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Old 03-08-2009, 08:34 AM   #1
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lhaisa HB User
New to forum- diagnosed Hashimoto's

Hello everyone, so glad that I found this board.
I was diagnosed as having Hashimoto's 4 weeks ago, even though my TSH was normal (1.54). The doctor said my antibodies were 'semi-high', whatever that means. He put me on 50 mcgs of Levothyroxine.
My symptoms ranged for 2 years, and my doctor thought I had allergies all of that time before he ran an antibodies test.
My symptoms were: hair falling out, my face and eyes were swelling so much that I looked deformed. I was tired all of the time, couldn't keep my eyes open. I had brain fog, and sometimes my speech was slurred. My thyroid was enlarged, and a centimeter size calcified nodule was found, my cholesterol skyrocketed to 308, and I got cholesterol deposits on my eyelids (little yellow plaques).
My eyes, face, and hands are still swelling. I have bags under my eyes and swollen lids. It is swollen under my jaw and cheeks. I am exhausted all of the time.
The levothyroxine doesn't make me feel any better, not yet anyway. I go back to the doctor in 2 weeks, he said my meds will need to be increased or decreased according to pending blood tests.
My questions are:
Will I ever stop swelling?
Is there anyone else with Hashimoto's who has the swelling problems? Will an increase in thyroid meds control it?
If there is anyone else on the board who is euthyroid Hashis, I would love to know what dosage you are on that helped.
How low can my TSH get before it is dangerous?
Sorry if this is too long, I have been upset and hopeless feeling for so long, and there is no one I can talk to who understands what I am going through.

 
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Old 03-08-2009, 09:04 AM   #2
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crawfordkid HB User
Re: New to forum- diagnosed Hashimoto's

what were your antibodies when drawn?

 
Old 03-08-2009, 05:53 PM   #3
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herekittykitty HB User
Re: New to forum- diagnosed Hashimoto's

[QUOTE=lhaisa;3911225]My eyes, face, and hands are still swelling. I have bags under my eyes and swollen lids. It is swollen under my jaw and cheeks. I am exhausted all of the time.
QUOTE]

I have Hashimoto's but normal test results otherwise (TSH, T3, and T4). I am not on any medication.

I do have swollen eyelids and swollen bags under my eyes and I hate it! I also have little swollen bags on each side of my jawline. I don't know what to do about it to get rid of it. My hands do not swell. I am exhausted all the time too. It's an effort just to move sometimes. I did find out I am anemic also and this may contribute to the exhaustion.

 
Old 03-08-2009, 10:34 PM   #4
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namelessme HB User
Re: New to forum- diagnosed Hashimoto's

I never heard of swelling issues like that with Hashimoto's.

In my own case, I would have been considered 'normal' with a TSH in the low 3s. My T3/T4 was normal too, but antibodies high on initial test. They fluctuated to semi-normal, then after a small dose of T4, they are now in the normal range.

I started on 25mcg, and didn't notice any difference. It was the same as taking a sugar pill. TSH went down to 1.85.

And just upped to 50mcg this week. My doc wants me to get a TSH around 1ish. So I expect 50mcg should do it. I think he basically just wants my thyroid to get normal-sized and to protect against nodules.

But I can't say I feel any better than I did previously. Maybe after a while on 50mcg I will feel different.

 
Old 03-09-2009, 06:45 AM   #5
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lhaisa HB User
Re: New to forum- diagnosed Hashimoto's

I don't know what my antibodies were........ I am going to find out next appointment. Also going to find out what my free t3 and free t4 levels were/are.

Someone stated on another board that their endo said it is imperative to suppress the TSH to .50-1.0 in Hashi's sufferors, otherwise swelling occurs. I am going to ask my doctor about this also. Seems that every GP and Endo has a different opinion. But I am willing to try whatever will make me feel good and NORMAL again
I am still trying to understand how I can have all of this, I knew nothing about thyroids and conditions before going through this.

 
Old 03-10-2009, 08:33 AM   #6
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Hashihelp HB User
Re: New to forum- diagnosed Hashimoto's

Swelling can be typical in Hashimoto patients- be thankful that you don't have Chronic Urticaria!! I have swelling, severe hives and have been to the ER twice before diagnosed.

The swelling (angioedema) may be alleviated with antihistamines- it depends. Does everyone end up getting surgery? It seems to take years for hormone replacement to work.

Any one else have the pleasure of also having the genes that produced urticaria and hashimoto's?

 
Old 03-10-2009, 08:50 AM   #7
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Hashihelp HB User
Re: New to forum- diagnosed Hashimoto's

Best way to get rid of swelling is to get thyroid suppressed if you have Hashimotos. I am euthyroid and on meds- I see a HUGE improvement in lack of swelling, although I still have hives and some swelling from that. Your body's immunity produces a massive amount of plasma and other things that hold onto your fluids, and produce more. Would advise finding an endo that will treat you even though TSH is normal. No such thing as "normal" if your antibodies are high.

 
Old 04-09-2009, 09:10 AM   #8
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lhaisa HB User
Re: New to forum- diagnosed Hashimoto's

An update........
Hi everyone, and thank you for the replies.

My appointment was postponed, as I was being turned over to another doctor because mine quit that practice because they wouldn't give him a raise....

My new doctor is very nice, seems more caring and open to listening. I started Levothyroxine 8 weeks ago or so, and my TSH went from 1.54 to 1.74 on this dose.

My new doctor knows about suppressing TSH in Hashimoto's patients, and admits that it works for some, but is leary of trying that with mine. He wanted to run a comprehensive panel before discussing it further. He was concerned about a possible Vitamin D insuffiency, and also wanted to check my hormones.

His nurse called me today to tell me that the tests all came back in good shape. My next appointment is on the 14th of this month.

I am feeling nervous and hopeless, not knowing if my doctor will raise my dosage to see if it helps. I'm still having symptoms on 50 mcgs of levothyroxine. And the week before my period is just AWFUL with the leg/arm/hand cramping and under eye swelling increased. Why do my symptoms worsen during pms?????

I'm looking for proof on the internet that it DOES help to suppress TSH so that I can print it out and show it to my doctor on my next visit. (Any suggestions for websites or studies will be very appreciated.) My doctor seems worried that suppressing will cause heart and bone problems.

I have ordered copies of my labs, and will get them on the 14th. I don't know what my free t3 and free t4 levels, but my doctor did say something about checking them.

My antibodies were around a 100, that is so low compared to others of 1000 and even higher, I wonder how I can suffer so much with them at this level.

Feeling like a lab rat,
Lhaisa

 
Old 04-09-2009, 09:13 AM   #9
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lhaisa HB User
Re: New to forum- diagnosed Hashimoto's

Forgot to mention....
I have terrible insurance right now, because of being out of work, so my choice of doctors is limited. I pretty much have to deal with what they give me.

 
Old 04-13-2009, 05:39 AM   #10
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Hashihelp HB User
Re: New to forum- diagnosed Hashimoto's

Hi Ihaisa,
Check out http://www.pubmedcentral.nih.gov/... they have a search engine and you can find a lot of studies out there. My antibodies are 490-550... I have massive problems too. They need to monitor free T4/T3 levels because that is a better estimate of what is going on, not TSH. It takes a long time to get the right dose, and for the hormone to be absorbed. Some people do better on synthroid than the generic too. You have to get the thyroid fully suppressed to get the swelling down, plus everything you eat, what you weigh, has a huge impact on how much hormone gets absorbed. Please let me know what info you need- I have spent hours researching my condition and know quite a bit.

 
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