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Old 08-05-2009, 03:05 PM   #1
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face swelling & Hashimoto's

My 19 year old daughter was recently diagnosed with Hashimoto's. She was away atcollege and came down with mono. She also experienced rapid weight gain and a moon-like look to her face along with severe all-over edema, extreme fatigue. It took two endocinologists and 6 weeks to diagnose during which time her physical symptoms worsened. Prior to getting sick she has always been an extremely fit and physically active athlete.

I have posted her test results below. She has been on .75 ml of Synthroid for one month and we have only noticed a small improvement- the facial and body swelling continue to be a huge issue . She has also started going for accupuncture twice a week and has eliminated all artificial
sweeteners, flour, processed food from her diet. She eats fruits, vegs, eggs,
etc. and takes a whole regimen of supplements.

She is trying to go to college in a few weeks and is getting desperate. Her doctor is opposed to Armour but I was wondering if anyone has had any luck with Thyrolar. We go back for a follow up appt. on Monday so any advice would be greatly appreciated, especially with the swelling/bloating.
> > >
> > > TSH 1.5 (range -.3 - 5.1)
> > > T4 .88 (range .73 - 1.95
> > > T3 2.2 (range 2.3-4.2)
> > > Vit D 44 (range 30-60)
> > >
> > > Cortisol and DHEA were good.
> > >
> > > Thanks.

 
Old 08-05-2009, 06:02 PM   #2
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Re: face swelling & Hashimoto's

She may need to up her dosage. If she is still having hypo symptoms like the bloating, she should tell her doc to up her meds. The bloating happened to me until I was treated with higher dosages of meds.

Also, you may have the doc run Free t3 and t4 tests on her- that tell you how much of those thyroid hormones are available to be used- which is a better indication of her levels.

I have Hashi's and suffer from really bad swings- I'm bloated one week and then dropping pounds like crazy the next. Her meds need to be closely monitored so that they adjust according to her swings. The way Hashi's works is that when she is tired, bloated and feeling hypo, that is her body attacking the thyroid and when she swings hyper (which she eventually will), that is the thyroid hormones being pumped into her body after the attack making her nervous, dropping weight, etc. That's why it is key to monitor the meds and the free t4 and t3. So you can medicate based on the swings.

Is she taking selenium? That can be effective with the attacks.

I'm going on Armour because the Levoxyl (T4 med) is making me feel awful and I think is a better way to treat Hashi's.

Best Wishes to her- Hashi's is a pain.

Last edited by moderator2; 08-05-2009 at 06:56 PM. Reason: posted disallowed website(s) - please read the posting rules

 
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Old 08-05-2009, 06:10 PM   #3
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Re: face swelling & Hashimoto's

Are those Free T4 and Free T3 by any chance? They are the only good tests to check for the available (or Free) thryoid in the blood. The regular T3 and T4 tests are pretty useless. She needs a B12 level and she needs more vitamin D, her levels are too low and should be up over 50. The 2000iu of D3 are good way to suppliment.

If it were me I'd find a doc who would prescribe natural thyroid hormones. Barring that she needs to slowly increase her dosage of the T4 until she has an alleviation of symptoms, preferably to the point of actually shutting down the thyroid so the autoimmue attack will stop. But given your doc won't consider NTH, I'm guessing he's going to pull back on her T4 once her TSH gets suppressed. If he is going to go by the TSH levels alone she will likely not have good treatment. It's very hard to find doctors who treat Hashi's well and it's difficult to get good control of the disease. * Disallowed website and related information removed by hb-mod, moderator *

Last edited by hb-mod; 08-23-2009 at 02:03 PM. Reason: Please don't post disallowed websites as per Posting Policy. Thanks.

 
Old 08-05-2009, 07:22 PM   #4
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Re: face swelling & Hashimoto's

Hashi's is indeed a pain!! Thanks for your reply - the T3 & 4 I listed are Free t3 & 4 - I should have put that. She had new labs drawn yesterday so I am anxious to see if there has been any improvement. She has been taking really good supplements including selenium for the past several weeks.

Did the bloating go away gradually or over a fairly quick period once you had the higher dose of meds? I read on a few blogsites that people with bloating and hashi's have had good results with Pedialyte to reduce bloating.

Thanks again for your help!

Quote:
Originally Posted by Oppida View Post
She may need to up her dosage. If she is still having hypo symptoms like the bloating, she should tell her doc to up her meds. The bloating happened to me until I was treated with higher dosages of meds.

Also, you may have the doc run Free t3 and t4 tests on her- that tell you how much of those thyroid hormones are available to be used- which is a better indication of her levels.

I have Hashi's and suffer from really bad swings- I'm bloated one week and then dropping pounds like crazy the next. Her meds need to be closely monitored so that they adjust according to her swings. The way Hashi's works is that when she is tired, bloated and feeling hypo, that is her body attacking the thyroid and when she swings hyper (which she eventually will), that is the thyroid hormones being pumped into her body after the attack making her nervous, dropping weight, etc. That's why it is key to monitor the meds and the free t4 and t3. So you can medicate based on the swings.

Is she taking selenium? That can be effective with the attacks.

I'm going on Armour because the Levoxyl (T4 med) is making me feel awful and I think is a better way to treat Hashi's.

Best Wishes to her- Hashi's is a pain.

 
Old 08-05-2009, 07:30 PM   #5
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Re: face swelling & Hashimoto's

I have heard that the Vit. D needs to be over 50 in several places. Her multiple supplement contains D but I am going to buy an additional Vit. D supplement.

We go back to the endo on Monday to review new labs and we have an appt. with another doc on tuesday who prescribes both synthetic and natural so it will be interesting to see what she prescribes based on the new labs.
Thanks for your help!

 
Old 08-05-2009, 08:07 PM   #6
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Re: face swelling & Hashimoto's

Hashimom,
Your daughter's labs on both the FT3 and FT4 are low. Since she is already taking T4 med for 4 weeks, she should try to stay on that until her numbers go up. Ask the doc to increase the dosage but I hope he/she doesn't just look at the TSH number and more than likely he will say "no". He needs to also take into account symptoms and the Free numbers. Ask the doc to increase her dosage to 100 mcg and then test for another 6 weeks.

Bloating takes a while to go down. Based on her numbers and how long she's been on the new med, she is definitely not optimized. Her numbers are too low and bloating will not go away yet since her metabolism is not working well. If her FT4 number goes past mid-range and the FT3 doesn't budge then add the cytomel or go to Armour (or Thyrolar). It make take another dosage increase more increases before she feels better.

I was on Armour but it didn't work well for me. I wished I had tried the synthetic first because Armour had too much T3 for me. At least with the synthetics, you can tweak the T3 much more easily.

Good luck!

 
Old 08-05-2009, 08:25 PM   #7
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Re: face swelling & Hashimoto's

I noticed you are from Austin which is where my daughter will hopefully go back to school in a few weeks. Do you like the endo that you go to, if yes, would you mind giving me the name. I would just feel better if she had a doc close by if she needed it. She had 3 docs in Austin - the first 2 said she had strep.I finally called and made her an appt. and insisted she be tested for mono and thyroid, esp . hashimoto's - they said she tested positive for mono and neg. for thyroid - they did not test for free T3 or 4 and no antibody tests - so I would feel better if she had a good dr. that I could send her to if she couldn't get home.
Thanks!

 
Old 08-05-2009, 08:50 PM   #8
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Oppida HB User
Re: face swelling & Hashimoto's

Quote:
Originally Posted by hashimom View Post
Hashi's is indeed a pain!! Thanks for your reply - the T3 & 4 I listed are Free t3 & 4 - I should have put that. She had new labs drawn yesterday so I am anxious to see if there has been any improvement. She has been taking really good supplements including selenium for the past several weeks.

Did the bloating go away gradually or over a fairly quick period once you had the higher dose of meds? I read on a few blogsites that people with bloating and hashi's have had good results with Pedialyte to reduce bloating.

Thanks again for your help!
The bloating took about a month for me. But it was steady, every day I felt I looked better and the bloating got better each day. I was really out of wack though- I had a TSH of 133! My t4 and t3 levels were WAY off. I was in the middle of a huge attack I think. I am on a pretty high dosage- 150mcg. I bet once she ups her meds, the bloating will go down.

Last edited by Oppida; 08-05-2009 at 08:50 PM.

 
Old 08-06-2009, 06:15 AM   #9
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Re: face swelling & Hashimoto's

Oppida,
That is good to hear that once you are on the correct levels, your bloating goes away a little every day - the bloating is making her crazy and she does not want to go back to school looking like that. Are you taking Synthroid and how long have you been on it?
Thanks.

 
Old 08-06-2009, 11:14 AM   #10
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Re: face swelling & Hashimoto's

Quote:
Originally Posted by hashimom View Post
Oppida,
That is good to hear that once you are on the correct levels, your bloating goes away a little every day - the bloating is making her crazy and she does not want to go back to school looking like that. Are you taking Synthroid and how long have you been on it?
Thanks.
I am on Levoxyl (same thing as synthroid) and have been on for 5 months. To be very honest here, I HATE levoxyl. I have had a very terrible time with it. I have very dramatic swings from hypo to hyper- I'll be wiped out one day and having panic attacks the next! And the meds are not helping. I've had some symptoms improve- constipation, bloating, weight gain resolve, but I'm still feeling far from normal.

I've had an awful doc and I have just switched to a new endo and have an appointment next week- I'm insisting on taking Armour. I want to see if it will help, because Levoxyl is leaving me with many unresolved symptoms. She may want to look into Armour if the t4 meds leave her with unresolved symptoms. I'll keep you posted on how Armour worked for me once I get on it...

That said, everyone is different and she may do well on the T4 meds. I still think she really needs to up her dosage to feel better and get the bloating down. I was SO miserable when I was bloated. My clothes were SO uncomfortable, my face looked like I was stung by bees. I just had a baby too, so I felt so disgusting! I feel her pain...HUGS to her...

 
Old 08-06-2009, 12:43 PM   #11
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Re: face swelling & Hashimoto's

I know a lot of people don't do well on synthetic T4 and usually their docs don't raise the dose enough to get the thyroid shut down and stop the antibody attack.

If you do choose to go over to natural thyroid hormones I suggest you go with Nature-throid which is gaining a lot of converts since Forest Labs reformulated Armour this year. The new Armour is seriously lacking for most who are currently on it. There are several posts here with more info about it.

 
Old 08-06-2009, 02:52 PM   #12
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Re: face swelling & Hashimoto's

Quote:
Originally Posted by mcaimless View Post
I know a lot of people don't do well on synthetic T4 and usually their docs don't raise the dose enough to get the thyroid shut down and stop the antibody attack.

If you do choose to go over to natural thyroid hormones I suggest you go with Nature-throid which is gaining a lot of converts since Forest Labs reformulated Armour this year. The new Armour is seriously lacking for most who are currently on it. There are several posts here with more info about it.
That is great information! I'll ask about that over Armour....Thank you!

 
Old 08-06-2009, 03:46 PM   #13
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Re: face swelling & Hashimoto's

Quote:
Originally Posted by hashimom View Post
I noticed you are from Austin which is where my daughter will hopefully go back to school in a few weeks. Do you like the endo that you go to, if yes, would you mind giving me the name. I would just feel better if she had a doc close by if she needed it. She had 3 docs in Austin - the first 2 said she had strep.I finally called and made her an appt. and insisted she be tested for mono and thyroid, esp . hashimoto's - they said she tested positive for mono and neg. for thyroid - they did not test for free T3 or 4 and no antibody tests - so I would feel better if she had a good dr. that I could send her to if she couldn't get home.
Thanks!
Hashimom,
The endos here in Austin are not the greatest but I have one endo, Dr. Padma Horvit, who is pretty good but she definitely will not ever prescribe Armour. She is pro-Synthroid or pro-Levoxyl. She does test for antibodies and says the hypo cutoff for TSH is 2.1 for the upper range. Not so bad in my book.

My current Physician Assistant, Kelly Shook (under Dr. William Franklin) knows much more about FT3, FT4, TSH, Iodine, Adrenals, etc. She always looks at my frees and will give you synthetic or dessicated. Ultra smart about how the hormones work but she only works 1x a week since she had her baby. Still, it's easy to book an appt. with her.

Another one to see is Dr. Richard Wiseman. He knows thyroid and has been treating for over 20 years. He's all into the natural hormones and he does look at FT3.

Good luck! I hope your daughter finds her magic dosage and doctor soon!

 
Old 08-06-2009, 03:55 PM   #14
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Re: face swelling & Hashimoto's

Oppida, I totally agree with you about the face swelling. Like being stung by bees. I swear I look like the elephant woman when I get hypo. My endo several years ago though I had the Andre the Giant disease (acromegaly). Tested my pituitary and thank goodness there was no tumor, meaning one less thing to worry about. Thyroid disease is such a pain in the cush. Too little hormone, too much, back and forth, titrating, and so on and so forth. Oppida, have you tried Synthroid? I tried both and Synthroid leaves my face more swollen than Levoxyl but the Levoxyl makes me bloated everywhere else. What the heck is going on? With Synthroid my face is a bit puffy but my body is slender. I have to admit that I am super alert and have a skinny tongue on Levoxyl. I had to decrease my Synthroid from 55 mcg to 50 mcg (10% decrease) and the first month I looked terrible in the face b/c I looked like a puffed up droopy dog and was so tired. Now, the swelling is down and face is looking much better. I have a yearning to get on Levoxyl but since I'm back on Synthroid for 6 weeks already, I don't want to ruin the progress.

To the other poster about Armour, kudos for the mention that more Armour users are hating it and going to Naturethroid. I don't know why Armour reformulated their drug but many patients are getting their labs off kilter as well as their physical well being. A compounding pharmacist once told me that Naturethroid is better because the pigs are treated like kings.

 
Old 08-06-2009, 07:26 PM   #15
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Re: face swelling & Hashimoto's

I know - my daughter uses the word "disgusting" to describe the way she feels too - the bee stings description is perfect! She was looking a little better and then really went downhill the last 2 days and the bloating is really bad now. I feel terrible for her - six months ago she was at college on a cross country scholarship and today she can hardly get out of bed. I am sure it is really hard for you just having had a baby. This whole thing is the weirdest thing I have ever seen.

We had new labs run this week and meet with dr. on Monday. If her t3 hasn't gone up i am going to push for Cytomel like Librarygirl suggested in an earlier post. We also have an appt. with a new doctor on Tuesday who prescribes both synthetic and natural to see what she has to say. I called a few compounding pharmacies and asked for a recommendation and 2 of the 3 gave me her name so I am anxious to see what she has to say. Supposedly she looks at everything including adrenals and hormones.

Good luck with your new doctor next week and hang in there - We will have to compare notes!



Quote:
Originally Posted by Oppida View Post
I am on Levoxyl (same thing as synthroid) and have been on for 5 months. To be very honest here, I HATE levoxyl. I have had a very terrible time with it. I have very dramatic swings from hypo to hyper- I'll be wiped out one day and having panic attacks the next! And the meds are not helping. I've had some symptoms improve- constipation, bloating, weight gain resolve, but I'm still feeling far from normal.

I've had an awful doc and I have just switched to a new endo and have an appointment next week- I'm insisting on taking Armour. I want to see if it will help, because Levoxyl is leaving me with many unresolved symptoms. She may want to look into Armour if the t4 meds leave her with unresolved symptoms. I'll keep you posted on how Armour worked for me once I get on it...

That said, everyone is different and she may do well on the T4 meds. I still think she really needs to up her dosage to feel better and get the bloating down. I was SO miserable when I was bloated. My clothes were SO uncomfortable, my face looked like I was stung by bees. I just had a baby too, so I felt so disgusting! I feel her pain...HUGS to her...

 
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