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Hashimoto's and swelling/edema
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Hashimoto's and swelling/edema

Hi, I have never posted before, but have been reading for a few weeks. I was diagnosed as having Hashimoto's 4 weeks ago, even though my TSH was normal. My doctor 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 weird, I was baffled and distressed, as my quality of life kept becoming worse and worse. As soon as my son was born, my hair started 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 cholestrol skyrocketed to 308, and I got cholesterol deposits on my eyelids (little yellow plaques).
My eyes, face, and hands are still swelling. My face doesn't even look my mine anymore, and I have bags under my eyes and swollen lids.My rings don't fit. Some days I look almost normal, some days it is horrendous. 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.
I can't remember all of my results, but my TSH was 1.54 and the doctors said my antibodies were 'semi-high', whatever that means. He said my high cholesterol was more than likely due to my thyroid problem.
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.
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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499534_tn?1328707778
Hi there and welcome. Having hashimoto's for some of us is like getting run over by a Mack truck! You are not alone.....yes thyroid meds will help and are imperative to regain normal functions of the body. When you have Hashimoto's, your body has develped antibodies that attack and destroy your thyroid. Over time they will completely destroy the entire thyroid gland. That is why you will need med increases continually over time as well. Now....my endo told me it is imperative to supress the TSH to a .50-1.0 for Hashi patients. It helps to control the antibody attacks and helps the body to heal thus elimating most symptoms. But that means keeping a very close eye on levels every 6-8 weeks so you can keep up with increases, etc. Anything over the 1.0 level and you will suffer symptoms including edema (swelling and fluid).
It is also important to know what your free t3 and free t4 levels are because they are the actual active thyroid hormones.
It is a hard road for some of us and easier for others. Most importantly is to know that eventually it will all calm down if you are recieving proper care. There is a light at the end of the tunnel!  :)
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649848_tn?1424570775
Hi there.  There are a lot of us who certainly can empathize with you, because we've been there and done that.  

I was diagnosed with hypothyroidism in Jun 08 and with Hashi's in Nov 08.  I was struggling a lot and my doctor was not helping me (in fact, he told me there was nothing wrong with me beyond that hypoT and that the med would take care of that).  I ended up being sent to and ENT for what they thought was unrelated problems.  The ENT recognized the symptoms right away and sent me for ultra sound and anti body testing; hence the hashi dx.  The ENT ended up sending me to an endo actually LOOKED at the lab results, then treated me, the patient, rather than the lab numbers.  

I am now on 50 mcg levothyroxine and 10 mcg cytomel daily and I feel like a whole new person.  My energy has soared, foggy thinking went away, as did my muscle aches/pains, etc.  I recently had new blood work done and am scheduled to see the endo on Tues of this coming week - will be anxious to see if the lab numbers correspond with the way I feel.  

Hang in there - you'll get there.  
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Avatar_f_tn
It is SO comforting to know that other's know what I am going through. I am glad that you both were able to get treatment and feel better :)  I have no idea what my free t3 and free t4 levels are, this is all greek to me, still learning. I am going to find out next appointment. And also what the antibodies levels are. My doctor put me on thyroid meds with the non comforting: "I don't know if it will help you, but it certainly won't hurt you". I guess I was feeling a little concerned about my TSH getting to low, but if it helps to get below 1.0 then I am game to try it.
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499534_tn?1328707778
make sure you get copies of all your labs from dr before you leave appt, or pick up copies. That way you can post them here and we can help you to understand what they are and what they mean. :)
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Avatar_f_tn
An update........

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?????

Just needed a place to rant. I'm wondering if I should push try to suppress my TSH, and looking for proof on the internet that it DOES help so that I can print it out and show my doctor next visit. (Any suggestions for websites or studies will be very appreciated.)

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, so I will ask him.
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Avatar_m_tn
You can cure Hashimoto's disease. It is not a lifelong disease. There are two things you need to do to cure it. One is listen to the videos on this webpage: http://hopeforhashimotos.com and find a doctor who follows this doctor's protocol. And the second is to learn about and follow the GAPS Diet: www.gapsdiet.com  The first step at hopeforhashimotos.com will stop your immune system from attacking your thyroid, the second step will heal and seal your GI tract, where 80% of your immune system is located. Then you need to feed your thyroid the things it needs to make it's own T3 and T4 and voila! You are healed. Okay, it's not as easy as it sounds, but it is well worth the effort. If you have any further questions, please feel free to email me at: ***@****
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1064552_tn?1322583358
Gah!  My hands and arms have been horribly swollen since January. My fingers go from 1 ring size larger to two.  Sometimes I can't even completely close my hands.  I was diagnosed in April with hypothyroid but only today got sent an article from my cousin on hashimotos.  Now I'm wondering if the laundry list of symptoms I've been living with for the last 27 years was hashimotos.  Can u experience symptoms that long?  I told my doctor I hate to have things near my throat because I feel like I'm choking.  But he inferred it was because of neck fat.  It's all focused on the thyroid area though. :-/.
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649848_tn?1424570775
You've attached to an old thread and Isaren has not been active on the forum since last commenting on this thread in 2009, so it's unlikely you will get a reply from her.

It's possible to have undiagnosed hypothyroid symptoms for years. In many cases, the antibodies that cause Hashimoto's are destroying thyroid function long before lab tests indicate an actual thyroid condition.

Since you've already been diagnosed with hypothyroidism, that's probably  the result of Hashimoto's, which is the number 1 cause of hypothyroidism in the developed world.  The antibodies, themselves aren't causing the symptoms and once the damage is done to your thyroid function, you can't repair it, even though there are some who will tell you that Hashimoto's can be "cured"... it can not...

To test for Hashimoto's you'll need to request the antibody tests, Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb).  You'll need them both, as either can be the basis for a diagnosis of Hashimoto's... some of us have one or the other; some have them both.  Some doctors don't want to order the antibody tests, as they simply  "assume" that Hashimoto's is the cause of your hypothyroidism... That's what my diagnosing doctor did.

Many of us have trouble wearing things around the neck, when we have swollen/inflamed thyroid.  A thyroid ultrasound will tell you if this is your problem.  
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14637373_tn?1435613691
I've had hypothyroidism for at least 30 yrs. Was diagnosed with Hashimotoes an perniscious anemia about 8 years ago.  I take 200 mcg of levothyroxine, b12 injections monthly .  I am suffering from edema which has been getting increasingly worse for 4 months now.  I have put  on 40 pounds which is causing me physical pain,I have ruptured discs arthritis,fibromyalgia,and making my deppression worse. I feel like I'm dying. Can doctors drain the fluid from my body?
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14637373_tn?1435613691
I've had hypothyroidism for at least 30 yrs. Was diagnosed with Hashimotoes an perniscious anemia about 8 years ago.  I take 200 mcg of levothyroxine, b12 injections monthly .  I am suffering from edema which has been getting increasingly worse for 4 months now.  I have put  on 40 pounds which is causing me physical pain,I have ruptured discs arthritis,fibromyalgia,and making my deppression worse. I feel like I'm dying. Can doctors drain the fluid from my body?
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649848_tn?1424570775
No, doctors can't drain the fluid from your body, but they can give you something to help flush it out.  

The first thing I have to ask is what your actual thyroid hormone levels are... you should be getting tested periodically for Free T3, Free T4 and TSH.  Hypothyroidism can cause swelling/edema, so it sounds like your thyroid hormone levels aren't high enough and possibly your medication needs to be adjusted.  

If you'll post your current thyroid hormone levels with reference ranges, which vary lab to lab and have to come from your own lab report, we can better assess your situation and give you some ideas on what might help you feel better.
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