Hey Everyone! I am speaking with Dr. Karen Herbst on July 22nd. If you have any general Lipedema questions you’d like me to ask her (no personal or specific questions), let me know in this thread. I will do my best to get her answers.
Hi Michelle, I understand that there is a presumed association between lipedema and inflammation, I am wondering if any of the blood tests that indicate an inflammatory response have been studied in lipedema? For example Erythrocyte sedimentation rate, C-reactive protein, anti-nuclear antibodies and plasma viscosity blood tests? I often have elevated levels for these tests, but no diagnosis other than lipedema.
Hello! I'm curious to know Dr. Herbst's professional opinion on birth control pills. I got on them when I was young for painful periods (before I knew about Lipedema). I'm now 44 and in peri-menopause and will not need BCP much longer. I'm worried about going off of BCP for fear of new Lipedema tissue growth with the hormone change. Would she recommend we Lippy ladies should just stay on BCP for life instead? Thank you!
Hormone Replacement therapy, good, bad, bio-identical should we continue after menopause? Estrogen, is it what got us into his mess in the first place? would love to know theories on what to do next?
yes, I'm also curious about hormone replacement therapy. I started taking estrogen when going through menopause, and my Lipedema started progressing. That was before I knew I had Lipedema. I always wonder if my progression was because of menopause or taking estrogen. It may be both. But I'll see what Dr. Herbst says about it.
Dr Herbst diagnosed me in early 2019 with stage 3 Lipedema. At 72 Surgery/Liposuction to help with reduction of pain and fat is not an option for me so am wondering what other things I can do to help mitigate the progression of this disease. I currently eat a Keto food plan and take supplements that Dr Herbst prescribed and I walk 3-5 miles a day.
Hi Deborah, are you looking for something beyond diet, exercise, and supplements? The alternatives that come to mind are LMD (manual lymphatic drainage), massage, lymph press machine, and physical therapy. Or are you asking about alternative methods such as acupuncture, naturopathy, etc?
Can you tell me which supplements Dr. Herbst prescribed for you? There are so many out there, and I think supplements may be individualized to manage specific issues, but I'll see if I can find out more.
Your conservative management sounds right on! Many of us (ok, meeee!) have a difficult time with those three basics: diet, exercise, and supplements/meds. Way to go!
I’d not heard of lipedema until I saw your posts about it, and have never been diagnosed with it, though I suspect I may have an early stage case. Wearing shorts, swimsuits etc. has felt awkward for me since I’ve been in my 40’s due to the fat distribution on my knees and thighs. Are internal medicine/ primary care MDs well versed on this and likely to be able to identify it? If my MD scoffs at my concerns when I bring this up, who should I see?
Hi Karen, I'm in the process of writing an article about signs and symptoms of Lipedema which I hope is more clarifying for women who haven't been properly diagnosed and believe they may have this disease.
As far as your PCP, he/she most likely is not be aware of the disease unless they've had personal experience or a previous patient who's also had it. My PCP only knew about the disease because he had a previous patient with a Stage 4 lipedema. Plus he's a very compassionate doc.
If your PCP is also open-minded, you can bring information on Lipedema, specifically about signs and symptoms. Also, a PCP will likely rule out other possible diagnoses such as thyroid, varicose veins, diabetes, primary lymphedema, and obesity from normal fat. Admittedly, it isn't easy to get a formal diagnosis. But it's not impossible.
Hi Samantha. I read the article, and there are some other things mentioned that I want to explore about Lipedema, so thank you!
I typically refer to the Standard of Care for Lipedema for management and treatment. Cryotherapy either isn't mentioned in the Lipedema Standard of Care or I missed it. I am curious of what Dr. Herbst has to say about cryotherapy, and I'll try to ask her about it.
Hormone therapy and research on whether should stop completely or is it case by case basis and based on hormone levels. I took briefly and felt like that was a period of high growth with Lipedema and quit. Just curious her take on if it contributes to growth and whether to take at any time or is it case by case basis.
Hi Michelle, I understand that there is a presumed association between lipedema and inflammation, I am wondering if any of the blood tests that indicate an inflammatory response have been studied in lipedema? For example Erythrocyte sedimentation rate, C-reactive protein, anti-nuclear antibodies and plasma viscosity blood tests? I often have elevated levels for these tests, but no diagnosis other than lipedema.
Hello! I'm curious to know Dr. Herbst's professional opinion on birth control pills. I got on them when I was young for painful periods (before I knew about Lipedema). I'm now 44 and in peri-menopause and will not need BCP much longer. I'm worried about going off of BCP for fear of new Lipedema tissue growth with the hormone change. Would she recommend we Lippy ladies should just stay on BCP for life instead? Thank you!
Hormone Replacement therapy, good, bad, bio-identical should we continue after menopause? Estrogen, is it what got us into his mess in the first place? would love to know theories on what to do next?
yes, I'm also curious about hormone replacement therapy. I started taking estrogen when going through menopause, and my Lipedema started progressing. That was before I knew I had Lipedema. I always wonder if my progression was because of menopause or taking estrogen. It may be both. But I'll see what Dr. Herbst says about it.
Dr Herbst diagnosed me in early 2019 with stage 3 Lipedema. At 72 Surgery/Liposuction to help with reduction of pain and fat is not an option for me so am wondering what other things I can do to help mitigate the progression of this disease. I currently eat a Keto food plan and take supplements that Dr Herbst prescribed and I walk 3-5 miles a day.
Hi Deborah, are you looking for something beyond diet, exercise, and supplements? The alternatives that come to mind are LMD (manual lymphatic drainage), massage, lymph press machine, and physical therapy. Or are you asking about alternative methods such as acupuncture, naturopathy, etc?
Can you tell me which supplements Dr. Herbst prescribed for you? There are so many out there, and I think supplements may be individualized to manage specific issues, but I'll see if I can find out more.
Your conservative management sounds right on! Many of us (ok, meeee!) have a difficult time with those three basics: diet, exercise, and supplements/meds. Way to go!
I’d not heard of lipedema until I saw your posts about it, and have never been diagnosed with it, though I suspect I may have an early stage case. Wearing shorts, swimsuits etc. has felt awkward for me since I’ve been in my 40’s due to the fat distribution on my knees and thighs. Are internal medicine/ primary care MDs well versed on this and likely to be able to identify it? If my MD scoffs at my concerns when I bring this up, who should I see?
Hi Karen, I'm in the process of writing an article about signs and symptoms of Lipedema which I hope is more clarifying for women who haven't been properly diagnosed and believe they may have this disease.
As far as your PCP, he/she most likely is not be aware of the disease unless they've had personal experience or a previous patient who's also had it. My PCP only knew about the disease because he had a previous patient with a Stage 4 lipedema. Plus he's a very compassionate doc.
If your PCP is also open-minded, you can bring information on Lipedema, specifically about signs and symptoms. Also, a PCP will likely rule out other possible diagnoses such as thyroid, varicose veins, diabetes, primary lymphedema, and obesity from normal fat. Admittedly, it isn't easy to get a formal diagnosis. But it's not impossible.
I would like her thoughts on full body cryotherapy. I was interested after reading article about it from Lipodema Simplified association. https://lipedema-simplified.org/cryotherapy-and-lipedema/?fbclid=IwAR3AQslvHcbx9VN12mG3MC7kmily2Y9yThEBLyO4FbY_53Kzh3vZsvHNPS4
Hi Samantha. I read the article, and there are some other things mentioned that I want to explore about Lipedema, so thank you!
I typically refer to the Standard of Care for Lipedema for management and treatment. Cryotherapy either isn't mentioned in the Lipedema Standard of Care or I missed it. I am curious of what Dr. Herbst has to say about cryotherapy, and I'll try to ask her about it.
Hormone therapy and research on whether should stop completely or is it case by case basis and based on hormone levels. I took briefly and felt like that was a period of high growth with Lipedema and quit. Just curious her take on if it contributes to growth and whether to take at any time or is it case by case basis.