I am a surgically induced diabetic after having Whipple surgery in 2002. I have been able to control with diet/exercise until being placed on small dose basal insulin in early 2017 due to worsening morning syndrome. Even with morning syndrome my A1C was never worse than 7.5 before insulin, and for most years until starting insulin stayed under 7.0, sometimes drifting to below 6.0. I was given Lantus for the first year, with weight gain even on low dosage, plus other side affects. Changed over to Levemir January this year, and things got worse in a different way. I was taking single dose 10 units nightly. My A1C in March 2018 increased to 8.1. The doctors then decided that instead of me being seen as Type 2, I am now classified as "Type 1, not in control". In the USA, the software used by doctors offices do not have an option for Type 3cDM diabetes. Doctor decided I should take 10 units Levemir nightly, and another six units in the morning. Here is the problem: The two daily injections of Levemir work great. My fasting numbers run between 85 - 110. None higher, which for me is great. But I am having awful side affects from the Levemir. I have abdominal and joint and lower back pain. And a unpleasant sensation in my stomach and digestive tract. I feel like nothing moves much. I am having trouble for the first time in my life with constipation (sorry if this is too much info). Generally, I feel a bit awful most of the time. I self tested to see if insulin was the problem by stopping injections for one week. Stomach problems, pain and bowel issues were much improved starting day 2, and were gone by day 5. I felt good again. Of course my blood sugars starting going high. My diet is "healthy" and nutritious. Lots of fruits and vegetables. I stay hydrated and exercise regularly. I am in good health all things considered other than having diabetes. I have already tried Metformin and other oral meds so those are not an option. I am going to check with my doctors to see what alternatives there may be. Before that, I wanted to check and see if anyone on the board has had these type problems with Levemir and if so what worked to resolve them. Thanks for any comments offered.
Problem with Levemir
- Thread starter Starburst02
- Start Date
Celsus
Well-Known Member
- Messages
- 483
- Type of diabetes
- Type 1
- Treatment type
- Insulin
Hi @Starburst02 , first of all, I am not an expert in your disease area. So just pitching my comments and opinion based on what I know about it and its potential variations/complications if you will.
With Whipple surgery you truly many variations of 'diabetes' coming out as side effect/complication afterwards. All depending really about how big proportion of your beta cells were removed and how well the remaining may be able to sustain your required insulin secretion afterwards. In the lightest end of the scale, patients after Whipple will only be placed on insulin therapy for a short temporary period of time until the organ recover and adjust to the new conditions for your digestive system overall. Some patients do not see any further improvements in glucemic control after the surgery why they will continue typically for life on some therapy to support it better. If its really just borderline then taking some medication as used for Type2s will be just enough boost the remaining betal cells to produce enough insulin quantity to control the bg levels at all times. For the patients have had a Whipple surgery where a larger substantial part of the pancreas was removed insulin will be required. This is typically also happening for the patient group you appear to belong to. With increased age the beta cells become less efficient and the type2 medication will no longer be enough as the beta cells succumb to age also and capacity reduced. So its not like you have ever been a type2 at any point of time. Your pathway is named as you say type 3c. But your end stage now with increased age and further reduction is own capability to produce both basal and bolus is now so severely reduced that you essentially need to treat it as a Type1 would do. Some tests may though be done to identify how much of any insulin production still functions or not. But in any case it appears as you need to take insulin both to cover your basal and bolus needs, though some remaining insulin production will also aid you no matter.
But you need to be careful not to mix up too many things at the same time. Many of the symptoms that you describe are common Whipple surgery side effects, as the pancreas also has been reduced with regards to producing / regulating the many other enzymes/hormones it is involved in supporting for the digestive system. So I would assume that you do indeed already take pancreatic enzymes to support your digestion?
The most common side effects of Levemir are:
weight gain,
headache,
backpain,
stomach pain,
cold symptoms such as stuffy nose, sneezing, sore throat.
Other side effects though rather rare are:
Low potassium level in the blood, which can cause muscle cramps, weakness, or irregular heartbeat.
With Whipple surgery you truly many variations of 'diabetes' coming out as side effect/complication afterwards. All depending really about how big proportion of your beta cells were removed and how well the remaining may be able to sustain your required insulin secretion afterwards. In the lightest end of the scale, patients after Whipple will only be placed on insulin therapy for a short temporary period of time until the organ recover and adjust to the new conditions for your digestive system overall. Some patients do not see any further improvements in glucemic control after the surgery why they will continue typically for life on some therapy to support it better. If its really just borderline then taking some medication as used for Type2s will be just enough boost the remaining betal cells to produce enough insulin quantity to control the bg levels at all times. For the patients have had a Whipple surgery where a larger substantial part of the pancreas was removed insulin will be required. This is typically also happening for the patient group you appear to belong to. With increased age the beta cells become less efficient and the type2 medication will no longer be enough as the beta cells succumb to age also and capacity reduced. So its not like you have ever been a type2 at any point of time. Your pathway is named as you say type 3c. But your end stage now with increased age and further reduction is own capability to produce both basal and bolus is now so severely reduced that you essentially need to treat it as a Type1 would do. Some tests may though be done to identify how much of any insulin production still functions or not. But in any case it appears as you need to take insulin both to cover your basal and bolus needs, though some remaining insulin production will also aid you no matter.
But you need to be careful not to mix up too many things at the same time. Many of the symptoms that you describe are common Whipple surgery side effects, as the pancreas also has been reduced with regards to producing / regulating the many other enzymes/hormones it is involved in supporting for the digestive system. So I would assume that you do indeed already take pancreatic enzymes to support your digestion?
The most common side effects of Levemir are:
weight gain,
headache,
backpain,
stomach pain,
cold symptoms such as stuffy nose, sneezing, sore throat.
Other side effects though rather rare are:
Low potassium level in the blood, which can cause muscle cramps, weakness, or irregular heartbeat.
Hi Celsus, Thanks for your comments. I have been on pancreatic enzyme replacement therapy (Creon) for 15 years. That alone has been a life saver and allowed me to maintain good quality of life since surgery. I was diagnosed with diabetes 15 months after surgery, and was placed on oral meds. Those worked well to reduce my A1C, but I had constant low blood sugar episodes, some dangerously low. So with doctors blessings, I tried controlling with diet and exercise - that is a relatively low carb, low fat diet with strict adherence and daily exercise. It worked well for me until 2016. I agree that in absence of other indicators or symptoms, my beta cells are simply wearing out - some because of age (66) and I have fewer to begin with due to the surgery. My doctors told me depending on how many years I survived, this would likely happen and at that point I would need insulin therapy. I also agree I am type 3C since my diabetes is a result of surgery on the pancreas. For whatever reason, Type 3cDM seems to be little understood or accepted by most doctors here.
I am fairly certain my current symptoms are related to Levemir, and hopefully my doctor will be able to offer some guidance to resolve the problem. He is very open to reviewing other patients experiences, and I am hoping to be able to resolve this without adding yet more medications. Thanks again, I am grateful for your input.
I am fairly certain my current symptoms are related to Levemir, and hopefully my doctor will be able to offer some guidance to resolve the problem. He is very open to reviewing other patients experiences, and I am hoping to be able to resolve this without adding yet more medications. Thanks again, I am grateful for your input.
The most common side effects of Levemir are:
weight gain,
headache,
backpain,
stomach pain,
cold symptoms such as stuffy nose, sneezing, sore throat.
Other side effects though rather rare are:
Low potassium level in the blood, which can cause muscle cramps, weakness, or irregular heartbeat.[/QUOTE]
Yikes...thank you *insert OH MY!! icon here...
weight gain,
headache,
backpain,
stomach pain,
cold symptoms such as stuffy nose, sneezing, sore throat.
Other side effects though rather rare are:
Low potassium level in the blood, which can cause muscle cramps, weakness, or irregular heartbeat.[/QUOTE]
Yikes...thank you *insert OH MY!! icon here...
Celsus
Well-Known Member
- Messages
- 483
- Type of diabetes
- Type 1
- Treatment type
- Insulin
Yikes...thank you *insert OH MY!! icon here...[/QUOTE]
OK @Grumpy ole thing, I know it could appear as a horrid list of rough common observed side effects of Levemir that I shared with you there, but lets now also be rational and at the same time also reiterate: It is far from everybody who experience them, and rarely more than one or two of them at the same time even when they do.
I just dived into some of the clinical studies to get some of those facts shared with you, to put it all into perspective:
Very common 6%: Hypoglycemia. Hahaha, I like this one, as of course we take this drug to lower our bg, so as such, not a big surprise, so lets just ignore that one.
In frequency, you then have across studies:
Injection site reactions and pain: 4-10%.
Allergic reactions: 2-3%.
Peripheral edema: 1% (not surprising, as temporary effect from changing bg from high to better levels)
Lipohypertrophy: 3-9%.
Influenza-like malaise symptoms 7-13%.
Gastroenteritis: 8-14%.
Abdominal pain: 11-13%.
Nausea: 6-9%.
Celsus
Well-Known Member
- Messages
- 483
- Type of diabetes
- Type 1
- Treatment type
- Insulin
Hi again @Starburst02, I gave you a winner award right away when reading your supplementary comments here! Reason being we should all celebrate your success being with us today despite what you have gone through, as its a tough procedure and consequences can be dire. And you are still going strong here 15 years later! Respect!
Not that many Whipple surgeries are performed. As criteria for them is pretty narrow. And you probably also know about the tough statistics on their outcomes. Reason why you are a rare specimen!
So all medical professionals are probably eager to study you and at the same time know little about how best to consult for you and your situation.
The combination of your age and your many years now since the Whipple surgery are clear determinants for your progress towards becoming like a Diabetic Type1 (in diabetes disease terms, so to speak). And your patient care pathway is a classic scenario for Whipple patients with a long post-surgery survival. And for your carbohydrate metabolism it unfortunately mean that you most probably will need from now on to be on insulin for the rest of your life. That said, its still possible to live a good life so don't give up finding an insulin regime that works well for you and your situation. Also many good alternatives exist for the levemir, so your doctor shouldn't decline for you to try something else. Especially as your experience one or more side-effects that could be avoided with an alternative insulin, so definitely worth trying out asap.
Compared to long-acting Levemir, there are even a couple I would consider superior in terms of their effect curves, as they have less of a peak time after the injection and most patients experience a longer effect curve also with these compared to the Levemir. These are e.g.: Toujeo, Lantus and Tresiba. And just to iterate, all 4 of these insulins are great products and its often the individual diabetes patient preferences that determines which works best for them of these.
Hi again @Starburst02, I gave you a winner award right away when reading your supplementary comments here! Reason being we should all celebrate your success being with us today despite what you have gone through, as its a tough procedure and consequences can be dire. And you are still going strong here 15 years later! Respect!
Not that many Whipple surgeries are performed. As criteria for them is pretty narrow. And you probably also know about the tough statistics on their outcomes. Reason why you are a rare specimen!
So all medical professionals are probably eager to study you and at the same time know little about how best to consult for you and your situation.
The combination of your age and your many years now since the Whipple surgery are clear determinants for your progress towards becoming like a Diabetic Type1 (in diabetes disease terms, so to speak). And your patient care pathway is a classic scenario for Whipple patients with a long post-surgery survival. And for your carbohydrate metabolism it unfortunately mean that you most probably will need from now on to be on insulin for the rest of your life. That said, its still possible to live a good life so don't give up finding an insulin regime that works well for you and your situation. Also many good alternatives exist for the levemir, so your doctor shouldn't decline for you to try something else. Especially as your experience one or more side-effects that could be avoided with an alternative insulin, so definitely worth trying out asap.
Compared to long-acting Levemir, there are even a couple I would consider superior in terms of their effect curves, as they have less of a peak time after the injection and most patients experience a longer effect curve also with these compared to the Levemir. These are e.g.: Toujeo, Lantus and Tresiba. And just to iterate, all 4 of these insulins are great products and its often the individual diabetes patient preferences that determines which works best for them of these.
Hello again Celsus. Thanks for your kind comments. I have grown accustomed to being a medical oddity over the years. Doctors are very curious and most say I am the only person they have met who actually had Whipple surgery much less who is still alive years later. That makes me sad on many levels. How to offer advice and care for me? My current batch of doctors do their best, and then ask me what I think we should do :~) This is one of the reasons I sought experience from people on this site and I appreciate the information you provided on insulin options. I intend to share it with my doctor and see if we can find a suitable alternative to Levemir. Many thanks for you help.
Yes, this happened to me as well. This is an allergic reaction that is acknowledged in the paperwork flyer that’s put in the container with the insulin.
18% of people who take levimir have this reaction.
18% of people who take levimir have this reaction.
OK @Grumpy ole thing, I know it could appear as a horrid list of rough common observed side effects of Levemir that I shared with you there, but lets now also be rational and at the same time also reiterate: It is far from everybody who experience them, and rarely more than one or two of them at the same time even when they do.
I just dived into some of the clinical studies to get some of those facts shared with you, to put it all into perspective:
Very common 6%: Hypoglycemia. Hahaha, I like this one, as of course we take this drug to lower our bg, so as such, not a big surprise, so lets just ignore that one.
In frequency, you then have across studies:
Injection site reactions and pain: 4-10%.
Allergic reactions: 2-3%.
Peripheral edema: 1% (not surprising, as temporary effect from changing bg from high to better levels)
Lipohypertrophy: 3-9%.
Influenza-like malaise symptoms 7-13%.
Gastroenteritis: 8-14%.
Abdominal pain: 11-13%.
Nausea: 6-9%.[/QUOTE]
same Gastro problems with Levimir. Once I stopped, symptoms went away. Won’t risk again.
