I had a similar reaction to the adhesive on a Pain Patch - my skin blistered and was tender and weepy for near a month. Steroids helped.
You've seen one of the best, Mayo Clinic. They should be able to figure out what's going on. I'm so very frustrated sometimes with the amount of time it takes to obtain a proper diagnosis and then the right treatment. You're not alone in that regard.
I assume you've consulted several allergist and dermatologists - if not I would do so. Sometime that new "set of eyes" picks up something the others did not see. I saw eight doctors before I got a right diagnosis some years ago. Thank goodness for that eighth doc - I could have died.
So though I really do know the frustrations - keep searching - and keep screaming. It is true that the squeaky wheel gets oiled first - even in the medical community.
I wish I had better answers for you. I'm so sorry you have to experience this pain and frustration. My heart goes out to you.
Please keep in touch. I'll look forward to any further comments or future updates.
I forgot to add that Gabapentin has not been effective for me. As you know everyone's system is different and can react differently to medications.
I was very reluctant to try Lyrica (similar drug to Gabapentin) when my PMP suggested it. However when you're in pain you'll try most anything.
Lyrica has been a "wonder drug" for me. It treats my nerve pain better than anything else I'm currently prescribed or anything I've been prescribed in the past. I would not have believed that to be true and I didn't believe it would help, especially after no relief with Gabapentin.
It's just as thought - if you haven't had Lyrica you may want to ask your medical provider about it.
Again I wish you the best.
Thanks for the feedback - I tried Lyrica in 2005 for migraines. It worked fantastic for 6 weeks then it stopped working. They upped my dose but it still didn't do any more and I gained 30 pounds in about 6 weeks. The doctor said I must be eating more bread or desserts ... Really? At least now they list weight gain as a possible side effect.
I would be willing to try that medication again - for the short term at least. I could stand to gain some weight since I have lost 18lbs since January and am down to 108.
I have to try something to get a little relief from this burning - it is really getting to me. I'll call my Doctor tomorrow and see if I can try Lyrica. I think I started on Lyrica 75 last time and then went to 150.
I have not seen a dermatologist or an allergist. I think of allergies to dogs, cats, and pollen - not medications when I think of an allergist. If there isn't one local I'm sure there is one in Green Bay. I know of a good Dermatologist in Iron Mountain and will see about getting an appointment. Thanks for those suggestions.
The two doctors I saw at Mayo are stumped. They want to send me to a Neurologist. Not sure about that. My acupuncturist won't do acupuncture on my hands because she figures it would trigger a major swelling episode. What would an EMG do ... no thanks. No way I am going backwards.
I have had a lot of things ruled out but no diagnosis yet. I see improvement but it is agonizingly slow. I just need something to get a break from the burning.
Allergist cover all kinds of allergies - including allergies to medications - allergies to things you may "touch" and so on.
Mayo may want to rule out a condition with your nerve endings - that in rare cases may cause skin type of problems. There must be many syndromes or conditions that we the average person wouldn't think of that can cause skin issues.
Raynaud's disease or Syndrome is a circulatory condition. The smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas (vasospasm) and makes changes in the skin of your fingers and to a lesser degree your hands and feet. Now to me that's not something you would normally think of when you skin had issues - so it sounds like Mayo is trying to cover all the bases - as they usually do.
I hope they get to the bottom of your problem. It sounds miserable. I'll watch for your comments - and or updates.
Does Lyrica help you sleep?
I started Lyrica 75mg today and now I can't take Xyrem tonight as they don't play well together. I take Xyrem for narcolepsy. I'm hoping the sleepiness I have had all day will get me through the night or I won't be able to stay on this stuff.
Hello klynnk1. I've been following your conversation with Tuck.
I have a few questions -- you were doing better with hydrocodone -- what dose? And why did you have to stop?
Now you're using gabapentin, with no pain relief and bad side effects. Is the Xyrem used because of the side effects of gabapentin?
Who is the genius behind this treatment plan?
Lyrica (pregabalin) is similar in action to gabapentin, and a newer drug with less dose requirement (and theoretically, less side effects), and greater effectiveness. However, it is still a new drug and there is no generic form available (for another few years).
Both these drugs, in high doses, are difficult to stop. They have withdrawal symptoms that some find worse than opioids, so be forewarned is to be forearmed -- wean slowly if the medication is discontinued. Insist upon it -- no more than 10% per month.
Gabapentin and pregabalin are known as GABA analogues and treat neuropathic pain, that is, chronic pain or the pain of a compressed nerve. It sounds as if your docs are taking shots in the dark when it comes to your pain treatment.
I'm really curious about the need for l-thyroxin (what's called T4).
Do you have a diagnosis? From my understanding of your history, all was well until you were prescribed levothyroxin? Why were you prescribed the l-thyroxin -- abnormal TSH? a diagnosis of primary hypothyroidism?
L-thyroxin has a narrow therapeutic window and the consequences of over or under prescribing can be severe, particularly in women. Long term use can advance osteoporosis in post menopausal women, and this leads to elevations in bone alkaline phosphatase and suppressed serum parathyroid hormone levels. Higher doses of l-thyroxin can precipitate angina and arrhythmias in people with existing cardiac disease, or can unmask undiagnosed coronary disease.
Was the diagnosis of thyrotoxicosis applied when you reacted to the 75mg l-thyroxine?
Thyroxine is dosed according to weight. Older patients require less than those younger than 50. A starting dose of 25 to 50 mcg/day is usually recommended, and should be evaluated every 6-8 weeks (I'm reading my PDR).
There are many drug interactions associated with l-thyroxin.
Managing the various dysfunctions in thyroid disease is complicated.
Did you ever achieve a normal TSH and T3, T4 levels? What has happened with your thyroid treatment since the incident?
You're losing weight -- was this what took you to the doctor in the first place, and led to the discovery of thyroid dysfunction?
Have you had the biopsy?
Sorry for all the questions - I'm trying to understand, from the beginning. Please feel free to message me privately if you do not wish to share personal medical information on a public forum.
Note, I am not a medical doctor -- but once practiced medicine helping our furry friends (for the most part -- I was once sent an armadillo.
Q: What do you do with a sick armadillo?
A: Add dry white wine, onion, garlic, butter, rosemary, thyme, sage, chili, salt and pepper to taste -- it makes a nice soup.
Maybe you don't want to end up as one of my patients?
You asked "Who is the genius behind this treatment plan? "
There is no treatment plan ... they are throwing things at it and hoping something will stick. ... Here is what happened ..... 57 year old female:
2014 life is grand ... last week of November I had a bleeding uterine fibroid and was taken off the pill. (Had been taking that steady [no placebo week] for 2 years for menopause symptoms and migraines) When on the pill I took Levothyroxine 75mcg. When off I get dropped to 50. At this point I weighed around 124-126.
Doctor didn't adjust my Levothyroxine dose and I didn't think of it til the reaction happened. I was having what I thought were hormone hot flashes and profuse sweating. Mood swings from hell. Blood pressure was unusually high and I was put on metop-olol Succ er 50 in December.
Saw the Gyno Jan 9 and he gave me estrogen cream (Estrace) for symptoms. I developed hives on my hands. He said it wasn't from the cream. Maybe it was the blood pressure med. Stopped metop-olol and took another dose of the estrogen cream a week later. Same thing happened, worse hives this time and some swelling in my fingers. Gyno insists it isn't estrogen ... maybe something in the cream. Gives me a pill form. That gave me hives and swelled my fingertips so I couldn't touch anything.
Spent a week using anti-itch and Benadryl for the hives. Hives went away but the swelling stayed. After 2 weeks of this agony Gyno prescribes Hydrocodon for pain.
Swelling would go down a little during the night and I found whatever was introduced in the morning would make them swell. Pain medication, Levothyroxine, vitamins, food, or water. At that point I stopped the Levothyroxine and the sweating stopped immediately. Also stopped vitamins as they caused swelling. I would take the Hydrocodon when I ate. I was taking less than a 1/2 teaspoon - just trying to take the edge off and not increase the swelling. 3-5 doses per day in the beginning.
Finally got to see my regular doctor and was put on Prednisone. First relief - reduced the Hydrocodon to twice a day. Still couldn't touch anything.
Was prescribed Gabapentin. Didn't give any relief beyond a tingling in the fingertips. This thing started in Jan and I went to Mayo in April. First 2 weeks of April I saw progress and could now touch with my left thumb and index finger. I could now read my kindle and do a puzzle. That's it - I needed help with Everything else.
Was put back on Levothyroxine at 50mcg dose 2 weeks before I went to Mayo - Mayo wanted me back on the pill and see what happens after 2-3 months. I only do the pill for 3 weeks as it aggravates the uterine fibroid. About a month after Mayo my progress stopped and pain is increasing.
While googling Levothyroxine and finger swelling I come across a forum of 25 women who have what I have. It is an old thread so don't get to ask questions. So I skip my Levothyroxine dose the next morning and by that afternoon pain is down and foot sweating stops.. Skip another dose and by that afternoon I am able to hold a paintbrush and did a little painting on a canvas. Stop taking Levothyroxine for good. A few days later I went Plein Air painting with my friends.
Still need Hydrocodon to touch the brush but big improvement. I start being able to do more things with my hands but up the dose to do them. I switch from liquid Hydrocodon to a half pill of 7.5. (3.75 twice a day) For flaring pain I add a little liquid to that = about a 4.1 dose. I take the least amount to make me functional without adding to the swelling. This worked well for a month or so.
The weight loss had been happening since January. I was down to 115 then the morning nausea started for what seemed like no reason. I would have nausea until 1pm -2pm. Thought maybe it was the Hydrocodon so started reducing it. Found that as Hydrocodon was reduced the nausea became less intense. Also found taking a Hydrocodon dose right away shortened the nausea time. Went down to 108lbs as it was difficult to eat.
I now take 1/4 tsp liquid if I have to - but try to manage without. Starting to get my appetite back but still have not gained more than a pound.
Got a TSH test 2 weeks ago and it is 1.6. I had been hypothyroid for over 10 years and now it's normal - go figure.
I have never had T4 T3 levels checked. I will be getting the full panel done in 6 weeks cause I finally screamed about it.
There has been no pain management or follow up on anything. The doctors do a lot of "that's weird ... that's not supposed to happen" head tilts when I'm in their office. They don't know what to do with me. I go back to Mayo in October.
The Xyrem I take is for sleeping. Thankful that I have something that gives me deep sleep and takes me away from this madness every night.
The things that have helped the most are things I figured out on my own.
My take is this: Because I had been on the pill steady for about 2 years and taken off of it, my body was now out of balance hormonally. I was taken off the pill and because of that was over-medicated with thyroid medicine. Estrogen (without it's balancer progesterone) was given and threw things more out of balance and became the trigger of some type of autoimmune reaction that manifested in hives and swelling in my hands.
All the doctors say "It's not what you think it is" But none of them can tell me what it is - no diagnosis - no treatment plan beyond wait and see if it goes away on it's own.
Frustrating indeed !
Sorry I missed your question to me. I've had a difficult and new pain flare and have undergone several MRIs, x-rays, labs and so forth. Please excuse me for not seeing your question regarding Lyrica.
Yes it aides in sleep - at least for me. Except with pain this new that wakes me about 3am - I have slept better than I have in many years since beginning Lyrica. There was no other medication change, indeed we chose to discontinue my LA med - I still sleep better.
I've read your last post and can only say WOW! My heart goes out to you - what a horrific journey you are experiencing.
It's frightening when some of the top medical professionals say, "That's weird ... that's not supposed to happen." I'm so sorry.
I'm not about to about to guess what could possibly be occurring - but I will encourage you to be assertive. Insist on continued test and be sure you see all specialties - especially an endocrinologist. I assume you've seen a dermatologist and an allergist.
It's interesting that this all began when they decreased the Levothyroxine 75mg. Some how this all must be related to that decrease - or the med was "hiding" something that was there for sometime.
I'm concerned about your wight loss - as I'm sure your physician's must be also. Again be assertive - don't take "I don't know." for an answer - find someone who does know.
I appreciate the additional info and hope you'll continue to comment and keep us updated. Your situation is very interesting - though I bet you don't feel that way.
I'll watch this thread for additional comments and updates - or any thread you begin. I truly wish you the Best of Luck.
I saw a Rheumatologist in February who ruled out Lupus, lung cancer, ovarion cancer, rheumatoid inflammation etc. All tests came back normal. I have been wanting to see an endocrinologist since then.
Mayo says "A consult with an endocrinologist is not warranted at this time" I have asked multiple times and instead he wants me to see a neurologist.
So many of the closer endocrinologists specialize in diabetes and don't want to deal with me ... very frustrating. They don't have a code for swollen fingers or they don't deal with suspected auto-immune disorders.
The trouble with all this specialized medicine is no-one looks at the interaction of body systems anymore. So you become an orphan in "the medical conglomerate" No magic pill for you, no explanation of why, no support. And then to discount what I think is happening. Heaven forbid I should understand my body better than them.
It is discouraging but I will keep on looking for answers. I see a Naturopath and a Reikki person who also does hypnotherapy. I have seen some improvement through things I did with them.
The next test is the full panel for thyroid. TSH T4 T3 freeT3 reverse t3 ... the whole gamut plus the Hashimoto's ones and anything else I find between now and test day. My doctor better not say that any of them are unnecessary cause I am not leaving her office until she orders tests for everything. I will get the sheet for the labs on Aug 13 and test a couple weeks later. Hate that it is another long wait but - oh well. I just keep plugging away at it and try to keep a positive attitude.
Wow. That's quite a story. Keep your positive attitude. Don't ever underestimate the power of confidence and desire. August 13 is not that far away.
Let me explain how doctors work. They collect data through the process of history and physical examination, which can include various technologies of diagnostic testing -- blood work, imaging, etc -- as well as observation and hands-on examination.
Medically, you are exhibiting an unexpected collection of signs and symptoms (S&S). In some cases these S&S are paradoxical or opposite expected results.
Each paradox presents your docs with one or more contradictory inputs to the diagnostic puzzle, and knocks any theory your doctors may be developing out of the box (causing premature hair loss, gastric distress, insomnia, and in male practitioners, feelings of inadequacy accompanied by erectile dysfunction.)
In the medical biz, diagnosis is often simple -- matching a set of signs and symptoms to a specific disease. This allows the doctor to feel like Nietzsche’s "Superman" (Ubermensch).
But too often signs and symptoms are non-specific, meaning they are common to multiple disease states. This situation calls for the diagnostic strategy known as differential diagnosis, which uses the process of elimination to "rule out" each possible disease but one -- the correct diagnosis. Too often, differential diagnosis makes the physician feel like Barney Fife.
When dealing with a person who presents with unexpected symptoms, doctors are often at a loss, so they turn to experts. This is one reason why medicine has become so specialized in our lifetimes (the other is money).
I think you've already figured this out, so let me validate your suspicion -- unless your docs can provide a diagnosis based on a satisfactory explanation of your symptomology, they're guessing.
(An explanation of a differential diagnosis might sound like the following: Ms Klynnk1, because we've ruled out conditions A, B, and C, your symptom X is likely to be caused by disease state Y. We're going to run tests Q, R, and S, to confirm this diagnosis, and start treatment with drugs E, F, and G).
.... which only goes to show, a good doctor has to mind his or her P's and Q's.
While one should always be wary of guesses, some docs specialize in difficult diagnoses and are renown guessers. Every medical center has them. You'll find them standing in the back during grand rounds quietly reading a chart, while the first year residents push to the front to play "stump the chump" answering the "tough" questions they believe will earn them brownie points with the chief resident, and in some facilities first year residents are known as "brownies," but I'll cease in reporting these impure thoughts as I don't wish to disillusion you completely regarding those altruistic members of "the healing" profession" -- every one of them.
Never discount the powers of intuition for solving tough problems. When I was faced with a tough one the answers would often come to me in my sleep. I quickly learned that if I didn't write them down immediately, these thoughts would fade and disappear by morning. Those doctors who are good at discerning possible answers to tough medical problems are worth their weight in gold.
I'll digress to note that in mammals, the frontal lobe of the brain is split into two hemispheres -- left and right. You've probably heard of "left brain people" vs. "right brain people" The truth is that we're neither. These two lobes are meant to work together, and they're connected via the corpus callosum, a thick bundle of nerve fibers (over 200-million) that facilitates interlobal communication.
Women excel in "intuitive thinking," which involves both an analytical and emotional IQ. Studies have shown that women possess a higher density of fibers in the central corpus callosum, which probably gives them an edge in utilizing both frontal lobes.
Don't let my brief digression into cerebral neuroanatomy obfuscate the my point: Your explanation of symptoms is as valid as any developed by a physician who has yet to form a proper diagnosis. Sure, they need time to think it through on many levels, but you don't need an attitude while they are doing so.
If they don't want you to see an endocrinologist, then you deserve an explanation. If they can't provide a reasonable explanation, then push to see the endocrinologist. He or she may shed some light on this complex issue, and may just be the super-diagnostician you need to find some answers that will lead to treatments for improving your quality of life.
No doubt, yours is a tough problem, and while the change(s) in your medication regimen seem to have precipitated the problem, things may not be what they seem.
I'm reluctant to offer any medical advice -- this is way above my pay grade -- but I'm happy to offer my support and answer questions.
Blessings and best wishes.
In my opinion what you need is a good Diagnostician - However Diagnostic Medicine is not a recognized medical specialty. Internal Medicine physicians come close but you are either a good diagnostician or you're not. The fictional Dr. Gregory House comes to mind. :0)
We had an older MD in my little home town that ppl came from miles around to consult. They all used that word, diagnostician - but he was just a very talented General Practitioner with a sixth sense for getting to the bottom of medical mysteries. MDs would actually send their patients to see him when they were at a loss to find a diagnosis.
If it makes you feel better, and as you know Mayo is considered one of thee best in the US. It still doesn't mean you shouldn't be assertive - and certainly they don't have all the answers.
I do understand why they would want you to consult a neurologist - guess I wouldn't care the specialty or what initials were behind the medical providers name as long as they could find the answer - and hopefully this will happen for you very soon. If the neurologist can't put a name to your condition they should agree to a endocrine consult. Squeak Loud!!
And Phil, Sadly too many of our physicians act more like "Barney Fife" than the rude, pill popping "Gregory House" - even those that come up with a diagnosis or think they have a diagnosis.
Klynn, I'll continue to watch for your comments and updates with great interest. My heart goes out to you!
You said :
"But too often signs and symptoms are non-specific, meaning they are common to multiple disease states. This situation calls for the diagnostic strategy known as differential diagnosis, which uses the process of elimination to "rule out" each possible disease but one -- the correct diagnosis. Too often, differential diagnosis makes the physician feel like Barney Fife."
It makes me feel like a lab rat with no say. The tests trump whatever I feel is happening. Or what a medicine "should do" trumps my need for pain relief.
My doctor thought it was important that I take a maintenance dose of 5mg Prednisone. I said it caused swelling and more pain not less pain. She wanted me on it a couple more weeks. I stopped arguing and stopped the Prednisone. Cut my hand pain in half the next day and had a big improvement. I'm willing to try things but the Doctors have to accept the fact that I am the expert on how I am feeling.
I feel my Thyroid is in this mess somehow as I was over-medicated with Levothyroxine when my reaction happened in January. I will be really surprised if it isn't part of this puzzle. I get my lab sheet in a couple weeks and will get my thyroid retested - the whole panel this time - not just TSH. Hoping that will shed some light on this ordeal.
Time will tell ...
I go back to Mayo in October. I will wait to get the results from my Thyroid panel that I will get in a couple weeks. If something is off - then maybe seeing an Endocrinologist will be easier.
I'm happy that I am getting better just doing healthy eating, probiotic green smoothies, and alternative therapies. My Naturopath has done more for me than any of the other doctors. She keeps me sane.
I'm happy to hear your Naturopath is helping.
For years I saw an Osteopath (I know they are different) - she was thee best medical provider I ever had - I miss her every day. I never had nor have found better care. She kept me sane.
We all have to do what's best for us - I agree, you are the expert on how you are feeling.
Wishing you the Best,