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Still waiting for a diagnosis - Finally going to Endo on 6-9-08

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Old 05-31-2008, 05:01 PM   #1
Join Date: May 2008
Location: Johnston, SC
Posts: 5
BethJ2008 HB User
Question Still waiting for a diagnosis - Finally going to Endo on 6-9-08

I have been reading through these posts and am excited to see such expertise with reading into the lab results along with the symptoms people post. I like many others know that something is not right with my body and have been searching for answers from as far back as 2006. It seems as the months / years pass I keep getting additional symptoms that the doctor's want to list as possible depression or peri-menopause.

My hopes are that I can get some information from the group before I go to the Endo on Monday, 6-9-2008. I know I am listing probably to many detail's, but I want to give the veteran's on the boards a full picture.

I am a 42 year old - female - Not on birth control.
Diagnosed with Hereditary Hemochromotosis on 9/2005. Was tested because of sisters, aunt and cousins being positive.

The only medications I am on are zrytec - allergies, but was just given low dosage blood pressure prescription on 5-28-08, because of swollen ankles and wrists and elevated blood pressure. My blood pressure has always been on the low side all my life, until this past month.
Take multi-vitamin, Glucosomine and Fish Oil pills daily.

Family History referencing Thryroid
Mother - Hypo, Grandmother had goiter and thyroid removed when she was in her 40's.
2 first cousins have Hashimoto Thyroiditis, I found out middle of May 08 that they had this.

Lab results-I am going back to 2006 for a baseline / reference

May 2006
Main complaint - Tired, weight gain and just not myself
On Birth Control - IUD Mirena w/ hormones during labs.
Iron - 160 (range 35-175)
Ferritin - 29 (10-232)
Transferrin - 286 (188-341)
TSH - 3.98 (.40 - 5.5) From the posts this range is wrong, but from my report.

Had IUD removed in August 2007. Thought hormones may have been causing problems with weight gain.

September 2007
Symptoms - Joint pain, hair loss, fatique, difficulty focusing and thought process, diminished sex drive. Had a Gall Bladder attack - Tests showed sludge. Have not had an attack since first one.
CMP Panel results all in range
Iron - 133 (range 40-175)
Iron Binding Capacity 307 (range 250-450)
Iron Saturation 43% (range 15 - 50 % - Calc.)
Ferritin - 66 (10-232)
TSH, 3rd generation - 1.98 (range .40 - 4.50)

March 2008
Symptoms - Sensitive to the cold, Numbness in hands, wrists and arms during the night, 3-4x every night. Tingling during the days at time. Weight gain, joint pain (feel very old when I wake up), hair loss, fatique, difficulty focusing and thought process, no-sex drive. Sporadic swelling around eyes and face puffy. Started to show swelling in left wrist.
Labs - March 10, 2008
CMP Panel results all in range
TSH - 2.36 (range .40-4.50)

Doctor's reply is that your labs all came back normal. They wanted to put me on depression meds, thinking I am peri-menopausal. Waited for them to make appt to test numbness in hands and refer me to an Endo. Endo would not see me, test results normal. Switched to an IM doctor.

Lab's - March 18
ANA screening Negative
Iron - 103 (range 50-150)
Iron Binding Capacity 440 (range 250-450)
Iron Saturation 23% (range 20 - 50 % - Calc.)
Ferritin - 71 (8-96)
TSH - 2.13 (range .40 - 4.00)
T4 - 7.5 (range 4.5-12.5)
T3 Uptake - 29 (range 24-35)
Testosterone Free - 1.2 (range .0-2.0)
Total Testosterone 20 (range 0-80)
Vitamin B12 - 998 High (range 193-982) Doctor not concerned.

EMG test shows beginning stages of Carpal Tunnel. I have never had this problem before. Hashimoto shows as a sympton.

I informed my IM doctor of my findings of the hashimoto with my 2 first cousins and requested that she refer me to an Endo. Her response is that my labs are normal, but I could find one on my own.

Not sure how I did this, but I was calling Endo's and actually had the Doctor on the phone. He said the TSH ranges that are being used by labs are like stating that the average weight range for a person is 100 - 1,000 lbs. I new then that I was not going crazy thinking something is wrong with me.

I found and Endo that could get me in as a new patient and sent him all of my lab work for the past few years. I had blood drawn on 5-23-08. He wanted Prolactin, Free Testosterone, IGF-1, Cortisol, DHEA and Free T4 test done. I have not seen my results yet, but my appointment with him is on 6-9-08.

As I mentioned earlier that I am now taking Blood pressure meds after seeing my IM on 5-28-08. The swelling in my ankles and wrist is getting better, but I feel as though she just treated the symptom and not what was causing the swelling in the first place. The IM said she was curious on what the Endo says. She reminded me once again that my thyroid labs are all normal. Once I have my appt with the Endo and get his opinion, I will be looking for an IM that has time to listen to the patient and not just lab results.

Looking forward to responses and encouragement from the group.

Beth J

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Old 06-01-2008, 01:10 PM   #2
Senior Veteran
Join Date: Jul 2007
Location: South Carolina, USA
Posts: 797
Re: Still waiting for a diagnosis - Finally going to Endo on 6-9-08

Beth, looks like you found a doctor who is on top if it!

I see they never tested your free T3 & free T4!

Optmal for those is in the middle to UPPER part of the "Normal range", NOT the bottom!

Did you say they tested your thyroid antibodies?

I no longer go back to any doctor who will not answer my questions completely.

Let us know what happens after you see this doctor!
25 years feeling worse every year on Synthroid & 13 months feel good on Armour Thyroid.

Old 06-01-2008, 01:57 PM   #3
Join Date: May 2008
Location: Johnston, SC
Posts: 5
BethJ2008 HB User
Re: Still waiting for a diagnosis - Finally going to Endo on 6-9-08


Thanks for your comments. They are doing a Free T-4, should have the results when I go to see the Endo next week. No one has every said anything about testing the Thyroid antibodies.



Old 06-03-2008, 06:46 PM   #4
Join Date: May 2008
Location: Johnston, SC
Posts: 5
BethJ2008 HB User
Re: Still waiting for a diagnosis - Finally going to Endo on 6-9-08

I was reviewing my labs and forgot to list the Triiodothyronine Total which I just found out is the T3. I have figured out the percentages for T3's and T4. Did I do the calculations correctly? Can someone give me some indication of any problems you see with levels and percentages? I have more lab's listed along with symptoms on the first post.

5-18-2008 Labs
TSH - 2.13 (range .40 - 4.00)
T4 - 7.5 (range 4.5-12.5) 37.50%
T3 - 132 (range 72-170) 61.22%
T3 Uptake - 29 (range 24-35) 45.45%

Testosterone Free - 1.2 (range .0-2.0)
Total Testosterone 20 (range 0-80)

New at this and trying to learn more before appt.


Old 06-15-2008, 11:51 AM   #5
Join Date: May 2008
Location: Johnston, SC
Posts: 5
BethJ2008 HB User
Unhappy Re: Still waiting for a diagnosis - Finally going to Endo on 6-9-08

Well I finally had my appointment with an Endo, that actually specializes with reproductive issues and hormones. He was recommended by a co-worker and I did not need a referral from my doctor, that would not give me one anyway.

He said my labs indicated a very low testosterone level. Which would explain why I have no sex drive. After an internal exam, he felt a mass on the left side of my uterus. He did not give any details other than that. I also have trace amounts of blood in my urine, which I also had 2 years ago. He also mentioned that I might have insulin resistance.

I am have an appt. first thing Tuesday, 6/17 for a sonnagram and an update on my most recent labwork that he requested. Consists of: Hemoglobin test - HbA1c, Insulin levels, Progesterone and CA125 (cancer marker).

Needless to say I was quite surprised to hear about the mass, as I normally do not have cysts and my periods are regular. I seem to work like clockwork in that area and never suspected any problems. Started looking into the PCOS (Polycystic Ovarian Syndrome) area, but that does not make sense, because normally people have high testosterone levels. Kinda scarey, considering I thought this was my thyroid giving me problems.

At least I have found a doctor that is working to find a solution.

Any advice from others?

Old 06-15-2008, 12:17 PM   #6
Join Date: Jun 2008
Location: Utah, USA
Posts: 313
DR37 HB User
Re: Still waiting for a diagnosis - Finally going to Endo on 6-9-08

Hi Beth! I was diagnosed with PCOS in '99. Yes, what you say is true, most of us have high testosterone lvls rather than low. AND we tend NOT to ovulate, which doesn't seem to be a problem for you. However, IR (insulin resistance) is KEY to PCOS, so that's definitely worth getting checked out in more depth. To really diagnose it, I think you have to have a laparoscopy. I've had two, along with lasering for my endometriosis, both done by OBs. Let me know if your Dr. ends up going that route and I'll tell you more about it.

Another thing to consider is that PCOS can often lead to thyroid problems. Don't know if it's the "chicken or the egg" thing, but I wonder if that's why I developed thyroid problems. So it would be a good idea, in my opinion, to leave no stone unturned and check everything. Best of luck and keep us posted!

Old 06-16-2008, 09:43 AM   #7
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Re: Still waiting for a diagnosis - Finally going to Endo on 6-9-08

You also need to get the thyroid Hashimoto's antibodies tests run.

Lab codes: TPOAb and TGAb.

I also noted that the Thyroid hormone levels your lab performed were the TOTAL T3 and T4 tests.. Not the Free FT3 and FT4 tests that you really want. So hopefully the Endo noted this as well and is moving forward with those tests as well. I wouldn't rule out Hashimoto's without the TPOAb and TGAb tests. Your other MD ran an ANA. You can have Hashi's and no ANA.

If we learn by our mistakes, I am working on one hell of an education.

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