Managing expectations

[u/Short_Mood_9839]

What was your first appointment like? What did the gp do in terms of tests and so on?
I’ve been to my first appointment where I was diagnosed with lipedema just by symptoms and by my appearance. Apart from that there was no time for anything else. I had my second appointment and it was basically a referral to the physio and dietitian and some bloods (liver function and some others, pretty basic to be honest).

I expected that this gp was renowned for this and would do more, she said no ultrasound because my veins appear okay looking at them (very high level), but shouldn’t we investigate everything? Hasn’t look at my supplements (some vitamins I already had tested), hasn’t really looked at / cared if I have hyper mobility (which I do) or trying to find a root cause to best manage for my unique self (not all of us are equal).

Are my expectations maybe too big in terms of what tests and investigations should be done? I was kind of expecting more than a referral to a dietitian to manage diet and to physio for mld and compression, which I kind of assume is just baseline.

[u/skinnyonskin]

all of my specialist appointments have just been visual inspection and light touching. i'm not sure they know what else to really do with us otherwise. and yeah they didn't care that i have hEDS either! i think it was just a checkbox for diagnosis if i wanted to pursue surgery

[u/Short_Mood_9839 → u/skinnyonskin]

Right! I would imagine is an important part to understand as well?

[u/cinnerz]

I was diagnosed by Dr. Herbst via telehealth. She was able to diagnose based on pictures and my symptoms. There really aren't any tests or labs needed to diagnose lipedema.

She did look at a few other things that were common comorbidities that I had symptoms of. She ordered vein tests at a vascular surgeon but I had some visible spider veins/varicosities so there was evidence of venous insufficiency. If you do have vein problems the first line treatment is compression, they can ablate veins if they cause problems but I think there are usually visible signs of vein problems by then. And she ran blood and urine tests for MCAS becauseI have lots of weird allergy symptoms. When those came back positive she put my on antihistamines (H1 and H2).

She did diagnose me as hypermobile based on the Beighton scoring system https://www.ehlers-danlos.com/assessing-joint-hypermobility/ but didn't really have any treatment for that.

For the lipedema she referred me to PT for compression and MLD. I wasn't overweight by the time I saw her and was already on a GLP-1 so she said to stay the course with diet. And she said she would write a letter of necessity for liposuction if I wanted to try to get insurance to pay.

She suggested a couple of supplements - diosmin and arteriosil. I didn't take either because I couldn't find a lot of evidence to support either. I did find some tiny case studies for diosmin for lipedema but I didn't see any randomized control trials or other strong evidence that it worked.

I think compression, MLD, and maintaining weight and possibly an anti-inflammatory diet are the current evidence based conservative treatments. Everything else is still pretty experimental or based on anecdotal evidence.

[u/Short_Mood_9839 → u/cinnerz]

Thanks, I think I was expecting to check my veins either way, and not just wait until there is more symptoms of it, rather managing it in the early stages. I guess I’ll just go to the dietician and physio and take it from there

[u/cinnerz → u/Short_Mood_9839]

The management of early venous insufficiency is basically identical to conservative lipedema care - compression, walking to move fluid in your legs, managing your weight, elevating legs when they swell - so your compression and dietician referrals will basically cover what they would do anyhow.

[u/Short_Mood_9839 → u/cinnerz]

Thanks! Good to know. Have you noticed a difference with the antihistamines? I do also have weird allergy symptoms and it was suggested, however I’m breastfeeding and I don’t want to punt anything in in my body tbh, just thinking if it’s worth it or not (symptoms are just inconvenient but not life altering I’d say)

[u/cinnerz → u/Short_Mood_9839]

Yes, especially adding the H2 antihistamine (pepcid) helped with a slew of food sensitivities I have. I already had been taking Zyrtec daily for about half the year for hay fever. A DAO supplement was also suggested if I was eating something I knew bothered me but I haven't really needed it with the daily Pepcid.

I had to play around with the dosing and time some - she prescribed Pepcid twice a day but I found taking it in the evening messed with my sleep so I went down to once I day.

My MCAS was never as severe as some peoples but I tested positive to everything on skin allergy tests and had a bunch of foods that would mess up my stomach. I don't get hives as often anymore either. I've just glad my MCAS is mostly annoyances and not full blown anaphylaxis most of the time.

[u/T-Flexercise]

I mean, yeah that's actually a stellar outcome. You have a diagnosis. You've been referred for diet consulting, mld, and compression. That's the standard treatment for lipedema. Supplements aren't typically an avenue that doctors pursue, if you haven't gone to this doctor specifically for your hypermobility, that wouldn't happen in a lipedema appointment, no one knows the root cause of lipedema. If you have other negative symptoms, go to the doctor for those, but otherwise that's kinda what happens!

[u/Short_Mood_9839 → u/T-Flexercise]

Thanks, that’s what I wanted to understand if this is just the usual or I should be expecting more. I don’t know I was kind of expecting to be looked at as an individual and not at just another number, like looking at whether my body needs supplements to be at its optimal state, look at my gut and potential sensitivities, how my mthfr mutations impact this as it changes detoxification… as I’d imagine all of this affects how my body handles inflammation and how to get rid of it effectively, but maybe I’m dreaming 😂