Nick, please--update, need help

[Guest guest]

I have not posted here in a couple of weeks, as I have been so ill and so frustrated. If you will give me your impression of all this, I will be very grateful, as I really do not know how to proceed, or whether to just give up. I posted this yesterday, but would really like your opinion. Thanks.

Peggy

Here is a summary of my history, as well as my current situation, with a repeat of all labs. I know it's long, but I thought if I were thorough I might answer any of your questions in advance:

I have lived with CFS since 1984. No diagnosis was ever made, until one doctor tested me for Lyme disease in 2000. I had it, but treatment made no impact on my CFS whatsoever. I was tested for thyroid problems many times over the years, and all doctors assured me I had no problem, until my current doctor started treatment based on labs of 12/4/09. I understood here that these labs indicated severe problems that would explain the CFS, and that treatment should significantly restore my health. I began treatment in January, 2010, and have felt consistently worse since then, with a sharp decline beginning in late March, a week after a series of iron IV's, and the day after increasing HC from 10 mg/day to 20 mg/day.

Treatment has been as follows: I started T3 and HC in January, 2010. I began with SR T3 but switched to regular T3 after I had a series of 3 iron IV's in late March to raise ferritin. I gradually increased T3 to a high of 45 mcg/day. I'd been on 10 mg/day HC starting in January, increased to 20 mg/day on 3/24/10, and kept increasing throughout April to 25, then 30, then 35--because I understood that in order for the T3 to work, I needed first to support the adrenals. As I felt increasingly worse throughout that time, I finally started weaning back. "Worse" means weak spells, extreme fatigue, intermittent high blood pressure, intermittent severe insomnia, profuse intermittent sweating, and being virtually incapacitated. All these symptoms were completely new to me except chronic fatigue, which has also gotten worse during this period.

I continued on T3 and HC throughout this time, always believing that things would get better. I continued to decline and on 5/10/10 my doctor prescribed Naturethroid to replace T3. He felt since both my T3 & T4 were very low, I might benefit from a full-spectrum thyroid replacement instead of T3 only. He also felt my symptoms were consistent with my low hormone labs, and prescribed bio-identical estrogen & testosterone, as well as prometrium at 100 mg/day. He recommended 10 mg/day HC as I hadn't done well at any time on higher doses.

I am currently on 1 grain/day Naturethroid, 10 mg/day HC, bi-est, testosterone, and 100 mg prometrium. Supplements are: cod liver oil for vitamin A, B complex, 3 grams/day vitamin C, 5000 IU/day vitamin D, 400 IU/day vitamin D, calcium, magnesium, CoQ10, 5 htp, digestive enzymes, HCl with each meal. I have been graphing my temps since mid-January; the graph is completely up and down, with daily averages 98.0-98.7.

Since my blood pressure once went as high as 199/91, my doctor referred me to a cardiologist, who did a complete workup including testing for an adrenal tumor. All tests were negative. He told me yesterday that unnecessary HC and thyroid hormones can cause all of the symptoms I'm having, and that my current problems are physician-caused. He advised me to wean completely off all HC and thyroid treatment and to see an endocrinologist. I did see an endo initially back in February for a second opinion. She told me I had no thyroid problem, all of the treatment I was receiving was inappropriate, would do harm instead of good, and advised me to stop treatment. So I am not encouraged about the prospect of seeing yet another endo, but after almost 5 months of treatment I am in worse shape than I was when I began. My current doctor is not a thyroid specialist or an endo--he specializes in treating CFS. This means that yeast problems have been addressed, and my diet is very high quality. After 5 months of attempting to treat RT3 & adrenal problems, I am about ready to give up. My quality of life wasn't great before I started treatment in January, but it's way worse now, and I just don't know how--or even whether--to proceed with this.

Here is my lab history:

Original saliva labs from 11/08, before I started thyroid/adrenal treatment:cortisol, saliva:5.6 at 6:00 a.m. optimal range 7:00 a.m.: 7.0-10 ng/ml 2.1 at 11:00 a.m. optimal range noon: 3.0-6.0 ng/ml2.6 at 5:00 p.m. optimal range 5:00 p.m.: 2.0-4.0 ng/ml1.0 at 10:00 p.m. optimal range 10:00 p.m.: 1.5 ng/ml

Labs from 12/4/09, before starting T3; RT3 ratio 4.8:

TSH 2.1 (2.0-4.4 pg/mL)

T3, free, serum 2.1 (2.0-4.4) pg/mL

RT3 434 ( 90-350) pg/mL

T4, free (direct) 1.32 (0.82-1.77) ng/dL

ferritin, serum 15 (10-291)

B12 926 (211-911)

TPO <6 (0-34 IU/mL)

testosterone

serum 30 (6-82 ng/dL)

free (direct) <0.2 (0.0-1.8 pg/mL)

CD3+CD25+Lymphs 29.00 (4.93-25.85)

IGF-1 113 (75-212 ng/mL)

Labs from 2/23/10, after a month on SR T3 at 30 mcg/day, oral iron, HC at 10 mg/day. This is before I had the iron IV's; RT3 ratio has risen from 4.8 to 15.6:

TSH .72 (.04-4.0 uIO/mL0T3, free serum 2.7 (2.0-3.5) pg/mLRT3 173 (90-350) pg/mLT4, free 0.97 (.89-1.76) ng/dLferritin, serum 25.7 (11.1-264.0) ng/mL

B12 >1000 (193-982 pg/mL)

folate >24.0 (3.8-17.0 ng/mL)

Labs from 4/5/10 (after a series of 3 iron IV's):

TSH : 0.769 (0.450-4.500)

Free T3 : 3.4 (2.0-4.4)

Free T4: 0.90 (.82-1.77)

Reverse T3: 196 (90-350)

Ferritin, serum : 191 (10-291)

Aldosterone/ Renin Ratio: 48.0 (0-30) high

potassium: 4.6 (range 3.6-5.0)

Labs from 4/27/10:

thyroid:

T4, free, direct .56 (.82-1.77)--a month ago it was .90, same reference range

TSH 0.105 (0.450-4.500)--a month ago it was .769, same reference range

T3, free, serum 2.3 (2.0-4.4)--a month ago it was 3.4, same reference range

reverse T3 129 (90-350)--a month ago it was 196, same reference range

ratio 17.83 a month ago it was 17.34

Iron panel:

TIBC 250 (250-450)

UIBC 150 (150-375)

iron, serum 100 (35-155)

iron saturation 40 (15-55)

ferritin 113 (13-150)--a month ago it was 191, range 10-291