# WTF - seriously...



## clambert1273 (May 8, 2013)

Sooooooo had a VA compensation exam on 4/29/13 (for disability claim). Doc calls yesterday to tell me my TSH is high (no kidding).. so check this out:

4/29/13
TSH 6.71 (don't have ranges -she wasn't even supposed to call me)

A few days later after that appointment I go to my regular doctor to have him fill out some paperwork. He wants to test me then so I said fine. Found out all he looks at is TSH (go figure)

5/2/13

TSH 9.35 (again no ranges)
Free T4 1.09 (.58 - 1.64)

I spoke to them wanting another appointment to conduct more bloodwork since I found in old VA records a positive test antibodies that was ignored. I get told that he will only look at TSH (super). I ask if I can have the bloodwork anyway - nope. I said "fine then can I at least get a referral to an endo" (apparently I can't do it myself here even though insurance allows) and I get "oh I will ask" then "Oh your Vitamin D is still low so he wants you to take Vitamin D3 50,000 twice a week" .. Come back in 6-8weeks for bloodwork. Oh and he upped my synthroid to .2mg

I then get told "you should feel better after the new dose and vitamin D"..

So let me see - I haven't had a normal lab in almost 13 years and I am supposed to magically feel better. I trusted this doctor (liked him a lot) and now this so now I am stuck.. I have been sitting here crying, my poor husband doesn't know what to do and I don't know where to go. No one will listen to me at all...

Sorry /rant


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## Octavia (Aug 1, 2011)

I'm sorry you are not getting what you need from this doctor. You do have the option of ordering your own lab tests, but you'd have to pay for them out of pocket. There are some companies/websites that will do this.

So...you're now on 200 micrograms of Synthroid? Wow...that's a very high dose for someone who still has a thyroid. You might as well not have a thyroid...it is clearly not doing anything for you.

What was your previous dose before the switch to 200 (or .2, as you stated)?


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## clambert1273 (May 8, 2013)

.175mg I am sooooo tired... A LOT I feel like crap day in and day out. Half the time if it were up to me I probably wouldn't get out of bed..

I have no idea what to do at this point.. Wait for my VA appointment in July I suppose..


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## Andros (Aug 26, 2009)

clambert1273 said:


> .175mg I am sooooo tired... A LOT I feel like crap day in and day out. Half the time if it were up to me I probably wouldn't get out of bed..
> 
> I have no idea what to do at this point.. Wait for my VA appointment in July I suppose..


Can you go out of pocket?

You can get TSH, FREE T3 and FREE T4 here for starters.

http://www.healthcheckusa.com/

and then see if you can find a clinic

find a clinic near you
http://findahealthcenter.hrsa.gov/Search_HCC.aspx


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## Octavia (Aug 1, 2011)

Just to make sure... you are taking your Synthroid on an empty stomach, and waiting 30-60 minutes to eat anything???


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## clambert1273 (May 8, 2013)

Yup.. I take it at 5:00am and I don't eat until lunch *sigh*

I took a recommendation for a doctor here - he doesn't accept insurance so I am out of pocket for $250 on that visit; however, she said labs will take the insurance so I am good there.

Apparently this guy is really good - takes his time and knows his stuff. I am game to try anything at this point. She said he has dealt a lot in Thyroid issues and even she knew exactly what I was talking about over the phone and was appalled that no one has taken the time to even diagnose me except "hypothyroid".

I went from 6.71 to 9.35 in 3 days... something here is not right and I am no doctor (but I did study rocket science LOL)


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## Andros (Aug 26, 2009)

clambert1273 said:


> Yup.. I take it at 5:00am and I don't eat until lunch *sigh*
> 
> I took a recommendation for a doctor here - he doesn't accept insurance so I am out of pocket for $250 on that visit; however, she said labs will take the insurance so I am good there.
> 
> ...


I don't think you are converting.

Here is stuff that would be good to know.

Understanding the Thyroid: Why You Should Check Your Free T3
http://breakingmuscle.com/

Dr. Mercola (FREES)
http://www.mercola.com/article/hypothyroid/diagnosis_comp.htm

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.
http://www.healthcheckusa.com/


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## clambert1273 (May 8, 2013)

well some small update... PCP won't give me a referral to Endocrinologist (says I don't need it because he believes I am "just hypothyroid") BUT did agree to pull the other lab recommendations. I do that on Thursday this week. Will update again with the new results.


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## Octavia (Aug 1, 2011)

Baby steps...I guess.


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## clambert1273 (May 8, 2013)

right lol I am so just dumbfounded... I finally did get my records from them and the lab results...

let's just say my Vitamin D is not pretty...

*So, on 8/9/2011 *

TSH 29.34 (.450 - 4.500)

*10/14/2011*

TSH .866 (.450 - 4.500)

*4/24/12*

TSH 3.94 (.450 - 4.500)

*10/10/2012*

TSH 4.73 (.450 - 4.500)
T4 Free 1.01 (.58 - 1.64)
Vit D 19.0 (32.0 - 100.0)

*Latest on 5/3/13*

TSH 9.35 (.450 - 4.500)
T4 Free 1.09 (.58 - 1.64)
Vit D 16.4 (32.0 - 100.0)

So as you can see.. he really does only order TSH - guess I am lucky he agreed to the new labs for Thursday :\


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## jenny v (May 6, 2012)

Whoa, your Vitamin D is tanked! No wonder you're feeling bad on top of the thyroid issues; Vitamin D deficiency can exacerbate and mimic symptoms of hypothyroid like fatigue, joint and muscle pain, weight gain, etc. Did your doc say what to do about it?


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## clambert1273 (May 8, 2013)

ya.. wants me to order (off Amazon) Vitamin D3 ... my insurance doesn't cover vitamin D (go figure)..


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## StormFinch (Nov 16, 2012)

Did he even bother to mention that your D is in the sub-basement? Not only will a low D attribute to you feeling bad, it can also attribute directly to your thyroid problems. If this doctor didn't prescribe D supplementation for you back in October, and I'm guessing he didn't by your May labs, then it's definitely time for a new doctor. This one has no idea what he's doing.

Edit: Wow, sorry. The board must have hiccupped because Jenny's post and your answer wasn't showing up when I posted this.


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## clambert1273 (May 8, 2013)

Update with the latest....

Since this discussion, I dumped my civilian doctor and patiently waited for a primary care physician at the VA medical center. This was NOT easy as they kept pushing my appointment back and I didn't have it until September 3rd.

FINALLY!! A doctor that listened and notated everything in my record -she ordered massive amounts of bloodwork. In addition, she wants me to have an ultrasound on my Thyroid which is scheduled for October 11. I am currently on .175 mcg of Levothyroxine.

Here are my latests FULL lab results (can we say YAY!!)

TRIIODOTHYRONINE 94.9 ng/dL (76-181) Final T3, TOTAL
THYROGLOBULIN AB <20 IU/mL ("SEE BELOW") Final
THYROPEROXIDASE AB >1000 High IU/mL ("SEE BELOW") Final (notes state normal would be <35 IU/mL)
Vitamin D 25 Hydroxy 20.77 Low ng/mL (30-100) Final
CHOLESTEROL.IN LDL 132 High mg/dL (0-100) Final
THYROTROPIN 1.13 uIU/mL (0.30-5.00) Final (TSH)
THYROXINE.FREE 1.1 ng/dL (0.76-1.46) Final (FREE T4)

*Here are some oddities:*

GLOMERULAR FILTRATION RATE.PREDICTED 79.9 mL/min (>60) Final
"Stage 2 Kidney damage with mild 60-89 decreasing GFR"

UREA NITROGEN 7 Low mg/dL (9-19) Final
FERRITIN 27.6 ng/mL (11-307) Final

Any input would be great. She is having a phone conference with me regarding the labs on the 23rd. She also referred me to mental health to hopefully gain control of the depression issues.

I really liked her and it sucks she is leaving in November


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## Andros (Aug 26, 2009)

clambert1273 said:


> Update with the latest....
> 
> Since this discussion, I dumped my civilian doctor and patiently waited for a primary care physician at the VA medical center. This was NOT easy as they kept pushing my appointment back and I didn't have it until September 3rd.
> 
> ...


Good grief. You are in dire need here. You T3 is in the basement and it makes me wonder how bad the FREE T3 might be.

Interestingly, if you can get your FREE T3 above the mid-range of the range the lab will provide for this test, the depression should lift............big time.

Here is info:

Identifying hypothyroidism's psychiatric presentations
http://www.jfponline.com/Pages.asp?AID=4570

Psychiatric Manifestations of Hashimoto's Thyroiditis
http://www.drrichardhall.com/Articles/hashimoto.pdf

hypo, psychiatric
http://www.biopsychiatry.com/hypothyroidism.htm

And this is very important; if necessary, see if you can get FREE T3 out of pocket at a lab near you!

Understanding the Thyroid: Why You Should Check Your Free T3
http://breakingmuscle.com/health-medicine/understanding-thyroid-why-you-should-check-your-free-t3

Healthcheckusa
http://www.healthcheckusa.com/

And it is super good you are getting the ultra-sound! Your doctor was well worth the wait; I would say!!


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## clambert1273 (May 8, 2013)

Well, I went back to look at the labs to make sure I didn't over a Free T3 and I didn't and considering all she ordered, I wonder if she just forgot. 

I found it interesting since I have been screaming about this for over 10 years that everything just gets worse and the indicators of the kidney functions.

So if you have any insight what I should recommend or say to her on the 23rd (besides Thanks for paying attention to me) I would greatly appreciated.

The TPO AB stands out as a massive high with over 1,000 IU/ml so from my research here and elsewhere definitely indicates I have antibodies fighting something somewhere. I know the Vitamin D, cholesterol and I am presuming the other thyroid tests are Ok?

My research on the kidney function (GFR and BUN) leads me in a not so good path as my BUN to Creatinine ration is only 8.8:1 and it should be at a minimum of 10:1. That is one thing I will be questioning her about along with the vitamin D and cholesterol levels (which I can't get either in control).

She left me (for now) on the .175mcg dosage. Thanks for your input - it is greatly appreciated as always.


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## clambert1273 (May 8, 2013)

ETA: I will ask her about the Free T3 test on the 23rd. No need to pay when I get it from VA (unless it is something they don't do then I will).


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## Velcro (Jul 26, 2013)

Clambert, how much Vit D3 have you been taking? Mine was tanked last year and they had me super dose with 50,000 a week for a month to get it up quickly, then drop back to 5,000 every other day. Now, I'm on 5,000 3 X a week to try and maintain it.

Since you had to order it yourself, did they tell you how much to take?


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## clambert1273 (May 8, 2013)

I know it was only one pill a week... I will have to look at the amount on the bottle.. the DR that told me take that is the same one that wouldn't test me for anything *sigh*

It is up from 16 on the last lab to now 20 (woo right lol) ... I am just tired.. physically, mentally, emotionally. I am sure that when I talk to her again on the 23rd she will recommend her own Vitamin D therapy (or at least I hope :\)


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## Velcro (Jul 26, 2013)

Definitely ask about it because if it's 5,000 or less, with your numbers, that's not much at all to be taking to get it up.


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## clambert1273 (May 8, 2013)

The D3 I have is high grade 50,000 IU ... Should I continue the one pill per week or let her make that decision on the 23rd?


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## Lovlkn (Dec 20, 2009)

clambert1273 said:


> The D3 I have is high grade 50,000 IU ... Should I continue the one pill per week or let her make that decision on the 23rd?


How long have you been taking that dose and when was your last D lab? Your level of D should be in the high end of range -

In order for me to maintain high range after the 12 wks of I took 50K IU weekly for 12 weeks then tried 2K IU daily then 4K IU daily and settled on 5KIU 6 days a week to maintain in the 75 range (32-100).

If my D gets higher than that I deal with anxiety. I would have to imagine low D could be connected to your depression as well as your low T-3.

I cannot stress enough - the need to develop a tracking system of all your lab's. It is the only way I have been able to manage my thyroid issues, Ferritin, and Vit D issues. I also now track my cholesterol and see a direct connection to hypo and higher cholesterol readings.

Thyroid controls so much of your body it's simply amazing.


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## clambert1273 (May 8, 2013)

Oh I have all my labs going back to 2000. Problem is I was left untreated for 6 years then they would only test TSH. The first TPO test came back high and noone said anything then. My cholesterol has been high since 2004, vitamin D has been tanked for at least 3 years.

My last lab was 9/5 and that was the 20.77 result which is higher than the last lab of 16.45

I just didn't know whether to continue or have my new doctor make her own treatment plan since my last doctor didn't want to deal with me.


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## Lovlkn (Dec 20, 2009)

> have my new doctor make her own treatment plan


AND be proactive in what you want addressed. Depending on what route your doctor goes with treatment - you have enough info as far as what you need addressed.

Stress to your doctor the items you want treated and followed up on.

Thyroid disease required the patient to be highly involved int heir care - if they want to ever feel good again.

You need to ask for the 50KIU prescription for 12 weeks - I do not think daily dosing will get you to where you need to be until you reach that point with the prescription D.


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