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Old 04-22-2008, 07:44 PM   #1
LPF LPF is offline
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New here and would welcome your experienced input

Hi, I've been lurking here for awhile as I've been trying to learn all I can about thyroid issues. There seem to be a lot of knowledgeable people here and I would greatly appreciate your input. A couple of weeks ago I was diagnosed with Hashimoto's. I am a 41 year old ex-smoker with 1 child. Symptoms really started hitting me bad last year - most of the usual ones you're familiar with, but worst for me has been the fatigue and brain fog. I've gone from being "the sharpest tool in the shed" to someone who even forgets her own birth date sometimes :-( I often can't focus or apply myself to much anymore. It's taken me over a week just to make myself post this!

It took me awhile to really suspect my thyroid, despite a family history. I mostly had hypo symptoms last year, but I mistakenly thought that since I am underweight rather than overweight that I couldn't have that. I'd always seen weight issues associated with thyroid and I figured that was par for the course. Obviously I was wrong By the end of 2007 I was having terrible hyper symptoms, and that's when I finally made an appointment to see someone, and began researching in earnest.

The first doc I approached, I was actually made to see her PA, who blew me off with the usual "maybe you're just depressed" (this despite 3 people in my immediate family with thyroid disease, myself having numerous symptoms, and elevated antibodies as well). At the time, this is what I'd had tested through her order (listing exactly as named on the lab sheet):

Jan. '08 labs

TSH: 2.215 (0.350-5.500)
T4: 7.9 (4.5-12.0)
T3 Uptake: 28% (24-39)
Free Thyroxine Index: 2.2 (1.2-4.9)
TPO Ab: 52 (0-34)
Antithyroglobulin Ab: 69 (0-40)

When I enquired about the elevated antibodies, she said she would prescribe Motrin (!!) She grew increasingly annoyed at my questioning and the fact that I referred to things I'd read online, even things straight from medical journals. You all know the drill. I'll certainly never go back there.

On my own I had new labs done on April 3:

TSH: 3.551 (0.350-5.500)
FT3: 2.7 (2.3-4.2)
T3 Uptake: 27% (24-39)
T4: 8.6 (4.5-12.0)
T4, free (Direct): 1.01 (0.61-1.76)
Free Thyroxine Index: 2.3 (1.2-4.9)

ANA: 51 (0-99)
TSI: 98 (0-129)

On April 9, I saw an endo. She concurred with my suspicion of Hashi's, but said we'd watch it for awhile. I told her that my quality of life has gotten too bad to simply "watch" it. So she prescribed Levoxyl .025 mcg, and also told me in no uncertain terms that she will not and would never prescribe Armour, quoting me "facts" about it that I know to be untrue. I didn't care at that point as I was just so glad that someone had actually dx'd me and finally agreed to give me something for this thing that's wrecking my life. I insisted upon an ultrasound as I have a throat lump feeling most of the time and voice changes - I just would rather check it and know where I stand with that. I am having that done tomorrow.

I only started the Levoxyl yesterday (April 21); I have been diligently improving my diet and taking some supplements and wanted to see if they made any difference in how I felt before starting it. She told me absolutely nothing about the medication, discussed nothing about managing the Hashi's, just nothing at all. So I am trying to learn how to proceed with all this as I already know I am pretty much going to have to take care of things myself rather than rely on a doctor.

I know this is long and rambling (sorry, it's that brain fog thing ;-)). I welcome any input, and especially would appreciate if MG would chime in and help me with the FT3/FT4 stuff I keep seeing but not really understanding, so I can get a better idea where I should be as far as medication goes and what to watch for.

To add to this, I suspect pituitary involvement or some such. Testosterone and estradiol are apparently high, and I may have a couple of PCOS symptoms. I am having prolactin tested shortly. Adding this in confuses the thyroid stuff for me. Any guiding lights out there, please reply :-)

Additional labs if relevant:

Ferritin is very low: 7 (10-291) - I have recently begun taking Floradix Iron + Herbs to raise this and will be watching it.
Cortisol: 12.9 (3.1-16.7 - PM range) - this was tested in the afternoon, serum
RDW: 15.6 - high (11.7-15.0)
Bilirubin is high at 1.7 (0.1-1.2) - other tests that I understand to be liver-related are ok

I've got results for a bunch of other things if relevant - just let me know. I am willing to test for whatever else is necessary, as long as I can order it on my own through one of the online labs.

Thanks for your input

 
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Old 04-22-2008, 09:27 PM   #2
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Re: New here and would welcome your experienced input

Let us work with what you have.

You have Graves and Hashimoto's antibodies. You may have a real rough ride ahead of you. Where are your latest levels?
TSH: 3.551 (0.350-5.500)
FT3: 2.7 (2.3-4.2) = 0.4/2.9*100 = 13.8%
T3 Uptake: 27% (24-39) This is showing you are converting T4 at an adequate rate.
T4: 8.6 (4.5-12.0) = 4.1/7.5*100 = 54.7%
T4, free (Direct): 1.01 (0.61-1.76) = 0.4/1.15*100 = 34.8% You have to love the perfect example of the 20% error inherent in the Total T test. You need more supplementation.

OPtimal range is 50-80% of range. You are way to low. You are also converting your T4 well.. but the T3 is low. If you were low in T4 conversion or high.. we would look to adrenals. I am suspecting a poor conversion of T4 to the inactive Reverse T3. The lab code for this would be RT3. You need to go to an Md willing to prescribe T3. The Armour physician locator database can narrow your search. Then let your fingers do the walking and call and consult with the nurses as to testing policies and willingness to prescribe a T3 supplement regime.

Don't go the self order route. Check with your OB. Tell her of your concerns and the positive identification of Hashimoto's. Ask her to run the regular checks. She may be willing to drive your thyroid care. However most would rather an IM or Endo do it. The OB will know how Hashimoto's can affect you and your children if on top of things. This may be a door to getting you to an Endo or MD worth there thyroid salt. Let's take the thyroid by the horns.. get it reigned in.. then hit the other side mess. Hope this helps. Keep up with my weekly thyroid care concerns post and we maybe able to get you somewhere quickly. Ditch the duds. You should be on 50 mcgs easy.

MG

Free Thyroxine Index: 2.3 (1.2-4.9) .. this is a waste of money.. don't worry about pulling this again.

Ferritin is very low: 7 (10-291) - I have recently begun taking Floradix Iron + Herbs to raise this and will be watching it.
Make sure the iron is fumarate, acetate, or oxalate. Oxides and sulfates are just not as absorption friendly and hard on the digestive tract.
Cortisol: 12.9 (3.1-16.7 - PM range) - this was tested in the afternoon, serum
Optimal is 40-60% in range. You are at 66%. This is close enough to the 5-10% lab std upper range. Your cortisol is good.
RDW: 15.6 - high (11.7-15.0)
Bilirubin is high at 1.7 (0.1-1.2) - other tests that I understand to be liver-related are ok - This is due to muscle attack and inflammation. I will have to get back on the RDW correlation.

Remember I am not an MD.. just a chemist and experienced sufferer.
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Old 04-22-2008, 10:40 PM   #3
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Re: New here and would welcome your experienced input

MG - Thanks so much for digging through my very long and post and responding :-) You've cleared up some confusion for me and I greatly appreciate it.

One more question, if you should revisit this thread:

What are the chances that this is both Hashi's and Graves, and how can I know for sure (ok, it was a combo question)? I figured it was just Hashi's, but I've still got SO much to learn!


Re: ferritin - the Floradix I am taking is ferrous gluconate and is a liquid. I know little of such things but saw it recommended by some thyroid patient somewhere as a remedy that worked well for boosting her own levels when nothing else would, so I figured I'd try it. So far it doesn't seem to have had an adverse effect on me, digestively. My only complaint is that it's vile and I have to knock it back with huge gulps of purple grape juice just to get it down my gullet ;-)

No OB, no PCP - I do not have a regular doctor of any kind. Before this, I hadn't been to a doc since my son was born 9.5 years ago. I completely abhor anything to do with doctors, exams, needles, etc. I'm seriously bad with all that. This is totally my idea of hell *lol* This is why I want to scream when anyone hints that any of this is in my head - I definitely DO NOT want anything to be wrong with me, ever, cos that means DOCTORS!

That said, I am looking into getting a primary care doc; I know I do need one. It just seems a Herculean task to find someone who will actually work with me, listen to me, be a partner, treat me with some humanity and compassion - not just dictate to me like I'm an object/set of labs or brush me off. I have no insurance and thanks to this thing wrecking my brain power, I am also presently out of work for all intents and purposes. My savings are depleting fast and it's not feasible for me to bounce around to various doctors to find a decent one. I really can't afford to pay any more of them for their ignorance! That's another reason I am trying to lay all the groundwork, so to speak, for when I do find another. I do intend to find an Armour-friendly doc and see what they say.

Thanks again for your reply; you are a godsend

PS - I love the weekly posts, just caught up with them tonight. I'll be sure to follow those.

 
Old 04-23-2008, 06:39 AM   #4
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Re: New here and would welcome your experienced input

Given the TSI and TPOAb that you have... it is a high probability. I can not give you stats on this.. I can give you the following information. Graves and Hashimoto's are thyroid autoimmune disorders. The inherent familial dependence in female off spring is 80%. So if Graves comes down one family line and Hashi's down the other. You are screwed and almost guaranteed to get one or the other or both. Case in point.. My maternal grandmother was Hashimoto's with many other AIs and my mom's paternal grandmother/great aunt Graves. She is one of 5 sisters and 3 brothers remaining out of 13. My mom is the oldest of the five. She has Graves and Hashi's. Next sis in line Aunt B1 Graves and Hashi's, Aunt B2 - Hashi's, Aunt R -suspected Hashi's, and Aunt N - Graves. Scary huh? My mom's Paternal aunt and cousin.. Graves. Maternal issues Hashimoto's. This generation of guys was spared.. but we are suspecting Hashimoto's in Uncle L. He is working on getting it checked. It is supposedly rare.. but it happens. If the genetic predisposition is there you, your children, and their children's children have to watch out.

You should look to a DO with a internal medicine specialty or an ENT. This would be your best bet to get all your specs. If you have swallowing issues and palpable growth of the thyroid.. go with the ENT. For general care and concerns the DO may be best. If I didn't need so much medication antibiotic and otherwise I would have went that route. Unfortunately the alternative med route.. doesn't do well by me. My body tends to require the shotgun at close range medicine approach. Hence going with the MD in an integrative medicine practice.

Well I hate to tell you this but you are going to need a good MD. One that will at least write the labs for you and read them. You could check for an academic hospital free clinic near you for routine care and blood draws. If there are teaching hospitals near you, you might be able to qualify for an endocrine study and get things covered that way.

Good luck and stick with us. We will do what we can.
MG
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Old 04-23-2008, 10:38 AM   #5
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Re: New here and would welcome your experienced input

LPF--there's no disputing you have autoimmune thyroid disease. I would just like to point out that your very low ferritin and above-range RDW verifies that you have iron deficiency anemia. With that, you may have trouble tolerating the thyroid meds. It might be better for you to really work on building your iron levels up before you embark on too much thyroid meds. It's possible alot of your symptoms are related to the iron anemia alone.

 
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