Thyroid Forum Lurker...need's advice..thought's

[yepthatsme]

I've been here quite often...gathering information. Before, I fade off to sleep at night I see FT4's, FT3's...tsh's....floating around in my head. LOL
I have a family history of thyroid, mother, brother, my 2 daughter's. My eldest has a large goiter. Dr.'s say she doesn't have thyroid issues. Yea...ok.
My youngest was dignosied when she was 14. First Bethesda said Graves, 2 days later they called and said Hashimoto's. No medication given. Fast forward...to 2006. Hyper...with melt down. Placed on AD med.'s...given dx of borderline personality d. Looking back...no. Forward to 2008. Seen by an endo he placed her on synthroid 25 mcg because of positive antibodies. She also had a biopsy on the left nodule...H. thyroiditis. No further treatments...he just kept checking TSH, everything is fine. Yea.
The synthroid was not the drug of choice. We asked the doctor about Armour.
You would have thought...we asked him to give up his Prada shoes.
Forward...Found a new doctor listed on Top Thyroid doctor's. Oh...I thought...
this is it...our saving hero. Yea...well...not. He did manage to prescribe the armour...60 mg. tab..then, went off on a tangent about her prog. levels. She's 25..they compounded prog. didn't work well. She has symptoms of PCOS, no dx. Armour worked so..so until, the reformulated. No change in med.'s...talk of diet, exercise. Asked him over and over to test FT4, FT3..fell on deaf ears. Her last blood test with him.

Potassium, Serum 3.4  Low   Range 3.5-5.2
HDL Cholestrol   26      Low              >39
TSH                  0.555                     0.450-4.500

No testing for any of the TF's.
He jumped all over her for diet and exercise. Duh...could it have been her thyroid?

Fast forward...to her GP. Nice man, good doctor...doesn't know one thing about thyroid and will tell you so. Willing to work with you...for blood tests, etc. So, I wrote down the blood test's in Jan. 2010 for him to run. Not all the test's I asked for came back...but, here's what I have.

HDL Cholesterol   26     Low    >39
LDL Cholesterol Calc  110      High  0 - 99
Vitamin D    19.2   Low           32.0- 100.0
Thyroxine (T4) Free, Direct, S   1.35     0.82 - 1.77
TSH  1.070      0.45 - 4.500

He had run a Cascading Lab...if, the tsh is in range, the other test's are cut.

DD has had 2 virus's in the last few months. Each virus has closed off her right ear. First she went to er...she felt something pop...blood running from ear. Hospital staff, follow up doctor didn't have a clue.
Second virus..doctor gave antibotic's and pred. shot.
Week later....she presents with hyper symptoms.

Visit with her GP yesterday...(yes, I sent more blood tests with even the test #'s to run)...
The doctor placed her on a beta blocker Metoprolol 25 mg. Plus, a medication to help her sleep at night...(it's nearly 3 every night before she is able to fall asleep).
Monday she has another appt. with him for a heart montitor, to wear for a week.

I'm sorry this seems like a novel....I'm just really worried right now...and fighting a sinus infection myself. Seems, like I'm reading the same thing over and over...before, I can even gather what I'm reading.

Any advice...thoughts would be so welcomed.
Thank-you...so much in advance.
Oh...would also like info concerning lab's in Canada.
We do have yet another new endo appt. coming Aug. 5.....
We will be going with lab's in hand.
Could this be the one? Please, let it be so!

[Barb135]

We all have to vent once in a while and I know from my own experience how frustrating doctors can be.  I had one who kept me ill for months because he would only treat based on TSH, so as soon as my TSH dropped down, he started taking away med, even though my hypo symptoms were getting worse.  

It was only thanks to a wonderful ENT, who realized what I was going through and got me the proper testing and gave me a referral to an endo.  Of course, the pcp who kept me ill, got kicked to the curb and I now have another; still tried to treat me based on TSH, but at least he listened when I explained that he can't do that and why.  Besides, my endo handles my thyroid med -- no one else is allowed to change my dosage; I won't let them.

I will look forward to seeing the new labs; sure too bad about the Free's - they will be of very little use.  

Did you know that you can order those tests online?  If you go to healthcheckusa, you can get a TSH, FT3 and FT4, for about $85.  Not covered by my insurance, but could be by some.  It was worth the $ to me, though.

[yepthatsme]

No...FT's...believe it or not...doctor's around here only want to go by tsh, and T's.
I know they are useless...
It has been so aggravating trying to find a doctor. My DD insurance isn't the best.
Very limited. You can't find a doctor here in town who will rx Armour. Her last doctor
did...but, he wasn't in her list of provider's. I paid out of pocket. DD is online with schooling for medical billing, & transcription. It get's expensive...even, to get her lab results...we have to make another appt. and pay his office visit again. You want a copy...$25.00. Va. is not a right to know state.
Her last doctor wasn't doing anything, to help her...just a big blow off. He did push his current book...I just want to see some action...not read a book.
We were both hoping he would help...being listed in "top thyroid doctor's" in our state.
We have 2 adult children living with us....and 2 young grandbabies, that we help to support. It was useless...throwing money at him...he did pretty much nothing.
It really makes me angry....to think these doctor's gave an oath, and don't give 2 cents.
I would like to have a doctor take an active interest, if...only for 30 minutes...& help both my DD's find balance...to work on keeping that balance steady. Instead...it feels like..."herd them in herd them out". It would be nice to be treated like a human being. At this point...even if....they have suggestions, I come home and start reading/asking if, I don't know.
Sorry for the vent....it's just so...so aggravating.

Yes...I will surely ask about the Vit. D & B 12.

Barb...thank you so much for your time...you can't even begin to know...
How much it is appreciated.
I'll post the lab's when they come back, in about a week.
Bless you.

[Barb135]

I'm happy to hear that she has a new set of blood work coming.  

In your message above, you said :"She has other labs, they were just for tsh, t4, t3...nothing that could give an informed view."  At the risk of sounding like a broken record, are those FREE T4 and FREE T3?  Usually, when we don't see it written with the "free" in front or "FT", we assume it to be total, which is obsolete and of very little value.  

More importantly, the TSH, FT3 and FT4 do give an informed view, since they are the most telling tests, and always the ones we will ask about first, because those are the ones, particularly, the FT's, that correlate best with symptoms.   TSH, by itself, does not cause symptoms; it's the lack or excess of FT3 and FT4, that indicate hypo or hyper; of the two, FT3 is much more important because it's the biologically active hormone and is used "as is".  FT4 must be converted to FT3 prior to use by the body.

Yes, since she's doubled her dose of vitamin D, it would be best to be retested to make sure she doesn't end up with too much.  The vitamin B12 is also important, as deficiency can cause fatigue, tingling/numbness in the hands/feet, etc and if left untreated, can cause permanent nerve damage.  

Please do post her new labs as soon as you get them, will be interesting to see where she is now.  

[yepthatsme]

These were the first set of test's ran in 2008.

I realized they were old...but, thought maybe, you could tell from them.
She has a new set coming, I will post when we get them. She has other labs, they were just for tsh, t4, t3...nothing that could give an informed view.
Yes, I will be going with her.
She has signed up here...I'm so glad she is getting more involved.

She was only taking OTC 2000 mg of Vit D. I'm sure that's not even the tip of what she
needs.

Yes, I talk with the GP about the B12 & another D test.

I'll be posting again soon with the results.

Thanks, so much for taking the time to post. I so appreciate your time and energy.

[Barb135]

I don't understand -- you said:
****************************************
"The results I have are from her first endo, in 2008.

FT4                0.92      0.58-1.90
TSH 3rd Gen   1.24 "
****************************************
But you posted these results from Jan 2010:
Thyroxine (T4) Free, Direct, S   1.35     0.82 - 1.77
TSH  1.070      0.45 - 4.500

If the doctor had done a "cascading" lab order, the Free T4 would not have been done because the TSH is well within the reference range.  
*****************************************
Thyroperoxidase AB is the same thing as TPOab and the result clearly indicates Hashimoto's......

Thyrotropin Receptor responds to TSH, which stimulates the production of thyroxine  (T4) and triiodothyronine (T3).  This isn't a test we see very often......and I'm not even sure of its significance.  I mean, I know what it is, but I don't know why they did it.  They would have served the purpose much easier/better if they'd simply tested for Free T3 and Free T4 - probably would have cost less too.......(aha, that's why they did it)

Thyroid Stimulating ------- ???  This could be "thyroid stimulating hormone" (TSH) or Thyroid Stimulating Immunoglobulin (TSI)............ TSH stimulates the thyroid to produce either T4 or T3 hormone;   TSI is the test used to diagnose Graves Disease.......  either way, the results are within normal limits, so that would indicate that she doesn't have Graves Disease (or didn't at that time).

Thyroglobulin AB (TGab) - results over the reference range also indicate Hashimoto's. Hers are right at the top limit......

Either (or both) TPOab and TGab can be used to diagnose Hashimoto's.  She certainly has the TPOab and the TGab is "top of the line".........

All of that said -- if those results are from 2008, they are totally of no use for a diagnosis today.  Results for these parameters are not "static" - meaning "you test once and that's the way it will be from now on"........... NO -- a lot of things could/would have changed since 2008; even since January of 2010.  

She needs to have ALL of these tests repeated.... That's TPOab, TGab, TSH, Free T3, and Free T4.  Insist on FT3 and FT4 -- go with her to the doctor, if need be and make sure those get on the order.

I'm not sure what "doubling her dose" of vitamin D entails....depending on the dose she's currently taking, it may or may not do any good.  We've had members who have been on prescription doses as high as 50,000 mg/week for limited amount of time.  Vitamin D is a fat soluble compound, so will build up in the body and is toxic if overdose occurs; it must be monitored carefully.

I might also suggest that you have her vitamin B12 levels tested.  There's a possibility that she could have pernicious anemia, which would require routine injections (usually once/month). This causes some of the same symptoms.   I have pernicious anemia and my levels don't come up like they should; therefore, I have to self inject every 2 weeks, rather than the "normal" once/month......some inject weekly, but since my levels are only slightly less than mid range, my doctor said they were "normal" wouldn't let me go weekly, in spite of the fact that B12 is water soluble and doesn't become toxic, like vitamin D does.  

Hope this helps answer some more of your questions.............

[yepthatsme]

"Some people have both Graves and Hashi's antibodies".  

I didn't realize this.
DD has been hypo for about 3 1/2 years....since, before she became
pregnant with her daughter. Then, the switch this time after the ear infection's & sinus issue's. Would the predinsone shot, have had any to do with that?

Like I noted the doctor who took the last labs knows very little concerning thyroid.
He's willing to help...I wrote down the last labs...but, he wrote cascading hoping to cover the FT's. The lab kicked it out due to normal TSH.

The results I have are from her first endo, in 2008.

FT4                0.92      0.58-1.90
TSH 3rd Gen   1.24

Thyroperoxidase AB     378.8         0.0 - 8.9
Thyrotropin Receptor    <5              0 - 15
Thyroid Stimulating      <1.0            0.0 -1.3
Thyroglobulin AB           3.9            0.0 - 3.9

DD was told to double up on her supplement of vitamin D.
That's not having any effect on the Vit. D levels, not even a drop in the bucket.
Anything you can suggest that would be good to bring up her levels?
Yes...she has the myriad of symptoms, including muscle pain, weakness, fatigue, lowered immunity, etc.
Even her GP would be willing to write her a rx...as much as I've read to date....
there is so much more that I need to know. I've tried to keep up...it's just not been
enough to help. :(  
That's the reason I'm here, to learn more.

She goes for her monitor, & blood tests tomorrow.
The list I sent for lab's were all listed individually with test #'s for each.
New lab's in about a week.

Thank-you so much for your response...you can't even imagine how thankful I am.

[Barb135]

I'm not very familiar with hyper, so can't say much about that.  

I do notice though that the doctor did run the Free T4, which actually looks good, as does her TSH.  Really need to get the Free T3 done, though, as you already know.

Did her doctor by any chance put her on any kind of vitamin D supplement?  Vitamin D deficiency can cause a myriad of symptoms, including muscle pain, weakness, fatigue, lowered immunity, etc.

Do you know which antibodies were positive?  Some people have both Graves and Hashi's antibodies.