Dh Thyroid And Dapsone

[eatmeat4good]

Hi,

I'm 4 months gluten free after 7 years of multiple misdiagnoses with active DH lesions.

My thyroid is visibly swollen.

I had blood drawn yesterday but no results yet.

I'm scared.

I have had a terrible time healing the sores and keep getting new lesions.

I am strictly gluten free. Eat only meat, vegetables, fruit, nuts. (one gluten free treat per week)

I noticed I get terrible reactions from the slightest iodine and haven't been able to heal the sores.

So I have been avoiding iodine completely. Reacted to shellfish badly.

I asked the Dr. for Dapsone. She put me on 50 mg. per day.

I'm scared to take it as I have read the side effects. But I am getting desperate to heal the sores.

Is it possible the thyroid is swollen because my metabolism suddenly started working due to being gluten free?

I don't want to take iodine. Is all thyroid medication iodine?

Will Dapsone be able to control the iodine DH outbreaks?

I know there are some people with thyroid problems and DH. Have any of you taken Dapsone?

Could a swollen thyroid resolve on it's own?

I should wait til my results are in to see what I'm in for.

I just feel like I'm in a no win situation.

I'm completely depressed.

This disease has destroyed my face, body, mind, marriage, and career, slowly and steadily for 7 years.

I have PTSD caused by years of Dr.'s who didn't believe me.

I'm reluctant to add an antidepressant to the cocktail I'm about to ingest.

But I may have to.

I think I just vented...really this was written to ask about the thyroid/iodine/DH/Dapsone dilemma.

Any comments welcome.

[Hopeful1950]

Your post hit me where it hurts. I, too, waited 7 years to figure out what this is. I was told over and over again that I was a "picker" and had neurotic excoriations because I scratched so much. Thank God my marriage has survived, but my career has not, I am covered with scars and I no longer do the things I used to love because I have to be covered up all the time and I get too hot. But...after 8 months gluten free I think I may be seeing a light at the end of the tunnel.

Regarding your Dapsone/iodine question...Before they realized DH was caused by gluten, they prescribed Dapsone for it. People would continue to ingest gluten and stay on Dapsone for many years because it would control the rash. I think that if you get the dose right, it might allow you to have iodine in your diet without itching. There is a man named Richard who posts on these forums who took Dapsone for years and so did his Dad. I hope he responds to your post. He and his Dad both did well on Dapson, but Richard is now gluten-free and has been able to discontinue the drug. Do a search in the forums on Dapsone and you will probably find his posts.

I tried Dapsone so I'll tell you my experience with it. I started at 50 mg/day and titrated up to 100 mg/day before it controlled the itching and the rash started to heal. All along I was monitoring my blood counts which gradually dropped until I was faint all the time, a bit nauseated and I had blazing headaches. I also noticed a distinct change in personality. Grumpy (likely because of the headaches). We dropped the dose to 75mg/day to see if my blood counts would rally, but at 75 my symptoms were not controlled and the side effects were not much better. I weaned myself off about a month ago and my skin went crazy. After two weeks of that, I caved and took a round of Prednisone which kicked it pretty well. A little over a week since the last dose of Prednisone and I am not itching that bad, no serious new blisters and things are better than they have been in seven years. I think the gluten free/iodine free (prepared only by my own hands) diet is actually starting to work. Knock on wood.

Don't give up. You are doing all the right things. This is a very difficult thing to deal with because few folks understand what we are dealing with, and unfortunately some of those folks are doctors. I hope the thyroid thing will turn out to be nothing. Best of luck to you and I'll be looking to see what the results of the thyroid thing are. If you do decide to take Dapsone be sure that your provider carefully monitors your labs weekly.

Wendy

[eatmeat4good]

Wendy,

Thank you so much for your post.

I was diagnosed with neurotic excoriation 3 times when I tried to get a biopsy. Just had no idea what could cause so much pain.

You said they monitored your blood. What is it that you are monitoring when you are on Dapsone?

I asked the Dr. about it and she said take it for two weeks before calling her to increase but if I was allergic to it or became depressed or suicidal to stop taking it and let her know.

She said nothing about monitoring my blood. If you tell me what to look for I will ask for the tests.

This is ridiculous.

I am self-pay no insurance so I need to know if it is the liver or kidneys or hemoglobin or what will get out of whack on Dapsone so maybe I won't have to pay for a full CBC...or is that what is needed?

Sorry you have the same problem.

The pain and scars are terrible. For the first few years it didn't scar...but no diagnosis..and when it did scar...well you know the drill. skin picker...neurotic excoriation, I insisted it wasn't and they always said, "That's what they all say."

I feel sick about how many DH patients leave dermatologists offices with the same rude comments.

Loss of gluten, salt, husband, job, friends, face, body, mind,...Jeez I'm beginning to feel a bit like the Biblical Job. Maybe I could feel better if I make up flyers on DH and sit outside the Dermatologists office and hand them out as people leave.

But I haven't lost my son. He is gluten free and it resolved asthma and muscle weakness and fatigue and what we thought was teenage depression...yeah right. He is so happy to be gluten free. Just thought I'd share one good thing that did happen.

I had read that Richard took it for like 20 years. I am praying I am like him. I need it bad and I hope you are right that I can eat a little salt or take thyroid meds if I need them without breaking out.

Once again, thank you for relating your story. It means a lot to me to be able to share and to find I'm not the only one. But I'm so dam mad that I was referred to a Psychiatrist for this disease all these years.

[eatmeat4good]

Just want to add I found a very informative thread on Hashimoto's written yesterday so all of you who posted there don't have to repeat yourselves here. It was very helpful.

[Hopeful1950]

They did a baseline workup for blood count and liver function, then tested after two weeks on the Dapsone, then another two weeks and on and on. My liver function remained okay, but I became very anemic which is what made me have to stop taking the drug. They are supposed to test at regular intervals as long as you are on it. Your doc should be able to look in the PDR and see what is recommended.

There is also a topical called Aczone (topical Dapsone) which I have found to be a somewhat helpful if I catch a breakout right when it starts and I use the topical right after a bath so it absorbs well. Then after letting the Aczone absorb I use a 1% hydrocortisone preparation on top of it. Not always successful, but sometimes will make a new breakout less severe. I think the topical is quite expensive, but might be worth checking out. Maybe you could get a sample before buying any.

Again good luck.

Wendy

[cassP]

1st off let me say- that my DH was very small & insignificant- it didnt even show up untill my 3rd week of being gluten free- just a small patch on my stomach like 1 1/2 square inch... i read about people taking Dapsone, but i HATE antibiotics... so i thought to try my ionized silver ointment (a natural antibiotic)- it took the itch away immediately- and then it took some time to fade- like 3 months.. still a little discolored, but pretty much gone.

a year ago, i had suspicious itchy bumps on my forearm, but didnt know anything about DH, and they just went away on their own.

now im on Synthroid (T4) and Cytomel (T3).. about 2 1/2 months now. anyways last week-> my forearms erupted into a RED HOT BURNING bumpy rash... but there was no itch. so i dont know exactly what it was... the bumps looked like they were the beginning of DH... but no itch. i triple checked my drugs were gluten-free, and they are... i dont understand why i would have this iodine reaction last week for about 5 days when i didnt have a problem before. and luckily this week, it's gone

so, idk.

??? have you had a thyroid panel done??? w/ gluten intolerance & a swollen thyroid, sure sound suspicious of Hashimoto's.. you will probably have to get on meds. i THINK the meds have some form of iodine in them, but im not sure of it's effect.. only my experience. my stomach DH has not returned.

[eatmeat4good]

Thanks to both of you for posting so much information.

I really appreciate it.

I think they only drew a TSH not a full thyroid panel.

I should know something tomorrow as to the results.

I'm grateful you both know about testing and I will ask for the tests you suggest.

[eatmeat4good]

My thyroid test TSH came back normal.

Now they want to do an ultrasound of the thyroid.

Hopeful? Um my Dr. said the topical form of Dapsone is more toxic than the pills so she didn't want to give it to me. So I find it strange that you can tolerate that. Do you still have to get the testing of your blood? She was adamant about that with me. I thought it was strange that the topical would be more toxic but she was certain and since I have it on my face, back, and arms it would be too much for my system.

[Hopeful1950]

I think she has it backwards. With Aczone there is no requirement to have blood testing when you are using it. They give it to teenagers for acne. I guess if you covered your whole body with it there might be a problem. I just use it for a couple of days on new breakouts and it sometimes slows them down. Do an internet search on Aczone and you'll see that it is relatively safe without the systemic side-effects of the oral medication. The only thing I have noticed is that it can make my skin dry where I have applied it. Of course I haven't applied it to my whole body

[eatmeat4good]

This is so crazy.

If she got that backwards then did she read my lab results correctly??

Thank you very much

Really makes me wonder.

[YoloGx]

Just wanted to say that I found some info for my friend who has Hashimotos as well as celiac--he was having a very hard time due to the cold weather. By looking it up on the Internet we discovered that there are various foods that are safe ways to get a small amount of iodine in one's diet--and other foods he has to completely avoid like kale and cabbage -- or just have in very small amounts. He was eating a high kale diet due to the fact it is still growing in the garden as a winter crop. Being off it he feels much better now. Looking at diet might help you too with the itching rashes etc. I'll look at my old emails and send you the url.

Bea