take my calcium supps until after lunch and dinner. Iron and calcium need to be taken four to six hours away, and most using them take their Armour and T4 sublingually. I don't see why you would split that teensy dosage of Armour 3x......60 mg. (one grain) is the usual starting dosage of Armour. New range for TSH is .3 to 3.0...so you see how hypo you still are. A lot of docs don't know how to dose Armour or that it contains 37mcg. of T4 and 9mg. of T3 (and T3 is four times stronger than T4). So, a grain of Armour works out roughly equivalent to 88mg. synthetic T4.

Edited to add: How soon??? You should be having blood labs every eight weeks, it took me about a year to get my TSH under a 1, and to see improvement.......at that time my FT3 was FINALLY over the midway of lab range point. As I said, T4 stays LOW on Armour, I'm on three grains now and feel pretty good. "Most" good thyroid docs give increases until the TSH is under a 1, and then they pretty much ignore the TSH (on Armour) in favor of getting the FT's up in range.

Pam

Thanks Pam. I was on Armor for about 5 weeks before the blood test was done. The blood test showed my TSH at 4, with FT3 at 5.6 (range of 3.5 - 6.5) and FT4 at 13 (range of 9 - 23). So I suppose I shall hound the doctor to increase my dose.

I'm kinda confused about the "grain" thing. Are you on 60 mg of armor 3 x a day? One grain equals 60 mg of armor? Which in your case would equal 180 mg of armor total per day? So you don't need any extra T4 on top of that eg. synthroid or the other type of synthetic T4 (I forget what it's called)?

For Pam and any other thyroid sufferers to answer: Is slow cognition a symptom of hypothyroidism? I'm REALLY hoping it's not TOO late to get smarter in my golden years. Has anyone who's finally had their hypothyroidism resolved noticed whether their brain synapses were firing faster? Or is it too late once the damage of years of neglect been done? It feels like I've been hypothyroid almost my entire life.

Pam, I am checking into all the female hormone issues too, thanks very much for your PM on that!

[nonstickpam107]

Yes, that's called "brainfog" and depression also goes with it. No, I don't need any more T4 with my three grains Armour (yes, you are correct...60mg. is a grain). Some do....and I've met more than my share of docs who have NO idea that the TSH should be brought under a 1, and then the FT's are 'tweaked'. At any rate, that teensy amount of Synthroid wouldn't do much.

Brainfog can also be symptomatic of low estrogens. I'll be ready to up a grain, to four grains, of Armour in April. You might try just going up to two grains of Armour (just split it in half...one grain morning, one grain early afternoon). The other way would be to take it like I do.....I have the compounding pharmacy compound my Armour Thyroid in capsules....for time released all day/night.

Pam

[Kitzie]

Hi Pam,

I have my thyroid test results...

TSH 2.6 range is 0.5-6.0
Free T4 1.6 range is .75-1.54
Free T3 3.18 range is 2.57-4.43
T4 9.7 range is 4.6-12.0



The only one out of range this time is the FT4. Why do I have so many symptoms of hypo when I am in range? Also, I have a very sensitive part of my neck in the front where the thyroid is located. I was put on synthyroid twice, and then taken off, I have been off of meds for about 3 years at least.

I ask her what my last TSH test was and she told me it was 6.7 about 1 and 1/2 years ago, and that was the only test they took then. Why the change you think? My thyroid was almost completely damage with an illness when I was a child, but they said that it "healed" itself, what does that mean? How do they know that, and how would that affect my test results?

I am taking Lisinopril and a water pill for blood pressure and also amitryptiline(sp). I use advair for my breathing. Restasis for dry eye syndrome. Any of these affect my test results, I was also under a lot of stress these last few days.

Thanks for your input Pam.

Kitzie

[nonstickpam107]

I feel like crap when my TSH is that high...but each to their own I say. I would want the antibody test...looks like Hashimoto's, with it's swinging wildly back and forth till the thyroid gland is killed off. My FT's went up and down and so did my TSH, which is why my doc did a "block and replace"...he used beta blockers and thyroid med until my thyroid died out more.

You need the antibodies testing and ferritin, etc. I'd want to investigate to see if I had Hashimoto's...the antibodies can attack the thyroid and make you feel badly for YEARS if untreated.

Pam

[Kitzie]

Thanks Pam,

I am going to pick a Doc from the list on the link you gave me. There has to be some help for me somewhere .

My ENT Doc said years ago he thought I had Hashimotos, he put me on synthroid, and about a month later he died. No other Doc I have had agreed with him, so no more meds. My Doc in Michigan said it was my thyroid too, but going out of state for medical care is out of the question at this time.

I appreciated all your advice and wisdom Pam, I will check in with you when I find a different Doc. I asked this Doc for the ferritin and antibody test and she said no, I had to almost beg for the free T's, she only wanted to run the TSH. That was the last time I will waste my time and money on her, and I did have insurance, you would have thought she was paying for it .

Oh well, I hope I have better luck next time.

Kitzie

[nonstickpam107]

Kitzie,

You certainly deserve to feel better, I hope you DO call one of the docs on that list....please let me know how you are doing. There IS a Yahoo thyroid support group for your state, too. Some of us are lucky enough to get a doc that will listen and learn WITH us, but lots of us have to get out there and find someone that will help us. I've heard good things about many of the docs on that list. I'll be thinking of you, fingers crossed you get a good doc!

Pam

[Rustyjack]

Bump

[nosugartalking]

Bump
impressed with this thread and Pam's knowledge

[GardenMom]

Hi ladies...I just wanted to comment....if you are being properly treated, and still do not feel good after a while...keep searching, don't just assume it's the thyroid. I don't mean to scare anyone..

I thought all my problems were my thyroid, but then I also found out I have Lupus...and my pinkish face had been mis-diagnosed with rosacea for many years...grrrr

Anyways, as scary as it is having Lupus, I am being property treated now and feel better than I have for a long time.

[nonstickpam107]

Yes GardenMom, but folks with autoimmune hypothyroid HAVE to know that if they aren't treated correctly and optimally that they CAN go on to acquire MORE autoimmune diseases. Like me. I had Hashi's...and couldn't get ANYONE to treat it (only took TSH...see the importance of taking the CORRECT tests) and now have: Sjogren's, HIE (very rare...should have caught it first), Celiac, arthritis. If Hashimoto's is your diagnosis....you AREN'T going to feel well if you aren't optimally treated...Hashi's sufferer's are also misdiagnosed as Lupus and MS a lot, too (has happened to ME even...I don't have Lupus, I have HIE, all the autoimmune diseases are similar).

VERY important to have the correct tests and have them interpreted correctly. I also know SEVERAL Hashi's patients who ALSO have Lupus...and four of them weren't diagnosed with the Lupus until years after they acquired it...why? Because they didn't 'test' as having it. My rheumatologist told me that he has a lot of patients who "have" Lupus...but they don't test positive on any of the tests for it. It also depends on what TYPE of Lupus you have too...it's like thyroid disease...there's three different types of hypothyroid alone.

Please get copies of ALL your tests....to make sure the correct tests are being done, AND to see how they were interpreted if you were told they were 'normal'.

Pam

[GardenMom]

Pam...I completely agree, that is why I said if you are being properly treated for your thyroid (usually a TSH under 1.0 etc)and then do not feel better after a period of time. My TSH is supressed and undetectable....I am on the correct Armour dose for me.

I was tested for Lupus at the beginning and also told I did not have it...but as time went by, I developed more positive blood work and symptoms and have 5 strong criteria, out of the 4 that are needed. I have SLE, which is the most severe. I have been DX with Lupus by 2 Rheumy's and they both feel the Lupus is what brought on my Hashis. I am on Plaquenil now for it, and feel better that I have in a long time, and my face is looking much better too...yay!

[nonstickpam107]

Oh, I'm so glad that the med is helping you. I went through several months of that new anti-IgE injectable...didn't work for me at all.

I know a man with SLE (and he has custody of three little boys). They discovered his in time to make a difference in how it progresses.

Pam

[Linny]

I have been following this thread for several years and I have to say that I have finally been dx'ed (2/18/05) with Hashimoto/Hypo after years of searching for a thryroid specialist. I present with lots of symptoms. I already had extensive blood work two weeks ago and I am scheduled for thyroid scan next week; I am not taking anything yet; and was wondering how long it takes for blood work to come back? Doc said it could be several weeks

Now, one thing that worries me to death is my low body temp. It usually runs around 96° but lots of times it will dip as low as 92° and last night it was 94°. I also find it gets that low right around 9:00 pm. Is there a reason for that? Also, pulse is usually around 50. I am sometimes afraid to go to sleep and fear I will never wake up

Not sure if I should call the doc back and see if he wants to start anything or if he is waiting for the neck scan. I do have an appt with him on March 21st to go over tests results and that seems so far away.

Thanks to anyone who can give me guidance.

[diatron]

I'm glad you finally got diagnosed, sorry that you have thyroid disease.

My test results are usually back within two days when I have blood tests run to check my thyroid disease. The Free T3 tests usually take longer, sometimes up to a week.

I had the low body temperatures as well. It was not unusual for my temperature to be 96 something or even an occasional 95 early in the morning. Daytime normal was about 97.2. Since I have been on medication (since 4/04) it has risen to 97 something pretty consistently in the AM. Do you also get those terrible cold flashes? For years I complained about hot and cold flashes to my doctors, they thought I was crazy. It's all under- treated hypothyroidism (and some menopause symptoms for me). Most of them are now gone too.

Your slow pulse should also go away once you are properly treated. Hypothyroidism slows down every cell in your body leaving you cold, listless, fatigued and with brain fog.

Hang in there, there is hope that all your symptoms will go away with proper treatment.

[nonstickpam107]

Have you checked out the "Top Docs" list for Pennsylvania? I admit it's not "much" and PA is hard state to be treated in (I KNOW, I moved here from there, and even one of the moderator's for PA's thyroid support groups can ONLY get synthetic T4 and not enough of it to make a difference).

Here's your "Top Doc" list from about.com's thyroid disease site:

http://www.thyroid-info.com/topdrs/pennsylvania.htm

Pam

[Linny]

My symptons have been going back and forth between Hyper and Hypo. I awoke with a sudden jolt early this morning with my heart racing and feeling extremely unsettled and jittery. I hate that when it happens. My poor husband must think I am falling apart (as I surely do)

Will wait until tomorrow and if his office does not call, I will call them and find out

[Linny]

Hi Pam!

I have been to that site and my doc is listed there............. I had been trying for years on end to get in see him but my HMO did not have him listed in their network and my PCP would not give me a referral to go see him because the tests were "normal". I could not afford to pay upfront for all the tests and office visits and then this past July, our HMO lifted the referral requirements and I called my insurance company and found out he was added to the list. I was thrilled

[nonstickpam107]

Well, I'm thrilled FOR you then! That's great. I'm sure someone has come along and told you that it only takes a few days to get results back (TSH, FT4, FT3) and your doctor might have done some more testing that does take a bit longer and wants to make sure he sees the "whole picture"...that's a good reason to wait a couple weeks.

I'm sure, after reading this thread, that you also know that it is a long road with feeling better with treatment for Hashi's hypothyroid. My entire first year was a "give and take" situation, that is, I had to be put on beta blockers to block my high heart rate and at the same time, be put on a teensy little bit of thyroid hormone, this is known as a 'block and replace' and only a handful of doctors know how to do this.

Once I was off the beta blockers and just on synthetic T4 (a year later) and tolerating it, my FT3 started to slide down (this is usually what happens, the Hashi's patient feels good on synthetic T4 ONLY at first, until the antibodies have destroyed more of the thyroid and THAT's when we start to NOT convert our T4 to T3) and that's when my Top Doc put me on Armour Thyroid (with ALL the hormones in it plus calcitonin). It took two more years to titrate me from a smidgen up to three grains, where I now feel almost well enough to work out six days a week (and that's a huge accomplishment for me, as my Hashi's is the LEAST of my autoimmune diseases, lol....my Hyper IgE is what is going to finish me off).

Good luck to you in your treatment plan....please let me know from time to time how you are getting along, if you like this doc, if you've had to go to someone else, etc. I really like to keep up with patient's using the "Top Docs" listings....every year I send a letter off again to the Top Docs list for my State and re-nominate my doctor. So MANY of the people go ONE TIME to a Top Doc, then write they are wonderful, and then if they AREN'T 'wonderful' down their road of treatment, we never hear.

Pam

[Linny]

Thanks Pam - I have followed your situation very closely and I have to say that we are very similar in so many ways with our issues. Do you ever get that tight swollen feeling in your throat? I do most days and especially when I am bending down.

I also cannot wait to get this weight BACK off my body. I am having a difficult time exercising and walking due to the extreme muscle pains and lethargy. It is getting worse by the weeks.

[nonstickpam107]

Hey, I WISH someone else was "similar", lol. My main autoimmune disease is Hyper IgE Syndrome, not Hashi's (that would be nice if it WAS Hashi's though). I also have Sjogrens (which I do NOT think I would have had if I was dx'd and treated for Hashi's the first 14 years I had it). Yes, I had the "fullness" in the throat so badly that I would choke on everything I tried to eat for quite some time.

I started in a hyPER phase, actually ( I have both Hashimoto's and Graves antibodies) and was almost RAI'd to thyroid by a doctor who didn't do anything but a TSH.

The 14 years I was in PA/OH I was completely untreated (even with Hashi's TPO antibodies over the range by 3 THOUSAND). I was told there that my TSH would have to be over a 10 to be treated.

There are quite a few of us (thyroid patient advocates) nowadays, and I'm very glad for that. I'm very fortunate that so many thyroid disease patients have shared their experiences with me and that I can pass that on to others.

You might want to join the Thyroid Support Group for Pennsylvania at the Yahoo groups....quite a few on there seem to be having a rough time getting ANY doctor to do much more than look at TSH.

Pam

[Linny]

Originally posted by nonstickpam107
You might want to join the Thyroid Support Group for Pennsylvania at the Yahoo groups....quite a few on there seem to be having a rough time getting ANY doctor to do much more than look at TSH.

Pam

I signed up for your web group a few years ago and just signed up for the Hashimoto group..........However, I didn't see one for Pennsylvania..............will check again later.

Thanks

[nonstickpam107]

If you join the group in my siggy, it has links to all the State groups (plus chat on Sunday evening amongst all of the US).

Pam

[Galoutofdixie]

Just bumping for newbies.

[Linny]

Bump for Rachel2Writer

[CestMoiMJ]

Alright - you keep talking about how expensive these tests can be. Doesn't insurance cover them? My insurance is PPO and usually tests are covered if they are deemed medically necessary by the dr.

Anyhow - I seem to have a foot in both thyroid camps.

I've had shoulder trouble for going on 1 year now.
Cold hands and feet more often than not.
Fuzzy brain.
memory lapses
heart palp (though they've subsided quite a bunch from last summer)
Night sweats (hot flashes also diminished since last summer)
Hair loss
INSOMNIA (not getting better)
WHACKED OUT CYCLES 2 in January, 2 in February and nothing since Feb 28...this is good)
Temp average as of today for the past 4 days: 97.4
Anxiety (mood swings/teeth clenching)
Headaches
Newly discovered fibrocysts in breasts

Last ob/gyn I saw told me that all of these symptoms were due to anxiety disorder and made sure to point out that there IS no such thing as perimenopause or premenopause...and yet he felt the need to add, "Women have been living with and accepting these perfectly normal symptoms for centuries, Mrs. G."

Also - which time during my cycle is best to have my T's FT's, TSH and hormones checked?

[Linny]

Originally posted by CestMoiMJ
Alright - you keep talking about how expensive these tests can be. Doesn't insurance cover them? My insurance is PPO and usually tests are covered if they are deemed medically necessary by the dr.

MJ: I'll let someone else answer the other question but I wanted to note that I have a POS insurance plan and recently the referral requirements have been lifted therefore I can see any specialist I want without referral from my PCP, who usually coordinates my care. Now here is a suggestion, call the specialists office and/or lab and find out which procedures they are going to do and get the exact procedure code. Call your insurance company and ask them if those procedures will be covered under your plan. I do it every time so I am aware if I will have out of pocket expenses. Better safe than sorry. My insurance has covered all lab tests. BTW: I have all those symptoms you mentioned also and then some. Just recently dx'ed Hashi/Hypo. Best wishes

[nonstickpam107]

MJ...yeah, if the GYN is running on empty with his/her hormones, they would be RUNNING for some bio identical HRT, but YOU can 'tough it out'. What he 'doesn't believe in' is well established science. But GYN's don't do thyroid well anyway, they will tell ya everything is "normal" if the labs that don't matter are in the correct range anywhere.

My PPO covers my endo and all testing, my endo wrote a letter of medical necessity for my Rx. carrier to pay for my bio identical HRT. I don't know how your insurance does this, you'll have to ask.

But as far as which doctor will help you get this all balanced, this is PRECISELY WHY we have lists of patient recommended doc's. Again, some labs will NOT do a FT3 at ALL unless the TSH is over the range. Also, some doctors don't KNOW this, and some will say you don't "need" any T3, and MOST have NEVER medicated with it, and MOST will tell you (this is from the ONE DAY they get in thyroid study for GP's) that your "TSH needs to be over a 10 before I will treat you".

I can't do anything about that, being a thyroid patient advocate, but I CAN provide lists of patient recommended doctors, I CAN tell you that your list of symptoms look EXACTLY like mine (and if a doc won't help you balance your hormones.....he doesn't know what he's doing. If a doc gives you synthetic horse pee as HRT, he doesn't care if you get cancer.)

Hashimoto's hypothyroid travels between hyPO and hyPER until the antibodies kill the thyroid, in the meantime, your sex hormones get unbalanced and many who THOUGHT they were menopausal aren't, and vice versa.

If I were YOU, I'd be checking to see if your insurance will pay for a listed thyroid doc and you already KNOW this particular GYN you mentioned doesn't have the knowledge about hormones being balanced (lack of progesterone and estradiol shoves the thyroid over the edge).

My Mother was one of the women that was told to "tough it out". She died at the age of 49 from Hashimoto's Encephalopathy. They MISdiagnosed it as "schizophrenia"...yes, thyroid disease also causes mental imbalances and depression. She had a rare form of the disease, but she wouldn't have died had ONE doctor cared enough to medicate her for autoimmune thyroid disease.

I get email (never under 40 of them, many times over 100) every day from suffering women (yes, this is usually a women's disease, but there are men who have it, too) whose doc's told them that "women have been going through this for centuries, so YOU tough it out"....woman had been dying a LOT younger for centuries too. I'm not willing to give up ten years of my life to 'tough it out' only to find out that I could have been a more productive person. Some are willing to do that to please the doctor.....a person they don't even really know.

Pam

[inatic]

I think we need a little bumpity , bump