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cshows81

Type 1 diabetes, severe hypothyroidism and chronic hives

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cshows81

Good morning! I am a new member looking for some new treatment ideas.

 

I have been a type 1 diabetic for 25 years now and was diagnosed with Hashimoto's disease 16 years ago. I have been a brittle diabetic basically since diagnosis. I use a pump/CGM for my diabetes and am on 400 mcg of Levoxyl for the hypothyroidism. I also take Diovan 80mg for kidney protection.

 

2 years ago I started having hives that did not respond to over the counter antihistamines. After suffering for 6 months I found an immunologist who is treating me with Zyrtec 10mg, Zantac 150, Plaquenil 200mg (all BID) and Doxepin 10mg, Atarax 50mg (TID). After 6 ER visits for severe urticaria and angioedema I administer an Epipen as needed (4 times to date). All of these drugs make me feel terrible, but every time we try to wean me off of one I experience a severe case of hives. As it is now I have hives on a daily basis, but they are manageable.

 

About the same time the hives started my TSH went to 229. At first my endocrinologist thought I might have Celiac, but my intestine biopsy came back negative. Currently my TSH is 117 and my doctors want me to try immunosuppressants. I am very concerned about adding another drug, especially one so dangerous.

 

I work full time in a management position and am trying to finish my degree with night classes. I absolutely refuse to let these diseases rule my life. Despite the above mention issues I consider myself an upbeat and happy person overall. I would love to find a more natural approach to my medical issues and some relief from the constant itching would be great. Any suggestions are welcome! Thanks for reading and God bless!

:)

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jenb

Yikes! You have a lot on your plate, but a great attitude. I can't offer any assistance...just wanted to welcome you to DF. I have no doubt that someone here on the forums will be able to help.

 

Jen

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foxl

Have you had antibody testing, to determine what it is that you are allergic to?

 

I was wondering about foods ...

 

I too have both diabetes and thyroid autoimmunity, but not nearly as aggressive as yours.

 

Could you have some food allergies?

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AngelKitty

Hi there and welcome to the forum.

 

As a fellow allergy sufferer, I feel your pain. I also suffer from acute uticaria as well as allergies, so I know exactly where you're coming from.

 

My allergies started when I started taking certain meds - did your med list change 2 years ago? (including insulin, did you change type/brand).

 

As Linda said, I'm surprised your Immunologist hasn't found the source through your blood work or through process of elimination.

 

Keep us posted of your progress.

 

Sending you a (((hug)))

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rak1978

Welcome to the forums! I have to say, I'm so not happy for you that you are going through this, but I am glad not to feel alone!

I, too, have hypothyroidism, type 1 D, and chronic autoimmune urticaria. I've had 3 major episodes (like 6 mo-1 yr period of time each time), countless minor episodes, and 1 er visit due to lip/mouth/nose swelling along with the hives. I haven't had them since late January, but that round was from May 09-Jan 10. Fun stuff. I've been on zyrtec (40 mg/day), prednisone, epinephrine, and I was on one other that I can't remember the name of at the moment (hypo moment!). I had allergy testing that came up negative to everything (except cats) and my doctor said based on the look of the hives, and my description of the onset, that it was NOT an allergy. It's a wacky immune system response. Basically, I am my own enemy. There are certain triggers that bring it on (sometimes the adhesive on my sets can set them off, illness, stress, etc...), but the immune system seems to take forever to calm back down.

Anyway, I can relate and it sucks. No way around that.

I hope yours go into "remission" soon. I am here if you ever feel like venting about it.

Take care!

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foxl

Hmmmm ... (thinking of myself, as usual, sorry!).

 

I had not thought of urticaria as perhaps another piece of my story ... my Mom had recurrent urticaria as a child. I have (SO FAR) had only episode, but it was horrible -- a severe emotional reaction at age 15! I was sick for 3 days ... due purely to emotional shock. Fever, and hives, only symptoms.

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Seagal

I've been reading about the benefits of coconut oil on rashes, infections, gastric distress, dry skin, etc., may sound like a snake oil commercial, but if you google coconut oil benefits, you might find something helpful:)

 

You sure do have a full plate, and welcome to the forum.

 

Keri

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cshows81

Hi, everyone! Thanks for your encouragement! It sounds like there are quite a few people on here who are experiencing multiple auto-immune issues. The endocrine and immune systems are tricky things! I will keep you posted if any of my treatments start working.

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vjanga

Hi cshows81,

 

I see that you are from Harrisburg, MS. I have done my graduation from Mississippi State (Starkville Campus). The endocrine system is little tricky, if one gets disturbed it disturbs the others because all these secrete hormones into our bloodstream. One good natural way for your rashes is to apply coconut oil (Seagal mentioned above and my mom also used to do this).

 

Do you get hives when you eat any particular kind of food ? (or)

 

Do you feel allergic when you get in contact with any stuff ?

 

One advice that

 

1) Supply enough Iodine rich foods.

 

2) Protein is the main ingredient for hormone production for any endocrine gland, so take natural protein rich foods like sprouts.

 

Please watch this super food video : Super Food & Health Food, Sprouts, Nutrition by Natalie

 

3) Please stop all white stuff (polished rice, processed food like bakery items, flour etc...)

 

4) Please make 50-60 percent of your food as natural food.

 

 

---- Hope this helps...VJ -----

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Jenny

The only relief I get is from steroids; however, there is a lotion called CeraVe that I use that helps the itching!

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lizm33

Sorry to hear your story - parts are familiar. I was diagnosed with Type 1 at age 28, then developed Hashimoto's thyroiditis and auto-immune-based seizures within 2 yrs of that date (all 2006-2008). In Jan 2010, I started breaking out into hives and angioedema (facial swelling) for no reason. It has taken months, BUT I think we have an answer:

 

Ask your Dr. to test you for the GAD antibodies. These antibodies are linked to Type 1 and thyroidism for sure, and my seizures, but we aren't sure about the hives. However, the treatment, IVIG (intravenous immunoglobulin) is so far controlling the majority of my hives and seizures. I have only had one infusion (you need about 1/month), and I should see more improvements after the next couple of infusions.

 

Other than that, here is what I have tried:

 

hydroxyzine - an anti-itch prescription. I took it in combination with Benadryl for months as the only thing that could bring the hives down to a non-torture level of itch. I was taking 50mg of Benadryl at least 4 times/day, and 25-50mg of hydroxyzine around 3 times/day. The sleepiness accompanying Benadryl is something your body will get used to and you won't feel sleepy after a week or 2. I drove myself up to a high dose in a week's time, and I have been fine since that admittedly difficult week.

 

I am on both Plaquenil and cyclosporine - both immunosuppressants - and singulair. I tried zyrtec without any success. I don't think the Singulair does anything either, but oh well.

 

My doctors tried unsuccessfully to convince my insurance company to pay for Xolair injections. It is an asthma medication that has been shown to help hives, but only in research studies. Without diagnosed asthma, Blue Cross was unwilling to cover it, but you could ask your doctors to try with your insurance.

 

My doctors told me that nothing topical was going to work, but I tried anyway. NOTHING worked, and it often made things worse, since I then had to wash it off. I don't know if water makes things worse for you, but water - really the drying period after exposure to water - was awful.

 

I went to a naturopath, who suggested some IgA and IgG tests for the other docs to run, which didn't return anything useful. She talked a lot about two different sides to the immune system, and trying to figure out which one was dominant. For one, caffeine exposure actually helps, and for the other it hurts. My hives were typically better after the morning coffee rounds, so I started drinking it in the afternoon as well. It could just be a placebo effect, but I like the placebo.

 

I have a team of doctors at Brigham and Women's Hospital - my primary physician, neurologist, allergist and my endocrinologist at Joslin all email each other whenever they find something. If you are in Boston, let me know and I would be happy to share their names.

 

Good luck!!

 

 

Good morning! I am a new member looking for some new treatment ideas.

 

I have been a type 1 diabetic for 25 years now and was diagnosed with Hashimoto's disease 16 years ago. I have been a brittle diabetic basically since diagnosis. I use a pump/CGM for my diabetes and am on 400 mcg of Levoxyl for the hypothyroidism. I also take Diovan 80mg for kidney protection.

 

2 years ago I started having hives that did not respond to over the counter antihistamines. After suffering for 6 months I found an immunologist who is treating me with Zyrtec 10mg, Zantac 150, Plaquenil 200mg (all BID) and Doxepin 10mg, Atarax 50mg (TID). After 6 ER visits for severe urticaria and angioedema I administer an Epipen as needed (4 times to date). All of these drugs make me feel terrible, but every time we try to wean me off of one I experience a severe case of hives. As it is now I have hives on a daily basis, but they are manageable.

 

About the same time the hives started my TSH went to 229. At first my endocrinologist thought I might have Celiac, but my intestine biopsy came back negative. Currently my TSH is 117 and my doctors want me to try immunosuppressants. I am very concerned about adding another drug, especially one so dangerous.

 

I work full time in a management position and am trying to finish my degree with night classes. I absolutely refuse to let these diseases rule my life. Despite the above mention issues I consider myself an upbeat and happy person overall. I would love to find a more natural approach to my medical issues and some relief from the constant itching would be great. Any suggestions are welcome! Thanks for reading and God bless!

:)

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Scout

Another take on the hives issue is an allergy to an ingredient in the coating and/or binding agent used in generic pills. Many years ago my doctor thought I had a problem with a bad batch of Levothyroxine, but over time it proved to be an non-medicinal ingredient in the pill itself because I had the same reaction (would scratch my chest raw) with two other completely different medicines for different health problems.

 

Now I take natural dessicated thyroid and have zero problems with that. I also had no allergy problems with Synthroid, but Synthroid does not work nearly as effectively for me as dessicated thyroid.

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Millerb023

My 5 year old son was diagnosed with type1 diabetes last november. We have recently moved to washington and within the last 5 days he has been breaking out in hives when he goes outside. Also, at night he has been having lows in his blood glucose. I was wondering if the two went hand in hand. His hives only last a short time and once he comes inside the go away quickly after that. Thank you for reading I am just a very concerned dad.

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cshows81

I was diagnosed at 4 and according to my mother any type of stress or illness could cause a rash, but it was always short-lived. The only thing is that you have recently moved and the possibility of your son having an allergy to something outside is high. It sounds like you are a very observant parent so I would maybe just keep a log of where and when he breaks out to see if you can pinpoint the cause. Good luck!

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atquirk

My 15 year old son first started with Urticaria in June 2010, Hashiomoto thyroid (hypo) in Nov 2010 and Type 1 Diabetes in Feb 2011. The details of the last two years are quite extensive. He’s been on many different medicines from Prednisone to Plaquenil, different allergy medicines. The only thing that seems to control his hives is steroids (which we hate). He is currently taking Methotrexate (another drug we are scared about him taking) for the hives in an attempt to get him off of the current steroid he is on, Medrol (steroid). Interesting side effect of the Methotrexate is that it has put his type 1 diabetes into remission (no insulin for over 4 months now).

I want nothing more than for my son to get some level of consistency back from a health standpoint; AND GET OFF THESE DANGEROUS MEDS. He's an amazing kid (1st in his sophomore class of 450 kids; even with these health issues). Sorry, dad's love to brag about their kids! This combination of issues isn't common so I'd like to have some conversation with anyone experiencing the same types of issues as a few of you have stated in this thread. Thank you all for sharing and I’m sorry you are going through this. We are trying to get as much information about these autoimmune issues as possible.

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