Just a question

[Speedbird]

Hi, would someone be able to shed any light on my last test result?
I have been diagnosed as a late onset type 1. Do my results gauge me as a Type 2?

Thank you

(Mod edit to conceal ID.)

 

[AndBreathe]

Hi, would someone be able to shed any light on my last test result?
I have been diagnosed as a late onset type 1. Do my results gauge me as a Type 2?

Thank you


View attachment 61613


(Mod edit to conceal ID.)

I'd be more inclined to think it standardised wording on the system. It's only your HbA1c, which is a universal test, irrespective of type. My own results (in SystmOnline) don't have that remark, but in your shoes, I wouldn't be concerned.

Have you been having tests to ascertain your type?

 

[MissMuffett]

My hba1c was 94 in March! The report said as yours ‘Abnormal but expected’ ‘Please see the diabetic nurse’
so I ignored it for a few days then phoned to make an appointment

 

[Speedbird]

I'd be more inclined to think it standardised wording on the system. It's only your HbA1c, which is a universal test, irrespective of type. My own results (in SystmOnline) don't have that remark, but in your shoes, I wouldn't be concerned.

Have you been having tests to ascertain your type?

My diabetic consultant has said I’m late onset Type 1. It’s been confirmed. I questioned this as my diabetic nurse encouraged me to go on the Desmond course, I would have thought Daphne would be more appropriate .
I am on Lantus and Novorapid.

I also have low ferritin levels which may skew the HbA1c result.

 

[AndBreathe]

My diabetic consultant has said I’m late onset Type 1. It’s been confirmed. I questioned this as my diabetic nurse encouraged me to go on the Desmond course, I would have thought Daphne would be more appropriate .
I am on Lantus and Novorapid.

I also have low ferritin levels which may skew the HbA1c result.

In that case, I'd land on the side of doubting your nurse's knowledge of T1 and all that goes with it.

Is your diabetes care mainly done at a hospital or clinic, or is it based with your GP? If the latter, sounds like it could be helpful to be referred to a specialist unit to facilitate things like DAPHNE and/or pump therapy, just as examples.

I hope you are managing to get your ferritin up.

 

[Speedbird]

In that case, I'd land on the side of doubting your nurse's knowledge of T1 and all that goes with it.

Is your diabetes care mainly done at a hospital or clinic, or is it based with your GP? If the latter, sounds like it could be helpful to be referred to a specialist unit to facilitate things like DAPHNE and/or pump therapy, just as examples.

I hope you are managing to get your ferritin up.

Ah, it was hard work right from the start with GP. I felt so bad and losing weight that eventually I went privately to see a diabetic consultant.
Turns out I was producing very little insulin and very insulin sensitive. Metformin and Gliclazide did nothing for me.
The GP had to acknowledge and eventually my records were changed to be treated as a Type1.
The DN is still dubious. And this is why I question my latest test result from my surgery.
I’ve to speak to the nurse on Monday about my low ferritin levels. Also low T3 level.
I just feel I need to be armed and ask the right questions.

 

[AndBreathe]

Ah, it was hard work right from the start with GP. I felt so bad and losing weight that eventually I went privately to see a diabetic consultant.
Turns out I was producing very little insulin and very insulin sensitive. Metformin and Gliclazide did nothing for me.
The GP had to acknowledge and eventually my records were changed to be treated as a Type1.
The DN is still dubious. And this is why I question my latest test result from my surgery.
I’ve to speak to the nurse on Monday about my low ferritin levels. Also low T3 level.
I just feel I need to be armed and ask the right questions.

In your shoes, I would ask for a referral to hospital care.

I'm impressed you have had your T3 tested at all. Do you have hypothyroidism treated by T3, or a combo of T4 and T3. I have such a job to get mine tested, even though I take T3. Its a regular battle.

 

[Speedbird]

In your shoes, I would ask for a referral to hospital care.

I'm impressed you have had your T3 tested at all. Do you have hypothyroidism treated by T3, or a combo of T4 and T3. I have such a job to get mine tested, even though I take T3. Its a regular battle.

T3 was a private test too, yet again feeling fatigued and not taken seriously enough to be given a blood test for thyroid. (I have nodules and have been having check ups and biopsies at hosp but then discharged as all seemed fine) T3 result I will take to show my DN on Monday.

 

[jonathan183]

Suggest you press for them to refer you to a diabetic consultant under the NHS, when you get to see the consultant make sure they are aware of all your tests and potential additional issues.

 

[Speedbird]

Suggest you press for them to refer you to a diabetic consultant under the NHS, when you get to see the consultant make sure they are aware of all your tests and potential additional issues.

Thank you.

 

[AndBreathe]

T3 was a private test too, yet again feeling fatigued and not taken seriously enough to be given a blood test for thyroid. (I have nodules and have been having check ups and biopsies at hosp but then discharged as all seemed fine) T3 result I will take to show my DN on Monday.

What were the TSH and T4 scores? If you aren’t taking medication or only Levothyroxine that can influence the possible root causes.

Im sure it will be zero consolation to learn that my assessment is GPs know less about thyroid that diabetes. This is a feeling backed up by my old GP who deferred to me in terms of “next steps” , as she considered my knowledge outstripped hers on thyroid challenges.

She loved away. Was it all my fault? (rhetorical).

 

[Mrs HJG]

Hi @Speedbird as you went privately, the consultant should have sent a letter to your GP confirming the findings and what needs to happen, ie. to come under the care of a hospital team and Endo - my emailed letter was already cc.'d to me by the time I got home from the appointment. In my case although I had the email, the surgery systems and the hospital systems don't automatically talk to each other and can be difficult to matched up to your GP records. I was eager to get things rolling and had to tell the GP receptionists to get searching and sorting as they wouldn't normally do that Letters now sent from him via the NHS take 4-6 weeks to appear.

You should be able to see on your NHS App what type they have you recorded as on your GP Health Record, but it could take a bit of scrolling, I have an entry on the same day as the record of me having seen the consultant was added.

Looks like you are possibly in the same part of the country as me, by the lab number, so expect the worst/slowest service, and be happy when it's not so bad!

Good luck.

 

[Speedbird]

What were the TSH and T4 scores? If you aren’t taking medication or only Levothyroxine that can influence the possible root causes.

Im sure it will be zero consolation to learn that my assessment is GPs know less about thyroid that diabetes. This is a feeling backed up by my old GP who deferred to me in terms of “next steps” , as she considered my knowledge outstripped hers on thyroid challenges.

She loved away. Was it all my fault? (rhetorical).

Thanks for getting back to me.

I’m not taking any medication. My TSH and free T4 were normal, only the free T3 was down. I’m not quite sure how this all computes and hoping someone at the surgery will explain.
Although going by your reply it will probably be “next steps”
Maybe sort out my low ferritin first.

 

[Speedbird]

Hi @Mrs HJG. All done and dusted back in January 2022. The surgery received the letter from my consultant but it took an age after that for them to confirm the diagnosis except that the DN seems not to have grasped that in my case. No matter, I will see her tomorrow to clear it all up once and for all so fingers crossed..

It does seem like a long process and I‘m glad things have been resolved for you. I hope you are well.

 

[becca59]

Perhaps you could say to her something like, ‘you seem to feel that I am a type 2 not 1, am I right? If so why do you think that?’ I bet she feels it’s because you are older and some professionals are still stuck in the past. As others have said it is very important to be under a hospital team for your main care. This will give you better access to technology and up to date insulins. It is your right and you should insist. Good luck!

 

[Speedbird]

Hi @Mrs HJG
I have sent you a private message.

 

[AndBreathe]

Thanks for getting back to me.

I’m not taking any medication. My TSH and free T4 were normal, only the free T3 was down. I’m not quite sure how this all computes and hoping someone at the surgery will explain.
Although going by your reply it will probably be “next steps”
Maybe sort out my low ferritin first.

Definitely sort out the low ferritin as it is important in your overall metabolic health, and if low, any Levothyroxine added would not be taken up optimally anyway.

What is your diet like? Are you perchance on a reduced or low carb diet? There is a school of thought suggesting those living a LC lifestyle will naturally have slightly lower T3.

Thing is, T3 is the only active thyroid hormone. Your pituitary gland in the brain generates TSH (stimulating thyroid activity). That thyroid activity is T4, which then by black magic our bodies convert to T3, which is the real get up and go of the thyroid hormones.

To be honest, thyroid is complex, and if your TSH is "in range" you are unlikely to gain any traction from your GP. Obviously where it is in range is important, with an ideal of 1-2, representing euthyroid. Much more than 2 could, and I stress could suggest the thyroid may be struggling. That is when the T4 result comes into play and that depends where that is in range, but again, if it is in range, I doubt you will achieve traction.

Sooooooooooooooo, for now, work on the ferritin. With it in a better place, your thyroid results my well improve, but as I say, if you are broadly "in range", traction will be tricky to achieve.

As you may have guessed, I have been through this loop, but now in a better place. Typically for me, my thyroid challenges are not typical, classic or even remotely usual, but it is what it is. My comments are based on my experiences and self education over a period of years.

If you want to learn more about your thyroid, it could be worthwhile looking at Health Unlocked where there is an excellent and knowledgeable community: https://healthunlocked.com/thyroiduk/posts

 

[Speedbird]

Thank you so much @AndBreathe. A lot of useful information.

And, yes I am on a low carb diet, but this is just to keep my insulin levels low.
My mindset is still T2 and it’s hard to acknowledge that I don’t have to fear carbs so much these days as I can inject bolus. It is all a learning process.

But I do agree that I need to get my ferritin levels up and we will see if my fatigue improves as well as my FreeT3.
All other thyroid test in range TSH 1.34. Free Thyroxine 17. I guess it will be “move along, nothing to see hear”

 

[AndBreathe]

Thank you so much @AndBreathe. A lot of useful information.

And, yes I am on a low carb diet, but this is just to keep my insulin levels low.
My mindset is still T2 and it’s hard to acknowledge that I don’t have to fear carbs so much these days as I can inject bolus. It is all a learning process.

But I do agree that I need to get my ferritin levels up and we will see if my fatigue improves as well as my FreeT3.
All other thyroid test in range TSH 1.34. Free Thyroxine 17. I guess it will be “move along, nothing to see hear”

Those thyroid numbers are very good. What is your T3? Were your thyroid antibodies tested? If so, were they significant?

I have never, even heavily medicated achieved a FT4 of 17, and even taking a hefty dose of T3, my T3 just gets into range.

For now, don't sweat the (thyroid) numbers.

 

[Helzhelz]

Hi, do you know if you have had C-peptide and Islet cell antibodies blood tests? They are the ones that confirm the autoimmune side of type 1 diabetes.

The wording on the test result you posted tends to be standard as produced by the lab. I’m a diabetic and a GP practice nurse who does diabetic reviews for patients. Anyone suspected of Type 1 at diagnosis, we would send the above tests to confirm.

Hope that helps!