[MsTCB]

Has anyone else (besides me) had a problem with suddenly retaining fluid after starting Insulin? And, if so, how did you get rid of the problem?

I started taking Insulin 4 weeks ago and beginning with day 2 of treatment my hands, lower legs, and feet swelled up HUGE with fluid.
My ankles are so extremely full of fluid that they have totally lost their natural shape and I can barely bend them to walk.

I also rapidly gained 14 pounds during the first 14 days after starting Insulin, but that has leveled off (thank goodness). I do believe these 14 pounds are ALL fluid.

I asked my Endo Doc about it and he said, "The edema is NOT a side effect from the Insulin. You must have something else going on and you need to see your GP about that."
Sssoooo helpful!

Prior to starting the Insulin I had absolutely NO problem with edema - a fact that this doctor even noted in medical record from my previous appointment!

Anyway, since he was no help, I thought I would ask if anyone here has experienced this and what you did about it.

Thanks!

 

[foxl]

You have fluid retention because your body stores carbs in the form of glycogen -- which uses water molecules.

If you minimize carb intake, you also minimize insulin dosage -- and glycogen storage.

I just changed my diet, decreased my insulin dosage, and dropped 5 lb I suspect were all WATER.

And your doctor is mistaken. It's listed as a side effect, I believe.

 

[Carolina]

I did really bad,plus I had horrible rash with mine. My inner thigh's swelled up so bad I could hardly walk. It was like I had 2 huge grapefruits that spung up there over night. I couldn't wear any of my shoes even my flip flops. I almost took myself to the ER.

This was before Lantus. Doc said it must have been a allergic reaction to something. Then she said my BG was so out of control that was the reason too. My # have not come down that much with lantus either. Very high in the morning. just slightly under 200. If it gets to 117 I am thrilled. I fit goes into the double digets I do happy dance :hail: My # are all over the place.
I am so low carb its crazy too.

 

[naynay]

I did really bad,plus I had horrible rash with mine. My inner thigh's swelled up so bad I could hardly walk. It was like I had 2 huge grapefruits that spung up there over night. I couldn't wear any of my shoes even my flip flops. I almost took myself to the ER.

This was before Lantus. Doc said it must have been a allergic reaction to something. Then she said my BG was so out of control that was the reason too. My # have not come down that much with lantus either. Very high in the morning. just slightly under 200. If it gets to 117 I am thrilled. I fit goes into the double digets I do happy dance :hail: My # are all over the place.
I am so low carb its crazy too.

Carolina:
I did not have allergic reaction at all to the insulin when started. Maybe you could change the time you take your Lantus. I did not have great success with Lantus previously (few years ago), but so far the Levemir is helping somewhat. I am still struggling with the fbg number as well. Mine was 202 this morning I think the lowest number I've gotten so far on fbg is a 166. So, still trying to deal with the liver dump and DP, and I'm up to using 48 units of Levemir. It seems the more I up it doesn't make much of a difference. Although I know without it my numbers would be in the mid-300's. Humulog I had to back off because the CNP told me to use 12 units as baseline, and then 2 more units for each 50 points higher than 150. Too much considering the low amount of carbs I take in. I was going way too hypo, especially after lunch. So, I've adjusted to 7-8 baseline and 1-2 more for each 5 g of carb I will eat. We'll see.

 

[MsTCB]

My inner thigh's swelled up so bad I could hardly walk. It was like I had 2 huge grapefruits that spung up there over night.
Doc said it must have been a allergic reaction to something. Then she said my BG was so out of control that was the reason too.

Love your "grapefruit inner thigh" description b/c that I can so relate to that as well!! Just couldn't think of how to describe it.

At least your Doc acknowledged your edema. At first my Doc refused to talk about it and the accompanying 1 lb per day weight gain. Finally, he said, "Well, you now have a near normal metabolism and when normal people eat more calories than they can use, they gain weight. Before the Insulin, you were just urinating everything out so you could get by with eating all those extra calories."

I knew his explanation didn't apply to me b/c I had kept detailed records of everything I had eaten using a software program I had recently purchased called FitDay.

So, I pulled out my 2-week daily food logs I had printed off from the FitDay program that showed I had consumed between 2,000 to 1,600 calories per day. The higher calories were from my first few days of record keeping. I kept tweaking my diet until I was eating around 1,600 per day.

As I attempted to give him the records to review, I said in a sincere tone, "Do "normal" people GAIN a POUND of weight per day when they eat 1,600 calories?"

He made a waving motion with this hand to indicate that he was not interested in even looking at my food records and said, "I have patients come in here all the time and swear that they only eat 1,200 calories a day, but they have a 300 lb body so I know it's not true."

It took me a while, but I eventually understood that he had just called me a LIAR!

So, he won't be helping me with this problem of fluid retention weight gain.

 

[foxl]

Hopefully you will tell the office management WHY, too!

 

[jwags]

First off I would get a new doctor, it seems your Endo could care less about your health. People do have allergic reactions to insulins, just go the the specific web page for the insulin you are on and check the side effects list. I would not return to this doctor. It is bad enough as diabetics we have to put up with a lot we don't need doctors calling us liars. Many people do put on weight with insulin and that is a fact. As Linda said you may have to decrease the carbs and increase your fat so you can decrease the amount of insulin you need. How much insulin are you on and what brand is it?

 

[Carolina]

I am on my 3rd Doc. In 3 yrs. I don't really like her either but she is better then the other 2 by a mile. she books on the 15 min. & when I am there I feel rushed. we have enough issues to deal with & to put up with lousy bedside manner docs is not something I am not willing to do at this point.

yes insulin does put weight on you. It states it right on your sheet of instructions.

 

[MsTCB]

First off I would get a new doctor, it seems your Endo could care less about your health. People do have allergic reactions to insulins, just go the the specific web page for the insulin you are on and check the side effects list. I would not return to this doctor. It is bad enough as diabetics we have to put up with a lot we don't need doctors calling us liars. Many people do put on weight with insulin and that is a fact. As Linda said you may have to decrease the carbs and increase your fat so you can decrease the amount of insulin you need. How much insulin are you on and what brand is it?

My Insulin information is in my signature.

Yes, I agree with Linda and you. My goal is decrease the amount of insulin. My Doc explained that as I lose weight, I will need less and less insulin. However, at least for now, the insulin is making me gain weight. 'round and 'round and 'round I go. But, I am DETERMINED to break out of this disease "loop" that I'm in. It is the entire focus of my day and I won't stop until I get it figured out and get results.

I'm not sure switching Docs would help. This is my 4th Endo Doc since dx'd and, in my experience, they are all the same.

 

[Shanny]

Four endos in 14 years . . . I guess it could be worse. This one just seems to me particularly arrogant, and if he continues to insist that edema is not a side effect, somebody needs to dig in their heels & tell him that swelling of the arms/legs is one of the SEVERE side effects of lantus. Go to your GP or whoever else will listen, but get help for this now.

I also suggest a new doc.

 

[MsTCB]

Four endos in 14 years . . . I guess it could be worse. This one just seems to me particularly arrogant, and if he continues to insist that edema is not a side effect, somebody needs to dig in their heels & tell him that swelling of the arms/legs is one of the SEVERE side effects of lantus. Go to your GP or whoever else will listen, but get help for this now.

I also suggest a new doc.

Shanny, I don't think my GP will help me. Don't know if you remember me, but I'm the one - a few months ago - whose GP wouldn't treat my Diabetes with any meds or insulin, etc. despite having Ha1c's ranging from 10-12.1 (now 12.7) over the past 3 years.

So, I took everyone's advice and got an Endo Doc to treat me.

I've gained 18 lbs in the past 18 days and I feel MISERABLE on this insulin. I have "pretty" BG numbers and I like the absence of "brain fog," but in all other respects, I feel horrible.

 

[Strawberry]

Shanny, I don't think my GP will help me. Don't know if you remember me, but I'm the one - a few months ago - whose GP wouldn't treat my Diabetes with any meds or insulin, etc. despite having Ha1c's ranging from 10-12.1 (now 12.7) over the past 3 years.

So, I took everyone's advice and got an Endo Doc to treat me.

I've gained 18 lbs in the past 18 days and I feel MISERABLE on this insulin. I have "pretty" BG numbers and I like the absence of "brain fog," but in all other respects, I feel horrible.

I read your post and just want you to know that you aren't wrong about the fact that insulin does help us put on weight. Do you have a local pharmacy where you live, or is there a pharmacist who works where you buy your medications that you might trust? My reason for asking is: sometimes Pharmacists are a whole lot smarter than the doctors are where side effects of any medications are concerned. My local pharmacist told me that when he went to college to become a pharmacist, they had to spend more than 3 months learning how the various medications affect people with Diabetes.

If you are able to ask a pharmacist about the side effect of rapid weight gain with insulin, you can tell the smart aleck Endo that he is wrong. I don't think you deserve to be treated like that. I used to see an Endo and the very last time I was in his office he also treated me with disrespect (much as your Endo did to you). I got up......walked out of the patient room........left the building and never looked back. Since that Endo was the only one we have in our town I guess maybe I acted impulsively, but I don't care if I ever see him again!

 

[MsTCB]

Thank you everyone for your responses. I appreciate the support. I'm going to start to looking for another Endo Doc tomorrow.

 

[MsTCB]

Update:
I was so miserable last evening from gaining 18 lbs of fluid in 18 days since starting Insulin therapy that I called a physician friend who called in a script for a (Furosemide) "water pill" for me.

I'm happy to report that it's working already!! When I woke up this morning, I had LOST 5 lbs of body weight - in less than 12 hours of time.

So, this just proves that I am not over-eating and that this rapid weight gain is all fluid.

It will be interesting to see what this Endo Doc has to say about that when I return in 4 weeks!!

It's really pitiful that the people supposedly trained to treat Diabetes seem to know so little about Nutrition and weight loss. They try to put everyone into the same categories and it just doesn't work. Diabetes is not a "one size fits all" kind of disease and the treatment needs to viewed as individual as we are.

 

[Shanny]

It will be interesting to see what this Endo Doc has to say about that when I return in 4 weeks!!

Just a suggestion . . . take a 2x4 with you next month when you see him, so you can smack him up side o' the head . . .

 

[MsTCB]

Just a suggestion . . . take a 2x4 with you next month when you see him, so you can smack him up side o' the head . . .

lol I love your spunk!! Can I take you with me to my next appt.?

 

[MsTCB]

You have fluid retention because your body stores carbs in the form of glycogen -- which uses water molecules.

If you minimize carb intake, you also minimize insulin dosage -- and glycogen storage.

I just changed my diet, decreased my insulin dosage, and dropped 5 lb I suspect were all WATER.

And your doctor is mistaken. It's listed as a side effect, I believe.

Foxl... I'm sorry for being so "dense," but I still don't understand this fluid thing and was hoping you could expand on your response a little more.

I gained 18 lbs of fluid in my first 18 days after starting Insulin therapy. On day #19 and day #20, I started taking a diuretic "water pill" and lost 5 lbs of fluid each day (total of 10 lbs lost in 2 days).

I understand that prior to starting the Insulin therapy, glucose from the food I ate was staying out in my bloodstream was being urinated out instead of being used to feed and nourish my body.

My Endo says that I am now metabolizing my food normally.

But, how is it "normal" to hold on to & accumulate an extra lb of fluid every day?
I don't believe normal people do that.
And, judging from the response I've received thus far, it's not the "normal" bodily reaction of people with Diabetes who are taking Insulin.

If I'm understanding things correctly (and I'm not sure that I am), it sounds like my Endo is saying that my "normal" condition is to accumulate a lot of extra fluid just by eating normally.

This just doesn't make sense to me. I've had normal Ha1c's at very times over these past 14 years and I wasn't puffed up like the Jet Puff Marshmallow (wo)man.

Like I said, I'm sorry to be so "dense," but I really want to understand this.
I'm also wondering if I'm doomed to have to stay on a diuretic for the rest of my life, and if so, why? How is that "normal"?

 

[MsTCB]

Okay - I think I found my answer. I was looking in the sub-forum here in the Treatments section and found a post by someone who said they had Insulin Induced Oedema. I googled that, and it describes my condition. The article I read mentioned (what foxl said) about increased glycogen storing causing some of the fluid retention; however, that is not sufficient to explain the EXTREME fluid retention that occurs when Insulin therapy is started.

The article goes on to explain many of the causes of this rare reaction to Insulin. The treatment was "diuretic" so my physician friend was right on target. If I can "google" it and find this info, it makes me wonder why my Endo Doc apparently didn't know about it. He said it was not related to the Insulin and that I have something else going on and I need to see my GP. argh!!

 

[Shanny]

Maybe I'm just an ornery old broad, but if I were you, I'd run a print of the data you found & present it to your endo, asking why it didn't occur to him that prescribing a diuretic might be appropriate. And if he pulls any more stunts like this, I'd dump 'im!

 

[MsTCB]

Maybe I'm just an ornery old broad, but if I were you, I'd run a print of the data you found & present it to your endo, asking why it didn't occur to him that prescribing a diuretic might be appropriate. And if he pulls any more stunts like this, I'd dump 'im!

I think that sounds like WONDERFUL advice. Thanks, Shanny!!