Advice for Endocrinologist referral in the UK / NHS - worsening symptoms largely shrugged off by GP

JamesAW

Newbie
Messages
3
Type of diabetes
Type 1
Treatment type
Insulin
Hello all - I’ve been having some worrying difficulties over the last year and so seeking a bit of guidance.

I’m 36, based in Essex, and was diagnosed Type 1 in 2015.

For the most part, I’ve handled it well (initially I adopted a healthy diet and took up weight training / martial arts).

I was disciplined and well controlled (my hba1c was sub 45 within 6 months of diagnosis…down from 132)

During the lockdowns in 2020, I struggled with mental health, weight gain and I lost control of things (75-85 hba1c)

My bloods are now more controlled and am back to a sub 58 level, however, over the last 12 months things have become problematic.

I’m at the stage where I’ve had almost 6 months off work due to being unable function reasonably on a daily basis. Sleep is a challenge and when I do sleep it’s for 13+ hours, maintaining an exercise regime extremely challenging due to both a steady decrease in muscularity and much longer recovery periods (from even the most basic workouts).

My GP had been excellent initially and ordered a number of tests but feel now the symptoms are being treated rather than the root causes.

So, I am borderline deficient in testosterone (9 nmol serum level), VITAMIN D & B12 - which is no doubt having a substantial impact.

However these are allegedly “normal” levels and whilst on “the low side” for the most part “should be fine” (exact words used!).

I naturally don’t have medical training though the changes to my body are telling me something is not right.

I have of course considered the natural decline that comes with age but just a year ago I could have quite happily completed 4 days heavy exercise per week.

It seems the NHS has much lower scales for what is considered deficient / sub optimal in many areas - despite widely available evidence to the contrary.

Instead, my problems have been labelled as symptoms of depression.

I really feel I need a 2nd opinion from an endocrinologist but I don’t seem to be getting anywhere at all and ironically is causing a resurgence of past mental health problems.

Does anyone have similar experiences on this front?

Open to all wisdom and advice able to share.

Best regards James
 

MrsA2

Expert
Messages
6,732
Type of diabetes
Type 2
Treatment type
Diet only
Please, what medications are you on amd how long for? Diabetes included
 

ElenaP

Well-Known Member
Messages
513
Type of diabetes
Type 1
Treatment type
Pump
....... I need a 2nd opinion from an endocrinologist......
Are you saying that you are not happy with your current hospital endocrinologist? Or are you saying that that there is no endocrinologist as a part of your hospital team?
 

JamesAW

Newbie
Messages
3
Type of diabetes
Type 1
Treatment type
Insulin
Are you saying that you are not happy with your current hospital endocrinologist? Or are you saying that that there is no endocrinologist as a part of your hospital team?
I would need a referral from my GP to see an endocrinologist (or indeed any specialist) on the NHS, and wouldn’t otherwise unless I was hospitalised with DKA (community diabetes team is comprised of nurses and hca’s).

The difficulty is convincing them to provide one!
 

JamesAW

Newbie
Messages
3
Type of diabetes
Type 1
Treatment type
Insulin
Please, what medications are you on amd how long for? Diabetes included
I’m on FIASP (insulin aspart) Levemir (Insulin Detemir) for diabetes for coming up to 9 years.

omeprazole for about 8 months for gastroparesis / severe reflux.

atorvastatin (for cholesterol…as this jumped 5 points in the last 12 months)

Not sure if it helps but my Vit D level is 48 and thyroid test was above high reference range (though ruled out via blood test)
 

MrsA2

Expert
Messages
6,732
Type of diabetes
Type 2
Treatment type
Diet only
Low B12 causes all sorts of low energy symptoms. And also read the statin packet for side effects. I believe muscle problems are often reported. Have a search round the forum, I'm sure I've read it often but can't remember where
 

lovinglife

Moderator
Staff Member
Moderator
Messages
5,661
Type of diabetes
Type 2
Treatment type
Diet only
I would need a referral from my GP to see an endocrinologist (or indeed any specialist) on the NHS, and wouldn’t otherwise unless I was hospitalised with DKA (community diabetes team is comprised of nurses and hca’s).

The difficulty is convincing them to provide one!
Hi @JamesAW & welcome to the forum:)

You have a right to ask for a second opinion, you don’t have to wait until you’re ill, although it’s not a legal right it is recognised as a right. Have a look at this website below it may have some info to help you.

 

AndBreathe

Master
Retired Moderator
Messages
11,572
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
I’m on FIASP (insulin aspart) Levemir (Insulin Detemir) for diabetes for coming up to 9 years.

omeprazole for about 8 months for gastroparesis / severe reflux.

atorvastatin (for cholesterol…as this jumped 5 points in the last 12 months)

Not sure if it helps but my Vit D level is 48 and thyroid test was above high reference range (though ruled out via blood test)
What does your thyroid statement actually mean? If your blood results are above the reference range, what was ruled out by blood tests?

I have had a tricky and long battle with my thyroid, which took several years to get to a good place. Along the way, I really dug into the education side of things.

I think I may have an idea what was ruled out, but would want you to conform it before making any further statement.

(P.S, for Vitamin D, my Endo likes me at 100+.)
 
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