Lymphedema, diabetes, medication... with pics, please help!

KetoGirl83

So, this is a case of "good news, bad news" but I'm freaking out a little.

My endocrinologist congratulated me on my weight, apparently the last body composition exam puts me on the normal side for both fat % and muscle %. On the bad news, it also shows that I have massive water retention in my tissues, especially in the legs, that being the greater part of the remaining excess weight (still ±30kg/65lbs). She mentions elephantiasis, lymphedema, refers me to a specialist (that I'll only be able to see 4 or 5 months from now) and prescribes Glucophage, Moduretic and Forxiga, together with lymphatic drainage massage, likely for the rest of my life. Now, my T2D is totally under control and my BG has been in the normal range for more than a year now. I'm ok with taking Glucophage again if it'll help but I'm very weary of the other two.

I've had this problem, in a less extreme way, all my life. I was 11 or 12 when I first heard someone (an aunt, talking with my mother) suggesting I should hide my legs and always wear trousers or maxi skirts. My trousers have always been at least 2 sizes bigger than my blouses, until my arms also started ballooning about 5 years ago. Some 10 years ago I stopped wearing jeans because no normal cut would allow for the thickness of my legs. Since I was too ashamed to wear skirts, that means palazzo trousers have been my uniform for many years.

One year after I went LCHF my legs had reduced enough that I can now wear jeans again, even if only bootcut. This led me to hope that it would continue to improve but sadly that has not been the case. I am now almost the same I was a year ago. My take on this is that the relief I got came from the total removal of all grains (previously the basis of my woe) and associated inflamation. Which only made the underlying problem more visible.

From my own research I think I have Milroy disease, a condition that affects the normal function of the lymphatic system. I always knew my legs were not "normal" but all doctors have disregarded my complaints because it all got hidden by the very obvious fact that I was obese.

I know that this is a very specialized problem and so much more complicated than if it was just excess weight but I'm appealing to your collective wisdom. Is there anyone that has similar problems, has taken the medications my endo prescribed or has any suggestion?

I'll try anything to avoid progressing to something similar to the pics google shows for elephantiasis and lymphedema. LCHF or Keto is pretty much my whole bag of tricks, if this doesn't work I am very much freaking out.

Please help if you can, and thank you so much!

I am sorry for the quality of the pics, for obvious reasons I do not take regular pics of my legs and have not since I can remember.



::flowerforyou::

KnitOrMiss

Someone did post about this recently, but sadly, I can't recall whom... The second article says that Lymphedema is typically isolated to one limb and very imbalanced. In both limbs similarly, is typically lipedema....and they two are often confused. The first link tends to list out a decent program, resources, and ways to find help locally.

Here are some of the google results I've found...

http://www.lipomadoc.org/lipedema.html

http://fatdisorders.org/fat-disorders/lipedema-lipoedema-description

https://ww2.kqed.org/futureofyou/2016/09/19/lipedema-the-fat-disorder-that-millions-have-but-no-one-has-heard-of/

http://lipedema-simplified.org/

http://www.curelipedema.org/

ladipoet

@KetoGirl83 ....I have no knowledge of experience with this myself. Just wanted to give you kudos for being brave enough to post here and wanted to let you know am sending lots of love and light your way!! KC&KO!!

kimberwolf71

You have made amazing progress. Sadly I have no words of wisdom and hope you find some helpful insight soon. In the meantime, don't let it discourage your progress!

KnitOrMiss

I went back 25 pages in the group posts, but didn't see anything with this in the title, so I'm thinking it came up in a sub thread. I'll sleep on it, and if someone else doesn't pop up on the topic, I'll dig some more...

KetoGirl83

@ladipoet @kimberwolf71 thank you ladies, your support means a lot.

@KnitOrMiss lots of resources, thank you!

::flowerforyou::

KetoGirl83

I'm bumping this for the chance that more people will see it and to ask for an extra help with the medication.

Like I said, I'm ok with starting Glucophage again but what about adding Moduretic and Forxiga, anyone has any experience with them? I would really welcome first hand experiences.

It looks like Moduretic is a diuretic, which makes sense, except that it has so many side effects and I thought keeping very low carb was a diuretic per se so I'm not sure the risk is worth it.
And Forxiga I really, really do not understand the benefit for me. It is an anti-diabetic but my BG is non diabetic and has been for more than a year and the Endo knows this, why would she want me to take this now (and on top of Glucophage)? Side effects are too scary for me to jump in without more research, it's the kind of medication that says "do not stop without talking with your doctor".

This is the information in the package leaflet:
MODURETIC is "used to treat high blood pressure (hypertension), heart failure, or extra fluid in the body (edema). [...] This product contains two medications: amiloride and hydrochlorothiazide. Both medications are "water pills" (diuretics) and cause your body to get rid of extra salt and water. This effect may increase the amount of urine you make when you first start the product. Amiloride also helps to treat or prevent low blood potassium levels."
https://medicines.org.uk/emc/medicine/18951

FORXIGA "contains the active substance dapagliflozin. It belongs to a group of medicines called “oral anti-diabetics”.
[...]Forxiga works by removing excess sugar from your body via your urine.
Forxiga is used if your diabetes cannot be controlled with other medicines for diabetes, diet and exercise.
Your doctor may ask you to take Forxiga on its own if you are intolerant to metformin or together with other medicines to treat diabetes.
https://medicines.org.uk/emc/medicine/27191

Please help if you can. Thank you.

Note: my name keeps going back and forth, not sure why. KetoGirl83 or KetoGirl_ZC is the same me and the same account.

::flowerforyou::

SuesNewImage

Im glad you bumped this. Your photos show my legs are identical to yours. @ketogirl83
I was only told about 6 months ago it is from my lymth glands. Im interested to follow your link for more info. No Dr has even mentioned medication. I have shed 42kg (95lb) and have another 50kgs left but will still be in tth over weight BMI range then. I am down to my weight of 25 years ago at present.

canadjineh

@Ketogirl83 and @SuesNewImage on lipoedema
Here's a video with another idea: https://youtube.com/watch?v=dKSMsHJRAJE
This dermatologic surgeon does water assisted liposuction for lipdoema in Beverly Hills: https://realself.com/find/California/Beverly-Hills/Dermatologist/David-M-Amron Take a look at the before & afters.

The sites KnitOrMiss posted are all really good.

KetoGirl83

@SuesNewImage wow, thank you for that. I never knew anyone with this problem. I am so excited to share experiences, maybe we can manage this together. In a way it's good to at least have an idea of what's wrong with us.

I reached my weight of 20 years ago but now am more or less plateau'd. At least I'm not increasing, which is a first in my life.

Do you wear compression garments? I don't, I've always avoided all forms of tightness but looks like it's the best for this condition and I'm going to try it.
lymphedemapeople.com/wiki/doku.php?id=compression_garments_stockings_for_lymphedema

And finally, have you used drainage massage or compression boots and has it had any effect? I have done both with little to no effect but that was before LCHF, maybe now it would work better. It makes sense that after removing all that's contributing to inflammation and nourishing the body from within any treatment has a better chance of working.

Please keep in touch!

@canadjineh thank you for those links.

::flowerforyou::

Jan93L

I have lost about 50 lbs , but similar to you @KetoGirl83 , my legs are still swollen. I wear medium support stockings, (knee high). My Mom had lymphedema in her legs due to atrial fibrillation and blood pressure issues. She wore thigh high compression stockings. Seemed to help as did the massage and elevating her legs regularly throughout the day. She was on on the hydrchlorothiazide as well. These helped but did not eliminate it. Hope that you find something that helps. If I find out anything more I'll try to remember to post it.

tcunbeliever

you can try cypress oil if you are into essential oil treatments

KetoGirl83

@Jan93L @tcunbeliever thank you both.

::flowerforyou::

KnitOrMiss

KetoGirl83 wrote: »

I'm bumping this for the chance that more people will see it and to ask for an extra help with the medication.

Like I said, I'm ok with starting Glucophage again but what about adding Moduretic and Forxiga, anyone has any experience with them? I would really welcome first hand experiences.

It looks like Moduretic is a diuretic, which makes sense, except that it has so many side effects and I thought keeping very low carb was a diuretic per se so I'm not sure the risk is worth it.
And Forxiga I really, really do not understand the benefit for me. It is an anti-diabetic but my BG is non diabetic and has been for more than a year and the Endo knows this, why would she want me to take this now (and on top of Glucophage)? Side effects are too scary for me to jump in without more research, it's the kind of medication that says "do not stop without talking with your doctor".

This is the information in the package leaflet:
MODURETIC is "used to treat high blood pressure (hypertension), heart failure, or extra fluid in the body (edema). [...] This product contains two medications: amiloride and hydrochlorothiazide. Both medications are "water pills" (diuretics) and cause your body to get rid of extra salt and water. This effect may increase the amount of urine you make when you first start the product. Amiloride also helps to treat or prevent low blood potassium levels."
https://medicines.org.uk/emc/medicine/18951

FORXIGA "contains the active substance dapagliflozin. It belongs to a group of medicines called “oral anti-diabetics”.
[...]Forxiga works by removing excess sugar from your body via your urine.
Forxiga is used if your diabetes cannot be controlled with other medicines for diabetes, diet and exercise.
Your doctor may ask you to take Forxiga on its own if you are intolerant to metformin or together with other medicines to treat diabetes.
https://medicines.org.uk/emc/medicine/27191

Please help if you can. Thank you.

Note: my name keeps going back and forth, not sure why. KetoGirl83 or KetoGirl_ZC is the same me and the same account.

::flowerforyou::

@KetoGirl83 - I think from reading about all of this that I would avoid both of those medications have to do with fluid based edema, as nearly everything I've researched from the person before and this above is that those are FAT deposits that got out of the normal "corral" for lack of a better explanation - so I don't understand how reducing FLUIDS will help removing FAT DEPOSITS.....???? Can someone clear this up for me???

KetoGirl83

KnitOrMiss wrote: »

@KetoGirl83 - I think from reading about all of this that I would avoid both of those medications have to do with fluid based edema, as nearly everything I've researched from the person before and this above is that those are FAT deposits that got out of the normal "corral" for lack of a better explanation - so I don't understand how reducing FLUIDS will help removing FAT DEPOSITS.....???? Can someone clear this up for me???

@KnitOrMiss That was my previous thought too and my hope with this woe, if it is fat albeit a difficult kind, it'll improve if given time and healing conditions.

But I've been having body composition exams in the hospital for a year and a half (every 6 months) and they clearly show that my body fat has been going down and is now in what would be the normal % for my age/height, and my muscle % has been going up and could improve but is also about normal. It's the fluids that are way out of normal.

My endo is supposed to be very good, she's head of the department. HOWEVER, she does not know I eat very low carb and am therefore in a naturally diuretic diet. In the first appointment I had with her she wanted me to have carbs at every meal so now I just nod when she talks of food. But she has been the first doctor to see past the weight.

I really don't know what to do but I'm not taking those meds until I understand how they're supposed to help me.

Thank you for giving this some of your time, it means a lot.

::flowerforyou::

Jan93L

@KetoGirl83 Call her, your endo, and please tell her what you've told us. She can't be as effective without complete info. She should be able to see what low carb has done for you and hopefully will work with you. Have courage!

KetoGirl83

Jan93L wrote: »

@KetoGirl83 Call her, your endo, and please tell her what you've told us. She can't be as effective without complete info. She should be able to see what low carb has done for you and hopefully will work with you. Have courage!

@Jan93L I understand that. Yet when I tried to say something during the first appt she dismissed me with a "another Dr Google expert" remark. She is the one with authority to approve or deny cosmetic surgery if I ever need it for loose skin (not so far, thankfully!) so I don't want to be labelled non-compliant.

All my life I've weighed more than the previous year, until I found LCHF 2 years ago. But doctors always thought it was my fault that I was obese, no strength of will, gluttony, or laziness or whatever. This is the only woe that has ever worked and if they don't get it too bad but I'm not changing. Sadly it means being less than truthful but being truthful never helped me before and I can't afford to be seen as confrontational.

::flowerforyou::

KnitOrMiss

Well, a lot of the "standard" advice says to avoid fats, but I didn't dig deep enough to see if it was the standard american diet advice crappola or if it is for a specific reason with this condition, but I agree, I would definitely update your doctor, @KetoGirl83 (your name is not switching on my screen at all, btw)...

I would probably tell her that you've used a lowER carb diet to manage, control, and reverse your diabetes. Because of this, you are not willing to increase your carbs back to levels that will send you back to a diabetic state, but that you ARE willing to consider increasing nutritionally sound vegetable carbs to elevate your nutritional profile.

I would give her the data that shows which grains, foods, sugars, whatever spike your glucose numbers - and that those foods are permanently banned, etc. But, the more research I personally do, the more I am finding out how absolutely crucial the MICRO-nutrients are to whole body health. Dr. Weston Price did a study showing that overall, there are many more points of flexibility within the MACROS, but less so within the MICROS. When we adopt a dietary plan, say keto after the Inuits, if we do not also adapt the location specific and cultural adaptations that allow the Inuit to live successfully with their dietary plan. The combination of location and cultural specific adaptations actually tend to fill in the gaps left in most dietary plans (when looking at "days of old," so to speak.).

I know that when i first went low carb and then keto, I had ZERO concept of needing things like zinc that were added to grains and cereal that I was dropping out. It's taken me almost 2 years to realize I needed to increase whatever nutrients I wasn't taking into my body.

Because so many of us no longer eat "head to tail," we are often missing crucial nutritional components. Eggs are one of the more commonly acceptable items that fit this bill. As are things like sardines, and such. Basically, the comment was, "if my culture used to eat whole frogs or crickets, and I choose not to eat those things, how am I going to compensate to get those nutrients into my diet in a form I can accept on a regular basis?" Things like pate and making a spread from sardines or anchovies and roasted garlic sound amazing...and can help partially fill that nutritional gap.

So, in informing your doctor how you've been able to reducing your diabetes to a monitoring situation or what have you, you can go as simple as "drop the whites" or reducing glucose spiking carbs or whatever. But tell her. And tell her what you aren't willing to compromise on, but pair it with things you ARE willing to consider, as long as monitoring your glucose levels doesn't identify those things as problematic. I think you'll be surprised.

I also find that the quality of carbs make a HUGE difference. I got a free coupon for some meals from Hello Fresh, and each meal was at least 40 grams of carbs, and I was able to eat those meals, maintaining a level of nutritional ketosis or fat adaption, no cravings, etc., all because the foods were paired in certain ways, organically sourced, non-GMO, and all that jazz. So it is worth experimenting at this point, in my opinion, if it can possibly help ease your current condition. But that one doctor site I listed above seemed to show many resources that you can possibly find locally...

I wish you some luck on this!!!

KnitOrMiss

Well darn, in the long time it took me to type the above, you gave good reason not to do all that...

Maybe you can ask her suggestion for the best sources of non-starchy carbs???

KetoGirl83

@KnitOrMiss no, your suggestions are all good. I may need to work on some version before the next appt but that will only be in May. Before that I'll have an appt with the specialist she referred me to. I'm hoping he can shed some light on this.

Thank you again.

::flowerforyou::

KnitOrMiss

www.chrismasterjohnphd.com has a great podcast called the Daily Lipid - and he's got a lot of the info there that I stole out of the last keto summit. I'm also supplementing with MCT oil, and it's been interesting going so far... I hope the specialist has some great info, but I'd totally be reading EVERYTHING I can get my hands on to go into the discussion well armed!

KetoGirl83

KnitOrMiss wrote: »

www.chrismasterjohnphd.com has a great podcast called the Daily Lipid - and he's got a lot of the info there that I stole out of the last keto summit. I'm also supplementing with MCT oil, and it's been interesting going so far... I hope the specialist has some great info, but I'd totally be reading EVERYTHING I can get my hands on to go into the discussion well armed!

Going there right now! Thanks for the link.

::flowerforyou::

cstehansen

Please excuse my interruption here as I have no experience in this, but I do believe this video is something that every doctor should watch - maybe repeatedly until it sinks in to their arrogant little minds.

https://www.youtube.com/watch?v=IhkLcpJTV9M

This not some quack or outlyer. He is a well respected leader at the Cleveland Clinic which attracts people from all over the world. We have got to stop treating symptoms and start treating the underlying causes.

cstehansen

One more butt in from someone with no experience, but this may be relevant. I know you are LCHF, but if the issue is fat retention in your legs, perhaps it is because of the type of fat. Our foods have been inundated with oils that are high in omega 6 fatty acids which lead to inflammation and low in omega 3 (and to a lesser extent omega 9) which can reduce inflammation. Perhaps looking closer at the fats you are eating and making some modifications there could help. There are many resources to find on this topic. This is one that I think makes it pretty easily understood with lots of references to actual studies rather than the articles that are clearly just someone's opinion.

https://authoritynutrition.com/optimize-omega-6-omega-3-ratio/

Any change in the ratio of the types of fatty acids you eat will take some time to have any effect. However, it sounds as though you are open to any realistic option. This seems like a realistic and logical option. Unfortunately, logic doesn't always pan out when tested. Just look at the whole notion of "eating more cholesterol will raise your blood cholesterol" myth. However, my experience is logic generally leads to the right conclusion.

ambergem1969

The ketovangelist podcast recently did an episode on lipedema and lymphodema - some links on this page might be of interest:

https://www.ketovangelist.com/episode-76-leslyn-keith-treats-lipedema-with-keto/

kmn118

I, also, don't have direct experience with this, but the recommendations include compression garments and lymphatic massage. These are small starts that may also point out whether it's fluid or fat.

KetoGirl83

@cstehansen thank you for your input, all help is very welcome.

Dr Hyman is awesome, great video.

Your point re fats makes a lot of sense. Unfortunately I am not even certain if the problem is fats. The endo thinks it is fluids and has exams to back it up. I've been searching online and while it looks like a massively underdiagnosed problem it also looks like no one is really certain how to manage it. Mostly it's "compression and drainage might help". And I haven't seen "cure" mentioned anywhere.

This is a very old problem, it has been with me since my early teens. And it has been worsening all my life, until I started LCHF. 20 years ago I had liposculpture on both legs, between the ankles and the knees, the doctor said there was "no fat left in the ankles". If anything, the ankles got bigger and less responsive to rest after that.

There is a genetic component to the problem, several women on my mother's side had it (skipped her generation though). All my life I ate barely no fat at all, I never liked the taste or texture of fat. And being a vegetarian for 30+ years, what little fat I had was vegetable. So the unbalance you mention was certainly present and probably contributed to the evolution of the disease. But most of the fat I eat now is of animal origin except for the occasional olive oil or coconut oil. And I take omega 3 supplements. And yet after the improvements in the first year everything has stayed more or less the same.

I'm going to take the steps that look logical to me:
1. Be even more careful with any food that might cause inflammation and avoid them like the plague.
2. Continue to supplement Omega 3s, Curcumin and Collagen to help the body fight inflammation and improve skin condition.
3. Start regular drainage.
4. Start using compression garments.
5. Be very, very patient.

And keep researching and learning from the experience of others. What else can I do?

::flowerforyou::

KetoGirl83

@ambergem1969 @kmn118 you posted while I was typing the previous reply, thank you both.

Going to explore that link now.

::flowerforyou::

RowdysLady

I'm late to the party here but kudos for improvement and being brave. I did not read every post so if this was said, my apologies. There are massage therapists out there who specialize in lipidema/lymphodema and can really help. Have you gone that route?

supergal3

I have no personal experience with this, but just want to send good thoughts your way! Certainly massage and compression garments can't hurt the situation. Many years ago there was a televsion documentary and those were the only two items mentioned in the program.

KetoGirl83

RowdysLady wrote: »

I'm late to the party here but kudos for improvement and being brave. I did not read every post so if this was said, my apologies. There are massage therapists out there who specialize in lipidema/lymphodema and can really help. Have you gone that route?

@RowdysLady I have done massage/drainage treatments before, both with therapists and with pressure boots, with mixed results. I feel immediate relief in the heaviness but it doesn't stay, next day it is back to the same. But that was before LCHF and my woe was very inflammatory (vegetarian, heavily grain based) so I'm hoping that maybe now it will have better results.

::flowerforyou::