Getting Frustrated

[JayDubbleU]

Hello All ***Long Post Alert***

Firstly I am a 54yr old female.

After about 7 years of flirting with T2D, I tipped over the level of 47 in February 2020. I kinda got forgotten about as Corona arrived and Doctors had bigger fish to fry. Anyway, I got picked up again in October 2020 whereby my HBA1C had risen so I was put on Metformin. I did not tolerate it very well, I had awful nausea, the most horrendous stomach cramps/pain (I already have IBS), diarrhoea, headaches, dizziness and to be honest I was throughly miserable. Diabetic Nurse changed me to the slow release version. No change whatsoever, still the same symptoms - by now I was sooooo down and dreaded waking up each morning knowing that all day I was going to be in pain, feeling sick and couldn't be far from a bathroom. Not that we could go far because of the, by then, 2nd lockdown. A thoroughly horrid Christmas was had

After it was decided Metformin wasn't for me, we went down the Lyxumia route (Lixisentaide) - now that was pure evil! All the above of the side effects, only with a vengeance. At this point I am just a zombie, miserable, in pain, permanent headache. Rang GP surgery, spoke to a GP who was basically uninterested (Diabetic Nurse was on holiday). Told me to stop the Lyxumia. Said he would get the DN to call me when she returned. Lyxumia stopped. DN rang me, we decided on Tresiba100 basal insulin. That gave me NO side effects whatsoever, but my dose was increasing every other day and the BG levels not really coming down. 2 months ago, Rybelsus (semaglutide) 3mg was introduced alongside the Tresiba100 and the mild side effects of nausea, heartburn, headache, appeared they were very mild and last only an hour or so. I could live with that. Does increased to 7mg and BG levels start to come down to an acceptable level (averaging 7 fasting) but the side affects are once again making my life a complete misery. The Tresiba dose is slowly reducing on the Rybelsus and BG staying around 7/8. However, I have found that my BG before bed is lower than it is when I get up in the morning - even after fasting. Last night was 8.6 when I went to bed - taking it when I got up this it was 9.8!!! This seems to be a pattern. I have read something about Dawn Phenomenon - it sounds just what happens to me.

I take my BG soon after I get up and have been to the bathroom, Rybelsus first thing with just water, then have to wait at least 30 mins before taking my other meds (for High BP, High Cholesterol, Aspirin, Beteblocker and lansoprazole) - they Rybelsus regime tells you to do this. At this point I also inject the Tresiba. The nausea then kicks in, headache, stomach cramps. I don't want to eat as I feel so sick, at the same time I know I must. More often than not, there is no way I can eat. I manage a digestive biscuit occasionally. I can usually manage a bit of lunch and feel a little sick, but then when comes to evening meal, I just cannot eat it. No more than 6 forkfuls and the nausea kicks in and I have to waste yet more food.

I am so frustrated, miserable, irritable, snappy, lethargic and can absolutely see no end to this . To top it all off this week I have had a letter from my GP practice, that after 54 years of being a patient there, I am to be de-registered and to find another GP surgery as I no longer live in the catchment area. Despite the fact I have lived at my current address for 33 years, my children (now aged 27 & 25) are also registered there from birth (still out of the catchment area) and my husband (he joined us in that practice around the time my sons were born). We are all to be de-registered. My anxiety levels with everything are atmospheric. I don't know where to turn (Diabetes wise - the GP thing is new) I have lost faith and hope in ever feeling well again and the effect his is starting to have on my mental health. I have been through 2 brain surgeries (2 x brain aneurysms), had a massive heart attack in the last 10 years, I got on with things and the recovery. Now, I am questioning do I want to carry on fighting, my misery has driven me to this thinking. Thanks for reading. <3

 

[Outlier]

What a horrible time you are having.

Others will have more info than I can offer, but I am just flagging up that some of your meds might well increase blood glucose readings, so get that checked out and you will feel more in control. Also, Lansoprazole is known to cause major cramps in the lower intestine level despite being prescribed to protect the stomach. I too started off with award-winning diarrhoea when I began Metformin plus scary constipation from the Lanso. You'd think it would find a sweet spot of normality between doses, but sadly not. I stopped the Lanso and adjusted to the Metformin - I'm one of the lucky ones - but it was a very demoralising month or so, and I absolutely get how low you must be feeling.

Also I get your fury at being treated so cavalierly by your Dr. surgery. That is really bad. Unfortunately it is happening a lot. Maybe the new practice you change to will have some enlightened and helpful medics.

 

[ianf0ster]

Hi @JayDubbleU Having had such a bad experience with your GP Surgery I'm surprised that you aren't only too pleased to change from them. How likely is it that a different GP Surgery will be worse than what you've already experienced?

Did you actually want to take all these different diabetes medicines - or did you feel that you were unable to reduce the amount of sugars and starches that you eat? I find that the problem with medicines is that they all have a possibility of side effects, so once you are taking 5 or 6 of then you are almost certain to be getting some side affects and find you need more medicines for dealing with those side effects.

It sounds like you went from 'just tipping over an HbA1C of 37' to a fairly high HbA1C in a fairly short time. If this is assumption is correct then perhaps you aren't a straightforward T2 Diabetic case. We know that T1 can happen at any age - not just in children.

 

[JayDubbleU]

What a horrible time you are having.

Others will have more info than I can offer, but I am just flagging up that some of your meds might well increase blood glucose readings, so get that checked out and you will feel more in control. Also, Lansoprazole is known to cause major cramps in the lower intestine level despite being prescribed to protect the stomach. I too started off with award-winning diarrhoea when I began Metformin plus scary constipation from the Lanso. You'd think it would find a sweet spot of normality between doses, but sadly not. I stopped the Lanso and adjusted to the Metformin - I'm one of the lucky ones - but it was a very demoralising month or so, and I absolutely get how low you must be feeling.

Also I get your fury at being treated so cavalierly by your Dr. surgery. That is really bad. Unfortunately it is happening a lot. Maybe the new practice you change to will have some enlightened and helpful medics.

Hi @Outlier
Thanks for the reply.

I have been on Lanso for a looooonnnnngggggg time, never had any issues previously. I am hoping that this is still the case, as the other symptoms are all new since the onset of using the higher dose of Rybelsus. I need the lanso, otherwise I get horrendous heartburn (I am not straightforward lol). Previous to the other meds starting, I trundled along quite nicely with meds and so side effects. Other than twice being blue lighted to the hospital for sudden onset anaphylaxis (first time was unexplained). 2nd time was the Ramipril I was taking (turns out it was probably that which caused the first incident - which they now have diagnosed both incidences as angioedema). All the upset seems to be the new meds, which despite me tolerating them in the hope of results, they are making my life a misery . I just want to be able to find a level and stick with it. I feel truly so down

 

[JayDubbleU]

Hi @JayDubbleU Having had such a bad experience with your GP Surgery I'm surprised that you aren't only too pleased to change from them. How likely is it that a different GP Surgery will be worse than what you've already experienced?

Did you actually want to take all these different diabetes medicines - or did you feel that you were unable to reduce the amount of sugars and starches that you eat? I find that the problem with medicines is that they all have a possibility of side effects, so once you are taking 5 or 6 of then you are almost certain to be getting some side affects and find you need more medicines for dealing with those side effects.

It sounds like you went from 'just tipping over an HbA1C of 37' to a fairly high HbA1C in a fairly short time. If this is assumption is correct then perhaps you aren't a straightforward T2 Diabetic case. We know that T1 can happen at any age - not just in children.

Hi @ianf0ster

With the GP thing, I am still awaiting further clarification from the Practice Manager as to whether I can stay there or not. I want to (despite the current treatment by them)

The previous diabetes meds were incompatible hence the move to different brands. All symptoms were new to taking these medicines as the ones I take regularly cause no issues. My diabetes was not improving using diet and moderate exercise (has to be moderate do to my brain aneurysms and having platinum coils in my brain and the possibility of them dislodging). SO meds were introduced. Metformin just completely a no! Within a week I looked like I was dying (seriously) the side effects were untolerable). The slow release version yielded the same results (with a gap in version to allow the regular Metformin to get out of my system). Back to square 1 in days - I did try to put up with them but I so unwell.

The other alternative made me even more unwell (Lyxumia). On the Tresiba, thankfully, no side effects whatsoever, was reducing the BG but minimally, even with the dose increasing so a new med was introduced to try and help the Tresiba along. Hence where we are now. I WANT to reduce the HbA1C and my BG levels but diet and exercise is not enough. I will happily take meds that don't make me feel dead. I am, as my topic title suggests "Getting Frustrated". Now, whereby I think I have this Dawn Phenomenon thing, it's just another thing to add to my frustration.

I am sure I will get there. Maybe a referral to an Endocrinologist to get a more in depth look into my issues.

 

[Dark Horse]

The answers to the following questions might be helpful in understanding your situation:-

1. Are you overweight or in the upper range of a normal BMI? (Weight loss in people with type 2 can often improve nsulin secretion.)
2. What diet were you following when you didn't see an improvement in blood glucose? E.g. was it a reduced calorie diet, or a low-carb diet, or a 'healthy' diet, for example? Do you know how much carbohydrate you were/are eating per day? Have you lost any weight?
3. What is your current HbA1c?
4. Have you had a C-peptide blood test?

N.B. Given the medications that you are on, it is important not to make sudden changes to your diet or medication as it could result in hypoglycaemia or DKA. If you decide to make changes you need to plan them carefully and discuss them with your GP.

Moderate exercise such as walking is good ( a minimum of 150 minutes per week).

 

[JayDubbleU]

The answers to the following questions might be helpful in understanding your situation:-

1. Are you overweight or in the upper range of a normal BMI? (Weight loss in people with type 2 can often improve nsulin secretion.)
2. What diet were you following when you didn't see an improvement in blood glucose? E.g. was it a reduced calorie diet, or a low-carb diet, or a 'healthy' diet, for example? Do you know how much carbohydrate you were/are eating per day? Have you lost any weight?
3. What is your current HbA1c?
4. Have you had a C-peptide blood test?

N.B. Given the medications that you are on, it is important not to make sudden changes to your diet or medication as it could result in hypoglycaemia or DKA. If you decide to make changes you need to plan them carefully and discuss them with your GP.

Moderate exercise such as walking is good ( a minimum of 150 minutes per week).

**********************************************************
Hi Dark Horse,

1. Yes overweight but steadily (slowly losing)

2. My diet has been my normal diet (in moderation) - I reduced carbs but not drastically, as I found when I have carbs my BG levels rise dramatically. So cut them back a little over time.

3. I "think" (my memory is awful) it was 69 but DN said that could be down to the awful intolerances to the medication and me being so poorly with them. New tests in 2 weeks time and a follow-up with her in 3 weeks.

4. Not that I recall, it is something I have not heard mentioned or indeed heard of before. So probably not.

I do walk a lot as we have an active Staffie which fails to have an energy switch off!

I "think" I am doing everything I can to help myself. I rarely drink, I am an ex-smoker (six years smoke-free) following my heart attack (I was on 35/40) a day and went completely cold turkey to quit after the air ambulance trip and 3 stents later. No vaping or pretend ciggies.

But life right now is pretty miserable and I feel so unmotivated. I am trying, but it is a struggle as I feel so sick

 

[mariavontrapp]

I'm so sorry to read all that you have been through. I think you must have been traumatised by everything medical that has happened. I get very nervous about taking a new drug (had some bad reactions), but of course now the nerves just make my stomach upset before I have even taken them. So - do you think your reaction to drugs is caused by both physical and psychological issues? If you can afford it, I would recommend a two pronged approach - a counsellor for the medical anxiety and a nutritional therapist for the IBS and dietary advice. If not affordable, push for more help on the NHS because you are worthy, you do deserve some support with these debilitating problems. I think you will need to address your anxiety and IBS before you can make any headway with diabetes treatment. Oh, one more thing I have learned - you can often get more help from a pharmacist than from a diabetic nurse or doctor. I'm on day two of Metformin and if I start to have any side-effects I will be phoning the pharmacy not the surgery (they will answer the phone quicker as well!)

 

[JayDubbleU]

I'm so sorry to read all that you have been through. I think you must have been traumatised by everything medical that has happened. I get very nervous about taking a new drug (had some bad reactions), but of course now the nerves just make my stomach upset before I have even taken them. So - do you think your reaction to drugs is caused by both physical and psychological issues? If you can afford it, I would recommend a two pronged approach - a counsellor for the medical anxiety and a nutritional therapist for the IBS and dietary advice. If not affordable, push for more help on the NHS because you are worthy, you do deserve some support with these debilitating problems. I think you will need to address your anxiety and IBS before you can make any headway with diabetes treatment. Oh, one more thing I have learned - you can often get more help from a pharmacist than from a diabetic nurse or doctor. I'm on day two of Metformin and if I start to have any side-effects I will be phoning the pharmacy not the surgery (they will answer the phone quicker as well!)

Maria, thank you. it is just so demoralising. I feel a burden to all of the medical professionals with my myriad of issues. I refuse to pay for extra care, I pay enough in my national insurance etc. Equal care should be given to everyone regardless of their financial status. That's just my stance and no sleight on those that do. Since starting this thread I do feel a tiny bit better, and BG is coming down and I am reducing my Tresiba dose so there is progress, which is encouraging. Maybe I just needed a good whinge!

I guess I am just going to bash on, see what the bloods bring when they are checked in 2 weeks (emailed DN on Wednesday - so far, ignored - guess it looks like I am going it alone until HbA1C are back) - another let down. Maybe it is best I DO move surgeries.

XxX

 

[gavioli]

Hello All ***Long Post Alert***

Firstly I am a 54yr old female.

After about 7 years of flirting with T2D, I tipped over the level of 47 in February 2020. I kinda got forgotten about as Corona arrived and Doctors had bigger fish to fry. Anyway, I got picked up again in October 2020 whereby my HBA1C had risen so I was put on Metformin. I did not tolerate it very well, I had awful nausea, the most horrendous stomach cramps/pain (I already have IBS), diarrhoea, headaches, dizziness and to be honest I was throughly miserable. Diabetic Nurse changed me to the slow release version. No change whatsoever, still the same symptoms - by now I was sooooo down and dreaded waking up each morning knowing that all day I was going to be in pain, feeling sick and couldn't be far from a bathroom. Not that we could go far because of the, by then, 2nd lockdown. A thoroughly horrid Christmas was had

After it was decided Metformin wasn't for me, we went down the Lyxumia route (Lixisentaide) - now that was pure evil! All the above of the side effects, only with a vengeance. At this point I am just a zombie, miserable, in pain, permanent headache. Rang GP surgery, spoke to a GP who was basically uninterested (Diabetic Nurse was on holiday). Told me to stop the Lyxumia. Said he would get the DN to call me when she returned. Lyxumia stopped. DN rang me, we decided on Tresiba100 basal insulin. That gave me NO side effects whatsoever, but my dose was increasing every other day and the BG levels not really coming down. 2 months ago, Rybelsus (semaglutide) 3mg was introduced alongside the Tresiba100 and the mild side effects of nausea, heartburn, headache, appeared they were very mild and last only an hour or so. I could live with that. Does increased to 7mg and BG levels start to come down to an acceptable level (averaging 7 fasting) but the side affects are once again making my life a complete misery. The Tresiba dose is slowly reducing on the Rybelsus and BG staying around 7/8. However, I have found that my BG before bed is lower than it is when I get up in the morning - even after fasting. Last night was 8.6 when I went to bed - taking it when I got up this it was 9.8!!! This seems to be a pattern. I have read something about Dawn Phenomenon - it sounds just what happens to me.

I take my BG soon after I get up and have been to the bathroom, Rybelsus first thing with just water, then have to wait at least 30 mins before taking my other meds (for High BP, High Cholesterol, Aspirin, Beteblocker and lansoprazole) - they Rybelsus regime tells you to do this. At this point I also inject the Tresiba. The nausea then kicks in, headache, stomach cramps. I don't want to eat as I feel so sick, at the same time I know I must. More often than not, there is no way I can eat. I manage a digestive biscuit occasionally. I can usually manage a bit of lunch and feel a little sick, but then when comes to evening meal, I just cannot eat it. No more than 6 forkfuls and the nausea kicks in and I have to waste yet more food.

I am so frustrated, miserable, irritable, snappy, lethargic and can absolutely see no end to this . To top it all off this week I have had a letter from my GP practice, that after 54 years of being a patient there, I am to be de-registered and to find another GP surgery as I no longer live in the catchment area. Despite the fact I have lived at my current address for 33 years, my children (now aged 27 & 25) are also registered there from birth (still out of the catchment area) and my husband (he joined us in that practice around the time my sons were born). We are all to be de-registered. My anxiety levels with everything are atmospheric. I don't know where to turn (Diabetes wise - the GP thing is new) I have lost faith and hope in ever feeling well again and the effect his is starting to have on my mental health. I have been through 2 brain surgeries (2 x brain aneurysms), had a massive heart attack in the last 10 years, I got on with things and the recovery. Now, I am questioning do I want to carry on fighting, my misery has driven me to this thinking. Thanks for reading. <3

 

[gavioli]

Keep your chin up Jay. Having to go on the panel of a new doctor, may be the best thing that has happened to you in the past seven years. A new GP with a different attitude may result in different medication. For myself, I have type2 and I have been on OMEPRAZOLE and METFORMIN for eight years without any major side effects (apart from the beginning, when I had loose bowel stools, but it soon passed). So try and be optimistic difficult though it is, because there are drugs out there that your new medic may want to try and they will turn your quality of live around.

 

[JayDubbleU]

Here I am with an update!
I rode out the storm on the Rybelsus. I am on the 7mg dose and the side effects for 5 weeks were just off the scale. Sickness, nausea, constipation, diarrhoea, stomach cramps, headaches, leg/joint pain, zero appetite, brain fog. I kept battling away and they have improved dramatically. However, I still get one or all of the above symptoms at some point every day. I know it's coming and let it pass me by as much as I can.

So, my HbA1C in January 22 was 79! Average Blood Glucose was about 12 mmo/l daily. Had my review yesterday (HbA1C taken 14 April) and it has dropped to 63 (still not brilliant) but I will take the 16 point drop! I have also lost 6.5lbs in weight and my average blood glucose is 8.2. Still not perfect by any stretch, but I took onboard all of the advice given on here and from the medical professionals and here I am. I guess my frustration was impatience! I have reduced my carb intake gradually (not completely) - I do have the odd day carb free (not on purpose) and it seems to be working for me. I intend to continue as I am and see where things take me as at the moment the DN is very happy with progress and wants me to aim for a HbA1C of 53 and unless I have any concerns regarding my Tresiba/Rybelsus repeat the HbA1C in September.

I am a LOT more settled and hopeful than I was 5 weeks ago

 

[mariavontrapp]

Hi there, I was just reading your update and am glad to see things are improving. I'm on week 8 of metformin and feel about to give up. The nausea and IBS is still a problem, plus I have felt very irritable, anxious and quite depressed, which is unusual for me. I'm going to try taking some Vitamin B12 to see if that at least help with my mental health, but I just don't feel that I can take this metformin for the rest of my life. It feels like being slowly poisoned, I'm so sick of it

 

[Resurgam]

Hi there, I was just reading your update and am glad to see things are improving. I'm on week 8 of metformin and feel about to give up. The nausea and IBS is still a problem, plus I have felt very irritable, anxious and quite depressed, which is unusual for me. I'm going to try taking some Vitamin B12 to see if that at least help with my mental health, but I just don't feel that I can take this metformin for the rest of my life. It feels like being slowly poisoned, I'm so sick of it

I suggest that you speak to your GP or whoever is managing your diabetes medication and suggest that you stop or change it.
I become rather ill taking Atorvastatin and Metformin and was contemplating suicide. I can't put the blame on any one thing, but I am so very glad that I threw out the tablets as I did not need them. It took over a year to recover from taking them for around 5 weeks.

 

[mariavontrapp]

I suggest that you speak to your GP or whoever is managing your diabetes medication and suggest that you stop or change it.
I become rather ill taking Atorvastatin and Metformin and was contemplating suicide. I can't put the blame on any one thing, but I am so very glad that I threw out the tablets as I did not need them. It took over a year to recover from taking them for around 5 weeks.

I think I will speak to a nurse about it. Was hoping to make it to 13 weeks and get an HbA1c test, but not sure now.

 

[Resurgam]

I think I will speak to a nurse about it. Was hoping to make it to 13 weeks and get an HbA1c test, but not sure now.

I tried to get past Christmas - ended up wandering around the supermarket car park trying to find the car with a trolley piled high with the same list of things I had bought two days earlier and forgotten about - nasty shock when I finally found the car and opened the hatch to find the bags I'd been unable to find in the house, full of Christmas food, some defrosted, but it probably saved me from worse effects.

 

[PeterWATKSP]

Good morning to all. Just past my 1 year point on Rybelsus 7mg. Continues to work very well for me - no side effects whatsoever, eyes checked at Specsavers on a six monthly basis and excellent, HbA1C down to 46 (from 80), weight loss 15 kg (down to 85kg).
I spent years doing the low carb regime, and actually still do from habit, but it didn't achieve anything very much for me.
Oh for a big bowl of Kellys ice cream again, haha!
T2 since 2009
Peter

 

[JayDubbleU]

Here I am with an update!
I rode out the storm on the Rybelsus. I am on the 7mg dose and the side effects for 5 weeks were just off the scale. Sickness, nausea, constipation, diarrhoea, stomach cramps, headaches, leg/joint pain, zero appetite, brain fog. I kept battling away and they have improved dramatically. However, I still get one or all of the above symptoms at some point every day. I know it's coming and let it pass me by as much as I can.

So, my HbA1C in January 22 was 79! Average Blood Glucose was about 12 mmo/l daily. Had my review yesterday (HbA1C taken 14 April) and it has dropped to 63 (still not brilliant) but I will take the 16 point drop! I have also lost 6.5lbs in weight and my average blood glucose is 8.2. Still not perfect by any stretch, but I took onboard all of the advice given on here and from the medical professionals and here I am. I guess my frustration was impatience! I have reduced my carb intake gradually (not completely) - I do have the odd day carb free (not on purpose) and it seems to be working for me. I intend to continue as I am and see where things take me as at the moment the DN is very happy with progress and wants me to aim for a HbA1C of 53 and unless I have any concerns regarding my Tresiba/Rybelsus repeat the HbA1C in September.

I am a LOT more settled and hopeful than I was 5 weeks ago

Another update!

HbA1C done again in September and it was down to 52! (Even after 2 weeks of Greek all Inclusive and alcohol!) Still on the Rybelsus - still on 7mg and the variable Tresiba dosage) morning readings were about 7mmo/l. Then late October morning readings were sneaking up to late 8's & 9's. Nothing different done with diet or daily routine. Another HbA1C done revealed it had risen slightly to 55 - Discussed with DN and decided to move to 14Mg of Rybelsus and because of the high morning readings(DN is convinced I am hypoing in the night and my body is chucking out it's own insulin too - sporadic readings if I get up for the loo can be 3.5-5mmo/l), then I suggested I move my Tresiba injection to 5:00pm see if that helps. I am on week 5 of doing that and readings are stabilising again to about 7/8 in the mornings. Still not ideal but within the permitted parameters . They are about 5-6 going to bed and about 5/7 during the day.

It has been a journey - one I am still travelling. I still get the medication side effects, thankfully not all at once - but still at least 1/2 symptoms daily.