Darn Hostimoto

I am a 40 yr old that has finally been diagnosed with hoshitmoto. I was 24 and had my last child. Went to my gyno for my 6 wk check up and he says your thyroid is swollen. I look at him like "what the heck is that". He sends me to a specialist and they run some tests. I had radiation therapy done because it was so big. I couldn't even be around my baby when I had the radiation done. Then I would be put on different levels of medication. My tsh and t4 would always be a different level so they could never determine what level to put my medicine on. Then I moved to a different state. Still the same problems just different doctors. I was so depressed. One doctor told me that nothing was wrong with me just crazy....so I stopped going to dr's for a while..Maybe I am crazy!
Then one day I was in the hospital pre-admitting my daughter for surgery on her ears. The nurse doing the paper work looked at me and said "do you have a thyroid problem?" and I said yes. didn't pay much attention, was there for my daughter. So we finished with what needed to be done and she handed me a card to an internal medicine dr located in that hospital. A week later I called and set up an appointment. I was sitting in the room and he walked in. Instantly started feeling my neck. How long have you had this? I said since I gave birth to my last child. I think at that time she was 4. He asked me how I have been feeling. LIKE CRAP. Can't sleep on my back because I feel like I'm choking, heavy periods, depressed, cold, flaky skin, constipated, tired, and the list goes on. He asked me to follow him and I did. He went into an office and called a surgeon. He was telling him what was going on and I needed to see him. I had an appointment the next week with the surgeon. He said we need to get your thyroid out. I said WHAT? but ok with it. The following week I was in the hospital having this thing taken out. I was in the hospital for almost a week. Not a fun surgery at all. They couldn't get my potassium level where they wanted it. But I was finally diagnosed with a HOSHIMOTO. I had all of my thyroid taken out. Now I take synthroid .137 and have blood tests every 6 mths to maintain my level.....I feel good now. But it was a long road.....
Now I'm starting to have other symptoms of hoshimoto. joint pain is the biggest... Just have to live with it.

K
richsister45 richsister45
36-40
1 Response Jul 31, 2010

I don't know if you've been back on this site since it's been 5 yrs since this post but just reading your story I can relate. I too have Hoshimotos and was found at the Gynos appt. just the same they could see it by looking at my neck , I didn't have it removed but there's a nodule my doc hopes will go away on hormone med. every day is a fight for me to stay out of bed till 2:30. My legs feet and hands swollen. Still on road to getting better from this slow ,creeping, silent and quality of life taking disease. Would like to know how your doing now?

I am doing well. Thank goodness. After going through what I went through I really go to know my body. I can tell when my level is off and I can go to the dr and get a blood test. I've maintained the same dosage for many years now.
I tell you what, it was really a roller coaster ride till I found the right dr that actually found out what was wrong with me.
Just make sure you take your medication and routine blood tests done. You will be fine.

K

Ok I will do, I'm already taking a little higher dose than the doctor wanted to prescribe because i don't feel good. My legs and feet are still swollen how long does it take for a body to regulate on the hormone med. ? It's frustrating still waiting... It's only been a couple months.

I've never heard of the feet and legs being swollen. Have you asked about that? Are you seeing a family doctor or an internal doctor? You need and internal doctor if your not already seeing one for the thyroid.
It takes about 30 days for your medication to get in your system before you will see or feel any changes.

Something else might be going on.

I work in the medical field, which helps me.

I have a question for you
How did they determine you have hoshimoto?

K

I couldn't agree more with the Internist & or Endocronologist. I see both. Surprisingly enough my Internist missed it, it was actually my GYN that initially found my enlarged thyroid gland, she ordered a sono which showed the size (with one nodule) my GYN also ordered the labs then referred me to an Endo. I have worked in the med. field so it does help knowing things and what to do as far as who to see. But I only worked in family medicine as a lab tech /nurse. Not an RN, I've read about water retention caused by hypothyroidism and my grandma had it too. It's already been 3 months or so and I'm still having many symptoms. I will look further for diagnosis being checked from Internist. (That's a good idea )

They didn't diagnose me till they actually took mine out and sent it to pathology.
There is so much to know about the different types of thyroid problem to have and the differences it makes to your body.
Depression being one of the major parts of it. And I think it's the worst part if having the disease. I'm thankful I have mine under control, after so many years of not knowing what was wrong with me. I was beginning to think I was really crazy. 😔
You will be fine. Just keep up with the doctors. And the key is find the right doctor.

K

Yes it really is the worst part and for me was one of the very 1st symptoms I had in my late 20's I started on anti depressants. Only to start and stop them 3 times since. I remember asking my Gyno to check me for low libido (hormone issues) in my early 30's but it wasn't until the loss of hair , diarrhea, weight loss etc. that I started to think I was going crazy not knowing what was wrong, the depression worsened back to anti depressants. I've gained a lot of weight, high cholesterol, bp, and still my internist doesn't see any connection. I don't think he's as educated in the endocrine system as I'd hoped he'd be. It's hard finding a good dr. Thanks I think I do need someone else. I hope I didn't carry on too much just trying to explain what I was telling Endo . She's the one that said Hoshimotos.

She did say most people with enlarged thyroid have Hoshimotos or Graves' disease.

Your not rambling 😃 it's hard to find someone to talk to about with the same or similar situations.
Keep in mind it's very hard to get your TSH level in the range where it needs to be with hoshimoto's disease. This is why I had mine taken out.
Have you had high levels then low levels?
This is hoshimoto's.
Please make sure your doctor diagnosis you correctly. Keep track of what your levels are.
Ask lots of questions. Don't be afraid. This is your body.
I can tell you once your level is right and your on the correct medication you will begin to feel tons better and you will feel it.

K

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