Don't trust my diabetes nurse

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Magenta71

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Relationship to Diabetes
Type 2
I've had a bit of a time of it in the last year. I was eventually diagnosed with bowel cancer and surgery planned for August but my HbA1c was 127 and surgery was cancelled and I was
put on insulin. Just after that we moved to another area and changed GP. Previous GP hadn't suggested regular glucose monitoring and I was on annual testing. It was a complete shock that my sugar was so high.

New diabetes regime is 6 monthly checks but when I started insulin, I also started finger pricking. It got down to a point where surgery happened just before Christmas. In November, diabetes nurse put me in semaglutide. She really pushed it hard. Didn't talk about the cons or the contraindications. Once I went up to 7mg (soon after surgery), I got so ill, I couldn't eat. Yes I lost weight but I don't feel that was healthy especially when trying to recuperate and I had lost 2 stone after cancer diagnosis. I stopped taking it.

I looked up the side effects of the drug and vomiting, nausea and diarrhoea are common. Also drug is contraindicated for anyone with family history of thyroid cancer. My mother had thyroid cancer.

I have also started weaning off the insulin. I now only take it if my glucose is 10 or over at night.

I've just had a call with the nurse. She argued with me about the contraindication and tried to say it wasn't family history as in people but related to drug family and said the risk was with a different drug. This is not true. I'm not stupid and the information was published by the drug company about semaglutide - not a different drug. I have just gone through bowel cancer and not prepared to play chicken with another type of cancer. She also questioned why I was weaning off insulin and said we need to know why insulin was needed in the first place. She then started talking about another drug that would help me lose weight but side effects are thrush. I don't want more medication. I don't want to be taking pills when I feel I can control this by eating better.

After the discussion this morning, I wonder if she is on commission. She just seems to want to prescribe more pills. I don't trust her. I don't know what to do. I'm thinking of cancelling the appointment she has made me and trying to get off her radar.
 
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Magenta71 said:
I've had a bit of a time of it in the last year. I was eventually diagnosed with bowel cancer and surgery planned for August but my HbA1c was 127 and surgery was cancelled and I was
put on insulin. Just after that we moved to another area and changed GP. Previous GP hadn't suggested regular glucose monitoring and I was on annual testing. It was a complete shock that my sugar was so high.

New diabetes regime is 6 monthly checks but when I started insulin, I also started finger pricking. It got down to a point where surgery happened just before Christmas. In November, diabetes nurse put me in semaglutide. She really pushed it hard. Didn't talk about the cons or the contraindications. Once I went up to 7mg (soon after surgery), I got so ill, I couldn't eat. Yes I lost weight but I don't feel that was healthy especially when trying to recuperate and I had lost 2 stone after cancer diagnosis. I stopped taking it.

I looked up the side effects of the drug and vomiting, nausea and diarrhoea are common. Also drug is contraindicated for anyone with family history of thyroid cancer. My mother had thyroid cancer.

I have also started weaning off the insulin. I now only take it if my glucose is 10 or over at night.

I've just had a call with the nurse. She argued with me about the contraindication and tried to say it wasn't family history as in people but related to drug family and said the risk was with a different drug. This is not true. I'm not stupid and the information was published by the drug company about semaglutide - not a different drug. I have just gone through bowel cancer and not prepared to play chicken with another type of cancer. She also questioned why I was weaning off insulin and said we need to know why insulin was needed in the first place. She then started talking about another drug that would help me lose weight but side effects are thrush. I don't want more medication. I don't want to be taking pills when I feel I can control this by eating better.

After the discussion this morning, I wonder if she is on commission. She just seems to want to prescribe more pills. I don't trust her. I don't know what to do. I'm thinking of cancelling the appointment she has made me and trying to get off her radar.
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Oh dear. You really have been through the mill.

Bottom line is nobody can make you take any drug you refuse to take. You have to put it in your mouth and swallow it.

In terms of the insulin, you were likely started on it to get your blood sugars into a better place to get your surgery done, without any further delay.

Many with T2 can manage their blood sugars into a healthy place by adjusting their diet, but some can't quite manage it for a plethora of reasons, so I would ask you to try to keep an open mind on it.

I know when I was facing a cancer scare (with I'm so thankful turned out to be something else), my reading suggested it really helpful to try to keep the blood sugar levels in a good place, to aid healing and simply to be healthier.

I don't know if you have other treatments for your cancer in store, like radio or chemotherapies, but they can impact your blood sugars a bit, and it's rarely in a good way.

Right now your cancer will be your major concern, but it would be helpful to keep those numbers neat.

In terms of oral therapies, there are over 400 combinations of drugs to treat T2, so there are options out there. I know you do not want drugs, but just saying there are plenty options to consider or try if something doesn't suit you.

Whichever route you decide to adopt, I wish you the very best.
 
This is potentially where telephone consults can fall down, especially when there's been no prior fact-to-face. You know nothing about her & she only has your notes. So I would definitely attend the appointment & try to start afresh.

As above, you decide what meds you want to take. But just because one doesn't agree with you, don't go ruling out others. Also don't forget that potential side effects are usually a small percentage of those taking a medication.

What are your levels like before breakfast?
 
AndBreathe said:
Oh dear. You really have been through the mill.

Bottom line is nobody can make you take any drug you refuse to take. You have to put it in your mouth and swallow it.

In terms of the insulin, you were likely started on it to get your blood sugars into a better place to get your surgery done, without any further delay.

Many with T2 can manage their blood sugars into a healthy place by adjusting their diet, but some can't quite manage it for a plethora of reasons, so I would ask you to try to keep an open mind on it.

I know when I was facing a cancer scare (with I'm so thankful turned out to be something else), my reading suggested it really helpful to try to keep the blood sugar levels in a good place, to aid healing and simply to be healthier.

I don't know if you have other treatments for your cancer in store, like radio or chemotherapies, but they can impact your blood sugars a bit, and it's rarely in a good way.

Right now your cancer will be your major concern, but it would be helpful to keep those numbers neat.

In terms of oral therapies, there are over 400 combinations of drugs to treat T2, so there are options out there. I know you do not want drugs, but just saying there are plenty options to consider or try if something doesn't suit you.

Whichever route you decide to adopt, I wish you the very best.
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I agree about potental side effects. If you read the leaflets for meds you'd never take anything.

Pharmacists are good at interaction/side effects if you want a 'second opinion'

If you feel you have no faith in the nurse then could you ask for someone else?
 
I too am very sorry to hear that you are not happy with the support you have received and that the medication has made you feel really rough when you were already going through such a tough time with your health.

Why not go and negotiate a 3 month medication hiatus with the provisor that you have the insulin to use if levels go too high (ie. to keep you safe), to see if you can improve your levels through dietary changes .... assuming you feel there is room for dietary improvement and perhaps some increased activity.... and if after 3 months you are using more insulin than you were before rather than less or your HbA1c has gone up, the renegotiate on oral/injectable meds.

I agree with @AndBreathe that they cannot make you take medication and they should be working with you to find a solution which works without making you ill in other ways. If you can manage your diabetes without medication then that is the ideal, but it has to be sustainable. If you are motivated to do that then you should at least be given the chance to try.

Out of curiosity, how much insulin do you inject if your levels are above 10 at bedtime and which insulin do you use?
 
rebrascora said:
I too am very sorry to hear that you are not happy with the support you have received and that the medication has made you feel really rough when you were already going through such a tough time with your health.

Why not go and negotiate a 3 month medication hiatus with the provisor that you have the insulin to use if levels go too high (ie. to keep you safe), to see if you can improve your levels through dietary changes .... assuming you feel there is room for dietary improvement and perhaps some increased activity.... and if after 3 months you are using more insulin than you were before rather than less or your HbA1c has gone up, the renegotiate on oral/injectable meds.

I agree with @AndBreathe that they cannot make you take medication and they should be working with you to find a solution which works without making you ill in other ways. If you can manage your diabetes without medication then that is the ideal, but it has to be sustainable. If you are motivated to do that then you should at least be given the chance to try.

Out of curiosity, how much insulin do you inject if your levels are above 10 at bedtime and which insulin do you use?
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I wasn't as high as 127.
But I was conscious that I wanted to bring it down in a manageable way.
I took the meds prescribed, rather than leave it to chance by attempting diet control on day one, without any idea at the time that would have meant diet control for life for me.
After I worked out an effective weight loss diet for me, working hand in hand with the NHS, we cut the meds out when it worked to reverse my diabetes, again to a controlled program.
And I agree the NHS can't force you to take meds, but equally, I didn't want complications just to prove they couldn't either.
If the op comes back and it's say 55 now, that's a different matter.
 
If this is on the NHS then she isn’t getting commission so please don’t think that. You have a complex case because of the surgery and it may be good to follow up with a GP appointment first before you see the diabetic nurse (I presume she’s at the surgery and not a nurse working alongside a consultant).

What are your glucose readings usually? And do you have a current HBA1C. That’s what decisions should be made on not your HBA1C from the summer.
 
travellor said:
I wasn't as high as 127.
But I was conscious that I wanted to bring it down in a manageable way.
I took the meds prescribed, rather than leave it to chance by attempting diet control on day one, without any idea at the time that would have meant diet control for life for me.
After I worked out an effective weight loss diet for me, working hand in hand with the NHS, we cut the meds out when it worked to reverse my diabetes, again to a controlled program.
And I agree the NHS can't force you to take meds, but equally, I didn't want complications just to prove they couldn't either.
If the op comes back and it's say 55 now, that's a different matter.
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The OPs HbA1c has obviously come down significantly since last summer otherwise the surgery would not have gone ahead just before Christmas, but I agree that taking the current HbA1c into consideration when making a decision about medication or otherwise is important and considering if there is further room for dietary changes, particularly if dietary changes had previously been tried.... the opening post seems to suggest that the OP has perhaps been diagnosed with daibetes for much longer than last summer.
I think we all have an idea of how much room for improvement our diet has, but the nurse may well not be aware of how powerful dietary changes can be and have more faith in medication. I do wonder if nurses may have targets to hit for improving diabetic results and that may encourage them to reach for the prescription pad with more enthusiasm and there has certainly been a lot of media hype and no doubt drug rep hype about the efficacy of Semaglutide.
 
Are you sure you were taking 7mg semaglutide? The maximum dose licensed for diabetes is 1mg per week so if you were taking 7mg per week then I’d try it at a standard dose, or try a different medication if you prefer a change.
 
Lucyr said:
Are you sure you were taking 7mg semaglutide? The maximum dose licensed for diabetes is 1mg per week so if you were taking 7mg per week then I’d try it at a standard dose, or try a different medication if you prefer a change.
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Yes, I wondered about that but I am not experienced with that medication to know for sure.

However, the OP has expressed an interest in managing their levels without medication and I think they have a right to at least trial that, if they haven't already done so within a reasonable time limit .... and assuming that HbA1c is at a reasonable level, although we do have the odd member who has brought levels down from near a ton only via dietary changes and if they have a means of testing so that they can see if levels are hopefully falling but certainly not suddenly rising then that should be a reasonable safety net during that trial period.
 
Lucyr said:
Are you sure you were taking 7mg semaglutide? The maximum dose licensed for diabetes is 1mg per week so if you were taking 7mg per week then I’d try it at a standard dose, or try a different medication if you prefer a change.
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We can't offer advice on medication.
We don't know if it an oral or injectable prescription.
This should be checked with the surgery as soon as possible however.
 
It sounds like your nurse isn't the best for diabetes. Semaglutide is normally prescribed for T2s with excess weight and can help reduce that. Having a low-carb diet is a good start point before any meds but typically some meds my be needed. I think you are right to question the nurse but if you were initially overweight then I can understand why she might have been pushing the drug. Obviously your cancer treatment complicates things but do focus on a lower carb diet with enough proteins and fats. The need for insulin or not should become obvious as your weight balances and you test.
 
travellor said:
We can't offer advice on medication.
We don't know if it an oral or injectable prescription.
This should be checked with the surgery as soon as possible however.
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I can’t see anywhere that I gave any advice. I said what I would do. The tablet form of semaglutide is given with the name rybelsus
 
Lucyr said:
I can’t see anywhere that I gave any advice. I said what I would do. The tablet form of semaglutide is given with the name rybelsus
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"The maximum dose licensed for diabetes is 1mg per week so if you were taking 7mg per week then I’d try it at a standard dose"
If you don't think that is advice, I think we need to be careful how we phrase things then.

All we suggest is @Magenta71 please check this with your HCP.
 
travellor said:
"The maximum dose licensed for diabetes is 1mg per week so if you were taking 7mg per week then I’d try it at a standard dose"
If you don't think that is advice, I think we need to be careful how we phrase things then.

All we suggest is @Magenta71 please check this with your HCP.
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“I’d try” means I would try. It’s literally saying what I would do
 
Thanks everyone. Will try to answer all the questions.

My last GP surgery was useless. It's a long story about my cancer referral but it took almost 3 months from me calling. In that time I had a cardiologist referral because I thought my symptoms (breathlessness and fatigue) was heart related and ECG showed a minor irregularity. The cardiologist wrote a stern letter to them telling them my diabetes meds were inadequate (500mg Metformin once a day). They hadn't even told me I didn't have to pay for Rx when they prescribed it. So I paid for two years until I got cancer.

So I take 1000mg Metformin now. I know 127 was dangerously high. (The previous year it had been 73. The year before that it was 48. On diagnosis it was 52.) After 3 months of insulin it was 97. I didn't have another A1c before surgery but mmol was under 10 at all times. Now it is usually 6-7 in the morning and 8-9 at night. It was 8.9 just now. If it goes above 10 I take 15 units of abasaglar. The insulin was always intended to be temporary. I know this because I was told not to inform DVLA or insurance as it wouldn't be a long-term thing. I was discharged by hospital diabetes team in November. I understood why I was on insulin - in order to have the cancer removed.

I am still obese at 20 stone and I understand that the nurse wants to help me lose weight but I have red lines and lying in the couch too sick to eat is not a way I want to live. I did mention the side effects were common - 1 in 10 will have them so they aren't the extreme ones. The less common side effect was eyesight problems. I didn't have those.

The dosage is 3mg for a month and then moving to 7mg for semaglutide. It's clear on the Rx so not sure where the dosage confusion is. According to the packet one could take 14mg if necessary.

Mostly I was annoyed that I was given something that specifically advised against a history of thyroid cancer. If that had been mentioned, I would have said straight away about my mother.

I have no further treatment planned as I participated in a clinical trial that delivered chemo before surgery. Yes that affected my sugar because the infusion was delivered with glucose so I seriously spiked after that.

To be frank noone has given a fig about my diabetic health prior to getting cancer. Now all of a sudden I am being thrown drugs. Where is the social prescribing? I would much prefer to join a support group or an exercise group. I gues that's what I was hoping to find here.
 
As I said previously, make the appointment with the nurse & start with a clean slate. It may even be an idea to apologise if you were perceived as being confrontational, even if you know you weren’t, just to help reset the relationship. Unfortunately we need these people on side, & that sometimes requires some tongue biting!

Then have the same discussion you just posted, with an emphasis on your desire to make lifestyle changes & seeking support with that. When I was first diagnosed I was offered discounted membership of the local Council gym. Well that’s not strictly true, I saw it advertised in the waiting room but had to ask for it.

Also ask about educational courses & support groups.

If you haven’t already, start wading through the info on the main site, maybe making some notes of key relevant bits as you go. You don’t need to take it all in at once & it sounds like you have a decent handle on what’s required anyway.
 
My diabetic nurse telephoned me yesterday and her first question was to ask if I'd been taken the statins prescribed. Now, after reading up on this I stopped taking the statins after 3 days ! As they increased blood sugar and had other nasty side effects. I knew she was contacting me as I'd had the 3 monthly blood test to find out my average blood sugar reading. I'd drastically changed my diet over only 12 days previously to this test, due to gastritis and non celiac wheat allergy (I believe I am celiac) and a parotid gland infection which I've had for 3 years, none of which had been taken into consideration I might add, I am not absorbing vitamins and minerals, and have drastic weight loss. Well, it transpires that my cholesterol was 6.7
It's now 4.4. My blood glucose was 53
It's now 46. I'm drawing my own conclusion that my dietary problems, the antibiotics prescribed for my parotid gland infection, allergies ect have indeed played a massive part in me initially being classed as a T2 diabetic. I no longer take antibiotics, I've cut down on pain medication (co-dydramol 10/500 + 8 per day) and I've taken time off work in health care to try and eat at the correct times and have more balanced meals. The stress in my job has made me realise that I need to change profession as 12-15 hour shifts are have a detrimental effect on my overall health. I take vitamins now and try and include fermented food which helps with my gastritis and GERD, and I also eat a food supplement that looks like baby food lol... But it gives me the minerals I am deficient in.... And I've started to feel so much better.
 
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