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Old 08-28-2009, 03:41 PM   #1
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Bought the tests online for daughter...

How do you feel they compare with the labs her doctor ordered in April 09?
She was dxd with Hashimoto's in 05, had left lobe removed. Feels ok. Still tired, mood swings, constipation issues. She takes levothyroxine only.

April 09 Labs:

TSH+Free T4

TSH 0.080 *Low* uIU/mL 0.450 - 4.500
T4, Free (Direct) 1.21 ng/dL 0.61/1.76

Thyroglobulin,Quantitative

Thyroglobulin, Qn. <0.5 *Low* ng/mL 0.5 - 55.0


August 09 Labs:


TSH=Free T4

TSH 0.263 *Low* uIU/mL 0.450-4.500

T4, Free (Direct) 1.21 ng/dL 0.61-1.76


Vitamin B12 1244 *High* pg/mL 211-911

Reverse T3 377 *High* pg/mL 90-350

Ferritin, Serum 46 ng/mL 10-291


Triiodothyronine, Free, Serum 2.1 *Low* pg/mL 2.3-4
.2

ETA: Wish I had grabbed the Vit D test, too.

Last edited by starryGal09; 08-28-2009 at 03:43 PM.

 
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Old 08-28-2009, 04:40 PM   #2
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Re: Bought the tests online for daughter...

I know that when my free T3 levels were that low I felt like death.

With the sub-range T3 and the high RT3 and that girl needs some T3 to clear out the RT3. If your endo won't discuss this issue I suggest you find one who will. She is not converting her T4 into T3 and it's converting into RT3 instead, which is not a good thing.

Is she currently taking B12? if so it will screw up the labs and they aren't reliable. Her ferritin is still a bit low, is she taking any iron? Has she tested her cortisol levels with a saliva cortisol test? Too high or low cortisol can cause high RT3

Hope you find a doc who will help with this soon!

 
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Old 08-29-2009, 09:10 AM   #3
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Re: Bought the tests online for daughter...

Quote:
Is she currently taking B12? if so it will screw up the labs and they aren't reliable. Her ferritin is still a bit low, is she taking any iron? Has she tested her cortisol levels with a saliva cortisol test?
First, thank you for the information. ♥
I am keeping notes for her to discuss with her doctor. I am making it my business for now since she is incredibly overwhelmed with work and getting ready for full time classes at university. She tells me she is working on it, going to get it done, etc. But she has no time. I am now her personal medical needs assistant.
We are kind of flying blind here. She fasted the night before these tests for over 9 hours, nothing but water - not even meds. (Didn't know?)
The B-12 is a vitamin Code raw supplement and whatever was in a multiple vitamin she was taking up to the day before the tests.
She said the raw B-12 gives her energy in the PM. I suggested one every other day until she sees doc on 09/03. (New doc).

She was living somewhere else when the April labs were ordered by an associate of her primary care physician, (who was on maternity leave many months prior to this visit).

She was not feeling well, but could not get in to see her PCP, and due to insurance restrictions needed a referral to any new doctor not associated with her pcp. What a mess.

I had ordered these tests to have something more current to bring to the new doctor visit. I am very new at this. We are both learning how much more involved the care for a Hashi patient gets. We thought all was taken care of with surgery and prescriptions.
She had never felt better or good. She thought it was all just stress from her life issues back then. It has been more like a slow train wreck.

Last edited by starryGal09; 08-29-2009 at 09:15 AM.

 
Old 08-29-2009, 09:37 AM   #4
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Re: Bought the tests online for daughter...

She is very lucky to have you as her advocate. Most of us could have used one when we were overwhelmed and so sick and brain-fogged that we could hardly put one foot in front of the other, let alone try to figure out endocrinology !
You can ask her doc about a saliva cortisol test but it's likely he won't be too interested. I (and many others) think cortisol levels are a very important piece of this puzzle but unfortunately not much of mainstream medicine agrees. So you might need to order your own saliva test online like you did the bloodwork. You can PM me if you need any leads.
I don't think she necessarily needs to cut back on the B12 but that taking the suppliments will give a false high reading with bloodwork. It would be really good to get a D level as it's very likely to be low too.
See if she can discuss with her doctor trying out natural thyroid hormones (though with the current shortages she may have to just go with synthetic T3 and T4, but the NTH has other hormones as well that the synthetics don't provide so I think that NTH is a better long-term treatment).
Good luck to you on this journey to getting your daughter well again!

 
Old 08-29-2009, 02:58 PM   #5
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Re: Bought the tests online for daughter...

Will def look into the saliva cortisol test, thanks.
What's strange is she has never had ferritin and/or vitamin levels ever checked. Although she was dxd with anemia after the bout of mono/ebv.
Knowing she was Hashi, why wouldn't any doctor just order all the tests everytime she had new symptoms? Her insurance never restricted tests, just doctors. ??

I just wonder what the docs do for their Hashi family members or for themselves?

 
Old 08-30-2009, 03:45 AM   #6
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Re: Bought the tests online for daughter...

Hi StarryGal09 - I agree, your daughter is so fortunate that you are there helping her out

In a word, NO, doctors will not generally order all manner of tests for all the things which can go off the rails with Hashi's. A lot of doctors only focus on TSH or if you are lucky, T4 and most other times a lot of them don't give much of a look when it comes to T3 and thyroid antibodies. In their opinion, dodgy digestive systems don't happen, adrenals don't malfunction, estrogen/progesterone levels don't imbalance, in their opinion nothing is affected by a dying thyroid, when in fact the rest of us know that it's just way too much of a coincidence that we all suffer from the same malfunctions once we get a dodgy thyroid.

I've learnt via my doctor and my own personal experience how vital it is to have a healthy output of cortisol from our adrenals and much better we feel once our cotisol levels are addressed.

I am also on prescription digestive enzymes and i no longer get bloated or super tired after lunch or dinner. I also don't think about food 24/7 any longer. I'll eat my lunch and can function quite well till dinner time. Before my digestive enzymes i could have eaten my own lunch as well as everybody elses, but didn't put on weight. I found out my system was always starving and i was suffering a form of malnutrition as my body was digesting and absorbing the nutrients from the meals i ate. No wonder i was always eating.

My ferritin levels and Vitamin d are rising with the help of supplements, but if i stop taking them i do have a tendancy to drop my levels.

My hormones are also a mess and i have excess estrogen. Adrenal and hypo thyroid issues are listed as symptoms of excess estrogen so no wonder so many of us have issues with either PMS, moods, fertility, libido, menstrual cycles, fibroids, PCOS etc etc

To think doctors don't believe it's necessary to look at anything but the basics!!!! I think it's more a case of them not being trained to look at anything else which is a shame.

 
Old 08-30-2009, 08:54 AM   #7
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Re: Bought the tests online for daughter...

Quote:
Knowing she was Hashi, why wouldn't any doctor just order all the tests everytime she had new symptoms? Her insurance never restricted tests, just doctors. ??
The other side of this coin is that doctors don't order the right tests and then if they do they don't know how to interpret them correctly. I think I've had almost every test known to man, thousands and thousands of $$ of them but if someone had figured out that my one free T4 test done back in 2003 was only at 28% of range I could have been saved a whole lot of misery and continuing disability. But the range said "normal" and I just continued to get sicker.

I've been reading up on some of the clinical studies on T3 and T4 therapy and see that these studies claim that T3 and T4 isn't any more effective than T4 only. But reading the methods for conducting the study you will see that all the study participants were treated based on their TSH levels alone, not on symptom relief or free T levels. So most of the studies show that patients start out doing pretty great but then fail to maintain their good state after a period of time. This is a great example of how studies can lead to misleading results because of not using good methods. It also shows how improper testing and interpretation coupled by ignoring patient symptoms can produce study results that can negatively impact the treatment guidelines for thyroid patients.

 
Old 08-30-2009, 11:59 AM   #8
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Re: Bought the tests online for daughter...

Thank you oh Powers That Be that guided me here. I only wish dd had moved back sooner. And thank you everyone for THE BUNCHES OF INFO! We are on our way to getting her to feel better. Maybe great. Next stop: FABULOUS!!
It is going to be a journey, I know. I am frustrated and confused. I have looked thru some of her medical files and it doesn't take any degree of any type to see this group of associates were clearly wrong and mishandled her.
But trusting as she was she persevered. She had no choice.(military medical insurance coverage) Her parents offered her carte blance with a credit card to seek out better care. To no avail. She was complacent in that she liked and trusted her PCP. She just became fatter, more depressed, sweated more, became anemic with each period, couldn't sleep and was completely unhappy with her 20 year old self--the very basic of human functions: defacation; TOO was affected to such a degree that had her crying on the phone with her doctor. She would came away with a handful of prescriptions.

Darn. I am mad as heck. Must stop looking back, yes. But jeez these people have doctorates? How? Where did they buy them? Is anyone peer reviewing them in the medical community? For they should. The not so great ones. The ones that do like the majority. Spend exactly 14 minutes with patient, nod three times and hand them X number of prescriptions.
Then just try to get past their PAY NOW OR DIE, staff at the desk.

I can only hope my bitterness turns into triumph for her care. And I must remember to duct tape my mouth at her upcoming visit. I will just hand her the info to discuss with him. Tiny steps. I know. Need chamomile tea.

Last edited by starryGal09; 08-31-2009 at 06:42 PM.

 
Old 08-31-2009, 04:31 PM   #9
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Re: Bought the tests online for daughter...

Starrygal - i totally understand how you feel as it was a long journey for me too. I too was like your daughter, complacent and trusting and knew zero about all of this (still don't know much but at least i know the basics, which is more than most of the doctors out there ). I mean, having an Endo tell you that there is nothing wrong in the thyroid department sort of sealed up that area for me and i went miserably through life, shedding loads of hair and having ongoing menstrual issues.

It gets so draining that you simply give up, but like you, i found help over on the anemia section of the boards where someone told me the relevance of the full thyroid panel and i went on the search for a good doctor. So you may feel that you daughter wasted valuable time in being complacent, but what would she have done? only seen more inept doctors and wasted more money. At least now she will learn through you that there is light at the end of the tunnel and hopefully you can attend the first appointment with her to "screen" the doctor. If the initial appointment has the doctor only wanting to look at TSH or any of the other no, no's then i feel you should move on to the next doctor.

Like javelina said, it's a mix of doctors not knowing what tests to order or not knowing how to interpret them and refusing to take symptoms into account. Unfortunately it's the way they've been tought in medical school. The medical board is really no better, made up of stubborn people who don't believe there can be another way or admit the old way got better results than the new way. Up until the early 70's people were treated predominantly by their symptoms as a lot of the blood testing done now wasn't available back then. Now that we have TSH testing etc etc and lab ranges, that is all the doctors use and symptoms have gone out the window. A real shame!!

 
Old 08-31-2009, 07:16 PM   #10
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Re: Bought the tests online for daughter...

It was her after surgery care that caused the awful spiral downward with her health. (She had her left lobe removed and was dxd with Hashimoto's by an endo).
I am upset over her PCP and the reluctance to refer her BACK to the endo when things became really bad. Also for dismissing the endo's strict directions to keep her on Synthroid and putting her on the levothyroxine while saying "there's no difference. they're {the meds} the same." O M G !! They are the same??? Not from what I read on every thyroid site/book I can get my hands on. Synthroid and levothyroxine are NOT the same.
She started my dd on the levo a year after the surgery and diagnosis. Within six months the kid just fell apart. Was put on laxatives, stool softeners, anti depressants, skelaxin for muscle pains (especially her ankle?), steroids and a host of others. Ignored her anemia. Botched up tests for mono which she had but the ER said it was negative. And on and on. It amazing any one is still alive in that area!

With all of the above issues she was dealing with (within a years time of the original dx) it stands to reason daughter would benefit from a visit with the endo that originally dxd her condition (and performed the surgery).
I don't know. I just wonder if her PCP felt she had everything under control while my daughter suffered on. That she felt confident in her ability to care for my dd, and with each new blood work up just change the dosage of the meds. While dd is still complaining about extreme exhaustion, profuse sweating, lack of sleep, inability to study for class or complete homework assignments. And no bowel movements for days and days.
Why didn't the woman -the PCP- just throw in the towel and say "I give up. I am CLEARLY NOT HELPING YOU AT ALL. Here is a referral to go see that endo."
That's all. Especially with the severe depression, mood swings, inability to concentrate. She was enrolled in college! Help a sista out, doc! Come on!
Could these symptoms have been a contributing factor as to why her marriage dissolved within a year and she and her husband were legally separated by 2007? Maybe. Maybe coincidental. But that little life drama certainly didn't help anything out. She was put on another anti depressant and sent away.

I am just so overjoyed I found this place. The information is unreal. The suggestions are so helpful. Already I see such positive changes with her. Still many issues need resolving. But diet, supplements and knowing the Hashimoto's is the culprit makes it manageable. She feels there is light at the end of that long dark tunnel, now.

I feel that when the patient is presenting with new symptoms with each passing week that is causing much unhappiness and stress in their life, it's time to call out the biggest and the bestest.

Thank you for letting me vent and vent and vent! LOL. I am such a newbie.

 
Old 09-02-2009, 06:11 PM   #11
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Re: Bought the tests online for daughter...

Yes, health forums are great as we get to discuss things with people who have "been there, done that". There is nothing like first hand experience. No doctor can give you this from a text book. This is likely why doctors don't like patients mentioning the word "internet" as in some cases it will show how out of depth some doctors are in certain areas of health treatment.

I just can't get over how some of them don't even know the basics. My dad had a lot of health complaints and i got a few things checked out. It came back that his Vitamin D and B12 were very low, sitting right at bottom of the range. His GP ( i was there) said "nothing wrong, all ok, nothing to worry about". I should have known better and looked at his results while we were there, but i saw them when we got home. Even the lab you ran the tests put asterisks next to the things he was very low in!! I just couldn't believe it and i had to get my dad on some supplements myself. I wanted his Vit D rechecked and this time his doctor said "your vit D is up, that's good, it was low before".......... i rest my case!!

It's getting to the point where every family should have at least one family member keeping an eye on things and double checking facts on the net!! Especially when it comes to our children and elderly parents.

 
Old 09-04-2009, 11:20 AM   #12
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Re: Bought the tests online for daughter...

I ♥ the nets! LOL.

 
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