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Old 06-20-2012, 06:29 PM   #1
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Hives & angioedema & Hypothyroid with normal tsh? Hashimoto's?

I am beyond frustrated with my health and doctor! I feel like I'm a hypochondriac.
For about the last 2 years, once or twice a month I would get extremely itchy under one of my eyes, then I'd get a small amount of swelling & a hive, take Reactine, and it'd go away. Now, since the beginning of April (almost 3 full months now) I've had head to toe hives over 90% of my body, 8 episodes of face/throat/lips swelling (for which I've been referred for allergy testing, but dont go in for this until June 29th). I've been rescribed an Epi pen and had blood drawn for hereditary angioedema, been on prednisone and Hydroxyzine. I've cut out gluten and dairy, with no results. With all the reading I've done, apparently chronic hives (over 6 weeks) are rarely associated with food allergies. I've tried everything allergy related, vacuum a lot, steam cleane my entire house regularly, eliminated feathers from my bed, etc... Still hives!
Now since April I have been extremely exhausted, to the point that I can sleep for over 14 hours and still not feel rested, but always exhausted. I have gained weight despite not eating much. My hair is falling out in clumps. My skin & hair are dry. My temperature is very low (36.2-36.3 celcius are my normal temps in the mornings). I have such ridiculously horrible mental fog, disorientation, terrible memory problems, and balance isdues (there are days where I feel almost drunk because I can't walk in a straight line! I don't drink!). (This all effects my job, as I'm an NICU nurse, and NEED my brain to function, and I feel like I'm going downhill very fast). I feel like I am depressed (was on meds for this about a year ago, which didn't help, so I tapered off). And now I'm just so uninterested in life and so tired and exhausted that I barely leave my house unless necessary.
My grandmother on my mom's side was hypothyroid, as are 5 out of 5 of her children, and I've recently found out that some of my cousins are now being diagnosed too. I had my thyroid checked in September last year, and February this year, the level was 2.5 & 2.8 (normal level in Canada is 0-4 I believe), and this morning my doctor said she's hesitant to check it BC she is sure it's not going to change. I asked about testing for anti thyroid antibodies, and she agreed to this probably only to get me off her case! She said that TSH is the 'ultra-sensitive' test, and the gold standard thyroid test. However, I'm just wondering if there's any way that your tsh can be 'normal' but for me to still just not be responding to the stimulating hormone? (kind of like someone ringing the doorbell 10 times, but it doesn't matter because nobody is answering the door!)
Is there any other tests that I should be asking for? I feel so lost. Feel like I KNOW there's something wrong with my thyroid, and it's not being seen because my tsh is normal. Am I being completely crazy?
I've just read so much about chronic hives and edema being associated with low thyroid, and I have every symptom of it, and yet no diagnosis. I guess I will find out what my level was from this morning...but I'll probably cry if it's 'normal' again, because that was my last option in all this exploring for a reason why I'm falling apart!
Has anyone had experiences like this, or know anything about this type of thing?

 
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Old 06-20-2012, 09:34 PM   #2
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Re: Hives & angioedema & Hypothyroid with normal tsh? Hashimoto's?

I'm so sorry your doctor can't see the obvious. If you can't get her to come around, you may have to find another who doesn't agree that the TSH test is the gold standard... because it surely isn't!

Chronic hives are very frequently associated with thyroperoxidase (TPO) antibodies. They and thyroglobulin (Tg) antibodies are the cause of the autoimmune disease known as Hashimoto's thyroiditis. You must insist on the tests for these two antibodies. If you have a high titer of TPOs, assume they are the reason for the hives. You can't eliminate TPO Abs altogether, but a large Italian study from several years ago found they can be reduced by up to 40% by taking a daily selenium supplement of 100 or 200 mcgs.

TSH is often suppressed by high antibody titers, which is why it's an inaccurate sign of thyroid health. You can easily and accurately find out exactly what your thyroid status is by having your free levels of T4 and T3 measured. If free T4/T3 are below lab median, they are too low for almost all of the female population. Providing supplemental hormone to make up the dearth will alleviate symptoms and perhaps, even reduce the antibody titer to help with those hives.

Your family history is astounding. Don't let your uninformed MD try to talk you out of what you know in your heart is the problem. I know it can be difficult for people in government sponsored health systems to get exactly what they want from it, but it's important you don't back down until you do.

Best of luck!
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Old 06-21-2012, 05:21 AM   #3
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Re: Hives & angioedema & Hypothyroid with normal tsh? Hashimoto's?

Midwest1 said it better than I could....don't give up until you are properly treated for your obvious hypothyroidism.
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Old 06-21-2012, 03:11 PM   #4
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Re: Hives & angioedema & Hypothyroid with normal tsh? Hashimoto's?

Today my total episodes of facial edema climbed to 9. At work today my lips and cheecks got swollen. Pretty much the whole lower half of my face! Then my throat started feeling strange, almost I was getting sick, scratchy. Then it feels like there was weird pressure inside my throat, and it hurt to swallow. My voice started to sound very hoarse and almost disappeared altogether.
I don't believe this was connected to my breakfast (as in an allergy).
Boy am I ever glad that I went to the doctor to demand anti-thyroid antibody testing yesterday!
What are the general thoughts of a naturally derived thyroid replacement (Amour thyroid) versus typical levothyroxine synthetic replacement?

 
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Old 06-21-2012, 04:01 PM   #5
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Re: Hives & angioedema & Hypothyroid with normal tsh? Hashimoto's?

It depends on your FT3 levels. If you have good FT3 levels- in other words, your body is converting T4 to T3 on its own, I would take a T4 medication only. Taking desiccated in this case could cause your FT4 to fall lower and your FT3 to go too high.
You need to have your TSH, FT4 and FT3 levels to make that determination (I didn't see them all posted). If your FT3 levels are lower in range than FT4, I would definitely consider taking desiccated thyroid but know that the T3 in it is short-lived and you may experience afternoon energy crashes.

 
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Old 06-21-2012, 06:20 PM   #6
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Re: Hives & angioedema & Hypothyroid with normal tsh? Hashimoto's?

Is there anything else that I could have missed somewhere that could be causing all this grief? Allergies at first seemed most logical. But now it's been almost 3 months, and it doesn't fit the bill anymore I don't think. My face has become so swollen I'm almost unrecognizable.
I really just feel that all I can do anymore is sit here and cry, covered in hives, barely able to swallow or breathe, with no doctors that I visit willing to help me. Feel mike this is my body's way of trying to cash out and catch the next flight out.

 
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Old 06-22-2012, 03:37 AM   #7
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Re: Hives & angioedema & Hypothyroid with normal tsh? Hashimoto's?

Have you done an allergy panel??

 
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Old 06-24-2012, 07:32 PM   #8
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Re: Hives & angioedema & Hypothyroid with normal tsh? Hashimoto's?

I'm seeing my naturopath Tuesday to get results from a blood allergy panel he did. And on Friday I'm having allergy testing done by an allergist! Glad to be getting these appoinents done so I can have some answers! I'll also be calling my doctors office tomorrow to see if he can give me my bloodwork results over the phone.
Does anybody know offhand if a naturopath doctor (ND) can prescribe natural thyroid (Amour) in Canada (Manitoba specifically)?? Or does my MD have to do that?
Thank you all so much for all your help. It's good to know there are people that are caring and wonderful out there!

 
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Old 06-26-2012, 07:58 PM   #9
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Re: Hives & angioedema & Hypothyroid with normal tsh? Hashimoto's?

Hi Lindsay
I'm having the same problem. I've had hives now for 16 days with no relief. I've begged my dr. to do a thyroid test but she will only test my TSH which is in normal range. Although I told her of the numerous studies and message boards where I saw people with the same symptoms having normal TSH and high antibodies causing the problem, she told me I was wrong and that does not happen. She is referring me to an allergist, but I don't think this will help the problem. I've been taking benadryl but it's affecting my work and personal life as I'm drugged up half the time. I've had many symptoms that lead to hypothyroidism but no one wants to listen! I'm tired all the time, I used to be a "hot natured" person, now I'm so cold, my fingers turn blue. I've been doing weight watchers so I haven't really had a weight gain but I'm at a standstill no matter how little I eat and how much I exercise. I have joint aches and muscle pain but b/c I have psoriatic arthritis - she thinks that's the cause of that. I'm just at my wits end. I turn 29 in a few days and I'm getting married in 3 mos. I don't want to walk down the aisle covered in hives and drugged on benadryl.

 
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Old 06-26-2012, 08:00 PM   #10
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Unhappy Re: Hives & angioedema & Hypothyroid with normal tsh? Hashimoto's?

Hi Lindsay
I'm having the same problem. I've had hives now for 16 days with no relief. My lips have swollen 3 times so far (my dr. originally thought I randomly developed an allergy to my blood pressure Ace inhibitor but the lip swelling has continued despite the medication being removed) I've begged my dr. to do a thyroid test but she will only test my TSH which is in normal range. Although I told her of the numerous studies and message boards where I saw people with the same symptoms having normal TSH and high antibodies causing the problem, she told me I was wrong and that does not happen. She is referring me to an allergist, but I don't think this will help the problem. I've been taking benadryl but it's affecting my work and personal life as I'm drugged up half the time. I've had many symptoms that lead to hypothyroidism but no one wants to listen! I'm tired all the time, I used to be a "hot natured" person, now I'm so cold, my fingers turn blue. I've been doing weight watchers so I haven't really had a weight gain but I'm at a standstill no matter how little I eat and how much I exercise. I have joint aches and muscle pain but b/c I have psoriatic arthritis - she thinks that's the cause of that. I'm just at my wits end. I turn 29 in a few days and I'm getting married in 3 mos. I don't want to walk down the aisle covered in hives and drugged on benadryl.

 
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Old 06-26-2012, 08:51 PM   #11
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Re: Hives & angioedema & Hypothyroid with normal tsh? Hashimoto's?

In Hashimoto thyroiditis, the antibodies develop to the thyroid tissue but it doesn;t typically cause abnormalities in thyroid function early on. After awhile, like a few years, the antibodies have destroyed enough tissue to cause the hormones levels to drop into the low thyroid zone, with elevation of TSH, and low free T4 and T3. So it is absolutely possible to have very high anti-thyroid antibody levels with normal appearing hormone levels early on. Many people do feel tired during this phase and respond well to low doses of l-thyroxine. If your thyroid antibodies are negative, ask for an ANA test to check for lupus, as that is another autoimmune disease that can cause fatigue, hair loss, joint aches and pains and chronic hives.

 
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Old 06-26-2012, 08:57 PM   #12
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Re: Hives & angioedema & Hypothyroid with normal tsh? Hashimoto's?

Hi again, ladies.

Just wanted to add some URLs to some PubMed studies supporting my statement about how closely hives (chronic urticaria) are connected with thyroid antibodies. If you search PubMed, using key words "urticaria thyroid autoimmunity", you'll find tons of others. I would print some out and take them to your stubborn doctors (especially yours, Jamie!) Show them you are no dummies and can figure this stuff out yourselves.

Instead of allergists, you may be more successful by seeing a really good dermatologist who understands how antibodies attach themselves to skin mast cells, creating the characteristic welts of hives.
The following two studies relate to thyroid autoimmunity and hives:
http://www.ncbi.nlm.nih.gov/pubmed/22259654
http://www.ncbi.nlm.nih.gov/pubmed/21532759

This one proposes the possibility of levothyroxine treatment being beneficial to hives sufferers:
http://www.ncbi.nlm.nih.gov/pubmed/21323598

This one is specifically for you, Lindsay, as it pertains specifically to the incidence of autoantibodies in cases of HAE:
http://www.ncbi.nlm.nih.gov/pubmed/22288585

Hope it helps.
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Old 06-27-2012, 11:14 AM   #13
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Re: Hives & angioedema & Hypothyroid with normal tsh? Hashimoto's?

Hopefully you will get some answers soon. My issues started with my eyes...dx with TED in May 2005 but I was euthyroid and T3/T4/TSH all normal. By June, I was swelling all over hands, feet, arms, legs everywhere. Got an appointment with an endo and he said I was borderline hyper so put me on a small amount of meds. After about a month swelling decrease a bit and I felt find when I broke into hives all over. I had hives for about 2 months and finally got to see a dermatologist, she gave me some cream that helped with the hives but referred me to an allergist. Finally got to an allergist who said I was allergic to dust mites, pollen, rag weed etc and my reaction to it is hive. Said that my thyroid issues tipped the scales and my autoimmune system was being attacked. He gave my Zyrtec 10mcg twice perday and my hive disappearred. By January of 2006 (6 months from my TED dx) I went Hypo and am now 112 mcg synthyroid. ANyone who tells you that issues with your skin is not related to thyroid issues is crazy.

 
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Old 07-04-2012, 08:13 AM   #14
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Re: Hives & angioedema & Hypothyroid with normal tsh? Hashimoto's?

Thank you for all the replies!!
Just want to give an update on the most frustrating continued experience I'm still continuing to endure....
I went to a doctor (who was covering for my dr while he was away), on June 20 (9 days prior to my allergist apt) because the hives were still bothering me to no end, and I wanted blood work drawn. She took me a little more seriously than my doctor does, she acted concerned and ordered a lot of bloodwork, and was surprised to see that my dr didn't ever order any of the bloodwork before. I had to REALLY push to have her order tsh, and tpo antibodies, (she said that because I had my tsh done in sept and April that it won't change, but I told her to order it anyway). So 6 tubes of blood later and my near fainting, the blood was sent off (w clear instruction for them to send copies to the allergist).
I called the dr's office 3 times to make sure the results were in, and they gave me the result of the tsh over the phone (2.98....previously 2.67 & 2.5), and told me 'everything is normal' (even though, I'm pretty sure that being qualified to be a receptionist doesn't also qualify you to be able to interpret blood results, but hey, that's just my opinion!!).
They then sent a copy of this bloodwork to my naturopath, who immediately called me to tell me that I'm hypothyroid and that I need B12 shots.
Skip forward 9 days, I go to the allergist with a renewed sense of hope....that comes crashing down when she states that while she thinks my hives are NOT allergy related (I knew that already), because they don't match the presentation of allergic hives and have persisted for more than 5 weeks. But she refused to do a skin test (would have been nice to eliminate it based on evidence). So she then tells me that, surprise surprise, the bloodwork results taken 9 days ago were not forwarded, and my dr's office is closed for a holiday, and that I'd have to have ALL that bloodwork repeated again today, and see her again in 1 month, with instruction to take 2 Reactine/day (20mg total) along w 2 Ranitadine/day. The lab that I go to is the same lab that my dr's office uses to do their blood, however the lab personnel say that No, they cannot print my previous results and fax them to the allergist bc the results belong to my dr (even though it stated on requisition to send copies to allergist). SO FRUSTRATING!!!
So here we are, more blood taken, appointment galore, and not even one bit closer to an answer. I am happy that the tpo ab test was drawn, and she also ordered an ANA, which I'm guessing is looking for Lupus?
I want to badly to give up, as this is so damned tiring, and I'm sick to death of feeling like a hypochondriac. But then last night in my sleep, my lips got really swollen again, after feeling semi-normal for almost a while week (and by semi-normal I mean having only hi ea, even though covering my legs, abdomen and arms badly). So I guess this is a sign, keep fighting the battle, and by battle I mean doctors in Winnipeg that seem to have NO friggin clue what to do with me!
Should I maybe ask my doctor for a referral to an endocrinologist? Or is there some specialty that is better suited to deal with thyroid related disorders??
I'm at my wits end. Ready to jump ship and go to Minneapolis to the Mayo clinic (where every Canadian goes when they're about done fighting with the retarded Canadian healthcare system, and can afford to go out of country for healthcare (I can't, but would do so if it meant getting answers).

 
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Old 07-04-2012, 08:15 AM   #15
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Re: Hives & angioedema & Hypothyroid with normal tsh? Hashimoto's?

Thank you for all the replies!!
Just want to give an update on the most frustrating continued experience I'm still continuing to endure....
I went to a doctor (who was covering for my dr while he was away), on June 20 (9 days prior to my allergist apt) because the hives were still bothering me to no end, and I wanted blood work drawn. She took me a little more seriously than my doctor does, she acted concerned and ordered a lot of bloodwork, and was surprised to see that my dr didn't ever order any of the bloodwork before. I had to REALLY push to have her order tsh, and tpo antibodies, (she said that because I had my tsh done in sept and April that it won't change, but I told her to order it anyway). So 6 tubes of blood later and my near fainting, the blood was sent off (w clear instruction for them to send copies to the allergist).
I called the dr's office 3 times to make sure the results were in, and they gave me the result of the tsh over the phone (2.98....previously 2.67 & 2.5), and told me 'everything is normal' (even though, I'm pretty sure that being qualified to be a receptionist doesn't also qualify you to be able to interpret blood results, but hey, that's just my opinion!!).
They then sent a copy of this bloodwork to my naturopath, who immediately called me to tell me that I'm hypothyroid and that I need B12 shots.
Skip forward 9 days, I go to the allergist with a renewed sense of hope....that comes crashing down when she states that while she thinks my hives are NOT allergy related (I knew that already), because they don't match the presentation of allergic hives and have persisted for more than 5 weeks. But she refused to do a skin test (would have been nice to eliminate it based on evidence). So she then tells me that, surprise surprise, the bloodwork results taken 9 days ago were not forwarded, and my dr's office is closed for a holiday, and that I'd have to have ALL that bloodwork repeated again today, and see her again in 1 month, with instruction to take 2 Reactine/day (20mg total) along w 2 Ranitadine/day. The lab that I go to is the same lab that my dr's office uses to do their blood, however the lab personnel say that No, they cannot print my previous results and fax them to the allergist bc the results belong to my dr (even though it stated on requisition to send copies to allergist). SO FRUSTRATING!!!
So here we are, more blood taken, appointment galore, and not even one bit closer to an answer. I am happy that the tpo ab test was drawn, and she also ordered an ANA, which I'm guessing is looking for Lupus?
I want to badly to give up, as this is so damned tiring, and I'm sick to death of feeling like a hypochondriac. But then last night in my sleep, my lips got really swollen again, after feeling semi-normal for almost a while week (and by semi-normal I mean having only hi ea, even though covering my legs, abdomen and arms badly). So I guess this is a sign, keep fighting the battle, and by battle I mean doctors in Winnipeg that seem to have NO friggin clue what to do with me!
Should I maybe ask my doctor for a referral to an endocrinologist? Or is there some specialty that is better suited to deal with thyroid related disorders??
I'm at my wits end. Ready to jump ship and go to Minneapolis to the Mayo clinic (where every Canadian goes when they're about done fighting with the retarded Canadian healthcare system, and can afford to go out of country for healthcare (I can't, but would do so if it meant getting answers).

 
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