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Don’t Know What to Do!

Rachox

Oracle
Retired Moderator
Messages
17,518
Location
Oxford
Type of diabetes
I reversed my Type 2
Treatment type
Tablets (oral)
Over the last six years since my type 2 diagnosis I have had it very well controlled on LC diet and Metformin. I lost six stone initially too.

I have recently emerged from three years of hell. Various health issues, mostly resolved now, the death of both my parents which ended with the sale of my childhood home, as you can imagine my mental health was impacted hugely. I have had several courses of counselling, juggled antidepressant meds and my lovely GP has rung me virtually monthly during this time to check on me.

Through out all of this I kept my HbA1cs in the 30s but comfort ate fats rather than carbs, think extra thick double cream and 85% chocolate. This resulted in putting back on two stone. At my diabetes review in the spring it was agreed that I could switch from Metformin to Victoza to give me a helping hand to get back to my preferred weight. All was going well and I was losing weight slowly but surely, til the incretin mimetics shortage struck. I have around two weeks worth left and I’m owed a further 3 months worth from my pharmacy.

Following discussion with my diabetes nurse we discussed me just going back on Metformin when I run out of Victoza whenever that might be but she also advised me that Victoza wouldn’t be prescribed for me anymore anyway, not really sure sure why!

My quandary is whether to stay off Metformin and rely on diet alone til I get my remaining Victoza or for good if I never get more Victoza? Or go through the discomfort of gradually increasing doses of Metformin again.

It’s all going round and round in my head, I think I just needed to write it down to see if it helped me decide but I don’t think it has!
 
Some thoughts that occur to me

Perhaps consider how much difference you feel the Metformin would make for you V diet alone? As you well know it’s not a particularly strong medication. With an hba1c in the 30’s the entire time you were on it previously is it / was it even really warranted for diabetes? It’s not particularly known for aiding weight loss either. is there a reason you want to go back on it or is the idea of no drugs at all daunting?

Also how difficult was it to adjust to it first time around? It might not be the same but it gives you a clue. If the idea of acclimatisation to it is off putting you could try a short trial without it and see if you achieve the goals you want without it and if not then go back on it.
 
I think if it were me, I would look into my reasons to take either medication.
To start with the metformin: You used it for years while having a very much non diabetic hba1c. So what was your reason for taking it? Is that reason still there? Have you ever done without during those years to see what difference it made?

When you started Victoza, you stopped the metformin. Why was that?
I don't know much about Victoza but does it have the same benefits as metformin?
You got the Victoza to help with your weight, but I doubt any HCP would have thought you needed it for your diabetes, considering your hba1c for the past 6 years.

Have you considered the possibility that going off medication can be a scary thing? It can feel very safe to have that ritual of taking medication to keep the nasties away, especially in daunting times.
Could this be the cause of it all going round and round in your head?
 
@Rachox, Thank you for being brave and bold enough to put this out in the open. So very often we only tell of the good times, and hide away for the less good.

You have certainly had a very tough time this last few years. With, if I recall correctly, in addition to your sad losses, some of your own hospital admissions? It is no wonder your mental health has been impacted. Would it help for you to look at the positives? You kept your diabetes under control with HbA1c in the 30s throughout. Say it out loud! That is a wonderful achievement. Throughout your sad, tough, times you continued to serve here as a mod and helped lots of members. Thank you for that.

So your dilemma over meds. Sorry, asking lots of questions. Don’t feel obliged to answer. How helpful has the Victoza been? Has it been the reason for the maintained HbA1c or was that down to your own efforts with low carb diet? Are you worrying because you feel you cannot cope without it? I think you know that you can, as you have before.
Metformin….. Did you have the gastric problems some people have had? Or did you cope well with it? Do you prefer to be med free altogether? I know when I originally lost my 49kg and came off Metformin I felt being diabetes med free was a bigger achievement than the non-diabetes BG levels and the weighloss.

A similar thing happened to me. The weighloss the regaining control, coming off meds. Then life hit me hard, with loss of loved ones, needing major surgeries myself, involving traumatic stays in ICU. The weight gain, some due to immobility, dependence on others to choose and cook my meals, and, ( you started the being honest, so here goes) the lack of attention to nutritional needs. I won’t call it comfort eating, because there is nothing comfortable about it, is there? There is a cycle of guilt, with a bit of ‘couldn’t care less’ thrown in. It is mainly down to sorrow, at loss, and we all take different routes and timescales in managing that. This is not me looking for sympathy, just trying to say, I understand. Though only you know what it feels like for you.

In your situation, it seems the nurse has decided , in addition to the Victoza shortage, that due to your excellent diabetes control you are no longer eligible. It is possibly that there is a backlash about a med designed for diabetics being seized upon by people who have never had a raised HbA1c as a remedy for their being overweight. Not fair, is it?! Priority is not being given to the people the med was designed for.

What did I do when some of the weight was regained? Went back on Metformin.The newer meds were not available then. Several years later, still on metformin. Weight loss isn’t happening .Or rather a little goes, then finds its way back to me. Which isn’t ideal. HbA1c strayed into prediabetes levels. Then last year tipped into diabetes 50. Would add that I have had T2 18 years. So not doing too badly, with Metformin being the only diabetes med I have ever had after 18 yesrs with T2. Enough about me, though.

If , following your several courses of counselling, you still feel there are unresolved, emotional issues, could you consider a different sort of counselling? I found Compassion based therapy very useful, when I was grieving, and struggling. With help of Clinical psychologist.

Videos

www.compassionatemind.co.uk

Whatever you decide, @Rachox, trust your own instincts, they are usually a good guide, and know that the many people you have supported in here are wishing you well. You are not alone.
 
Go with your gut, really... Can you, right now, handle what getting used to metformin does to you, for however long or short that may last? Mentally and physically? Do you need it physically, or is it a mental crutch because you think you can't do it on your own?

So, to relate a bit so the things I say later make sense and don't sound like platitudes... Husband was quite ill for about a year and a half, still not back to 100% and likely never will be,( but 70% is nicer than it was too). Mum passed. Kidneystones being a bother. (Lots of them). Oxycodone that I need to deal with the kidneys on occasion, making always present depression markedly worse. Eating like there was no tomorrow, and re-gaining about half of the weight I'd lost. And now being 44 years old, it's not coming off. But. Last week my HbA1c came back as being 36, so I'm somewhat managing to keep a balance between a kidney and a keto diet... That's my big win for now. But I'm still overweight. It's summer, and I ditched everything I had that used to fit me 7 years ago. So... I resorted to ordering XL shirts that are oversized in design anyway. That doesn't mean I've given up. That just means I don't want to walk around naked this summer. My blood sugars are okay, my kidneys are fixing themselves by pushing out the remains of a zapped stone at an excruciatingly slow rate, but they are doing it, most of mom's paperwork is dealt with and the grieving isn't as oppressive as it was, my husband is healing, and I'm back on the keto wagon... I can breathe a bit, and I need to. I'm giving myself some time to get back on track. The blood sugars are already there, I don't know whether the weight and mind will be.

So all I can tell you is these things: Pick your battles. See what matters to you. Let go what you can't grapple for now. Maybe later, maybe never, but for the moment.... Do what you can. And don't ask more of yourself than that. And show yourself some kindness. For me, that was spending time in an amusement park and a zoo this past weekend. Having a spontaneous lunch with loved ones, and spending time alone doing things I enjoy.

Pick battles. Don't overdo it. Be kind to you. Take the pressure off. That's all I've got, but for the moment it seems to be working, and I'm very much hoping it'll work for you too.

BIG hugs!!!
Jo

Edited to add two drawings by The Latest Kate. They seemed to apply.
 

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This group is amazing for support and advice and I can’t add anymore, reading all these words of wisdom brought a tear to my eye. You have had incredible battles to face @Rachox so yes be kind to yourself and I love the advice of ’pick your battles’ so you don’t feel overwhelmed.
When victoza and ozempic (is it the same drug but with different names?) came onto the market for weight loss and diabetes control, I read that it could only be prescribed for 6 months then you had to have a break, so maybe that is the only reason why your diabetic nurse said they wouldn’t be renewing your prescription?
 
You’ve already had some great replies and I can’t add much. Well done on keeping such good control through such difficult times.

But I just wanted to say whatever you decide for now is just that…..for now. It doesn’t have to be the final outcome. So you could try three months without medication and see how it feels, and how your blood sugar is. Or the other way round.

one other point in the UK assuming you are under 60 is that taking diabetic medication is the key to getting free prescriptions.
 
I can't add anything to what has already been said except that you always come across as a lovely person, you are a great "friend" to us on the Board, you've been through a lot, and you'll come through this flags flying.
 
Thank you for all your lovely and considered replies and hugs.
When I initially started Metformin my HbA1c was 70 and I did have an upset stomach for around 10 days, my current Victoza pens run out on my birthday next month, just before a short break which I don’t want to spend in the loo!
I have stayed on Metformin for so long as I didn’t want to rock the boat, especially during the really tough times, I’m a retired nurse so I’m not generally averse to taking meds, I’ve seen the good they can do in the right circumstances.
The Victoza, which was instead of Metformin as my diabetes nurse said I didn’t need both meds, has kept my blood sugars at the same level as Metformin, according to my Libre. However I haven’t had a repeat HbA1c since I’ve been on Victoza, that was planned for September given that I would have been on Victoza for 4 months, I think maybe I’ll ask for one a little earlier so it is a full test of three months on Victoza. The Victoza has kick started my weight loss so I’m pleased with that.
I think posting this and reading your replies I have made up my mind and have a plan in my head now. I’m not going to restart the Metformin straight away when my Victoza runs out, just see how I go weight and blood sugar wise. Of course I can always restart it at a later date if needs be.
Thank you again, with your replies and a good night’s sleep I have sorted my thoughts and have a plan.

Lakeslover said:
one other point in the UK assuming you are under 60 is that taking diabetic medication is the key to getting free prescriptions.
Click to expand...
This made me smile, I am over 60!
 
Been thinking about this all day
All I'd add to the brilliant supportive replies is my motto, Never say Never.

For example if you decide not to do meds now, that doesn't mean you can't again in the future, and vice versa. Very little in our lives today is static or predictable, diabetes even more so! A decision made now may change in weeks, months, decades...it's not cast in stone.

Plus, it's my firm belief that we don't yet know all the factors that affect insulin, bg and weight, or indeed any of the other 200 odd systems in our bodies. Let alone the infinite interactions between them!. We aren't machines and changes happen, its not your fault, itsjust the way it is.

(((Hugs)))
 
I took my last dose of Victoza this morning, however I got the strangest birthday present today, a friend of mine (sssshhh don’t tell anyone as I know you shouldn’t share prescription meds) gave me a spare pen of Victoza she had. So I have a two week reprieve!
 
Happy birthday!

And yes, that's one of the more odd birthday presents I've ever heard of, did she wrap it up all fancy and birthday-y too?

I must admit to being guilty of both giving away and pilfering prescription drugs (the latter after family members had died).
 
@Rachox - hugs for all you have been through.

I can totally relate- I've had a lot going on too and that has also resulted in comfort eating. I'm not totally ut of the woods so to speak so I haven't yet got back to a better way of eating although still keto and still HbA1C in the low 30s so I feel it is sustainable until I get to being able to deal with it.

Only thing I wanted to add is that the advice I received from my doctor is that Metformin was helpful in preventing things like stroke, heart attack and dementia. I have reluctantly gone back on it as one of my issues resulted in very high blood pressure temporarily that gave me the fright of my life.

I agree though that the decisions we make today don't have to be the ones we make tomorrow. We can only do the best we can at the time.

Like others I have always appreciated your gentle and helpful advice too. And a belated happy birthday
 
But if the whole world can buy it, surely its not strictly prescription only now? Sorry if that takes any of the naughtiness away, we all need at least one naughty or indulgent birthday present
 
I ran out of Victoza at the end of last week and took nothing until Tuesday when my blood sugars started creeping up to levels which I wasn’t happy with, so I restarted my Metformin. Today I spoke to the diabetes GP, she was pleased to hear about my weight loss (8kg) and says I can swap back to Victoza if/when it comes back into stock. Unlike the diabetes nurse she said she would be happy to prescribe it again in the future too, so I am content with my decisions and her support
Oh and I found out that UK prescriptions are valid for six months from the date on the prescription.
 
MrsA2 said:
But if the whole world can buy it, surely its not strictly prescription only now? Sorry if that takes any of the naughtiness away, we all need at least one naughty or indulgent birthday present
Click to expand...

As I understand it, it is still prescription only in the UK, but there are NHS prescriptions and private prescriptions. Private prescriptions don't enjoy the same patient price cap as the NHS versions. They certainly don't attract any exemptions.

Private medical insurance may or may not cover it.
 
Rachox said:
I can swap back to Victoza if/when it comes back into stock. Unlike the diabetes nurse she said she would be happy to prescribe it again in the future too, so I am content with my decisions and her support
Click to expand...
In my health area of West Sussex, Victoza is once again obtainable. Last month I received 2 pens on 13th and today I received another 2 pens from my nominated chemist, so persist with your scripts and phone your nominated chemist to see if you can hurry things along. That's what I did and for me, it worked
 
Thanks for letting me know. I had lost patience with my local independent pharmacy and my GP sent through a prescription to Boots who have supplied two pens and will try to get more for me.
 
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