Who knew! Type 3c

[Twigmarble]

Since I discovered this form earlier this evening things about my Type 2 Diabetes diagnosis which have never fit right make sense! I've always been skinny and can't put on weight and I used to get hypoglycemic a lot, until I started using herbs and improved my diet. I'm not a type 2 diabetic! Wow, all these years of thinking I was just a bit of an unusual one, being underweight.

I changed doctor's surgeries and doctors quite a lot because I also have ME/Chronic Fatigue Syndrome and I wanted to find a doctor who'd be understanding and kind about it, even if he wouldn't know how to treat it. None of those doctors noticed that I was a skinny diabetic who couldn't put weight on, even though one of them sent nurses to my home to weigh me at the request of a nurse who was here for my bed sores. She was concerned I was underweight. None of the doctors ever were and treated me as a usual type 2 diabetic. Don't they know about type 3c?

Anyway hello everyone. I would've joined sooner but I didn't know about this forum.

 

[Toby789]

Since I discovered this form earlier this evening things about my Type 2 Diabetes diagnosis which have never fit right make sense! I've always been skinny and can't put on weight and I used to get hypoglycemic a lot, until I started using herbs and improved my diet. I'm not a type 2 diabetic! Wow, all these years of thinking I was just a bit of an unusual one, being underweight.

I changed doctor's surgeries and doctors quite a lot because I also have ME/Chronic Fatigue Syndrome and I wanted to find a doctor who'd be understanding and kind about it, even if he wouldn't know how to treat it. None of those doctors noticed that I was a skinny diabetic who couldn't put weight on, even though one of them sent nurses to my home to weigh me at the request of a nurse who was here for my bed sores. She was concerned I was underweight. None of the doctors ever were and treated me as a usual type 2 diabetic. Don't they know about type 3c?

Anyway hello everyone. I would've joined sooner but I didn't know about this forum.

It is an oddity but many GPs immediately see BGL abnormalities and diagnose T2 - no fault to them as they are meant to be only the first line of defence and T2 is not an illogical conclusion for an adult presenting with diabetes and TOFI is a new idea in medicine now (mostly as T1 manifests much earlier and is usually diagnosed in hospital after DKA which is the first obvious warning sign and hypoglycaemia is logically almost impossible for a T1 not using insulin).

Unfortunately the NHS system seems ill suited to diagnosing and managing chronic conditions, mostly because of the rationing that all price fixing causes. You are a good example - you were passed around GPs instead of being referred to the secondary specialist level, as any competent endocrinologist would take one look at you and not think T2. I know most users here are in GB and criticising the NHS is like blasphemy, but its objectively measured results are truly bad when looked at in an international context. SARS Cov 2 has illustrated that again.

Your best bet would be to find a good specialist endocrinologst and stick to him/her. Type 3c being a mechanically caused insulin deficiency should at least be treatable with insulin which is good to know.

 

[EllieM]

Anyway hello everyone. I would've joined sooner but I didn't know about this forum.

Welcome to the forums. As @Toby789 said, most GPs are clueless about any form of diabetes other than T2 (after all, that's 90% of cases) so it's not surprising that your GPs haven't helped you. Do you now have a formal T3c diagnosis? If so, they'll be able to give you insulin which should hopefully solve your weight issues. If not, you'll want to have a c-peptide test at the very least to demonstrate that you are underproducing insulin.

Whichever type of diabetes you have, you'll have support from these forums.

 

[Toby789]

PS you might also have your iron levels

Welcome to the forums. As @Toby789 said, most GPs are clueless about any form of diabetes other than T2 (after all, that's 90% of cases) so it's not surprising that your GPs haven't helped you. Do you now have a formal T3c diagnosis? If so, they'll be able to give you insulin which should hopefully solve your weight issues. If not, you'll want to have a c-peptide test at the very least to demonstrate that you are underproducing insulin.

Whichever type of diabetes you have, you'll have support from these forums.

Agree - generally people should be very cautious about self-diagnosis and self-medicating with pills or quack cures (it is not clear from your post if you have been diagnosed with T3C or have self-diagnosed). The latter is dangerous as there are other mechanical DMs out there - eg haemochromatosis or pancreatic cancer. Herbs will not treat DM. You need a specialist and proper blood testing.

 

[Twigmarble]

Unfortunately the NHS system seems ill suited to diagnosing and managing chronic conditions, mostly because of the rationing that all price fixing causes. You are a good example - you were passed around GPs instead of being referred to the secondary specialist level, as any competent endocrinologist would take one look at you and not think T2.

Thanks for your reply Toby, I wasn't passed around GPs, as I said I kept changing to find one who'd be understanding about my ME/Chronic Fatigue Syndrome. Most doctors are clueless and sometimes cruel about that but that's another story.

I didn't realise that I could see an endocrinologist about my diabetes, I've never been offered anything other than the yearly tests, but when I talk to a doctor about getting my diagnosis changed to 3c I'll ask. Things are getting urgent because this year I've started getting diabetic neuropathy symptoms and it's getting uncomfortable and difficult to walk. I took a step up on the path outside the other week and my legs collapsed. It was very difficult to get up from the ground because my legs and arms are so weak and wasted from being bed bound for years due to the ME/CFS, so I should see someone.

Does anyone reading know if there's anyone in the forum who has ME in addition to their diabetes and doesn't mind talking about it? It's tough having both.

 

[Toby789]

Thanks for your reply Toby, I wasn't passed around GPs, as I said I kept changing to find one who'd be understanding about my ME/Chronic Fatigue Syndrome. Most doctors are clueless and sometimes cruel about that but that's another story.

I didn't realise that I could see an endocrinologist about my diabetes, I've never been offered anything other than the yearly tests, but when I talk to a doctor about getting my diagnosis changed to 3c I'll ask. Things are getting urgent because this year I've started getting diabetic neuropathy symptoms and it's getting uncomfortable and difficult to walk. I took a step up on the path outside the other week and my legs collapsed. It was very difficult to get up from the ground because my legs and arms are so weak and wasted from being bed bound for years due to the ME/CFS, so I should see someone.

Does anyone reading know if there's anyone in the forum who has ME in addition to their diabetes and doesn't mind talking about it? It's tough having both.

Not a problem - neuropathy is VERY serious and can lead to amputations etc (usually more in men as we seem to get everything worse!). You need to get treatment ASAP (and perhaps you might even consider A&E). And a specialist. I would concentrate on that at the moment rather than on ME. My view (for what it is worth) is that the ME might have distracted you a bit from what was a growing and quite serious underlying DM issue.

 

[Twigmarble]

PS you might also have your iron levels

Agree - generally people should be very cautious about self-diagnosis and self-medicating with pills or quack cures (it is not clear from your post if you have been diagnosed with T3C or have self-diagnosed). The latter is dangerous as there are other mechanical DMs out there - eg haemochromatosis or pancreatic cancer. Herbs will not treat DM. You need a specialist and proper blood testing.

PS you might also have your iron levels

I was diagnosed with type 2 but after reading some posts here by people with type 3c I realised that my condition is like theirs. I'd never heard of any other types than 1 and 2 before yesterday but it was a lightbulb going on. Of course I'm going to speak to a doctor and see if I can be referred to a specialist.

As for the herbs I see things very differently to you and I've studied herbalism, read massive amounts in herbalism text books for years and I have qualifications in it so I know how to use them safely. I source my herbs from a reputable herbal supplier who will only sell tinctures to qualified herbalists; I had to show them my diplomas.

They're doing me a great deal of good and I don't get nasty side effects. The possible side effects from Creon look awful and dangerous and I haven't looked up the ones from metformin yet. Anyway metformin contains an extract from the main herb I'm using for my diabetes, (it's what the drug is based on) Galega offucianalis, and another one, Gymnema, repairs pancreas islets which produce hormones, including insulin. So my meds, the herbs, are actually treating my condition, or repairing the cause, as oppose to managing it.

I've been eating highly nutritious foods too, expensive, but I'm starting to feel so much better it's worth it. I'm glad I found the forums and thank you for being supportive. It's ok that we don't agree on everything.

 

[Twigmarble]

Not a problem - neuropathy is VERY serious and can lead to amputations etc (usually more in men as we seem to get everything worse!). You need to get treatment ASAP (and perhaps you might even consider A&E). And a specialist. I would concentrate on that at the moment rather than on ME. My view (for what it is worth) is that the ME might have distracted you a bit from what was a growing and quite serious underlying DM issue.

You're spot on Toby, the ME has distracted me for years and most of my efforts have gone into trying to cure that so I haven't been talking my diabetes seriously enough but that's changed and I'm prioritising it. Also none of the doctors I've seen ever conveyed any urgency about my diabetes; they seemed to be very casual about it and didn't offer me any advice. I asked one to refer me to a dietician because of being so thin and not getting enough nutrition and he said no. Perhaps the doctors have been casual about my diabetes because I'm not overweight; that just occurred to me.

 

[EllieM]

They're doing me a great deal of good and I don't get nasty side effects. The possible side effects from Creon look awful and dangerous and I haven't looked up the ones from metformin yet. Anyway metformin contains an extract from the main herb I'm using for my diabetes, (it's what the drug is based on) Galega offucianalis, and another one, Gymnema, repairs pancreas islets which produce hormones, including insulin. So my meds, the herbs, are actually treating my condition, or repairing the cause, as oppose to managing it.

Be aware that if your problem is lack of insulin (rather than the over production of T2s) then you really need a proper diagnosis so that you can get the insulin your body needs. Though some T3cs get by without insulin by cutting carbs because their body still produces enough insulin to cope with a low carb diet, you really need to know the cause of your pancreatic damage so as to try to avoid further issues. You also need to be sure that you haven't got LADA (slow onset T1) instead of T3c, because that does eventually need insulin whatever you do.

In any case, a lack of insulin can result in DKA (diabetic ketoacidosis) which is quite quickly fatal if not treated with insulin. igh blood sugars plus high ketones (you can get a meter or use urine testing strips) require a call to 111 and a trip to to A&E. (assuming you are in UK)

Good luck.

 

[Twigmarble]

Be aware that if your problem is lack of insulin (rather than the over production of T2s) then you really need a proper diagnosis so that you can get the insulin your body needs. Though some T3cs get by without insulin by cutting carbs because their body still produces enough insulin to cope with a low carb diet, you really need to know the cause of your pancreatic damage so as to try to avoid further issues. You also need to be sure that you haven't got LADA (slow onset T1) instead of T3c, because that does eventually need insulin whatever you do.

In any case, a lack of insulin can result in DKA (diabetic ketoacidosis) which is quite quickly fatal if not treated with insulin. igh blood sugars plus high ketones (you can get a meter or use urine testing strips) require a call to 111 and a trip to to A&E. (assuming you are in UK)

Good luck.

Thanks Ellie, that's really useful information. I used to test my blood sugars but lost my monitor. I've bought a couple in the last few years but I couldn't use them because they're so complicated to programme. I think one was faulty and I just couldn't get my head around the other one. Do you know of a simple to use one, more like the older ones than overly digital?

I know I don't have type 1 because I know what caused it; it was getting pancreatitis several times so I have a damaged pancreas.

 

[EllieM]

I know I don't have type 1 because I know what caused it; it was getting pancreatitis several times so I have a damaged pancreas.

Nothing to stop you having T1/LADA coincidentally, but I agree that does push up the probability of T3c.

Here's some info on meters I've just copied and pasted from @Rachox

**************************************************************************
Here’s some info on UK meters, and to be clear I have no commercial connections with any of the companies mentioned.

Spirit Healthcare have a meter with cheap strips, the Tee2 + found here:

http://spirit-healthcare.co.uk/product/tee2-plus-blood-glucose-meter/

with the strips found here:

http://spirit-healthcare.co.uk/product/tee2-testing-strips/

Some members have got a free Tee2+ by phoning up to order, with a large order of strips they often throw the meter in for free:

Phone number 0800 8815423


With more expensive strips is their Caresens Dual which I currently use, this one has the advantage of glucose and ketone testing in one machine, it’s to be found here:

https://shop.spirit-health.co.uk/collections/caresens-dual



Home Health have recently bought out this one, but I haven’t heard any reviews yet, links to strips and the meter:

https://homehealth-uk.com/all-products/glucose-navii-blood-glucose-test-strips-50-strip-pack/

There are also discount codes for when you come to buy more strips - "navii5" and "navii10" will give you 20% off purchases of 5 packs of strips and 25% off 10 packs of strips respectively (these are printed on a business card supplied with the meter).


And to be totally transparent I used to use the SD Code Free from Home Health which has the cheapest strips available if bought in quantities of 5 or 10 pots with the codes below. However I found it to be becoming less and less reliable. Here it is for anyone wanting to give it a go, just bear in mind it seems they are replacing it with the Navii, details above.

http://homehealth-uk.com/product-category/blood-glucose/blood-glucose-monitor/

and here for the extra strips

http://homehealth-uk.com/all-products/sd-codefree-test-strips-to-be-used-only-with-the-sd-monitor/

There are discount codes if you buy in bulk.

5 packs 264086

10 packs 975833



Don’t forget to check the box if you have pre diabetes or diabetes so you can buy VAT free. (for all meters and strips)


*******************************************************************

 

[DCUKMod]

Thanks for your reply Toby, I wasn't passed around GPs, as I said I kept changing to find one who'd be understanding about my ME/Chronic Fatigue Syndrome. Most doctors are clueless and sometimes cruel about that but that's another story.

I didn't realise that I could see an endocrinologist about my diabetes, I've never been offered anything other than the yearly tests, but when I talk to a doctor about getting my diagnosis changed to 3c I'll ask. Things are getting urgent because this year I've started getting diabetic neuropathy symptoms and it's getting uncomfortable and difficult to walk. I took a step up on the path outside the other week and my legs collapsed. It was very difficult to get up from the ground because my legs and arms are so weak and wasted from being bed bound for years due to the ME/CFS, so I should see someone.

Does anyone reading know if there's anyone in the forum who has ME in addition to their diabetes and doesn't mind talking about it? It's tough having both.

Twigmarble - Have you had your thyroid thoroughly checked out? I don't just mean your TSH scores, I mean the full hormone, antibodies and vitamin/minerals profiles?

There is a school of thought (I will try to search out the academic papers, which forms strong links between ME/CFS, which is after all a diagnosis of default, being linked to un, or inadequately managed thyroid issues.

As out thyroid glad is at the epicentre of our metabolic health, it is key that is in a decent place, or if not so naturally, managed well.

Having a TSH measured, and being "fine" often just doesn't cut the mustard.

Finally, in response to your query about other members living with ME/CFS, there are several.

 

[Twigmarble]

Twigmarble - Have you had your thyroid thoroughly checked out? I don't just mean your TSH scores, I mean the full hormone, antibodies and vitamin/minerals profiles?

There is a school of thought (I will try to search out the academic papers, which forms strong links between ME/CFS, which is after all a diagnosis of default, being linked to un, or inadequately managed thyroid issues.

As out thyroid glad is at the epicentre of our metabolic health, it is key that is in a decent place, or if not so naturally, managed well.

Having a TSH measured, and being "fine" often just doesn't cut the mustard.

Finally, in response to your query about other members living with ME/CFS, there are several.

I had a test through Dr Myhill's site; it was spit analysis and it found that my cortisol levels were high in the evenings, instead of being higher in the mornings. That's all. I haven't had the money or energy for anything else; what little energy I have goes on daily survival. But I have improved several symptoms and raised my energy levels enough to cook most days, which is a huge change for the better!

I'm taking iodine daily, which I purchased from Dr Myhill's sales site.

 

[DCUKMod]

With diabetes, and to a lesser extent - if you are menopausal or beyond (apologies if you are a youngster), your GP should be monitoring your thyroid.

Whilst those with underactive thyroids often carry a few extra pounds (all part of the condition slowing the metabolism), not all do. Personally, I'm a small, slight person, with thyroid issues.

Have you been tested for Coeliac Disease? If, as you have suggested, you are unable to gain weight, that can be due to malabsorption.

 

[Toby789]

I was diagnosed with type 2 but after reading some posts here by people with type 3c I realised that my condition is like theirs. I'd never heard of any other types than 1 and 2 before yesterday but it was a lightbulb going on. Of course I'm going to speak to a doctor and see if I can be referred to a specialist.

As for the herbs I see things very differently to you and I've studied herbalism, read massive amounts in herbalism text books for years and I have qualifications in it so I know how to use them safely. I source my herbs from a reputable herbal supplier who will only sell tinctures to qualified herbalists; I had to show them my diplomas.

They're doing me a great deal of good and I don't get nasty side effects. The possible side effects from Creon look awful and dangerous and I haven't looked up the ones from metformin yet. Anyway metformin contains an extract from the main herb I'm using for my diabetes, (it's what the drug is based on) Galega offucianalis, and another one, Gymnema, repairs pancreas islets which produce hormones, including insulin. So my meds, the herbs, are actually treating my condition, or repairing the cause, as oppose to managing it.

I've been eating highly nutritious foods too, expensive, but I'm starting to feel so much better it's worth it. I'm glad I found the forums and thank you for being supportive. It's ok that we don't agree on everything.

I am afraid I have to note that you have BGLs of 18, eight loss, neuropathy and other complications. These are consistent with untreated DM. Gallega officinalis is not an ingredient of Metformin, which is synthetic. French Lilac has that compound which led to the discovery/creation of Metformin, but your observation is factually incorrect in a very serious way . Herbs are not meds. If they were then DM treatment would still be back in the 1600s and we would all be dead due to significantly reduced life expectancy.

You are at serious risk of life threatening complications. It may be that doctors are impatient with you and not agree with you because you insist on self-treating with herbs with no medicinal value whatsoever - your BGLs etc demonstrate that. You must get proper treatment straightaway as you are at real risk of very very bad things. Please take this seriously.

 

[InkaLeo]

Hi

I’m new. Pre diabetic, 44mmol/mol. What does that mean?

 

[Twigmarble]

Nothing to stop you having T1/LADA coincidentally, but I agree that does push up the probability of T3c.

Here's some info on meters I've just copied and pasted from @Rachox
Don’t forget to check the box if you have pre diabetes or diabetes so you can buy VAT free. (for all meters and strips)


*******************************************************************

I ordered the TEE2 one, thanks. I tried to thank you on the day but there are website glitches.