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Old 04-26-2009, 11:05 AM   #1
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What to tell my NP? (REALLY long post)

I’m trying to get a better understanding of what’s going on with me and what my lab results mean, so I’ll better know what to talk about with my NP when I see her next (late May/early Jun). I apologize for the long post. I just didn’t know what to include, so I put everything that seemed relevant.

I was diagnosed with Hashimoto’s over ten years ago and started taking Levoxyl about 4 years ago. Sometime in early March, I decided that I might be experiencing hypoT issues again (it’s hard to tell sometimes, as I also deal with fibromyalgia). So, after some research, I decided that I wanted to change to Armour Thyroid. My previous endo LITERALLY went into a red-faced, ten-minute tirade as soon as I mentioned Armour – the up-shot of which was something about pig or horse thyroid and unreliable and no way would he prescribe that and we wouldn’t even be talking about that and etc. So, needless to say, I don’t see him any more and I finally found a NP who would listen to me and prescribe it for me – with the proviso that I could “always” go back to Levoxyl or Synthroid if it wasn’t working for me. Okay, that seems reasonable – no prob. But while she is willing to work with me, she’s not familiar with Armour, nor does she have detailed knowledge of hypothyroid/hormone issues (and I wouldn’t really expect her to do so). She has, however, been in women’s health care for over 30 years, so she understands a lot of what’s going on with me without me having to explain everything – a tremendous relief sometimes - and she treats my symptoms, not my labs.

Anyway, at the time the following labs were drawn, 10 Mar 2009, I was on 88 mcg Levoxyl (unfortunately, due to an ordering mix-up, no free T3 or T4 was done):


TSH .......... 3.69 ..... (.35 - 5.50 uIU/mL)
TT4 .......... 6.4 ...... (4.5 - 12.0 ug/dL)
TT3 .......... 103 ...... (60 - 170 ng/dL)
T3 Uptake .... 32.0 ..... (22.5 - 37.0%)
Ferritin ..... 12.4 ..... (11 - 306.8 ng/mL)
Vit B12 ...... 490 ...... (180 - 914 pg/mL)
Folates ...... 7.70 ..... (>3.0 ng/mL)
Vit D, 25-OH . 17 ....... (20 - 100 ng/mL) - Indicating deficiency

A CBC was also done, but the only abnormal result was RDW (16.0 with range of 11.5 – 14.5%), though the red blood cell counts were at the low end of normal. (Significant? I don’t know, so I thought I’d mention it.)

At time of my last testing (21 Apr 2009), I was on 60 mg Armour Thyroid. I convinced her to up my dosage to 90 mg, based on my symptoms (primarily feeling cold). She was reluctant to up it, probably because we hadn’t gotten this blood work back yet, but we made an agreement and so she did increase it – so now I’m taking 90 mg Armour Thyroid. I had her do an iron panel because a friend told me that my low red blood cell counts and ferritin level, along with a strong family history of anemia, indicates a potential problem with anemia (which could also explain my being cold).

So, my labs on 21 Apr 2009 were:

TSH ....................... 2.97 .. (.35 - 5.50 uIU/mL)
T4, Free, Direct Dialysis . 1.3 ... (0.8 - 2.7 ng/dL)
T3, Free .................. 2.4 ... (2.3 - 4.2 pg/mL)
Ferritin .................. 19.3 .. (11 - 306.8 ng/mL)
Iron/Iron Binding Capacity
Iron .......................... 36 .. (26 - 154 UG/DL)
Iron Binding Capacity, Unsat. . 346 . (162 - 406 UG/DL)
Iron Binding Capacity, Total .. 382 . (259 - 492 UG/DL)
Transferrin Saturation (%) .... 9 ... (8.9 - 40.5%)
Folates ................... 15.03 . (>3.0 ng/mL)

The only other thing to note is that it is probable that this blood was drawn after a B12 shot (I can’t remember for sure… sorry). And this is everything we tested at that time. The NP said that it would take a while for my Calcium + Vitamin D-3 supplementation to affect my levels, so we’d check the Vit D deficiency in another couple of months. Other than that, all my NP had to say about these results (by way of a call from the nurse later) is that everything is NORMAL.

Soooo, okay… these results are normal… but the BIG question is: are they optimal? As I still don’t feel well, I don’t think so but don’t know for sure (for example, how much of the fatigue is hypoT-related and how much is fibromyalgia?). And, if I am operating “sub-optimally”, how do I broach this with the NP? What needs to change? The NP seems willing to listen, but I need good reasons for what I tell her, esp. when it comes to adjusting/changing meds (a perfectly reasonable attitude on her part, I think).

Oh, and one last question if anybody knows… does/can any of this have anything to do with estrogen levels? (Supposedly no question is a dumb question, but it sure does FEEL like one!) I had both ovaries removed last Dec and, while my estrogen level is also normal, I’m considering going to bio-identical estriol/estradiol cream, instead of just a generic estradiol pill. So I’m wondering if that would make any difference in the thyroid issue – I don’t want to change too many things at once, lest I be unable to tell what caused any change… if you know what I mean.

Thanks a lot for your help... and for any advice! It's very much appreciated!

Last edited by ngtstrm; 04-27-2009 at 12:52 PM. Reason: corrected spelling

 
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Old 04-26-2009, 06:52 PM   #2
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Re: What to tell my NP? (REALLY long post)

YOU ARE NOT NORMAL!! YOU ARE FAR FROM OPTIMAL!!

How close to Chattanooga are you? Are you willing to travel? If so make an appointment with Dr. Natalie Johnson of the Center for Integrative Medicine. She knows thyroids and can get you straightened out.

TSH levels above 2.5 have not been normal since 2006. TSH levels above 3 were only normal before 2002. Now given you are on Armour.. you shouldn't waste your time on a TSH. TSH is artificially suppressed on Armour. You are enough that it is effecting your TSH, but hasn't suppressed it completely yet. To get your Ft levels where they need to be your TSH will fall below 1... it may reach nondetectable levels. You must focus on the FTs, hopefully your NP knows this.. if not my IM that I recommended does.

Optimal Ft4 and FT3 levels will be 50-80% of normal range for women of childbearing age.
T4, Free, Direct Dialysis . 1.3 ... (0.8 - 2.7 ng/dL) You are at 26.35 of normal here.
T3, Free .................. 2.4 ... (2.3 - 4.2 pg/mL) You are at 5% of normal range here.
YOU ARE NOT OPTIMAL. You also have a mild T4 to t3 conversion imbalance. This can be adrenal or conversion oriented. You need to get your RT3 levels checked to determine if it is conversion oriented and you need an ACTH, cortisol, and DHEA-s test set run to get a basic adrenal profile. These tests are best done at 8 am in a fasting state.

You need iron supplementation ferrous fumerate is an OTC supplement with great absorption 30 mg should see a rise in your levels.

MG
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Old 04-27-2009, 06:38 AM   #3
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Re: What to tell my NP? (REALLY long post)

I think I might be able for once to be some help!

I'm on estrogen/progesterone replacement. Have been since early November, 2008 so I can weigh in a little here.

I'm using an estro gel. From what I've read, the transdermal (gel, cream, patch) is much safer to use. The problem with the pill form is where a lot of problems crop up supposedly. When the estrogen goes to the liver for processing, it can create the blot clot issues, etc. The transdermal bypasses the liver so hence there's supposed to be less problems.

If you still have a uterus, there's controversy as to whether or not to also use a progesterone with it. You'd probably, even ovary-less, still build uterine lining that without the ovaries and progesterone supplement you'd never shed. That could lead to some big time problems.

I started on a half dose of estrogen gel for two months. Then raised to a full dose for two months. Then full dose with Prometrium (progesterone) added for the first 10 days of the month.

So, far I'm problem free except for the thyroid issue dragging me down.

The only caution I'd have for you is try to get the thyroid issue straight first because, as MG and Midwest cautioned me, the thyroid problem is much harder to correct once you've started other hormonal replacement. Hence why I'm probably still stuck in Thyroid Haedes. They're much better for advice regarding this than I ever could be.

 
Old 04-27-2009, 06:39 AM   #4
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Re: What to tell my NP? (REALLY long post)

A high RDW is a good thing because it means that your body is working overtime to make more red blood cells to make up for the low levels you have in the other values on your CBC (you mentioned those were on the low side of optimal). In other words, you have slight iron deficiency. Take care of this before it gets any lower. You mentioned B12 injections? Why are you taking those?

If you had your ovaries removed, this should have lowered your levels of estrogen significantly and put you into menopause. You mentioned your estrogen levels are in the normal range. Do you have a copy of this? When they check your estrogen levels, there are ranges for where a woman is in her cycle. There are ranges for post-menopausal women, and that would be where they would classify you now with no ovaries. So, you can see that the levels for a post-menopausal woman would be significantly different than a woman who has not gone through menopause. So just because they tell you your levels are good or normal, they are probably normal for a postmenopausal woman, which could be level 0. That does not mean that is a good level for you. Are you having any menopausal symptoms, hot flashes, night sweats, brain fog, etc.?

One last thing, I would not supplement natural estrogen alone, I would also supplement with a natural progesterone, but only after my levels were tested by someone who understands about these levels and could help me with a natural supplementation that is compounded specifically for you. It's hard to find a doctor who understands all of this and is willing to work with you to find your optimum levels (much like finding a good thyroid doc).

Last edited by herekittykitty; 04-27-2009 at 06:43 AM.

 
Old 04-27-2009, 11:06 PM   #5
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Re: What to tell my NP? (REALLY long post)

Thank all of you so much for the replies! I greatly appreciate it! I think I’ve answered all your questions... I'm having brain fog trouble. If I haven't, just ask me again – either posting or PM. And thanks again!

MG: At long last... confirmation that I'm not normal! Just kidding! This is actually something of a family joke, so it brought out a grin when it was the first thing in your reply. I live around 3 to 3 1/2 hours from Chattanooga. With enough planning, I can travel there.

I’ll definitely concentrate on the FT’s. What does the RT3 indicate? I did get a “random” cortisol test, but I don’t have that blood work, now that I think of it. Again, it was “normal” and that’s all I know. I’ll have to get that blood work too. This wasn’t done at 8AM – the office isn’t even open until 9AM. We (the NP and I) had originally planned to do a 8AM test (but at 9AM). However, there were some issues with doing it, so we settled for the “random” test. She did say that we could still do the 8AM test at 9AM – just as long as it was done within 2 hours of me getting out of bed (i.e., I have to get up no earlier than 7AM). Have you ever heard of this?

And about the T4 to T3 conversion - I’d like to be able to learn more and, preferably (?hopefully?), be able to explain it to my NP. Is there some place I can get more info or that I can send her to get more info? That would be my first preference, since I need to see her for other issues than thyroid and I'm trying to establish a trust-relationship with her. But, again, I would certainly be willing to go to Chattanooga if I can’t get help locally. I’d never heard of “Integrative Medicine”... at least not until you mentioned it. I think there’s a “Center of Integrative Medicine” in Knoxville and one in Johnson City – both closer to me. What should I look for as far as philosophy or knowledge (and taking my insurance )?

sophiesmom59: It’s good to know someone is getting good results with transdermal estro. I had most of my uterus and both ovaries removed - there's about a half inch of uterus that is attached to the cervix that I still have. Right after I had surgery, I was on Vivelle patch - I think that’s a bio-identical estrogen, but am not certain. However, due to expense and an allergic reaction to the adhesive in the patch, my OB/gyn put me on the generic estradiol pill (1 mg). Though I don’t have a genetic marker for blood clots, I have had DVT (due to long hospital stay in 2007) and there’s a strong family history of them. Though there’s no “direct line” family connection to breast cancer, my first cousin (mother’s side) died of it at age forty-something. And there are other forms of cancer - lung, colon, brain, etc - in the direct line. So, being on the “paranoid”-side, I have to admit I'm a little concerned. What can I say? Also, since I have… what would you call it? A “nubbin” of uterus left, do I need be concerned about progesterone? Geez! Does it ever seem to you like the questions never end (if not your own, then someone else’s… like me)?

herekittykitty: Well, it’s good to know at least something is working right… that is what the RDW means… right? I took the one-time shot of B12 to see if it would help with my chronic tiredness (under the assumption that the fatigue is more fibro-related, not thyroid). Yet another ailment in the family history is malabsorption of B12 (two sisters), so it seemed worth a try. I am post-menopausal and am taking 1 mg of estradiol that the OB/gyn prescribed for me. My “total estrogen” was checked on Mar 10th - it was 115.0. As the reference range for post-menopausal is <40.0 pg/mL, that sure seems high now that I've looked at it, but the NP said it too was normal. Honestly, I don't think either one of us really paid much attention to it, as that was the appointment where I was trying to convince her to prescribe Armour for me. Since it wasn’t flagged, I didn’t notice it until you asked - boy, do I feel silly?! I guess I should do something about this too, huh? But I’m not having any of the symptoms you asked me about – other than brain fog, which gets blamed on the fibro by both doc and me (as do most of my weird symptoms).

I’ve checked into a couple of compounding pharmacies in my area. The closest one offers the hormone testing and another, not quite as close, offers HRT/BHRT consultation. My NP has agreed to write the script, but, again, she doesn’t have expertise in this area, so I’m having to do my own research, as well as be my own advocate for this too. My plan, for now, is to determine what testing I need for all my issues so that when I go back to her in around a month, I'll be ready to talk to her. That’s what I’m trying to do – gather enough information so I can get ALL the right tests done. I’m hoping that when I get thyroid, hormones, vitamin/mineral deficiencies and the like resolved, I’ll no longer have fibro symptoms. Though diagnosed with fibro quite a few years ago, I’d like to prove this to be a misdiagnosis! At the least, I hope to have greatly lessened symptoms.

All: Again, thanks so much for the help! I'm really grateful!!

 
Old 04-28-2009, 06:15 AM   #6
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Re: What to tell my NP? (REALLY long post)

MG: At long last... confirmation that I'm not normal! Just kidding!
WHO IS NORMAL? NORMAL IS BORING. BLAH! I like being eccentric.. that is me a unique unusual ball of various endocrine dysfunctions.

Accessn123 knows of some MDs closer to Knoxville. You may be able to send her a private message and ask if she can give you any recommendations. I will be moving to Oak Ridge this summer, but I will continue to use my Chattanooga IM. I hate to pass on a good MD when it took so long to find her.

I’ll definitely concentrate on the FT’s. What does the RT3 indicate?
Good to the Fts focus. RT3 stands for Reverse T3 this is to T3 like splenda is to sugar. RT3 is a chiral molecular form of T3. However because the Iodine of the parent T4 molecule was stripped from an interior site versus an exterior site.. the RT3 doesn't fit in the T3 receptors and is for all intensive purposes.. useless.

I did get a “random” cortisol test, but I don’t have that blood work, now that I think of it. Again, it was “normal” and that’s all I know. I’ll have to get that blood work too. This wasn’t done at 8AM – the office isn’t even open until 9AM. We (the NP and I) had originally planned to do a 8AM test (but at 9AM). However, there were some issues with doing it, so we settled for the “random” test. She did say that we could still do the 8AM test at 9AM – just as long as it was done within 2 hours of me getting out of bed (i.e., I have to get up no earlier than 7AM). Have you ever heard of this?
Yes. You want the test by 9 am. But the key is that your cortisol levels hit their peak with in 2 hours of waking so if you wake at 6 your peak should be closer to 8.. if you wake at 7 the peak will come at 9.. etc. Stess, exercise and many other things can effect levels on the day before and day of a cortisol you want to be as Stress free as possible. If you have a husband and kids.. this may be difficult.

Some conversion references I have that are NIH and government sanctioned so safe to share by board rules are:
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=425050
A summary of the conversion process isThe T4-to-T3 conversion process first the thyroid makes about 20 percent of the body's T3 right off the top. The rest is T4 which is longer lived and easily stored for conversion to T3 upon demand. The rest of the T3 is derived through deiodinization of a T4 molecule by the enzyme (called a deiodinase). This enzyme removes one iodine molecule from T4, now if there is a flaw in your deiodinase the iodine stripped may be the wrong one. T4 is converted to T3 in a number of locations: kidneys, liver, and more. The main place for T4 to T3 conversion is the liver.

Why is T3 important? If we make more RT3 than T3 do we need T3? The answer is YES we need T3 ALWAYS! All the thyroid hormone metabolic activity comes from T3. The only time T4 is more important than T3 is during pregnancy. T4 is needed for the fetus to develop properly in the initial 22 weeks while the fetus is unable to produce its own thyroid hormones. T4 is in the body to be converted to T3 and to serve in its neurological metabolism. In a normally-functioning thyroid, enough of this conversion process takes place and you have balance FT4 and Ft3 levels in the 50-80% of normal range.

Conversion issues are not a problem for everyone with hypothyroidism. However with out proper lab tests and careful attention to the results a conversion problem maybe be over looked. There are studies in medical journals that prove two out of three patients due better with some T3 supplementation. The degree of need for T3 is dependent on the individual patients blood chemistry. Given that some MDs refuse to even test and look at T3 levels and consider supplementing T3, the majority of patients on T4 only supplements still exhibiting symptoms could possibly benefit from taking T3 in a natural or synthetic form in addition to T4 supplementation.

Other articles your NP might be able to get her hands on:

Basier VW, Hertoghe J, Eeekhaut W. Thyroid insufficiency. Is TSH the only diagnostic tool? J Nutr Envir Med 2000;10,105-113.

Dommisse J. T3 is at least as important as T4 in all hypothyroid patients. J Clin Psychiatry 1993;July.

Woeber KA. Levothyroxine therapy and serum free thyroxine and free triiodothyronine concentrations. J Endocrinol Invest 2002 Feb;25(2):106-9.

Inada M, Nishikawa M, Naito K, et al. Effect of 3,5,3'L-triiodothyronine administration on serum thyroid hormone levels in hypothyroid patients maintained on constant doses of thyroxine. Endocrinol Jpn 1980 Jun;27(3):291-5

I have access to medical journals and information via my job. That isn't the case with everyone. I have tried and write up a summary of my knowledge and experiences in a series of Thyroid care and concern threads. If you click on mkgbrook you can find a list of threads started by me and get to any of them for reference. My week 2 and week 3 threads are what i considered thyroid basics and thorough information of thyroid and some adrenal issues.

That would be my first preference, since I need to see her for other issues than thyroid and I'm trying to establish a trust-relationship with her. But, again, I would certainly be willing to go to Chattanooga if I can’t get help locally. I’d never heard of “Integrative Medicine”... at least not until you mentioned it. I think there’s a “Center of Integrative Medicine” in Knoxville and one in Johnson City – both closer to me.

Next time I go in I will ask if they have sister locations in Knoxville and Johnson City. Right now I do not know. My insurance covers my visits and all my testing through my IM who is a MD, not a DO or naturopath. That is one of the reasons I chose her. The center and employees as a whole believe that the Normal ranges are not set in stone. The treat symptoms with numbers and lab work to guide that treatment. They focus on the whole patient and not what is written in the chart alone. Fibro may just be hypothyroidism effects. Research is looking into it given that 80% of the patients with fibro are hypothyroid. Theory stipulates under treatment of hypoT results in the symptom set newly classified as Fibro.

MG
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Old 05-05-2009, 08:37 PM   #7
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Re: What to tell my NP? (REALLY long post)

Thanks for the info, MG!

Just wanted to let you know that I got in touch with Accessn12 and she’s been very helpful. Hopefully, I can go see the doc she’s recommended, who’s much closer to me than either Knoxville or Johnson City – yeah! And, btw, I grew up close to Oak Ridge and most of my family is in that area. I hope you’ll like living there!

I’ve been unable to contact my NP, so I haven’t been able to share the info you posted. At least, I haven’t gotten a call back, so I’m assuming the message didn’t get to her – that she wouldn’t respond is too disappointing…

I've been looking at your earlier posts on thyroid and WOW! That's a lot of really good info you've posted - and I'm still "digesting" it. I hope I can keep this info straight in my mind (an iffy thing, at best), but I’m still trying.

Thanks again for the help. It’s been very much appreciated!

 
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