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Thread: Worst flare up of flushing

  1. #31
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Mistica View Post
    Hello, yes certainly get your antibody levels checked.
    Also, I'd be getting your iodine levels checked too based on your symptoms. Here, the spot urine test is regarded as the most accurate, but others disagree with that.
    I'd avoid the iodine loading test. That can cause many long term nasty side effects.

    I have found low dose iodine to be helpful to me. Particularly in reducing my flushing, but if you have hashi's, you'd have to tread cautiously. It can be a doubled edged sword.

    I read a few of your recent posts and feel delighted to see you have managed to rein in your debilitating flushing.

    I don't eat past 6pm in general, sometimes earlier.
    Hey Mistica - my TPO antibodies came back at 35 (normal, under 9). However there seem to be different opinions of "normal" (of course there are..) and some ppl can have numbers in the hundreds. I think it's not enough to aggravate my thyroid hormones, but maybe enough to aggravate my face/neck swelling (since my face is generally sensitive to everything!)

    Do you know your antibody numbers approx?

    NSAID's, and benadryl are ineffective for my swelling. The best thing seems to be eating well, and not eating a lot. I react A LOT to dairy, fish, multivitamin - I'm guessing the iodine but who knows. Doc offered me prednisone, but I refused.

  2. #32
    Senior Member Mistica's Avatar
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    Hi,

    Our reference ranges are different. Normal is below 60 for both antiTPO and antiTG.

    In general, these days my hormone levels are very good, but the TSH can jump about and run a little high. It was 1.8 mid year which was excellent and the free hormones were excellent too. My hormone levels were brought under control ages ago.
    Then I became very unwell and my TSH jumped to 130 (ref range ? - 4). Some doctors like it to be below 2.5.
    My antibodies sky rocketed to TPO 10,000. Yes, the decimal is in the right place.
    TG 180.
    Usually, my TG remains below 60.

    The official stance is you can't alter your antibody levels with diet or lifestyle changes, but 1000's of people and doctors have proven that to be utter twaddle. Antibiotics can help and/or hinder.

    I got my TSH down to 40 in two weeks. Still terrible, but not bad given I only had 2 weeks to prove I could do it.
    It is still dropping.
    I have not had my antibodies tested since and I am about to get them run again.
    Having these extremely high levels is dangerous. I am hoping for everything to be back in range again.
    If I can't manage it, I might have to consider medication, but I am trying to avoid it due to it's negative impact on both rosacea and flushing.
    This may be a clue! Does it further suggest, these conditions are due to a metabolic issue?

    Your slightly elevated levels could be due to non thyroid issues.
    Antibodies are seen in several other conditions including diabetes and Rheumatoid Arthritis to name two. No one seems to know exactly what causes them and it seems to be a more complex process than originally thought.

    Your body is likely telling you, you have an inflammatory process going on.
    Previous Numerous IPL.
    Supplements: Niacinamide, Vit K2, low D3, Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Very low dose B's. Low dose zinc (to correct deficiency).
    Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

    Treating for gut dysbiosis.(This is helping).
    Previous GAPS diet. Have now introduced lots of fibre.
    Fermented Foods. Intermittent fasting -16-18 hours.
    Oral Colostrum. Helps reduce food reactions.

  3. #33
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Mistica View Post
    Hi,

    Our reference ranges are different. Normal is below 60 for both antiTPO and antiTG.

    In general, these days my hormone levels are very good, but the TSH can jump about and run a little high. It was 1.8 mid year which was excellent and the free hormones were excellent too. My hormone levels were brought under control ages ago.
    Then I became very unwell and my TSH jumped to 130 (ref range ? - 4). Some doctors like it to be below 2.5.
    My antibodies sky rocketed to TPO 10,000. Yes, the decimal is in the right place.
    TG 180.
    Usually, my TG remains below 60.

    The official stance is you can't alter your antibody levels with diet or lifestyle changes, but 1000's of people and doctors have proven that to be utter twaddle. Antibiotics can help and/or hinder.

    I got my TSH down to 40 in two weeks. Still terrible, but not bad given I only had 2 weeks to prove I could do it.
    It is still dropping.
    I have not had my antibodies tested since and I am about to get them run again.
    Having these extremely high levels is dangerous. I am hoping for everything to be back in range again.
    If I can't manage it, I might have to consider medication, but I am trying to avoid it due to it's negative impact on both rosacea and flushing.
    This may be a clue! Does it further suggest, these conditions are due to a metabolic issue?

    Your slightly elevated levels could be due to non thyroid issues.
    Antibodies are seen in several other conditions including diabetes and Rheumatoid Arthritis to name two. No one seems to know exactly what causes them and it seems to be a more complex process than originally thought.

    Your body is likely telling you, you have an inflammatory process going on.
    Yeah, other labs I noticed have ref. ranges at under 60 for TPO antibodies. Wow, your number spiked VERY high!!
    I'm getting more autoimmune workup soon. Maybe other general issues.

    Hoping your numbers can get back in range without thyroid meds.

    hopefully my swelling will get more manageable if i maintain a "no junk food" diet.

    Thanks for your reply.

  4. #34
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    Just an update. I recently saw the neurologist. He thinks I have an atypical form of facial erythromelalgia. That would make sense considering my hands and feet are also involved but not to the same severity as my cheeks and ears. My ears are flushing so bad at the moment to the point where I've started getting ringing in my ears. Sometimes it feels like it's flushing even inside my ear canal and if I tilt my head to one side it feels like the blood is dripping from one end of my head to the other. My head feels like an inflated balloon filled with blood. It's so gross! Haha I just want it to stop.

    He wants to trial me on medications for EM which would include nerve blocks, gabapentins and calcium or sodium channel blockers. I'm guessing I won't react well to calcium channel blockers as I flush really badly to magnesium (at even the lowest possible dose!)? I have Raynaud's as well.

    He also said to look into whether this is primary or secondary EM, if secondary the possibility of mast cell disorder or lupus has been raised again even though my ANA tests came back mildly positive at 1:160. I've had a lot of weird symptoms including a body wide rash and mottled skin patterns all over my arms and legs in the last year since I got the flushing suddenly out of nowhere. Never flushed or blushed before this.

    The weird thing is when I started taking mirtazapine last march it immediately stopped the flushing and that stayed away until October when the temperatures dropped suddenly. So something was working but I need to figure out why it stopped working. I tried upping my mirtzapine dose recently and that resulted in even worse flushing. There must be another drug that can put a dent in this again. In the past I have responded badly to SSRIs, they make me anxious and jittery so maybe an SNRI? Or perhaps a serotonin antagonist like periactin. Thank you antswantsclear for pointing me to that direction!

    I also need to taper down the clonidine. Perhaps try a beta blocker instead? The clonidine has been helpful for the swelling though.

    Laser_cat, are you currently on propanalol? Does it help with the flushing in the same way as clonidine?

    I've started getting broken blood vessels and patches of redness that come and go on my skin from the flushing. The clonidine does help to reduce the redness but I think it's overly constrictive to be honest and worsening the pain. Would the propranolol work in a. similar way without the sudden shunting mechanism that clonidine has? (it's very unpleasant- I can literally feel the tiny vessels on my cheeks constricting and retracting away 10 minutes after my dose of clonidine with this cold burning pain). Obviously I love looking pale. Wondering whether I can look pale and not have the pain too, or is that too much to ask?

  5. #35
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by owldog View Post

    Laser_cat, are you currently on propanalol? Does it help with the flushing in the same way as clonidine?

    Only emotional flushing.

    Clonidine can make me feel cold for a few min after a dose but on the whole it was not improving my quality of life, night flares, emotional flaring, etc. I try not to let myself get "cold" as this can be a set up for reactive flaring.

  6. #36
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    Quote Originally Posted by owldog View Post
    Just an update. I recently saw the neurologist. He thinks I have an atypical form of facial erythromelalgia. That would make sense considering my hands and feet are also involved but not to the same severity as my cheeks and ears. My ears are flushing so bad at the moment to the point where I've started getting ringing in my ears. Sometimes it feels like it's flushing even inside my ear canal and if I tilt my head to one side it feels like the blood is dripping from one end of my head to the other. My head feels like an inflated balloon filled with blood. It's so gross! Haha I just want it to stop.

    He wants to trial me on medications for EM which would include nerve blocks, gabapentins and calcium or sodium channel blockers. I'm guessing I won't react well to calcium channel blockers as I flush really badly to magnesium (at even the lowest possible dose!)? I have Raynaud's as well.

    He also said to look into whether this is primary or secondary EM, if secondary the possibility of mast cell disorder or lupus has been raised again even though my ANA tests came back mildly positive at 1:160. I've had a lot of weird symptoms including a body wide rash and mottled skin patterns all over my arms and legs in the last year since I got the flushing suddenly out of nowhere. Never flushed or blushed before this.

    The weird thing is when I started taking mirtazapine last march it immediately stopped the flushing and that stayed away until October when the temperatures dropped suddenly. So something was working but I need to figure out why it stopped working. I tried upping my mirtzapine dose recently and that resulted in even worse flushing. There must be another drug that can put a dent in this again. In the past I have responded badly to SSRIs, they make me anxious and jittery so maybe an SNRI? Or perhaps a serotonin antagonist like periactin. Thank you antswantsclear for pointing me to that direction!

    I also need to taper down the clonidine. Perhaps try a beta blocker instead? The clonidine has been helpful for the swelling though.

    Laser_cat, are you currently on propanalol? Does it help with the flushing in the same way as clonidine?

    I've started getting broken blood vessels and patches of redness that come and go on my skin from the flushing. The clonidine does help to reduce the redness but I think it's overly constrictive to be honest and worsening the pain. Would the propranolol work in a. similar way without the sudden shunting mechanism that clonidine has? (it's very unpleasant- I can literally feel the tiny vessels on my cheeks constricting and retracting away 10 minutes after my dose of clonidine with this cold burning pain). Obviously I love looking pale. Wondering whether I can look pale and not have the pain too, or is that too much to ask?
    I was in a similar position as you - flushing particularly of the ears. I think this is very much a sign of demodex mite infection, as you may have seen the discussion of in other threads about how helpful Zhongzhou cream can be for this. Gabapentin has also been very useful for the actual ear flushing. But until you control the mite population, you won't really tackle it fully. I also reacted badly to magnesium.

  7. #37
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    Quote Originally Posted by laser_cat View Post
    Only emotional flushing.

    Clonidine can make me feel cold for a few min after a dose but on the whole it was not improving my quality of life, night flares, emotional flaring, etc. I try not to let myself get "cold" as this can be a set up for reactive flaring.
    Thanks for your reply. I'll try lowering my clonidine dose. I feel exactly the same about not getting too cold as I know the blood vessels will overcompensate later by flooding my face with too much blood. This time of year is a real pain though as I have to keep switching off the heating as I can feel a flare coming on so my home is probably a lot cooler than it should be and then I get too cold and a flare comes on anyway!


    Quote Originally Posted by antwantsclear View Post
    I was in a similar position as you - flushing particularly of the ears. I think this is very much a sign of demodex mite infection, as you may have seen the discussion of in other threads about how helpful Zhongzhou cream can be for this. Gabapentin has also been very useful for the actual ear flushing. But until you control the mite population, you won't really tackle it fully. I also reacted badly to magnesium.
    Thanks for the suggestion for the Zhongzhou cream. My only worry is my skin is so hypersensitive at the moment that it may irritate it. Are you still taking gabapentin?

  8. #38
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    ive got loads of clonidine and tried high doses but havent found it effective at stopping flushes when they start ... same with propanolol sadly - and both make me feel like crap !

  9. #39
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    Quote Originally Posted by owldog View Post
    Thanks for your reply. I'll try lowering my clonidine dose. I feel exactly the same about not getting too cold as I know the blood vessels will overcompensate later by flooding my face with too much blood. This time of year is a real pain though as I have to keep switching off the heating as I can feel a flare coming on so my home is probably a lot cooler than it should be and then I get too cold and a flare comes on anyway!




    Thanks for the suggestion for the Zhongzhou cream. My only worry is my skin is so hypersensitive at the moment that it may irritate it. Are you still taking gabapentin?
    I do take gabapentin yeah, between 300-500 mg spaced throughout the day as 100mg capsules. It's quite helpful. The skin on the ears is really sensitive you're right - however a lot of the reason it's so sensitive is the large number of mites there. I use Skinceuticals Epidermal Repair cream on the ears as well to complement the Zhongzhou cream - this cream is very soothing and well tolerated.

  10. #40
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by owldog View Post
    Thanks for your reply. I'll try lowering my clonidine dose. I feel exactly the same about not getting too cold as I know the blood vessels will overcompensate later by flooding my face with too much blood. This time of year is a real pain though as I have to keep switching off the heating as I can feel a flare coming on so my home is probably a lot cooler than it should be and then I get too cold and a flare comes on anyway!



    In my case not getting too cold does not help my overall condition, it just prevents it from getting worse. But currently popular in erythromelalgia circles is heat desensitization protocols, similar to "warm room theory" - doing hot soaks followed by warm shower. For the face, I think warm compresses are used. (It didn't help me)

    If you go down on the clonidine - make sure to do so slowly lest bad rebound. I personally went down by 0.025 mg every 4 days or so. Good luck!

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