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New Hashi's with questions/comments

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Old 05-10-2007, 09:46 AM   #1
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Join Date: May 2007
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Clarissa234 HB User
New Hashi's with questions/comments

Hi all.

I was diagnosed with Hashi's 6 wks ago after an annual physical and labs requested by my PCP. My labs showed:

TSH 13.70 mIU/L
Thyroglobulin Antibodies 54 IU/mL
Thyroid Peroxidase Antibodies >1000 IU/mL
Triglycerides 252 mg/dL
HDL Cholesterol 38 mg/dL

I've had labs done practically every year since I was 18 due to history of diabetes in my family, and I've never had an "out of range" reading on anything, although I don't believe I've had TSH or antibodies tested before.

I saw my PCP for a routine physical, but I had been suffering with constantly being overly tired, not sleeping well, swelling legs, hands, knees and face, constipation, overly irritable, out of control PMS, worsening menses, headaches, a fat neck feeling, difficultly concentrating/focusing on work, allergies, acid reflux, feeling the need to yawn when exercising, having difficulty losing weight while dieting and exercising, painful plantar fasciitis and pain in my right shoulder, arm, wrist and hand from computer use at work, mild depression, growing intolerance of or anger with other people, and I was really starting to feel like I was losing my mind. I had even started seeing a mental health counselor because I just couldn't seem to "get it under control". It had been going on for about a year, worsening over the last 6 months. I just thought these were the signs/symptoms of being overweight, having a slow metabolism, aging, depression. I had convinced myself that it was something I didn't have the right to complain about since I'm easily 70 pounds overweight due to my history of eating disorders, fad diets and poor choices.

My PCP started me on 25 mcg generic levothyroxine, advised me that the thyroid was probably causing the HDL to drop and triglycerides to rise, and suggested 20 minutes of daily exercise too. I'm a good exerciser - typically 30 minutes 3-4 x a week on average.

I immediately started to read/learn all I could find about Hashi's. I immediately changed my diet, eliminating all goitrogens, soy, caffeine and excess sugar of any kind, and I started eating organic. I started doing 30 minutes exercise every day and I made appointments with an endocrinologist, a naturopathic dr. and an acupuncture dr. I made up a long list of questions for the dr.'s and started calling my distant family about family diseases. I discovered 9 hypothyroid cousins and 1 hyperthyroid cousin (who also had total gland removal), 5 diabetic aunts, uncles or cousins, 3 cousins with hepatitis, 2 aunts with rheumatoid arthritis. I stopped calling family members at that point. I had no idea.

The endo. dr. was not compatible with me. He seemed to laugh-off my long list of questions, accusing me of being overly worried about a normal condition. Actually told me that diet and exercise wouldn't make any difference. Can you imagine any doctor actually saying that to an overweight patient, regardless of what they were complaining about? He wanted to see my TSH get down to 3.0 or 3.5, wanted me to start with 75 mcg Levoxyl daily and come back in 3 months for labs. He said I have an enlarged thyroid gland, which my PCP didn't mention. I started taking the new Rx immediately, but made an appt. with a different endo. I wasn't happy with this one.

The naturopathic dr. advised me of additional foods to eliminate (for allergies), gave me new supplements and took additional blood for labs. I kept adjusting my diet to improve it. I've lost 14.5 pounds since March 4th.

The acupuncture dr. said right up front that treatment for Hashi's would take a long time, but treatment for my allergies, acid reflux and plantar fasciitis while treating Hashi's was possible. The acupuncture treatment is definitely helping with the allergies and acid reflux. I'm completely off my antihistamine for 4 weeks now and I only occasionally need the acid reflux meds - for especially spicy-food days! I've tried to stop both medicines several times before, but was not able to handle it. I can't say what acupuncture is doing for my Hashi's yet. My plantar fasciitis is slightly to moderately better. The acupuncture is generally relaxing, although I readily admit needles in the feet are extremely uncomfortable. Needles in the rest of the body are mostly unnoticeable.

The second endo. dr. saw me exactly 5 weeks after my diagnosis. He agreed with my current Rx, but wants immediate labs. He feels that 6 weeks on a dose is enough time for re-testing labs. He felt a lower TSH range and overall how I'm feeling is what should dictate my Rx changes. I liked him for that and for his more compatible personality. He wanted to see me again in 2 weeks after new labs.

In the meantime, I had a CT scan of my neck for a seemingly unrelated mildly swollen lymph node, which started about a year ago and turns out to be nothing to worry about, but the CT scan confirmed I have an enlarged thyroid gland - no nodules.

I think knowing what is wrong, making the dietary changes, and seeking many healing methods have made a great difference in the way I'm feeling. I've been feeling better over the past 6 weeks, but know that I'm "not right yet". I wake up every day at 5:00 a.m. to take my Levoxyl, then go back to sleep for an hour or more. I'm not having problems with the medicine, no side effects so far. I have to eat three similarly sized meals each day. About 4 hours between brkfst & lunch and 6 hours between lunch & dinner. If it goes longer than 6 hrs. I must have a small snack including some sort of protein. Carbs alone add to my exhaustion immensely.

Now that I've introduced myself -

Have any of you had TSH or antibody readings as high as mine? Do you know if that is indicative of my being in the very beginning stages of Hashi's or is there no explanation for it? Do you use any alternative treatments in addition to your levothyroxine? I've read that there's a possibility the gland will actually shrink after the Rx. Have many of you experienced that? What I can expect from Rx increases? What else can you tell a newbie like me (other than "keep your posts shorter next time")?

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Old 05-10-2007, 01:37 PM   #2
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bookishmomma HB User
Re: New Hashi's with questions/comments

Well, the only thing I can contribute here is about the med increases: I felt a little better for about 2-3 weeks following an increase, then worse (I started with 12.5, then 25, then 50). When I started my current dose (75mcg Levoxyl), which is where I will be staying for the indefinite future--until labs indicate a need for an increase--I didn't feel much of a difference at all, though. It was just a gradual "feeling better." I feel pretty good, now. FYI I also have Hashimoto's.

Old 05-11-2007, 06:44 AM   #3
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Join Date: May 2007
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Clarissa234 HB User
Re: New Hashi's with questions/comments

Thanks for your reply.

A couple weeks at 25 mcg, and I felt slightly better. A couple weeks at 75 mcg, I didn't notice any difference.

My PMS/hormones are still (possibly more?) out of control, my cycle is more irregular and it's driving me insane.

Is this normal?

Old 05-11-2007, 11:18 AM   #4
Join Date: Mar 2007
Location: Philadelphia
Posts: 50
stef814 HB User
Re: New Hashi's with questions/comments

your story is almost to a "t" as to what I have gone through over the past 9 months....i FINALLY saw a new Dr. which i posted in another thread and will be starting a high dosage.

I had almost ALL of the same symptoms you had, literally almost every single one and my dr's would not treat me, i felt humilitated like I was making it up in my head.....this new Dr. took one look at me file and said I need to be on Meds, examined me and told me I had a goiter and I feel so much better just emotionally that i have some hope to feel normal again.

i also have Crohns disease so i really feel like an 80 year old woman these days and I am only 27. I have my fingers crossed my upped dosage will work and I feel for you.....hang in there, we will be ok

Old 05-11-2007, 01:13 PM   #5
Join Date: May 2007
Location: ca
Posts: 3
kylelove HB User
Please help I dont know how to post I need help

Hi I've being feeling terrible latley..I'm a single mother with a 17 month old and my health is failing.. I'm constantly exhausted, feeling dizzy/lightheaded,
off balance like I'm going to fall, heart constantly beating fast, feet and hands ice cold and neck area I find it hard to swallow. I've being given pills for anxiety which I knew it wasn't as I feel like this 24 hours a day..I've had my thyroid checked and all seems normal. Please help as I'm posting my results I've being like this for 4 months and my baby is not getting the attention he deserves due to the way I'm feeling. I've has a MRI so nothings wrong with my I'm starting to get slurry speach

T4 total 7.6
t3-uptake 34.2
TSH 1.33,
thyroxine free 1.2
TPO 10,
AB 20

Last edited by moderator2; 05-11-2007 at 03:43 PM.

Old 05-12-2007, 11:51 AM   #6
Senior Member
Join Date: Jan 2006
Posts: 118
Calore HB User
Re: Please help I dont know how to post I need help

You are probably coming to terms now that you were told you have hashi's. I know I was shocked. It sounds though like you are doing all the right things. Well done!!
It will take awhile for your body to adjust to change. You have to be patient--easier said than done but hang in there. It has taken me about 18 mos to start feeling normalish ( is that a word??).
These folks here can be helpful so post when you have a question!
good luck
Carol ( dx hashimoto's Jan06)

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