questions on lab results

[dollsie]

Hi all,

Just got some results and need some help. The lab didn't specify ranges for each phase of the menstrual cycle. I had blood drawn on day 11. My cycles are irregular now (usually very long) but I started counting the day I started bleeding. I'd be really thankful if anyone could post their lab's ranges for these tests, during the follicular phase - according to the LabCorp site, my estrogens and testo are low but FSH/LH are normal. Hmm.

total estrogens 167 (100-900)
estradiol 40 (15-350)
testosterone 9.3 (8-60)
free testo 0.2 (0.3-1.9)
FSH 5.2 (3.9-8.8)
LH 4.4 (2.1-10.9)

I've been feeling slightly hypothyroid lately. Does this make sense with the numbers below?

TSH 0.76
Free T3 2.9 (2.0-3.5)
Free T4 0.82 (0.6-1.6)

Looks like my Vit D2/D3 are low but Vit D1,25 (hormone) is on the high side - according to my online reading, the top of the range is usually 66 or so. Anyone know of reasons for this besides Sarcoidosis?

Vit D 25-OH Total 27 (35-100)
Vit D1,25 Di-OH 74 (18-75)

Had some other stuff checked but I'll leave it at this for now and would be so thankful for any input! Thanks in advance...

Leigh

[ShannonD]

Leigh,
Interesting.
Definitely looks like testosterone is low.  Not a surprise with adrenal disease.
If you are not having signs of estrogen deficiency (hot flashes), I do not know that it would be good to replace, because high estrogen is associated with breast cancer, blood clots etc. It does appear lowish, so if at some point you developed menopausal (hot flash) symptoms, some docs might replace estrogen before FSH/LH go up.  FSH/LH normal simply means you are not in menopause.  Do you have progesterone levels.  This of course flutuates alot with cycle. MOre likely than not you are low.  Progesterone creams can be bought over the counter (partly, I believe because it is considered a fairly safe medicine).  You could use very small amount from day 15 of cycle, until next menses come.  This may help to regulate menses a bit.  Be forewarned....to much progesterone makes me weepy.  Could also increase fertility if that is an issue.  There are some great books about progesterone by Dr. John Lee, but it talks alot about the symptoms.

I can't remember if you were one of the folks who had an ongoing debate of primary versus secondary thyroid and addisons.  Thought you might find the following exerpts from Dr. Freidmans papers on line interesting.  Looks to me like the thyroid could be secondary despite family history of hashi's.  Did you have positive antibodies.

"Patients with a free T4 of < 0.9 mg/dL and a TSH<
1.0 mU/mL are likely to have central hypothyroidism."
http://www.goodhormonehealth.com/Hypothyroidism-final.pdf

Someone on this web site mentioned that they feel best at free T4 in midrange, and from above sentence, I get the sense that Dr. F might treat to get free  T4 above 9. I have been doing a lot of reading on free T3, and frankly find it confusing.  There is a lot of debate about the theory of peripheral resistance to T3 (like insulin resistance), or whether it gets into the cells well which is related to cortisol levels.  Depends on doc whether they do just T4 or T4/T3 combo.  The addition of T3 is probably really for symptoms and feeling of well-being.

OK, you really might find this exerpt from Dr. F's web site interesting!!! Regarding vitamin D and hypothyroidism:
"Additionally, the 25-OH vitamin D form which is
the storage form and is much more abundant that the 1, 25-OH vitamin D form which,
although is active, is less abundant. Therefore, in states of vitamin D deficiency, low levels
of 25-OH vitamin D are found, but the 1, 25-OH vitamin D levels are either normal or
actually slightly high. They are slightly high because the excess PTH that is stimulated by
the low 25-OH vitamin D levels stimulates the conversion up to 25-OH vitamin D to the 1,
25-OH vitamin D. Thus, patients that are vitamin D deficient usually have a low 25-OH
vitamin D level, a high PTH level, a low normal calcium, and a normal or an elevated 1, 25-
OH vitamin D level. However some patients may actually have a high normal calcium as
the elevated PTH and 1, 25-OH vitamin D may cause increased calcium absorption from the
GI track and reabsorption from the kidney. If 25-OH vitamin D levels were not measured,
these patients might have been incorrectly diagnosed with mild hyperparathyroidism as they
have a high normal calcium and a high PTH."
http://www.goodhormonehealth.com/symptoms/VitaminD4may09.pdf

So that would be good and good news if it were related to hypothyroid and not sarcoid.  Do you have any chest tightness, cough or skin nodules?
Dr. F does recommend treatment with vitamin D3, but read the whole paper, because it does not talk specifically about people whigh low 25 OH vitamin D; high 1,25oH vita D, and high calcium.  MIght almost be time for consult with him.

Wow, this Dr. F is starting to seem genius....who knows. Think I might get vitamin D levels checked.
Shannon

[ashley]

Leigh,

I would definitely ask for testosterone replacement. Also, your free T4 is quite low - you probably want it around 1.4-1.5. So, you need more synthroid. Your free T3 isn't as low in the range as the T4, so it doesn't look like you need added T3, but a month or so after you increase the synthroid you should retest to make sure. Because you are on thyroid, you can't use your TSH to determine primary vs. secondary. But it also prob. doesn't matter. If you get your free levels to 60-75 percent of the range, you'll feel much better.

I don't know about the estradiol, FSH or LH.
Vit D 1.25 is high in certain infections. (Mine is often high from Lyme).

Hope that helps,

ashley

[ashley]

by the way,

at my appt. with Dr. F he told me he tries to get the free T4 (for women) to about 1.5.

ashley

[dollsie]

Hi Gals,

Thanks for your input! I really appreciate it.

I wish he had checked my progesterone, but I assume it's low especially because of the testosterone level. I'm familiar with Dr. Lee's work and think that even though the estrogen is lowish, I'm still "estrogen dominant". I had hot flashes several months ago and then it was like things just went kaput. But I'd want to replace estrogen in proper combination with other hormones because there is a history of breast cancer in my mom's side and I've had blood clots...

Thanks for the D1,25 info. I really do think there is an underlying infection and am anxious to see what comes of the Lyme testing. Even if it comes back negative, and despite being totally against unnecessary meds, I do wonder about the utility of a trial course of broad-spectrum antibiotics. A lot of my symptoms really do seem to flare every few weeks. I hope it's not Sarcoidosis, but I have a feeling it might be. So many of the granulomatous/chronic infectious diseases are treated the same way, that maybe it doesn't even matter! I think the Marshall Protocol (for Sarcoid) is out of the question for someone on steroids, but if the Lyme comes back positive I'd want to use the Burrascano method anyway. I'd like to be in a better place nutritionally prior to starting any kind of antibiotic therapy, though. Hoping the iron infusions will get me started - the first one is scheduled for next week.

Shannon, yes my docs and I have at times been confused about primary vs. secondary...I'm pretty sure the anti-parietal cell antibodies point to primary, since they're known to happen with Hashi's and Addison's. The endo also pointed out to me today that I have vitiligo. I only have two small spots of it, but I guess that's enough. Came home and read about it, and it happens with the polyglandular syndromes (which would also indicate primary).

I'm still a little confused about why my FSH/LH are normal - but maybe it takes a while for them to go up with menopause? I know that the adrenals produce a small amount of the sex hormones, but shouldn't the ovaries keep things from getting TOO low?

Ashley, thanks for the advice on the thyroid stuff. I went back up to 75mcg today and will recheck in a month, consider adding T3 then if necessary...it seems like maybe I won't need it...but ideally I'd like to switch to natural thyroid, so maybe it would be best to try combo T4/T3 therapy first and then switch to the equivalent dose in grains? My only concern with the combo therapy is the potency of T3 - would knock me down to a very low dose of T4 without much wiggle room!

I've rambled enough (as usual). Thanks again for the great info. Hope you're both hanging in there.

Leig

[ashley]

Leigh,

1. Yes a trial of doxycline for 6-8 weeks might be a really good idea for you. It covers most tick borne infections and many other things as well. You'll need to take a probiotic while on it. Also, the body lowers iron in many infections, just fyi.

2. Of course this is just my opinion, but following your history over the last few months, I would *not* switch to natural thyroid if I were you...why? Two reasons. First, and most importantly, the T3 in it will almost certainly be too much for you. You're really sensitive (and so am I - I did terribly on Amour). If you take T3 you'll prob. need to have it time release compounded. Other people are fine on it, but lots of people with AI have trouble on it.
Second, because natural thyroid is T3 and T4 together, you can't adjust your levels separately, which can be a huge pain. Just my opinion.

how are you feeling?

ashley

[dollsie]

Hey Ashley,

Uhh...for some reason I'm listed as you here...don't know why and can't change it! Sorry...

Thanks for this info. I've been doing a lot of reading about natural thyroid and what you've said makes a lot of sense to me. My T3 (regular and free) stays pretty much in the middle of the range no matter what happens with my other numbers, so I think it's best to leave it alone unless something weird happens.

I'm a little confused, because my TSH and FT4 seem to be moving in the same direction...on 9/22 my TSH was 0.76 and FT4 was 0.82. This made sense to me, since I felt a little hypo at that time. On 10/6 my TSH was 2.9 and FT4 was 1.4. I felt less hypo at this time (had increased Levo slightly 1 month prior). The increase in FT4 makes sense to me but why would my TSH have increased too?

I'm definitely going to ask Dr. Rind about antibiotics on Tuesday, regardless of the Lyme results. Thanks for mentioning the iron/infection connection. I'd forgotten about that. But I wonder if infection would just lower the iron level, or if it would actually cause "textbook" iron deficiency anemia (changes in Fe, iron, TIBC, %SAT)? I'm kind of assuming this is from the atrophic gastritis, but maybe it's a combination of things...either way, I'd be hesitant to start IV iron replacement prior to antibiotic therapy. Don't want to give those little bugs (whatever they are) an excuse to party!

I'm doing o.k. I guess. Thanks for asking. Having a hard time managing the Dex. 0.4mgs barely gets me through the morning, but I feel way over-treated in the middle of the day and at night. But 0.35 leaves me feeling really low all the time - UGH! I was going to try waiting it out on the 0.35 for at least a week, but I couldn't do it. After 3 days I had to go back up.

I've tried experimenting with the Florinef too, because sometimes I'm not sure I really need it...but yesterday I tried not taking it at all, and my muscles got really crampy, I started peeing too much, salt craving, and eventually had some weird heart feelings so I gave in and took 0.05mgs which helped. I wonder if anyone does every-other-day dosing with that? The half-life seems too short, but I don't know.

I was reading through your other recent post and wanted to tell you that I had a very similiar experience as yours with docs refusing to help. Please feel free to email/PM me for the details if you want to. It was horrible and unfair, and my family and I absolutely believe that liability issues have a lot to do with that kind of treatment. When a doctor knows his hospital has made a mistake, he won't admit fault because he'd be implicating himself...you could hold him accountable and he'd potentially have to face his colleagues in court. It's much easier for him to side with the other docs, that's for sure. Too bad we're the ones that end up suffering just because they're not brave enough to do the right thing. Anyway, I'd imagine it would be difficult to trust anyone like that, especially if it came to surgery. You're better off without him or his affiliations (just my opinion, of course). You're intelligent and resourceful, and you'll find the right doctor for your situation. I just know it. If worse comes to worse, it seems like Dr. F. would advocate for you, right?

Thanks again for your thoughts and help. Hope you're enjoying your weekend.

Take care,
Leigh

[ashley]

Hi Leigh,

The TSH has a lag time of about 2 weeks for most people. More clearly, what this means is that about 2 weeks after changing your T4 dose, your free T4 will have settled in to the new level. But...your TSH will be reflecting what your free T4 was two weeks earlier. That is the reason why doctors recommend waiting at least 4 weeks after a dose change before rechecking labs. With that in mind, looking at the dates of your lab draws (exactly 14 days apart), the higher TSH was reflecting the lower T4 from two weeks before. It's hard to wait, but if you want an accurate TSH reading, you have to wait 4 weeks. If, on the other hand, you don't care about TSH, then you only have to wait 2....

I'm sorry I can't be of any help in the iron replacement question...I just don't know anything about that.

I think you and Dusty are right: UVa is afraid of a lawsuit, since they missed my diagnosis initially. They actually flatly refused to do a pituitary MRI when I asked for one. I'm not too worried at this point. If I need surgery, Dr. F can recommend another surgery center.

Hope you feel well soon!

ashley

[ashley]

Oh, about the DEX:

Maybe you could try .375 (that's 3/4 of a standard .5 pill, which is easy to break into 1/4 pieces) with an added 5 HC in the am? How long would it take for you to figure out if you were having an allergic reaction to HC? Would it be immediate? Are there clear signs, or just a general feeling of malaise? If you think it's safe to try HC, that's what I'd do since .35 is too little all day and .4 is too much all day except am.

I'm having to fiddle with my dose as well. If I don't do any exercise, I'm OK on .25 DEX, plus 5 HC am. But now, adding in running, swimming, etc. That's not nearly enough. So I'm trying .31 DEX plus 5 HC. That is 5/8 of a .5 DEX pill. It's a huge pain getting the pill into 1/8 pieces! How much does it cost to get DEX compounded? And can they compound it into a tablet (so that I can break it) or only into capsules?

[ShannonD]

Leigh, or anybody,

I know that you are seeing Dr. Rind, and considering Lyme's diagnosis.  

If you have a chance take the time to listen to this webinar.  I am not saying to go to one of these doctors associated with Fibromyalgia and Fatigue Clinics, but I think that Dr. Rind knows a lot of the same things, and I found the webinar to be very informative.  I will foward the link to the webinar, and the site, because there are some more webinars that I have not listened to.

http://www.fibroandfatigue.com/webinarArchive.php?id=FFC_OD_ProvenTreatment

http://www.fibroandfatigue.com/

Prior to everything that has gone on with me in the last few months, I would never have thought that I had fibromyalgia or chronic fatigue, nonetheless, I plan to see an alternative doc about this.  Prior to my diagnosis, I have had sore, stiff muscles, and winter body aches for at least 10 years.  It just so happened that when I was replaced on my thyroid, that I got T4/T3. (and take low dose, more than once daily)....from what I can tell, I think that the T3 is excedingly effective to treat my aches and pains. I do not think that it is the HC, but the T3.  Suffice to say, it has made me look into this stuff, and I wonder if this movement of medicine is onto something.  Lord knows sometimes going to a "regular" doctor is like banging my head into a wall.

Anyhow, the above link was really informative at where these docs are coming from. Let me know what you think if you get the chance to listen.
Shannon

[dollsie]

Hey Ashley,

Thanks a bunch for the TSH/T4 info. This is really helpful for me and puts everything into perspective. About the Dex - it's expensive to compound all these meds! Like hundreds of dollars every couple months. But my insurance does cover 80%. I don't know if all compounding pharmacists are like this, but mine only makes meds in capsule form. So unfortunately cutting isn't an option (ugh).

Right now I'm sticking with the 0.4mgs. I may try alternating this with 0.35mgs next week, since there is such a long half-life anyway. We'll see what happens. I do think I need to come up on my T4 dose but want to wait until I've decreased the Dex a little more. Being hypo-t isn't fun, but I absolutely HATE the idea of being over-dosed on steroids, especially b/c of the Lyme situation.

I tried adding some HC last week for a few days and had another bad reaction. It's the weirdest thing - I get really bad inflammatory arthritis, lymph node swelling, a rash sometimes, and just feel physically horrible. The patch testing didn't reveal anything definitive about steroid sensitivity, but the dermatologist said what I'm having is serum-sickness which is a type III allergy, different from what the patches test (type IV). He said there's no desensitization for serum-sickness and wants me to go back in a month for a different kind of testing.

Thanks again! Hope you're doing well. I read your other post and am so happy to hear about your triumph over the flu and your great exercise regimen. All of you are such an inspiration to me. Really hoping to get back to life soon...

Take care,
Leigh

[ashley]

Leigh,

Actually, you should first increase the thyroid, then decrease the steroid. Much easier that way.
Hang in there.

ashley