# Newbie Here, but I REALLY need you feedback PLEASE!!



## WornOut (Jun 25, 2011)

Hi everyone, I'm new here as I've just been diagnosed with hypothyroidism 6/7/11 (TSH 7.1, and an ESR of 40mm/hr). Then on 6/9/11 later my doctor's fill-in re-diagnosed as perfectly normal after re-ordering testing (my doc is on vacation until 6/27/11). The new levels are (TSH .86, Thyroperoxidase Antibody [TPO AB) 17 and Free T4 1.0). He did not order the Free T3 test. I've been racking my brain (and the internet) to try to figure out which test is right, and why the vast differences in results. For the first test, I went first thing in the morning without eating, and for the second one, it was mid-day (maybe around 2-3pm). I had also been dieting (following a nutritionists' guidelines) at about 1000 calories a day, and the second test I was still eating healthy, but with frustration at continuing to not lose any weight, I was eating more).

Over the last 1 ½ years, I have been under tremendous stress, as we have a high functioning autistic son, who we've been fighting the school district to find an appropriate placement, and in the meantime, he was home for 9 months (including summer) with a 1 hour per day home-hospital teacher (that's their term). Needless to say, it's taken a tremendous toll on our home life, although my husband and I are soon celebrating 17 years marriage. I've also gained 80 lbs, some of it deserved, but quite a bit not. As soon as I couldn't button by jean, I started taking my diet seriously, and to my frustration, I just kept gaining, as with the exhaustion, soon became bedridden/housebound. Prior to my Thyroid testing, I had been diagnosed with both Fibermylasia, and Chronic Fatigue Syndrome. So as I have read more and more about hypothyroidism this sounds like my best hope to actually have, as there ARE treatments that can work and I HAD a glimmer of hope for a few days, but now I have no idea what to do.

Initially, my doctor ordered .05mg Levothroid taken once per day, which I started 6/9/11, then stopped 6/21/11, as I read about the half-life of the medication remaining in my system. I just want a clean reliable test result.

My question is has anyone had these type of varying results prior to medication, and do my results look like any type of hypothyroidism? I would REALLY appreciate ANY feedback.

Oh I forgot to mention that at about my age (43) my mother developed a goiter at has been on thyroid meds ever since (that's about 20 years). I have been having trouble swallowing, chronic hoarse voice, and sore thoat (not a major one, just discomfort) along with aching in my wrists and hands ...also major insomnia along with falling asleep mid-sentence or while I eating.

PLEASE give me some feedback, even if its that you think this doesn't sound like a thyroid issue. My family and I are desperate. I keep feeling this is SOME kind of glan issue, but I can't find any help. (I have an HMO, Kaiser, who doesn't want to bother to help.)

(I posted this about an hour ago, but I lost where I posted it, I'm still learning the site layout and have gotten lost.)


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## northernlite (Oct 28, 2010)

Those are wildly different TSH results for 2 days apart. My doctor did order a second one after my first one came back high and it was even higher but it only differed by 2 points not 7.

Even though fasting isn't required prior to TSH testing, I have heard that a fasting TSH in the morning is usually your highest TSH reading of the day.

Your numbers will be changed due to the Levo that you took. I would wait at least two weeks from your last dose and then have another blood draw with a full thyroid panel in the morning. You need to figure out what is going on here. TSH of 7 is clearly hypo. Get your results and post them here. Post the ranges that the lab uses because they are all different particularly with antibodies and FT4 so we can't really tell what the numbers mean without your labs ranges


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## lainey (Aug 26, 2010)

Look at it this way, a re-test on the first result was a good idea by the other doc--you don't want to start on a course of medication for life without being positive that there is a problem, or that this is the correct one.

You don't need to fast for a TSH test and it really isn't material what time of day it is done. Yes, the numbers do fluctuate during the day, but certainly not that much or in a way that is mathematically significant.

At this point, you need a re-test of TSH, Free T4, Free T3 and the antibodies--TPO, TSI and thyroglobulin. With such a variation in your TSH numbers, you need to see if there are antibodies and what they are.

The trouble swallowing, hoarse voice, etc should be investigated with a thyroid sonogram.

You might also want to investigate sleep apnea, or, if you are falling asleep while eating--narcolepsy. Believe it or not, sleep apnea can cause symptoms that are similar to thyroid problems.

Given your two sets of results, I think it was probably wise that you stopped the medication until you re-test and have all of the results in.


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## WornOut (Jun 25, 2011)

You mentioned that it would help to know the lab ranges. I have Kaiser Medical Insurance (an HMO), and here are their ranges:

TSH: Standard Range (0.1 - 5.5 uIU/mL) My tests: 1) 7.1 test 2) .86
Thyroperoxidase Antibody [TPO AB) Range: ( <35- IU/mL) My tests: 1) not ordered 2) 17
Free T4 Range (0.8 -1.7 ngdl) My tests: 1) not ordered 2) 1.0
ESR (erythrocytes sedimentation rate): (0 -20 mm/hr) My tests: 1) 40 2) not ordered

The other "odd" lab I had was a Creatinine Serum with Glomerular Rate. The specific test in this group was:
Comment, Glomerular Filtration Rate: (blank column for standard rate) My tests: 1 (SEE NOTE)
I called the nurse, left messages, asked to have the doctor call back, but never found out what my "Note" said! Rather frustrating and unsettling.

One of the most frustrating things was that after the second round of tests (the doc only ordered 3) I received a letter from the covering doctor saying all of my teat results were fine, and that NO, he would NOT send a referral for me to see an Endocrinologist.

FYI, (being a newbie) I posted this in two locations (1 in the newbie section, and one here). I did receive some good and interesting feedback from Andros, so I though it made sense to incorporate my reply from that section to here. Andros was full of information and quick to get back to me. Here is my combo reply to both sections:

It is really helpful to understand what the TPO antibodies mean I have something going on with autoimmune so that I can further discuss it with my doctor when he gets back. Also, I was surprised to hear your thoughts about the possibility of being Hyper rather than Hypo. I figured that since I was always so tired, and keep gaining weight that I must have a sluggish system (and be Hypo). My heart is always fast (resting its usually between 90 - 108 ) I do get tachycardia, but they ran tons of heart tests on me and my heart itself is in excellent condition. This may well explain why I'm SOOO tired all of the time! My standard temperature is also 97.8. Just took it again while typing!

I have gone through the sleep apnea testing (TWICE, first in 2001, then in 2011) as my snoring can wake the whole house (as a lady I should say, "my deep sounds of pleasant rest" instead of snoring!:ashamed0002)

I am also excited to hear another supporter of Atkins. I had great success several years back, but I've been so discouraged by friends and extended family that I was giving in to them and trying Weight Watchers (GAINED 10 pounds, following strictly!). I'm now going back to my Atkins book and hopefully it will help.

I was able to get a phone appointment with my primary doctor this Monday (6/27/11). The first face to face appointment was mid-July, and I'd like to clear this all up.

One more question for those of you who have been patient enough to read my novel length post, Being on .05mg Levothroid once a day, starting 6/9/11, then stopping 6/21/11 (a total of 12 days, as I did not take any on 6/21/11), should I wait the full month from stopping date to be sure the medication has cleared my system before any other blood tests? I did read that it has a 7 day half life, so even stopping it, you can't get rid of it that quickly!

Thank you all again, Maria


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## lainey (Aug 26, 2010)

You need the TSI and free T3 as part of the next round of testing to get a full picture.

I would wait the full 4 weeks for the blood testing to get an accurate picture. Even though you only took it for a short time, if your levels are fluctuating, you really want to be sure.

What is the problem for others with Atkins? Nothing against Weight Watchers, I know people who have good success with it, including my husband. However, with thyroid issues, people seem to have more success when they go the lower carb route. If it worked for you in the past, try it again.

Report back with what your doctor says on the phone appointment.


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## WornOut (Jun 25, 2011)

I FINALLY talked to my primary doc Monday (sent him an email msg first with my request to see an endocrinologist and a review of symptoms and test results. Also included a list of tests I wanted run:

Requested Tests:
Thyroid hormone panel: TSH, Free T3, Free T4
TSI (thyroid stimulating immunoglobulin)
TPO (antimicrosomal antibodies) 
TBII (thyrotropin-binding inhibitory immunoglobulin)
Thyroglobulin Ab, ANA (antinuclear antibodies)
Antibodies
FT4
Thyroid sonogram (to follow-up on the trouble swallowing, hoarse voice)
Re-test TSH
Re-test ESR
Follow-up: Last Creatinine Serum with Glomerular Rate, under Glomerular Filtration Rate: please tell me what the (SEE NOTE) means.

Please note: I've had TWO sleep apnea tests ( first in 2001, then in 2011), both tests negative.

And as I was hoping, he sent a referral right over to the endocrinologist office. This morning I received a call from the endo dept and I have an appointment tomorrow at 10 am arty0006: !

I have my list of symptoms and such I'm bringing (I tend to have a horrible memory when seeing the doctor, and forget half of my symptoms if I don't write them down).

Is there anything I should do to prepare for the appointment, or anything I should be sure to ask/bring up? As this is my first apt, I want the doc to take me seriously, and hopefully help me, rather than sound like a hypochondriac.


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## webster2 (May 19, 2011)

Wow! Yes, bring a list of your questions, and notes about symptoms you want to talk about. Make sure you can take notes, or bring someone with you. Best wishes!


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## lainey (Aug 26, 2010)

i think what you want to point out is the large swing in TSH in just a couple of days, before you really had a chance to start medication. It is possible for a person to have both sets of antibodies, it is possible for them to wax and wane, so you really want a full work up to find out where you are and what is influencing your numbers.

The sonogram, and possibly an uptake scan should be done to look at the structure and size of your thyroid as well as how it is functioning.

It could be a couple of appointments and another series of tests.

Know going into this, just fyi, that some people do fluctuate that way. It's not the best situation for the patient, because the usual course is to watch and wait as the antibodies run their course.

Let us know how the doc treats you.


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## Andros (Aug 26, 2009)

WornOut said:


> I FINALLY talked to my primary doc Monday (sent him an email msg first with my request to see an endocrinologist and a review of symptoms and test results. Also included a list of tests I wanted run:
> 
> Requested Tests:
> Thyroid hormone panel: TSH, Free T3, Free T4
> ...


It looks like you are well prepared. Please do not mention the Internet. Docs just hate that and then refuse to take the patient seriously.

Just say you have a family member or friend who has been through this and she/he wrote it all down for you! Aaaaaaaaaaaaaaaaaaargh!! Sad but true!

Good luck tomorrow! I will be with you in spirit and so will everyone else around here.

We wish you the best and cannot wait to hear how your appt. goes!


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## bigfoot (May 13, 2011)

Andros said:


> It looks like you are well prepared. Please do not mention the Internet. Docs just hate that and then refuse to take the patient seriously.


Yeah, no kidding. Made that mistake already. If you have to refer to this board, just say you're part of a "thyroid support group". LOL

Best of luck with the doc -- sounds like you've got it together! That's awesome.


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## northernlite (Oct 28, 2010)

I have two Hashi brother both diagnosed more than a decade ago. I use them as my excuse to repeat what I learn on here....my brother told me....... LOL


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## northernlite (Oct 28, 2010)

Summary of the article on fasting TSH tests and article reference:

Interestingly, however, research by Scobbo et. al. in 2004 showed that TSH tests declined in 97 of 100 of the people studied -- by an average of 26.39% -- when compared to early morning, fasting, TSH test results. This resulted in as many as 6% of patients being reclassified from the diagnosis of subclinical hypothyroidism to "normal."

Scobbo RR, VonDohlen TW, Hassan M, Islam S. Serum TSH variability in normal individuals: the influence of time of sample collection. W V Med J. 2004;100:138-142

When I am trying to prove to my doctor that I am still undermedicated, I get my blood drawn in the am while fasting!! Every little bit helps in the battle.


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