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My journal with Hypothyroidism/Fibro/CFS/adrenal insufficiency

Sep 02, 2010 - 2 comments
Tags:

fibro + CFS

,

CFS

,

fibro

,

adrenal

,

adrenal insufficiency



My search for answers began in April 2003. I was 16 yrs old. My period had disappeared for about 12 months and only returned once in February and some spotting in March. I lost about 20 lbs and looked sickly. I had no energy, couldn’t stay at school for more than half a day because I couldn’t walk down the halls without getting completely wiped out. Local doctor said I had mononucleosis. He sent me to an endocrinologist who tested my TSH which was 3.6 uIu/mL.The range at that time was still 0.5- 5.0. He would not put me on any thyroid replacement. He also did a fine needle biopsy which showed 3 small (2-3 mm) hypoechoic nodules on left lobe and unexpectedly, a missing right lobe (hemiagenesis). I only have one lobe of my thyroid. I do not know if I was born that way or what? The nodules were benign. He also ran a thyroid anti-TPO test which was 14 IU/mL.
I got as much rest as possible over that summer and was feeling better.

I had a so called relapse of “mono” my first year of college in 2006. Sometime in 2006, my local primary doctor finally diagnosed me hypothyroid and put me on Levoxyl 50mcg. I had no significant improvement of hypo symptoms. I was still feeling bad in June 2007 and my doctor said it was “mono” again. EBV Acute Infection Antibodies were elevated: EBV Ab VCA, IgM was 142 U/mL (range 0-99). EBV Early Antigen Ab, IgG was ok at 60 u/mL (range 0-99). EBV Ab VCA, IgG was through the roof at 2092 U/mL (range 0-99). Cholesterol was also high (219 mg/dL), high LDL (147 mg/dL) and low HDL (39 mg/dL) at this point and has been ever since except once. I was on 50mcg until my TSH on Dec 28, 2007 was 9.81 uIU/mL (range 0.34- 4.82), so my dosage was increased to 75 mcg Levoxyl daily.

Re-tested thyroid in October 2008 because I was feeling bad. FT4 was 1.06 ng/dL (range 0.71-1.85). TSH 2.02 (range 0.34-5.60).

In January 2009 I went to the doctor for a sinus infection. I went through about 3 round of antibiotics with still no improvements.
Re-tested thyroid in April 2009.
TSH 0.65 (range 0.34-5.60)

Went back to the doctor in May because I still felt bad but they said I had no bacterial infection to treat. Did the following tests and no changes were made.

Test for EBV May 2009 indicated I was positive for virus. No surprise there.
EBV Nuclear Antigen Ab, IgG >8.0. (range 0.0.- 0.8)
EBV Ab VCA. IgG was high 6.1 AI (range 0.0- 0.8)

Thyroid test in May 2009 were in range.
TSH 0.566 uIu.mL 9 (range 0.45- 4.50)
FT4 1.42 ng/dL (range 0.61- 1.76)

I was still feeling bad and struggling to make it to summer classes from May- August. Found two doctors in Birmingham, AL – one was a chiropractor, Dr. Murphree, who treat CFS/fibro and thyroid issues and one is a M.D., Dr. McMinn, who practices “wellness medicine.” They believe in the other theories that thyroid cannot always be cured by synthroid. Praise the Lord I found someone who believes that I really do feel bad.
Went to Dr. Murphree in July 2009. RT3 test was high 37ng/dL (range 11-32).
FT3 was ni range 3.5 pg/mL (range 2.3-4.2)
Thyroid Peroxidase Antibody was in range 38 (range <=60)
Vitamin d, 25-Hydroxy was sufficient at 63.0 (range 30-100)

Also completed a 24 hr saliva cortisol test. Results are as follows:
6:00- 8:00 a.m. depressed level of 6 (range 13-24 nM)
11:00 to noon  normal level of 10 (range 5-10 nM)
4:00 to 5:00 p.m. lower end of normal 3 ( range 3-8nM)
10:00 to midnight elevated level of 7 (range 1-4 nM)
DHEA depressed at 1 (range 3-19 ng.mL)

Also was tested for fungal overgrowth and bacteria in stool.
No yeast was isolated. Moderate Bacterial overgrowth detected.


Graduated college in August after a strenuous summer semester along with a stressful relationship with a now ex-boyfriend. I started graduate school the day after graduation. I was really worn out and by October could hardly walk to class. I decided I had to take a medical withdrawal. Primary care doctor would only say I had “mono” again and to take vitamins.

Thyroid test in Oct 15, 2009 by Dr. Blackmon
TSH was high 9.370 uIU/mL.

In October 2009, had a ultrasound of thyroid and liver done. Thyroid scan showed the tiny cysts on left lobe, still measuring 2-3 mm. So they haven’t grown any. Still showed that I had no right lobe.

Thyroid test in Oct 22, 2009 by McMinn Clinic.
TSH 4.340 uIU.mL (range 0.45- 4.50)
FT4 1.55 ng.dL (range 0.93- 1.71)
Vit D, 25 Hydroxy 54.3 (range 32.0-100.0)
RT3 352 pg.mL (range 90-350)
FT3 2.8 (range 2.0- 4.4)

TSH was on the high side. Reverse T3 was super high and Dr. McMinn said this indicated I have a conversion problem. My body doesn’t convert the T4 medication to T3 correctly, instead it makes RT3 which reduces that amount of beneficial T3 in my body.

MDL done in October confirmed I am positive for EBV, Human herpesvirus-6 (HHV-6) and negative for Lyme disease.
Spectracell lab test indicated I am low in antioxidants.
Its repletion suggestions were:
600 mg N-Acetylcystein daily to replete Glutathione and Cysteine levels.
200 IU Vit E. daily
50 mcg Selenium daily
30 mcg CoQ10 daily with a meal
50 mg Lipoic Acid daily
250 mg Vit C daily

Dr. McMinn started me on 15 mg Hydrocortisone daily- 10 mg in a.m. and 5 mg at noon. I tried Sustained release T3 from a compounding pharmacy from Oct 22- Dec 23, 2009 with no good results. He then switched me to cytomel on Dec 24, 2009.



At the present time, I am a 23 yr old female who has been being treated for hypothyroidism/adrenal insufficiency, fibro/CFS, with cytomel, HC, and synthroid.

My main symptoms are daily fatigue and extremely achey neck and shoulders as well as what I call "lead legs" when I just get totally drained very suddenly.

TSH (range 0.450-4.500)
Oct'09-      4.340uIU/mL
April '10-    0.07
July'10       0.082

FT4(range 0.82 - 1.77)
Oct;09       1.55 ng/dL
April '10      0.17
July'10        0.60

RT3 (range 90-350)
Oct '09      352 pg/mL
April'10      44
July'10       166

FT3 (range 2.0- 4.4)
Oct'09        2.8 pg/mL
April'10       15.4
July '10       6.7

Ferritin (range 13-150)
Oct '09       32 ng/mL
April'10       18
July'10        36

I felt good from late Feb to the end of April 2010. At that time I was on 50 mcg cytomel taken all in one dose about 7a.m. along with 10 mg of HC at 7 a.m. and 5 mg at noon. I did have some "hyper" symptoms of heart pounding and feeling hot so I was concerned I was taking a little too much cytomel.

I had blood tests done at the end of April that my doctor said indicated I was taking too much cytomel because my FT3 was 15.4.(see above chart). He decreased my cytomel from 50 to 25 mcg daily and added 25 mcg synthroid. We also decreased my HC from 15 mg to 10 mg bc I had gained some weight from a really overwhelming increase in appetite and I thought the HC may have been causing that.

After this decrease I started feeling super tired and achey again. Doctor said I could increase cytomel from 25 to 35 mcg and stay on 25 mcg synthroid. This increase may have given me slightly more energy but the aches and pains were still very prevalent along with the post work "crashes" where all I did was lay on the couch in exhaustion and pain.

Got my blood test results back from July 2010 and doc was kinda unsure how to proceed. Said he was going to treat me for my symptoms instead of results since TSH was really low and FT3 was still high even though I'm still feeling hypo.

On August 23, 2010, He let me increase my cytomel from 35 to 40 mcg but I felt "hyper" so I have since lowered it back to 35 mcg. I also tried 37.5 mcg but it still made me feel hyper. But at 35 mcg I feel hypo.

I’m at a point now where I don’t know what to do next. Based on my levels, some people say to increase my synthroid and decrease cytomel. I just want some long standing relief. I pray to God that I will find it. If you have any suggestions or comments please feel free to personal message me or write on profile. I welcome and suggestions and support. Thanks again.


Comments
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by phonefixer, Sep 02, 2010
You are too young to have all these problems. I looked for 10 years to get help with my Hep-C that then turned into stage 4 Cancer. That was 2 years ago, I always had the correct doctor, its just the medicine had not caught up yet.
I also found that the food that we eat play a very large part in how well we are.  Taking vitamins are like guess work, what do you need and just how much. I am now cancer free and the Hep-C count is getting lower every day. I have energy to spare and fill 20 years younger. Just look at my profile pictures. Look for a good nuturitional product in a liquid state that your body will get the full effects of.
Good look in your search, I know one is right there if you keep looking.

phonefixer


Avatar_m_tn
by jpron, Mar 15, 2011
Have you ever checked out the 'Stop the Thyroid Madness' website?? I STRONGLY suggest that read.

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