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Thread: Endocrynologist - what to expect

  1. #1
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    Default Endocrynologist - what to expect

    I wonder if I should go to an endocrinologist with my type1 Rosacea. Among the many specializations of doctors that I have visited, somehow I never found an endocrinologist. My TSH thyroid results were normal. I was commissioned by an allergist on one occasion to do them.
    One of my dermatologists raised the topic whether sometimes hormones will not affect the condition of my skin. Ultimately, they control the chemistry in the body.

    What is your experience in this topic. Was there someone with the visit to endocrinologist, what to ask, what to pay attention to during the visit?

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    Senior Member Mistica's Avatar
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    The TSH test is just one of many and different doctors and labs have different opinions as to what is regarded as normal. It is fiercely debated in some circles.
    In addition, a normal TSH does not alert the physician to whether the patient has autoimmune thyroid disease or not.
    It is possible to have normal TSH and even normal, or near normal thyroid hormones (free T4 and free T3), but usually, as the disease progresses these numbers will shift.

    I have/had severe thyroid disease, but with diet and supplements manage to avoid medication, but even so, it is often a struggle keeping on track.
    I may have to take it one day, but it can cause or worsen flushing, which is a huge concern for me as I am a flusher. (Threads on this rosacea forum reflect these experiences as well).

    Medication rarely works well and if you were to google reviews of various types, particularly the standard thyroxine, you'd be horrified at the terrible side effects experienced by most people who took the time to post. It is the same across the board, no matter which site or forum you happen to view.

    Back to you. If you had autoimmune issues, you'd almost certainly be aware of them.
    Thyroid disease comes with a long list of symptoms. You'd feel unwell at the minimum.

    On an inspiring note, thyroid disease can often be pushed into remission with diet and supplements. Many people manage this, despite what the experts might say. Their position is this is impossible and patients will be on medication forever.
    Medication will eventually shut down the thyroid from producing it's own hormones and it will atrophy and be of little use.

    If you wanted to pursue further thyroid testing, you could get an antibody panel done.
    Anti TPO and TG. This would tell you if you had Hashimoto's Disease at least. There are a few other test for Graves.
    If all is normal, you can cross any association between your type of flushing and thyroid disease off your list.

    On a side note, you could get your iodine levels tested. Just a spot urine test. Not the loading one. That can cause all sorts of nasty side effects, including flushing.

    I was iodine deficient, much to my surprise. Supplementing iodine reigned in my flushing and improved my thyroid function. But my autoimmunity was not completely reversed by supplementation.
    Diet manners in autoimmunity. It matters a lot! And the same goes for rosacea and flushing.
    And it isn't just diet. It is aiming to modify the gut flora and immune response.
    Topicals and supplements can help a lot too.

    Do you have any other health issues that you are aware of that might be influencing your flushing?
    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.

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    What I have learned from over 10 years of research is that Rosacea is the generic diagnosis doctors make without even doing proper testing!
    By dint of researching forums, medical sites and scientific studies, here are the different diseases that can cause a rash or flushing-like redness:

    - Carcinoid syndrome
    - Mast cell diseases
    - Lupus
    - Neuroendocrine tumors
    - Histamine intolerance
    - Erythromelalgia
    - Digestive problems (fat malabsorption)

    And there are probably plenty more!

    The problem is, the doctors don't prescribe the right blood analays and just say "oh, redness ? Well, you probably have rosacea. Here! Put on this totally useless cream!"

    My only advice, rather than going to an endocrinologist, is to find a doctor who will listen to you and who will first find out what you really have. Start by doing a complete blood test, and eventually researching the symptoms of the diseases I mentioned above. If any of these seem to match your situation, talk to your doctor.

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    Thank you, Mistica, for your accurate explanation. I now feel obliged to explain in more detail. I have refreshed my documentation with the test results.

    As I remembered, I had a 3rd generation TSH made. And it was normal. For values from 0.38 to 5.33 I had 1.584 ulU/ml, so I wasn't approaching any of the limits.
    I also had other immonudiagnostic tests like the free thyroxine test (FT4), the results of which were also within the norm. I had the test done 6 years ago, but I have had a problem with Rosacea for 20 years so I think if there would be a connection then it should show it back then too.

    Then I also found the results of the P/c anti-TG and anti-TPO tests. If I remember correctly, an allergologist commissioned me to do them. I completely forgot about them. Anti-TPO in the standard 3.5 IU/ml (standard 0-9), a slightly strange result in anti-TG, i.e. <0.9 (standard 0-4). If it is less than 0.9 then why not just write the value, unless it is a question of a test method.

    But I'm sure I have never done a Graves test or iodine level. Once I go to an Endocrinologist, I'll talk to him weather he would prescribe me to do such tests. I remember from my story how we had to take the medicine Lugol liquid which is a 5% CLEAN Iodine PRODUCTION. It was after the Chernobyl accident. In Central Europe it was obligatory to take iodine so the thyroid will not absorb radioactive iodine instead. If the test for iodine will be positive, I am curious to see if those facts combined.

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    Quote Originally Posted by Ryohiku View Post
    What I have learned from over 10 years of research is that Rosacea is the generic diagnosis doctors make without even doing proper testing!
    By dint of researching forums, medical sites and scientific studies, here are the different diseases that can cause a rash or flushing-like redness:

    - Carcinoid syndrome
    - Mast cell diseases
    - Lupus
    - Neuroendocrine tumors
    - Histamine intolerance
    - Erythromelalgia
    - Digestive problems (fat malabsorption)

    And there are probably plenty more!

    The problem is, the doctors don't prescribe the right blood analays and just say "oh, redness ? Well, you probably have rosacea. Here! Put on this totally useless cream!"

    My only advice, rather than going to an endocrinologist, is to find a doctor who will listen to you and who will first find out what you really have. Start by doing a complete blood test, and eventually researching the symptoms of the diseases I mentioned above. If any of these seem to match your situation, talk to your doctor.


    I know your pain I'm looking for that doctor for 20 years. I've tried to check on many of those disiseas you mentioned and couple more by going to diffrent specialization doctors. Starting from dermatologists, neurologists, ENT specialists, allergists, psychologists, gastroenterologists. Even if I found a doctor who listened to me, at the end he tried methods that didn't work but where known to him. I do not remember any doctor trying to find a solution by doing some deeper research. Rather, they have already used the knowledge they have. But that may be my subjective observation. Maybe they really care but just dont show it.

    One of my first dermatologist said it is nothing and will pass with time. Another said its Rosacea as you said without any tests or consideration, she just look at me and said this is Rosacea. Some other later said its KPRF cause i have also KP on my arms. The other doctor said I have mental issues and yet another that it is normal that people are blushing and I need to live with it. So many opinions with one symptom.

  6. #6
    Senior Member Brady Barrows's Avatar
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    As Ryohiku points out, there are a number of other skin conditions and diseases that present with erythema and there is a much longer list that keeps growing in this post. I like Dr. Draelos' statement about rosacea, "Rosacea is probably a collection of many different diseases that are lumped together inappropriately." Have you heard about Dr. Syrokomsky Lybomyrovich, a dermatologist in the Ukraine? He has been the subject of some posts here at RF. As I recall, his daughter is also a physician in his clinic who assists.
    Brady Barrows
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    Quote Originally Posted by Ryohiku View Post

    - Carcinoid syndrome
    - Mast cell diseases
    - Lupus
    - Neuroendocrine tumors
    - Histamine intolerance
    - Erythromelalgia
    - Digestive problems (fat malabsorption)
    Do you have some links to understand connection between redness on face and fat malabsorption. During my year long struggle with diet which give huge boost to improve my skin I found that food rich with fats are increasing significantly my chances to flush and to blush more intensively.

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    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by RedMage View Post
    Do you have some links to understand connection between redness on face and fat malabsorption. During my year long struggle with diet which give huge boost to improve my skin I found that food rich with fats are increasing significantly my chances to flush and to blush more intensively.
    That would be an interesting subject to investigate and sponsor a clinical paper. Do you think it could be possible for say 10K rosaceans to actually get together unitedly and decide to sponsor such an investigation by each donating one dollar? Could rosaceans actually do this or should they continue to let the skin industry sponsor the vast amount of clinical papers on rosacea? Interested?

    There are only three food groups, as you know: Protein, Fat and Carbohydrate. Contrary to popular opinion only protein and fat are essential. For those who doubt this, read this article. Carbohydrate is the fuel that flames rosacea. Reduce the fuel and the flame dies out. For those with doubts, read this article. It isn't the fat that is 'increasing signficantly [your] chances to flush and to blush more intensively' but it is the carbohydrate you are digesting along with the fat. Usually food high in fat is also high in carbohydrate. Most rosaceans ignore this since carbohydrate (different forms of sugar) is addictive and most will simply keep digesting carbohydrate in large quantities and will simply find other ways to control their rosacea, i.e., antibiotics, isotretinoin, ivermectin, azeliac acid, etc. If you would try this simple experiment for thirty days you will know if sugar is the factor in your diet that is increasing your flushing:

    Reduce your carbohydrate intake to 30 grams or less for thirty days. Drink lots of water. Eat as much protein and fat as you want, just reduce the carbohydrate to 30 grams per day. At the end of thirty days see if your skin has improved and your flushing is reduced. After the thirty days, then gorge yourself with carbohydrate, i.e., ice cream, cola, candy, cake, and all your sugary delights you missed for thirty days and see what happens. This short one month experiment may help you. Of course, most rosaceans will not give up carbohydrate and this is understandable since it is difficult to try this one month experiment. Also, reducing your carbohydrate for thirty days poses no risk since it is only for thirty days, contrary to popular opinion. There are no known health risks for reducing carbohydrate for thirty days, none.
    Last edited by Brady Barrows; 28th September 2020 at 01:03 PM.
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    Quote Originally Posted by Brady Barrows View Post

    Reduce your carbohydrate intake to 30 grams or less for thirty days. Drink lots of water. Eat as much protein and fat as you want, just reduce the carbohydrate to 30 grams per day. At the end of thirty days see if your skin has improved and your flushing is reduced. After the thirty days, then gorge yourself with carbohydrate, i.e., ice cream, cola, candy, cake, and all your sugary delights you missed for thirty days and see what happens. This short one month experiment may help you. Of course, most rosaceans will not give up carbohydrate and this is understandable since it is difficult to try this one month experiment. Also, reducing your carbohydrate for thirty days poses no risk since it is only for thirty days, contrary to popular opinion. There are no known health risks for reducing carbohydrate for thirty days, none.

    Thank you, Brady.Your insight and broad knowledge is always welcome. I've already tried to get rid of sugars from my diet in tests. I even went further and switched to Carnivore diet for six months. For the last 30 days when I was on Carnivore I have been eating only beef and salt. Everything for science. Not at all, my desperation has just reached such peaks.

    In fact, such a diet improved my skin condition, i.e. my dandruff has disappeared completely, the KP on my shoulders and the acne on my back has also been significantly reduced. Eternal rhinitis is also gone. At some point I think that all this symptoms are connected, they all show at the mainle same time when I was about 15 years old. But the redness of my face remained and was persistent till the end.

    So I had a doubt if it is really a connection there.

    I also went the other way, i.e. I ate only vegetables and some fruit. Here the redness actually decreased. But in addition there were a lot of unpleasant symptoms, frequent headaches, a feeling of mental mist, difficulties with catching the balance. The skin was getting very pale and probably that's why the redness was less pronounced. At the end I also felt frequent hot attacks on my face, although when I ran to the mirror to see if it was already strongly reddened, it was rather only clearly pink. Although the feeling itself was very unpleasant. Theoretically, by eliminating almost everything from my diet, I am able to maintain the relative good condition of my skin. But probably after 4 weeks of such a diet I would die of exhaustion.

    From other diets I did was low Histamine diet, because on one of my test it showed a lower than tolerance DAO enzyme, so I order DAOSIN and ate very low histamine products in short.
    Also I was on low sugar diet. Where the foof I ate must have the lowest Glicemic Load possible.

    I also had a visits to a dietitian and at the end she said that I would be the best doctor for myself and that I had to find foods that hurt me and the ones that didn't. Because the current state of dietary knowledge is not enough to help me. Well that was an honest opinion at least.

    True diet helped me more than any other way till now but there I feel its still only a half way. What do you think about this?

  10. #10
    Senior Member Brady Barrows's Avatar
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    I am assuming that the 'True Diet' you are referring to is this one referred to here by TrueMD? Am I correct on this?

    It appears to me that you are on top of your learning curve when you have tried these different diet approaches and agree with your dietician that you 'would be the best doctor for' yourself. You know what you should eat and what to avoid. We all instinctively know that diet plays some part in controlling rosacea, otherwise, why would all the polls on rosacea triggers keep referring to food and drink? It is interesting to note that the RRDi is THE only non profit organization for rosacea that lists sugar/carbohydrate as a rosacea trigger while the others ignore this. You should mediate on this and think why would the other non profit organizations for rosacea never mention sugar/carbohydrate as a rosacea trigger?

    Just to clarify, when you wrote below, 'So I had a doubt if it is really a connection there' are you referring to your previous statement about your 'redness of my face remained and was persistent' or what exactly? So keep us informed of your journey into investigating how to control your rosacea.

    Brady

    Quote Originally Posted by RedMage View Post
    Thank you, Brady.Your insight and broad knowledge is always welcome. I've already tried to get rid of sugars from my diet in tests. I even went further and switched to Carnivore diet for six months. For the last 30 days when I was on Carnivore I have been eating only beef and salt. Everything for science. Not at all, my desperation has just reached such peaks.
    In fact, such a diet improved my skin condition, i.e. my dandruff has disappeared completely, the KP on my shoulders and the acne on my back has also been significantly reduced. Eternal rhinitis is also gone. At some point I think that all this symptoms are connected, they all show at the mainle same time when I was about 15 years old. But the redness of my face remained and was persistent till the end.
    So I had a doubt if it is really a connection there.
    I also went the other way, i.e. I ate only vegetables and some fruit. Here the redness actually decreased. But in addition there were a lot of unpleasant symptoms, frequent headaches, a feeling of mental mist, difficulties with catching the balance. The skin was getting very pale and probably that's why the redness was less pronounced. At the end I also felt frequent hot attacks on my face, although when I ran to the mirror to see if it was already strongly reddened, it was rather only clearly pink. Although the feeling itself was very unpleasant. Theoretically, by eliminating almost everything from my diet, I am able to maintain the relative good condition of my skin. But probably after 4 weeks of such a diet I would die of exhaustion.
    From other diets I did was low Histamine diet, because on one of my test it showed a lower than tolerance DAO enzyme, so I order DAOSIN and ate very low histamine products in short.
    Also I was on low sugar diet. Where the foof I ate must have the lowest Glicemic Load possible.
    I also had a visits to a dietitian and at the end she said that I would be the best doctor for myself and that I had to find foods that hurt me and the ones that didn't. Because the current state of dietary knowledge is not enough to help me. Well that was an honest opinion at least.
    True diet helped me more than any other way till now but there I feel its still only a half way. What do you think about this?
    Brady Barrows
    Blog - Join the RRDi



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