After surgery... diagnosed with Hashi... now what?

[momof3inva]

Hi all... Well, I posted some question a few weeks ago and everyone was really helpful and supportive, so I thought I would try again. I had surgery last Wed (it is now the following Tues) for what ended up being a partial thyroidectomy. The cyst on my left side ended up being larger than they had originally realized at 5.5 cm. When they sent it into pathology is said that it was suggestive of Hashimoto's disease. Today when I went into my follow up appt, this is the first time that I had heard this, as I had always heard that the cyst was "benign."  Fortunately, they ended up leaving the right side of my thyroid as it was perfectly functioning. However, my surgeon said in light on this new news I would definitely need to be on a high dose of synthroid despite the functioning thyroid (the left is completely gone). I am so confused. This is all so new. I have an appt tomorrow with my primary dr, who will test blood thyroid levels and hopefully prescribe the synthroid and not need to have me see a specialist.

Can anyone shed some light? I know that this is an autoimmune disease, but I am totally confused! The dr said it is totally different than the cyst, but how can that be when they biopsied it as part of the cyst! Any advice/insight is so greatly appreciated!! Thanks in advance.

Jill

[TamraW]

Your benign cyst had no cancer, but that doesn't mean you can't have Hashimoto's Auto-immune Thyroiditis. Hashimoto's causes the cysts because as the Hashi antibodies attack the thryoid we get these little thyroid nuclear explosions that turn into cysts/nodules. Forgive my silly little analogy, but that's my best way to describe it.

Hashi makes a mess of the thyroid if it goes untreated for too long. Unfortunately, if doctors misdiagnose our constipation, depression, fatigue, weight issues for years, while our helpless thyroids are being attacked, we end up with lumpy thyroids, goiters, neck swelling, choking feeling, until we finally say, "Hey, doc it's getting harder to swallow food." Then, if the doc has half a brain, he/she finally checks for Hashi antibodies.

Or in my case - I suffer for many more months until I find this forum and the wonderful ladies here tell me to tell my endo to test me for Hashi antibodies.

Anyway, you should see a good endo for this  - one who actually knows about thyroid disease, and not just diabetes. So many docs treat only TSH levels, and undermedicate patients with hypo symptoms.

Here's a good list of recommended endos by state:
http://www.thyroid-info.com/topdrs/

Most doctors treat Hashi patients with a synthetic T4 drug (Levo or Synthroid); however, know that you have options. Many Hashis have low FT3 that doctors tend to ignore. If after you've been on the T4 for a few months, and you are tired, constipated, not losing weight, then take charge of your treatment. Many of us do better with FT3/FT4 levels in the higher end of normal, even if that means lowering TSH levels to the doctor's discomfort. Sometimes, adding a T3 drug like Cytomel helps.

Sometimes, patients don't do well on the synthetic drugs at all, and they do better with a more natural drug like Armour or Nature Thyroid. The natural stuff is on backorder at most pharmacies right now, but you can still get it at compounding pharmacies.

Next, you need to realize that many ailments commonly blamed on something else can actually be associated with Hashi. I've been misdiagnosed with Shingles (actually Hashi rashes) and Parathyroid disease (because my low vitamin D levels made my parathyroid hormone go up). I'm pretty sure I'm developing arthritis in my knees, feet and fingers. Auto-immune conditions can sometimes go together.  

Taking magnesium three times a day helps. I also have issues maintaining my D and B12 levels, so I take supplements. Many Hashis do. I also get neck pain, so a member suggested Selenium and it helps.

I also stay away from fluoride, which is not good for the thyroid. I limit my consumption of soy, which can interfere with my Synthroid. I do not consume any vitamins, soy, uncooked broccoli, raw cabbage within four hours of taking Synthroid (soy is in most coffee creamer). I take Synthroid on a full glass of water and an empty stomach. Nothing to eat or drink for one hour after Synthroid, so that it absorbs into the system. I do not eat gluten because many Hashis have a mild to severe gluten intolerance. Yes, I do get the twisting in my gut after gluten.

I sure hope I haven't overwhelmed you. The lifestyle has actually been an easy adjustment for me. After years of being sick, I'll do ANYTHING to get well. I already feel much better on .75 mcg Synthroid. I get tested every 8 weeks and then get my medication bumped higher according to my levels. I feel better with each bump. I used to take 2 hour naps each day. Now, they are 10 minute naps! Since taking Magnesium three times daily, I no longer have constipation.

Take care...
:) Tamra

[Justi_has_a_booboo]

Hi Jill,

I'm new to all of this too, four weeks to be exact. My label: Hashi's with Polycystic Ovarian Syndrome. I'm meeting with my surgeon this Friday, to have a look to see if my nodules are cancer and to most likely have a total thyroidectomy.

I have found so much good information and support here. Give it a few hours, a few here have amazing insight. You'll be feeling less confused and more empowered soon.

I have learned Hashi's means your immune system is confused and attacking your thyroid. It may or may not cause your remaining thyroid to stop working. It can be treated and it's something you can learn to live with. :)

Have they tested your antibody levels? Read up as much as you can here...do searches on Hasimotos and Synthoid. You'll find a lot of information while you wait for responses to your post.

Much luck and many prayers to you,
Justi