Type 1 and Osteoporosis

H

helli

Well-Known Member
Relationship to Diabetes
Type 1
Generally, I try to avoid spending time at hospitals but I have struggled with that goal recently since breaking my elbow.
As I cannot drive one handed (and parking is a nightmare if I could), I think my trainers could walk there on their own - they have been there often enough in the last 2 months to know the way.
I have been for x-rays, check ups, physio and surgery.
Tomorrow, my trainers will be taking me for a DEXA scan - everyone over a certain age who breaks a bone is referred for a bone density test.
Before the test, I need to complete two forms.
  • One is to say that I have no active implants and I am not currently using an electronic device. So I will be removing my CGM and pump. This is because the "DEXA manufacturer (Holologic) have identified a potential risk to humans who have active implanted devices. Additionally, there is a potential risk of interfering or/and damaging other electronic medical devices in close proximity to the equipment." It goes on to say that even phones and smart watches need to be kept at least 2 metres away.
  • The other form is one of those health surveys. It asks questions about broken bones, periods and specific drugs and medical conditions. I was surprised to see "Type 1 diabetes" explicitly mentioned. It is not lumped in under the general "diabetes" label. In fact, no other type of diabetes is mentioned. It wasn't until I did a little research (aka asked Google) that I learned "patients with T1DM are at increased risk of osteoporosis and fractures". Come on guys, don't we have enough to worry about without osteoporosis as well as cardiovascular problems? If there is this added risk, should we be prescribed calcium supplements on top of the statins? Or have I just not reached the age for this yet?
The form also asks about how many times a week I eat cheese and yoghurt and how many pints of milk I drink each day. Do people regularly drink multiple pints of milk (including in cereal) every day? Or are we all going to break our bones because we only have it in our tea/coffee (which I don't but that is a whole other topic/weirdness).
 
helli said:
Do people regularly drink multiple pints of milk (including in cereal) every day?
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I think that would be unusual! I'm guessing it would be common for people to answer "less than 1", or "about 1" for such a question. (Also "about half a litre", though I guess the questions are mostly aimed at people who might well regularly think in pints.)
 
Bruce Stephens said:
I think that would be unusual! I'm guessing it would be common for people to answer "less than 1", or "about 1" for such a question. (Also "about half a litre", though I guess the questions are mostly aimed at people who might well regularly think in pints.)
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I think there is a "bug" in the form given it asks how many times per week I eat cheese and how many pints per day of milk.
If I designed the form, it would be more consistent.

There again, there seems to be many NHS forms that I would like to redesign.
 
I wonder if the Type 1 bit is because apparently Type 1 women have an earlier menopause on average, so maybe that increases the osteoporosis risk? Also, we’re at higher risk of coeliac disease but it’s often ‘silent’ in Type 1s so might not have been spotted?

Strange question about the milk though!
 
Inka said:
I wonder if the Type 1 bit is because apparently Type 1 women have an earlier menopause on average, so maybe that increases the osteoporosis risk?
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I too wondered that but the article I linked (don't worry I don't expect anyone to read it) states "Men with T1DM tend to be particularly prone to osteopenia or osteoporosis compared to women of similar ages."

But it does mention the link to Coeliacs. And a few other hypothesis.
 
They've used the questions on that form for at least the last 15+ years cos it was after I retired which was 2008, that I had a DEXA scan - it ain't broke so nobody has fixed it, anyway so many radiology departments have been taught that form XYZ123 must be completed otherwise they must NOT scan - alter it and chaos ensues.
 
helli said:
I think there is a "bug" in the form given it asks how many times per week I eat cheese and how many pints per day of milk.
If I designed the form, it would be more consistent.

There again, there seems to be many NHS forms that I would like to redesign.
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Had first Dexa Scan 6 years ago, remember form asking about previous broken bones family history of osteoporosis for example, tbh it did ask about diet but not in that detail as you've described above @helli , maybe different nhs trusts have different forms or something?

Anyway I was pleased that Scan was done as was found to be in osteopenia stage so was started on calcium & drug called alendronic acid, took them for 5 years together with vitk2mk7, vitamin was own idea as read that it helps body absorb calcium properly.

Had follow up Dexa scan 2 months back & thankfully things hadn't got worse, letter from consultant said there was a slight improvement in bone density which didn't think was possible but happy to accept.

As they were scanning pelvis area didn't remove pump or sensor, made them aware of both but was told it wasn't a issue.
 
nonethewiser said:
As they were scanning pelvis area didn't remove pump or sensor, made them aware of both but was told it wasn't an issue.
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The letter suggests there is a “potentially” serious issue with the DEXA machine at my local hospital. Pump and CGM maybe ok with a different scanner but I really don’t want to risk it with this one. If mobile phones need to be 2m away, I am not tall enough to keep my diabetes tech that far out of the scanner.
Thankfully, my pump is due for a set change tomorrow and my CGM is due to expire on Wednesday. So it won’t be much of an imposition to remove them both tomorrow and replace them after the scan. I will be wearing my pump to the appointment and replacing it before I leave but can revert to finger pricking for a few hours. One of the disadvantages of a patch pump is that I cannot temporarily remove it like a tubey one but dexa scans are so rare, I don’t mind.

The first I heard about the scan was a letter informing me I couldn’t have one (I didn’t know I had been referred) because I had a “medical implant” (aka a CGM). It was only when I pointed out this wasn’t implanted and I can remove it that they agreed to let me be scanned.

Glad they caught your osteopenia and you have not seen any further issues with it.
 
A really interesting thread @helli

Hope the scan goes without a hitch, and provides you with some helpful information.
 
Bruce Stephens said:
I think that would be unusual! I'm guessing it would be common for people to answer "less than 1", or "about 1" for such a question. (Also "about half a litre", though I guess the questions are mostly aimed at people who might well regularly think in pints.)
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I only know litres but can convert it to pints ok for milk. 1 pint is about the small bottle of milk, 2 pints is roughly the tall thin one, 4 pints is the wider tall one. I get the wider tall one once a week and live alone so I have just under half a pint a day.

Couldn’t tell you what a pint looks like in a mug or how much of a pint fits in a mug or anything though. A pint of beer at the pub is bigger than my mug so I’d get a vague idea that way.
 
Er, 1 litre is 2.2 pints. (ish!)

A typical mug contains approx 250ml so equally roughly, not all that much more than 1/4 of a pint. Plus "A pint of water weighs a pound and a quarter" ROFL
 
trophywench said:
Er, 1 litre is 2.2 pints. (ish!)
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I wonder if you are confusing pints and litres with pounds and kilos?

There are less than 2 pints in a litre. About 1.76 pints to the litre be reasonably precise. Hence 2 pints is 1.13litres.
 
helli said:
don't we have enough to worry about without osteoporosis as well as cardiovascular problems? If there is this added risk, should we be prescribed calcium supplements on top of the statins?
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Over the past 26 years of dealing with multiple leg and foot fractures as well as Charcot foot where my joints have been destroyed I've never had low blood calcium although I have osteopenia. I've been on all the usual Calcium boosting drugs Alendronic acid, Strontium - this was discontinued due to cardiovascular risks, trials of injections for bone healing, a machine that is held over the fracture line to promote bone healing but none have managed to kick start my pathetic attempts to grow new bone. Adding extra calcium to the mix didn't change anything.

The problem for me isn't a lack of calcium, it's poor bone healing due to the inflammatory reaction and all the impaired processes due to Type 1 in the article you link to.

I'm usually advised every time I go out with my leg in a cast to drink pints of milk ( not litres!) as a cure all, a taxi driver this morning on the way back from a foot clinic advised me to drink warm milk with cinnamon to mend my leg - all he knew about my situation was my home address but thought that was the obvious solution I'd overlooked!

I hope your scan goes well and your bone healing process works well.
 
I was scanned this morning. It as relatively painless apart from trying to find a position for my recovering arm that was both comfortable and out of the way of the area (pelvis) they were scanning. Including the time to remove all clothing containing metal (I think you can guess which item was the most troublesome given my limited movement in one arm) and pump, then return it all, the appointment took about 30 minutes.
The biggest surprise is the length of time to get the results - if I don't hear anything in 10 weeks, I am advised to chase my GP.

As I was lying on yet another "bed" with a scanner above me, my inner engineer started to wonder whether it was viable to design a combined scanner which can cover CT, MRI, DEXA and maybe x-rays. Each one has a different purpose and different type of scan but yet they have similar outward designs - a bed and a scanner that goes over/around the patient.
Maybe there is no requirement for a combined scanner. Or maybe the risk of it going wrong and losing all those capabilities is too great. Or maybe it would jut have to be too big for each of the different type of scan gubbins.

As I said, it was relatively quick but there was enough time for my mind to wander.
 
I had to have a DEXA scan a short while ago. I didn't have to remove my sensor or patch pump, but I did have to answer the milk/cheese questions. In fact I drink little milk, just what I have in 1 or 2 cups of coffee, but I use gallons of cream in cooking and on things. Ditto cheese. It transpired I have Osteopenia and now have to chew 2 Calcium/VitD tablets daily. Not long ago I was taking Vit D capsules and a blood test said I had far too much calcium in my blood - go figure!

@Flower - how infuriating to be told how to fix things by people who know nothing about your situation.

@helli hoping your elbow heals soon.
 
helli said:
The biggest surprise is the length of time to get the results - if I don't hear anything in 10 weeks, I am advised to chase my GP.
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Interestingly last time Radiographer said I could have results in a hour if prepared to wait, don't know if it was just because it was my second scan or what as didn't get this option first time around.

I've always liked diary products, properly consume pint of milk a day what with making porridge & copieus amount of tea & coffee, also have yogurt daily & love cheese so consumption wasn't a issue before osteopenia diagnosis, much like yourself @PattiEvans

Possibly mine was due to not producing enough digestive enzymes, earlier was diagnosed with EPI which can effect calcium absorption.

Anyway hope your scan results show no issues @helli
 
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