Review yesterday.

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PattiEvans

PattiEvans

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Yesterday I had a review with the DSN over the phone. I had had my blood tests a week ago and was actually very surprised that my Hba1c was as low as 45 (6.5) since I have not long returned from 5 weeks in Greece where it was very hot and although I had my pump in a special Frio bag designed for the purpose whilst sitting in the sun, the tubing was often in the heat. I had to change the whole thing maximum 2 days as I could see my BGs rising on the 2nd day as the insulin degraded, therefore I saw higher numbers than I usually do. I was also appalled looking at Libreview to see I was supposed to have had 12 hypos in the last 14 days (whilst at home), but as I was able to point out to her, on each occasion I had tested BG and found it mostly did not concur with the Libre. In fact I was below 4mmol only 5 times and only one was below 3.5. So, no, my Hba1c wasn't being artificially lowered, but I had been in range 86% of the time.

I was pleasantly surprised that finally our CCG has put the Libre2 on their prescribing list, so she told me to email my surgery and ask them to change my prescription. We shall see how that goes!

My kidney function which has been suspect for a while due to blood pressure medication is back to normal at 72. The blood pressure is another story....

Cholesterol is 5.2 with HDL at 2.8, LDL at 2.1 and trigs 0.6 so well within the good HDL/Trigs ratio and I am well pleased with it and no, I am not going on medication for it! All other results well in the normal range.

At the end she told me she is leaving to go to another area closer to her home. All the time she has been "seeing" me she hasn't been trained in pump usage, so the conversations have mostly not been much help. Now she's had the training she's going! Ah well!
 
Fab results Patti. Well done!
 
Good to know you have had a review @Pattidevans

Great results, and hope the DSN is replaced (it seems there are a lot of vacancies and/or posts which don’t get advertised or filled), and that any replacement is a good fit with you 🙂
 
The replacement at my surgery is fab (just saw her for my review earlier this month) although she was already at the practice before that and has been trained to take over the role. Great attitude, encouraging, friendly, keen to help and came across as surprisingly knowledgeable considering her very recent appointment and training. Most importantly, she listens and takes in what you say. The previous nurse was also very good and I am blessed with a great GP practice in general but then the lead doctor whose practice it is places a high value on keeping the practice small enough to maintain a level of personal knowledge so that staff know you and probably your parents etc. It is a modern practice with all the facilities including online services ("ask my GP" works incredibly efficiently) but old fashioned values. Best of both worlds! Just after my Dad died, one of the GPs actually stopped her car when she was driving past me walking along the road and got out and gave me a hug and told me how sorry she was and what a great guy he was. That sort of personal touch is priceless.
 
@rebrascora You are very fortunate, there aren’t that many great practices, but I have to say that my GP practice are also exemplary and very caring. The nurse there who sees the diabetics is very knowledgeable and not afraid to ask if she feels she doesn’t know something, particularly pertaining to T1 We are on most friendly terms. However I’m talking about the DSN at the local hospital diabetic clinic. In fact I’m supposedly under the pump team at the county hospital, but in the last 2 years I have only spoken to the consultant once for 10 minutes on the phone. I’ve had phone calls every 6 months from the DSN, who I previously saw in person evry 6 months. She is lovely, and thanks to her I got the Libre prescribed, a relief to my purse as I had been paying for it. However she wasn’t trained in pumping so not a lot of help. I hope we get a good replacement, because the first nurse I saw there when I was first diagnosed was a real bitch, her replacement was more interested in teaching Yoga, so the present one was a breath of fresh air. Apparently they are interviewing next month.
 
I don't know if you'd call it patience exactly, Jen!
 
As other's have said great results @Pattidevans
I hope you get a good replacement DSN for your surgery. If only patients were allowed to interview them.

Unfortunately, my GP surgery seem to struggle to spell "Type 1". They seem to think all diabetics are the same.
Thankfully, I have a great DSN based at the hospital who I first saw 17 years ago when I was first diagnosed and see her at least once a year so she knows my foibles well.
 
Pattidevans said:
Yesterday I had a review with the DSN over the phone. I had had my blood tests a week ago and was actually very surprised that my Hba1c was as low as 45 (6.5) since I have not long returned from 5 weeks in Greece where it was very hot and although I had my pump in a special Frio bag designed for the purpose whilst sitting in the sun, the tubing was often in the heat. I had to change the whole thing maximum 2 days as I could see my BGs rising on the 2nd day as the insulin degraded, therefore I saw higher numbers than I usually do. I was also appalled looking at Libreview to see I was supposed to have had 12 hypos in the last 14 days (whilst at home), but as I was able to point out to her, on each occasion I had tested BG and found it mostly did not concur with the Libre. In fact I was below 4mmol only 5 times and only one was below 3.5. So, no, my Hba1c wasn't being artificially lowered, but I had been in range 86% of the time.

I was pleasantly surprised that finally our CCG has put the Libre2 on their prescribing list, so she told me to email my surgery and ask them to change my prescription. We shall see how that goes!

My kidney function which has been suspect for a while due to blood pressure medication is back to normal at 72. The blood pressure is another story....

Cholesterol is 5.2 with HDL at 2.8, LDL at 2.1 and trigs 0.6 so well within the good HDL/Trigs ratio and I am well pleased with it and no, I am not going on medication for it! All other results well in the normal range.

At the end she told me she is leaving to go to another area closer to her home. All the time she has been "seeing" me she hasn't been trained in pump usage, so the conversations have mostly not been much help. Now she's had the training she's going! Ah well!
Click to expand...

Fabulous a1c and trigs there Patti. Your ratios etc are all in a great range.

On your BP, how is your thyroid? I see from other posts you take meds for it, but assuming your errant BP is higher, rather than lower, are you under medicated?

My BP has become raised in recent times, without anything changing. I am still very sub-optimal on my thyroid, so need to try to get both (BP and thyroid) into a better place.

Life is one big work in progress. 🙂
 
AndBreathe said:
Fabulous a1c and trigs there Patti. Your ratios etc are all in a great range.

On your BP, how is your thyroid? I see from other posts you take meds for it, but assuming your errant BP is higher, rather than lower, are you under medicated?

My BP has become raised in recent times, without anything changing. I am still very sub-optimal on my thyroid, so need to try to get both (BP and thyroid) into a better place.

Life is one big work in progress. 🙂
Click to expand...
Thank you for your interest @AndBreathe 🙂
Thyroid: I was sent to see the Endo regarding my thyroid and he was the one who put me on Liothyronine. At first I had tests for T3 and T4. Then I got an insulin pump and was assigned to a different Endo, the pump specialist, so the first Endo signed me off as he said there was no point in seeing 2 different Endos. Since then (nearly 8 years ago) I have only had TSH tests, which have all been under 1, which is where I feel happy thyroid wise. TBH the pump Endo has shown little or no interest in my thyroid, but as I said the TSH tests indicate I am probably on sufficient thyroid medication (50 mg Levothyroxine and 10mg Liothyronine).

The blood pressure is another (and very complicated) issue. Going back to November last year I was rushed into hospital with an "unexplained" incident where I was seeing flashing lights and having difficulty speaking, with some confustion. This all cleared before I actually got to hospital and my BP was something like 134/90 when they took it. I eventually got sent home. The following week I had a similar episode, but this time I took my BP which was running at 198/110. I was feeling very tired and sleepy and went back to bed, but hubby rang our GP and was told to get me there immediately. I was already on 100mg Losartan but the GP I saw put me on 100mg amlopidine in addition. I believe these incidents were Hypotensive crises. BP seemed to be under control on the amlodipine and Losartan (I do test every day and take the average of 3), but I subsequently went for my diabetes bloods in January and was contacted by the GP as my kidney function had dropped to 39. They felt it was medication induced and so my own GP took me off the Losartan and I was still OK on 100mg Amlodipine except for swollen ankles. My own GP again reduced Amlodipine to 50mg and added 25mg Losartan as it's kidney protective. Kidney function now OK but I was having such low BP in the evenings I was falling over when I got up. So I was referred to a Geriatric specialist and the world and his wife has had an oar in messing about with my medication since then. I feel like a science experiment. Sorry if I continue the saga (including my excursion to A&E in Corfu on holiday) you will lose the will to live and as it is I am sure you wish you never asked! Suffice it to say I have a raft of different pills in my "medical box". I keep a spreadsheet of my BP readings and the day before yesterday I looked at it and saw that the only readings in the green shaded areas are when I was on 50mg Amlodipine and 25mg Losartan so I put myself back on that regime. 2 days later I am seeing significantly better BP results. I expect I shall get into trouble with the geriatric specialist, whom I have a telephone appointment with on 3 August. Though he is actually very approachable.

I shall be seeing him this afternoon when we go to watch him play in a jazz band at the local pub with some friends, but definitely not the time to discuss anything LOL!

Apologies for the huge long post!
 
PS. I think you might have been asking if BP had anything to do with thyroid. It's something I have never thought of, I think BP is one of those age-related issues and I know it ran in my mother's family.
 
Pattidevans said:
Thank you for your interest @AndBreathe 🙂
Thyroid: I was sent to see the Endo regarding my thyroid and he was the one who put me on Liothyronine. At first I had tests for T3 and T4. Then I got an insulin pump and was assigned to a different Endo, the pump specialist, so the first Endo signed me off as he said there was no point in seeing 2 different Endos. Since then (nearly 8 years ago) I have only had TSH tests, which have all been under 1, which is where I feel happy thyroid wise. TBH the pump Endo has shown little or no interest in my thyroid, but as I said the TSH tests indicate I am probably on sufficient thyroid medication (50 mg Levothyroxine and 10mg Liothyronine).

The blood pressure is another (and very complicated) issue. Going back to November last year I was rushed into hospital with an "unexplained" incident where I was seeing flashing lights and having difficulty speaking, with some confustion. This all cleared before I actually got to hospital and my BP was something like 134/90 when they took it. I eventually got sent home. The following week I had a similar episode, but this time I took my BP which was running at 198/110. I was feeling very tired and sleepy and went back to bed, but hubby rang our GP and was told to get me there immediately. I was already on 100mg Losartan but the GP I saw put me on 100mg amlopidine in addition. I believe these incidents were Hypotensive crises. BP seemed to be under control on the amlodipine and Losartan (I do test every day and take the average of 3), but I subsequently went for my diabetes bloods in January and was contacted by the GP as my kidney function had dropped to 39. They felt it was medication induced and so my own GP took me off the Losartan and I was still OK on 100mg Amlodipine except for swollen ankles. My own GP again reduced Amlodipine to 50mg and added 25mg Losartan as it's kidney protective. Kidney function now OK but I was having such low BP in the evenings I was falling over when I got up. So I was referred to a Geriatric specialist and the world and his wife has had an oar in messing about with my medication since then. I feel like a science experiment. Sorry if I continue the saga (including my excursion to A&E in Corfu on holiday) you will lose the will to live and as it is I am sure you wish you never asked! Suffice it to say I have a raft of different pills in my "medical box". I keep a spreadsheet of my BP readings and the day before yesterday I looked at it and saw that the only readings in the green shaded areas are when I was on 50mg Amlodipine and 25mg Losartan so I put myself back on that regime. 2 days later I am seeing significantly better BP results. I expect I shall get into trouble with the geriatric specialist, whom I have a telephone appointment with on 3 August. Though he is actually very approachable.

I shall be seeing him this afternoon when we go to watch him play in a jazz band at the local pub with some friends, but definitely not the time to discuss anything LOL!

Apologies for the huge long post!
Click to expand...

Hypertension is considered to be a sign of undermedication for those living with thyroid challenges, although to be honest, the things impacted by wonky thyroid, or suboptimal thyroid treatments is enormous.

To be honest what left me aghast in your post was your Endo's approach to your thyroid management. Only measuring TSH levels? In my view, totally useless, aside from as the most utterly basic diagnostic test, but once taking hormonal replacement - particularly T3 it is as much use as a chocolate teapot. In almost all cases TSH will be extremely low, and sometimes undetectable.

TSH isn't a thyroid hormone. It is produced by our pituitary glands and it's purpose is to simulate the thyroid to create T4. Once T4 is generate a person with decent thyroid function then goes on to create T3 which is the active thyroid hormone.

The reason TSH goes up in those whose thyroid has gone underactive is they thyroid is struggling to generate enough T4, so the pituitary signals for more (and maybe even more), leading to elevated TSH levels.

So elevate TSH, plus low T4 can often be treated very well with T4, because the recipient can convert their own, plus the synthetic T4 to the active T3.

Some people don't convert well, for a number of reasons and T3 needs to be added.

If you are taking T3, you really do need regular tests for TSH, FT4 and T3 to ensure there is a semblance of balance. Most often in those circumstances the results for someone feeling well will be very low TSH, mid to top of the range FT4 and upper half of the range for T3.

(All of this ignores auto-immune thyroiditis/Hashimoto's.)

I hope that doesn't feel like a lecture. It certainly isn't meant to be, and if your feel on top form with your current regime, maybe you got very lucky. If you would like a deeper insight, but feel you don't want to ask your GP or Endo for the bloods, I'd suggest MonitorMyHealth who offer the panel for £29. It's a finger prick test.


Edited to add the url: https://monitormyhealth.org.uk/thyroid-test/
 
AndBreathe said:
Hypertension is considered to be a sign of undermedication for those living with thyroid challenges, although to be honest, the things impacted by wonky thyroid, or suboptimal thyroid treatments is enormous.

To be honest what left me aghast in your post was your Endo's approach to your thyroid management. Only measuring TSH levels? In my view, totally useless, aside from as the most utterly basic diagnostic test, but once taking hormonal replacement - particularly T3 it is as much use as a chocolate teapot. In almost all cases TSH will be extremely low, and sometimes undetectable.

TSH isn't a thyroid hormone. It is produced by our pituitary glands and it's purpose is to simulate the thyroid to create T4. Once T4 is generate a person with decent thyroid function then goes on to create T3 which is the active thyroid hormone.

The reason TSH goes up in those whose thyroid has gone underactive is they thyroid is struggling to generate enough T4, so the pituitary signals for more (and maybe even more), leading to elevated TSH levels.

So elevate TSH, plus low T4 can often be treated very well with T4, because the recipient can convert their own, plus the synthetic T4 to the active T3.

Some people don't convert well, for a number of reasons and T3 needs to be added.

If you are taking T3, you really do need regular tests for TSH, FT4 and T3 to ensure there is a semblance of balance. Most often in those circumstances the results for someone feeling well will be very low TSH, mid to top of the range FT4 and upper half of the range for T3.

(All of this ignores auto-immune thyroiditis/Hashimoto's.)

I hope that doesn't feel like a lecture. It certainly isn't meant to be, and if your feel on top form with your current regime, maybe you got very lucky. If you would like a deeper insight, but feel you don't want to ask your GP or Endo for the bloods, I'd suggest MonitorMyHealth who offer the panel for £29. It's a finger prick test.


Edited to add the url: https://monitormyhealth.org.uk/thyroid-test/
Click to expand...
@AndBreathe No, it doesn't feel like a lecture and thank you for your extensive response. In fact I did research thyroid issues quite intensively when I was first diagnosed with under-active thyroid so I was aware of most of what you have said above except the link between the thyroid and blood pressure, which I shall certainly mention to the Doctor when I speak to him on 3rd August. I shall also ask for the T4 and T3 tests to be reinstated. This is the geriatric specialist that I'd rather not admit to seeing, not feeling in the least geriatric! LOL!

Around 9 years ago I advocated for myself as I felt for various reasons (and symptoms) that I may be one of the people who did not convert T4 to active T3 and eventually saw the Endo Dr C, he put me on Liothyronine and whilst I was seeing him I did have T4 and T3 tests.

I was originally diagnosed as a T2 because of my age at diagnosis, but went onto insulin right away and had always felt that I was not T2. So after advocating for myself again with the nurse at my GP, she wrote to Dr C and asked him to do the antibody tests to see if I was T1 as indeed I turned out to be. At that point it was as though someone opened a door to completely different and much better treatment. So a while down the line I asked for an Insulin pump. I was successful and saw another Endo, Dr B who had to give the permission for the pump funding. At my next appointment with Dr C he said it wasn't necessary to see two different Endos so he wrote to Dr B asking him to take over my thyroid treatment. Frankly Dr B is only interested in one thing and that's how many hypos you have. That's when the thyroid tests slipped through the net. I didn't worry overmuch as I felt quite OK at that point.

Fast forward a few years and I was diagnosed with pernicious Anaemia and B12 deficiency. I've had another battle on my hands with that, getting them to agree to me having my injections more frequently than every 12 weeks. I now have them every 8 weeks. Meantime I've also had a firm diagnosis of autoimmune alopecia areata. All the autoimmune joys never seem to end! I feel sorry for people who are unable to fight their own battles for whatever reasons, but honestly it's blooming tiring!

Then... since November last year I have felt like a science experiment. I'm sorry if I have been repetitive and I am really very grateful to you for highlighting the connection between the thryroid and BP.
 
Pattidevans said:
@AndBreathe No, it doesn't feel like a lecture and thank you for your extensive response. In fact I did research thyroid issues quite intensively when I was first diagnosed with under-active thyroid so I was aware of most of what you have said above except the link between the thyroid and blood pressure, which I shall certainly mention to the Doctor when I speak to him on 3rd August. I shall also ask for the T4 and T3 tests to be reinstated. This is the geriatric specialist that I'd rather not admit to seeing, not feeling in the least geriatric! LOL!

Around 9 years ago I advocated for myself as I felt for various reasons (and symptoms) that I may be one of the people who did not convert T4 to active T3 and eventually saw the Endo Dr C, he put me on Liothyronine and whilst I was seeing him I did have T4 and T3 tests.

I was originally diagnosed as a T2 because of my age at diagnosis, but went onto insulin right away and had always felt that I was not T2. So after advocating for myself again with the nurse at my GP, she wrote to Dr C and asked him to do the antibody tests to see if I was T1 as indeed I turned out to be. At that point it was as though someone opened a door to completely different and much better treatment. So a while down the line I asked for an Insulin pump. I was successful and saw another Endo, Dr B who had to give the permission for the pump funding. At my next appointment with Dr C he said it wasn't necessary to see two different Endos so he wrote to Dr B asking him to take over my thyroid treatment. Frankly Dr B is only interested in one thing and that's how many hypos you have. That's when the thyroid tests slipped through the net. I didn't worry overmuch as I felt quite OK at that point.

Fast forward a few years and I was diagnosed with pernicious Anaemia and B12 deficiency. I've had another battle on my hands with that, getting them to agree to me having my injections more frequently than every 12 weeks. I now have them every 8 weeks. Meantime I've also had a firm diagnosis of autoimmune alopecia areata. All the autoimmune joys never seem to end! I feel sorry for people who are unable to fight their own battles for whatever reasons, but honestly it's blooming tiring!

Then... since November last year I have felt like a science experiment. I'm sorry if I have been repetitive and I am really very grateful to you for highlighting the connection between the thryroid and BP.
Click to expand...
Thyroid is such a vital cornerstone of our metabolic health it impacts so many things in our body and vice versa.

For thyroid hormones to work efficiently, Vitamin D, Folate, Ferritin and also B12 need to be at decent levels.

I hope one way or another you manage to have a decent broad blood panel a couple of times a year.

Unfortunately, most Endos are diabetes focused, which can be unhelpful for those of us with other endocrinological challeneges in play.

The first guy I saw was very laid back about my highly atypical hypothyroidism, declaring we'd never work it out after our initial chat and basic bloods. I was so incandescent my GP suggested I get a second opinion and asked me to research whom I would like that from, which I did.

It's really hard work making sure things are done properly. I recently needed a referral made, so organised a telcon with my GO to organise it. At the end of the call his action was to get the referral done. 7 days later, he arranged a call with me which pretty much replayed that of 7 days before, with the same outcome action for the GP.

Fortunately, prior to the call he arranged with me, I logged onto my record to see if there were new notes I hadn't seen. What I found was his notes from the earlier chat were materially wrong. On the upside, at least they could be corrected prior to the referral being done.

Honestly. You couldn't make it up.

Just how do some of those less able (in whatever way) get decent care? (Rhetorical question)
 
@AndBreathe I agree, at times you couldn't make it up! Anyway when I speak to the geriatric consultant on 3 August I will put it to him that I have discovered the direct correlation between thyroid and BP and ask for the tests for T4 and T3 to be done. The tests for B12 are more problematic because if you have been treated for B12 in the previous 4 months a blood test will show a sufficiency even though you may in fact be deficient. There are other more reliable tests but the GPs don't seem to recognise them. I have a lot of information on these tests and printed out 13 pages which I sent to the last GP I saw regarding B12, but sadly I discovered he did not read them. What a surprise! To be honest B12 is water soluble so you cannot overdose. I am seriously considering buying the stuff and self-injecting. I think my Vit D is good as I take VitD gel caps 4000iu daily except when I am somewhere hot e.g. when I was in Greece for 5 weeks where I should be making my own VitD.

I'll let you know what happens at the 3 August conversation!
 
@AndBreathe Things have progressed, but slowly! I want to thank you for advice and prompting me to go further with this issue. I've been worried by a high pulse rate for a while now...along with the high BPs. So I spoke to the Geriatric Consultant and explained regarding the Liothyronine and lack of blood tests for T4 and T3. To my surprise he said I had had T4 tests last August when the Laboratory thought my TSH was too low. No one communicated that to me, nor do I know what the result of the T4 test was.

However, I did get the full spectrum of Thyroid tests done last week and the results came back as TSH=0.2 Free T4=12.6 T3 = 7, (Reference ranges: TSH: 0.27 - 4.2 mU/L, Free T4 12 - 22 pmol/L, Free T3: 3.1 - 6.8 pmol/L. ) T3 was over the reference range, so we are trying me on 50mg Thyroxine which I was on before and only 5mg Liothyronine - was on 10mg. Difficult because I have 20mg Liothyronine tablets which I have to cut into quarters. I am to have more tests in 3 months. I think things might be going in the right direction with BP and pulse rate as they have both dropped, but I am only a couple of days into the new regime so it's hard to say if it's just a blip.

Anyway, wanted to thank you for your prompting, it's been very helpful.
 
Have you ever tried earthing to improve your blood pressure ?

The inner part of our planet is positively charged due to temperature and pressure causing ionization and this is balanced out by the surface being negatively charged. If you connect to earth for several hours a day, the blood platelets become negatively charged. As like charges repel each other, the blood viscosity is reduced.

Plenty of stuff on t'Internet about it, some examples here -

pubmed.ncbi.nlm.nih.gov

Grounding Patients With Hypertension Improves Blood Pressure: A Case History Series Study - PubMed

This is the first known study measuring the influence of grounding the body on hypertension. The results indicate that grounding appears to be a safe BP-reducing therapy warranting further research.
pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov

How Grounding Affects Blood Viscosity - Earthing Institute

The surface of red blood cells carries a negative electric charge that maintains spacing of the cells in the bloodstream. The stronger the negative charge the
earthinginstitute.net earthinginstitute.net
 
Terry-J said:
Have you ever tried earthing to improve your blood pressure ?

The inner part of our planet is positively charged due to temperature and pressure causing ionization and this is balanced out by the surface being negatively charged. If you connect to earth for several hours a day, the blood platelets become negatively charged. As like charges repel each other, the blood viscosity is reduced.

Plenty of stuff on t'Internet about it, some examples here -

pubmed.ncbi.nlm.nih.gov

Grounding Patients With Hypertension Improves Blood Pressure: A Case History Series Study - PubMed

This is the first known study measuring the influence of grounding the body on hypertension. The results indicate that grounding appears to be a safe BP-reducing therapy warranting further research.
pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov

How Grounding Affects Blood Viscosity - Earthing Institute

The surface of red blood cells carries a negative electric charge that maintains spacing of the cells in the bloodstream. The stronger the negative charge the
earthinginstitute.net earthinginstitute.net
Click to expand...

Might be something in that..... provided of course the earth is flat and the Americans did not land on the moon. Otherwise to be taken with a large pinch of salt, sodium free of course.
 
The first link seems genuine, but the 2nd wants my email address if I want to know how to do it.
 
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