Thyroid Disorders Community
26k Members
Avatar universal

Tirosint, WPThyroid conversion, adenoma

Has anyone had an allergic reaction, intense itching and little itchy blisters from pores, when they started Tirosint ? I have had the itchy blisters for a while that come and go ever since my thyroid went south but the over-all itching is new and the increase in blisters is awful. Ingested antihistamines don't help. Benedryl spray helps a little. Topical cortisone, not at all nor topical anti-fungal. My dose went from 75 mcg Mylan levothyroxine to 88 mcg Tirosint. Why does Tirosint come in such a strange dose anyway ? It seems hard to believe I would have an allergic reaction to the most pure hypoallergenic version of T4. I have been on it for nearly 2 weeks. The reaction was immediate. I'm starting to think I'm allergic to T4, period, since I cannot get better after 8 years of trying.

Turns out that WPThyroid is covered under my insurance and the doctor is willing to prescribe it. My current doses of thyroid meds are 88 mcg Tirosint and 35 mcg Cytomel. How would I convert that to the dessicated thyroid. Obviously I would still have to take extra T3.

Only recent progress is that one of the 3 new doctors that I've seen since May (2 "integrative, anti-aging, geriatric but AMA as well", one a regular general AMA practitioner who claims knowledge in thyroid dysfunction) finally ordered the MRI of my pituitary I have been asking for since 2005 and gee, imagine....pesky little pituitary adenoma. Think that's why my TSH is so low, idiot doctors ? Why my circulating thyroid hormones are so low too ? I've told every doctor I've seen, including at the pituitary center at Cedars in LA, that this all started after bad whiplash and herniated disc car accident and has only gotten worse as that accident has been compounded by others causing more head trauma  But, you know, the MRI doc says he doesn't know how to "treat" it, has no referral for me, and basically sent me back to the woman who referred me to him, telling me I needed an ACTH-stim test but that he couldn't do it and wouldn't know how to interpret it. My serum ACTH test was abnormal. Now the doc that gave me the Tirosint is insisting that I have to do a 24 hour urine cortisol test before she will give me the stim test.....OK, I had one done back in 2010 at the pituitary center. It came back high out of range but I was told it was "fine" and that I needed to stop taking thyroid medication immediately or I was "going to give myself a heart attack and dissolve my bones" even though my bone density had gotten better with the addition of T3 and a stress test and blood markers showed my heart was fine. at that point my PCP started giving me the T4 and T3 I asked her for, since no endo would, and blood testing me every 6 weeks to adjust the levels. at 150 mcg T4 and 30 mcg Cytomel my levels were where it seemed they should be ...FT4 at 1/2 the range, FT3 in the upper quarter....but edema was worsening, I was getting random spasming in my feet and an occasional charleyhorse in my calf, and I started gaining weight and having GERD symptoms and abdominal bloating. So my PCP said she didn't know what to do and said I had to go back to endos, and then she retired and closed her office. I am SO lost.

Anyway, so I did the 24 hour urine test again but the doctor's office neglected to tell me to throw the first am sample away....and then, after I researched how to interpret the results and found out the protocol was violated, the nurse at the doctor's office told me"That's the way we always do it, you collect everything in 24 hours." I told her she'd better check with the doctor and the lab. whoops. How many other patients have been mis-diagnosed by this office ?  My 24 hour saliva test for cortisol was abnormal, high in the am and falling off rapidly in mid-day, then rising in pm but not to optimal levels.

I just keep getting worse....gained 25 lbs in 2 months, 4" around the waist, and everything hurts and my hair has fallen out again. I am 50 + lbs over my formerly stable lifetime weight, yet have no appetite. My cholesterol has soared along with my blood pressure.The edema is fierce. One of the most recent docs wanted to immediately put me on statins and Prilosec, even though that's usually contraindicated for thyroid. When I told him I
d been on Prilosec before and it did nothing, only T3 made the gerd-like symptoms go away, he told me he wasn't interested in my past. He found that I have MTHFR 1298 cc, but had no idea what that meant. I see the other stupid doctor tomorrow and at least want her to give me a script for SOMETHING so I don't die while looking for yet another doctor. Let's see....so far 6 endos, 2 dermatologists, 3 other "thyroid specialists", 1 gastroenterologist, a neuro-hearing doctor because of the ringing in my ears blahblahblah. Please shoot me, but not before you give me the WPThyroidd conversion formula.

6 Responses
Avatar universal
41 yr old female; pap carc dx 2/12; thyroid removed 3/12; rai 7/12.  After rai, began taking 100 mg compounded levo. Took medication successfully for 1 year. 6/13 stopped med to go hypo to check thyroglobulin levels.  When I went back on med, same rx, I became extremely hyper & also developed what I call the shakes to the medicine. I would take med in am & by evening, I would have internal shaking in my head, neck & chest. Tried to alter dose, went hypo but still had shakes.tried new batch of compound w/same shakes. Eventually went on to compounded Cytomel 20 mcg 2x per day where I seemed to do much better. By Feb/Mar of this year though when I picked up my next rx of Cytomel (which I had been on since December), I developed sleep disturbance every night & significant chest pain & also the feeling of just being buzzed or over medicated (tsh was normal). Stopped Cytomel & began taking another compounded Levo the shakes came back and it was my whole body--in addition to shakes, I had muscle twitches in feet & legs. Stopped levo, started Tirosint 88mcg. I seemed to have a little bit of the shakes for the first 3 days or so of the med but then it seemed to quell.  I did develop significant scalp pain & left ear pain. Then on my fourth week taking it, I developed itching on my face and arms and I think a hive or two also. I stopped taking that & am now taking WP Thyroid.I started at 16.25 mg for 2 days I raised to 32.5 on the third day and then 48.75 on the fourth day (my dr wants me to take 78.25 mcg in total). I found when I took the 48.75 I developed itching on the head again. In addition, my ankles swelled a little and face felt hot or flush. I backed off and took 32.5 today-felt chest tightness but no itching.32.5 not enough to keep tsh low. So worried I can't take thyroid meds. (I do have a lot of intolerance to foods and certain meds) endo wants to send me to naturopath. curious how you are at this time??
Avatar universal
I haven't found any help at all. I went back to T4 plus Cytomel. The itching stopped but I still have the rash. No one cares.
Avatar universal
I care.  In the entire universe of online forums, boards, medical papers, and scholarly articles, you are the only person I have come across who has (is?) experiencing symptoms like my own: wierd puffy swelling, freakish mushy subdermal cooked cauliflowerlike lumpiness in my not so long ago well sculpted athletic calves; the complete disappearance of evidence of achilles tendons (instead it looks like someone piped cold mashed potatoes all around the lower back ankle, in fact the mushiness protrudes as far as my ankle bone...fabulous), and this odd "memory foam" type inflammation is spreading everywhere.  Last November I was diagnosed with pretibial myxedema (the itching that progresses to a cycle of skin changes accompanied by a thickened ( again just weird)  subdermal deposition of mucin (hyaluronic acid) in response to cytokine/fibroblast autoimmune response to the thyroid hormone activity in the receptors in the pretibial region (what? women have thyroid hormone receptors in the pretibial region and in intraocular tissue?! yes) .  I do not have Graves.  I have been dx'd with Hashimotos that cycles to Hashitoxicosis (hyperthyroid) because my thyroid is "dying".  Unless you happen to catch a thyrotoxic state it will not show.  I have had the PM rash for a couple of years on and off and assumed it was hives.  I cannot write much now.  I will message you tomorrow.  Maybe we can help each other.  I am sort of terrified about this weird swelling everywhere. Seven months ago my biceps, calves, etc. were considered "cut", now they are covered by this strange froth that began localized and has spread.  I WILL tell you more of what I have found.  This did not begin until I saw a top endo who jerked me around on all sorts of thyroid and bioidenticals.  Maybe we can help each other.  
Avatar universal
I am convinced I have myxedema and know that the treatment for it is usually high doses of T3, but try to get a doctor to listen. Every time I bring it up they look at me like I've grown horns and tell me I couldn't possibly have it. But I think they are so il-informed that they only associate the term with hallucinations and the like.

I had forgotten about those blisters with Tirosint, so thanks for bringing me back here to revisit this. I rarely come to MedHelp anymore. Since Tirosint is the most pure form of T4, I wouldn't be surprised if it indicated that I have some kind of T4 intolerance. I hope not.

I changed to NatureThroid a month ago plus extra Cytomel at the equivalent dose of what I was on with synthetics. I am MISERABLE. Have not felt this badly in a very long time and last week my legs suddenly swelled up and looked like elephant legs and my feet looked like giant marshmallows. Many veins broke and the swelling was so intense that it caused a 3" bruise on the back of one ankle. Painful. Scary. Came out of the blue, since I'd been on NatureThroid for over 2 weeks and hadn't felt any difference. But some amount of edema is always there, it's painful, and now with the broken veins it just looks even more disgusting. And I look like I have cellulite over my whole body. Plus I no longer have lower eyelashes and the upper ones are sparse and my hair  continues to fall out in cycles. and I still have the rash. Oh JOY.

Do you know this study ? The title is deceptive, because it isn't really about myxedema psychosis , at least not very much. Highly informative. Published in 2003.

Avatar universal
Also, if you think this stuff is auto-immune related ( and I trace mine back to extreme reactions to mycotoxins...3X normal levels at IgA, IgG, IgE levels according to ELISA testing on top of the mild TBI, yet I don't test positive for ANY allergies to anything else) have you considered taking LDN ? I am considering it.
Avatar universal
are you sure it myxedema ? have you check any pitting on skin .
Have an Answer?
Top Thyroid Answerers
649848 tn?1534637300
Avatar universal
1756321 tn?1547098925
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.