Advice before Endo appt

[KB1978]

So I posted the other day about my fasting BG which has gone up and now my blood monitor has calculated my hba1c over the past few weeks and that has risen too which I’m at a loss as to why
I was diagnosed beginning of sept by high fasting and OGTT
My hba1c was 41 at the end of August and 3 months prior to that was 39 and it’s now saying it’s 52 so it’s increased a lot over 6 months and my fasting is on average between 8..4-9
Since I’ve been diagnosed I have cut out carbs and cakes etc which I didn’t eat much of anyway and I eat mainly eggs dairy veg meat no potatoes rice or pasta etc and the occasional porridge and bran flakes

I have a poorly managed thyroid underactive and PCOS and I’m already on metformin 1000 slow release

I keep sweating feel tired all the time have upper abdominal pain lethargic and just generally feel rubbish

I have an endo appointment tomorrow about my PCOS but I’m going to flag this too has anyone had similar?

 

[EllieM]

Not personally, but if low carb is suddenly failing you should make sure that T1/LADA has been ruled out (c-peptide and GAD tests). Quite often people just get diagnosed as T2 without those checks being performed so it may be time to revisit that T2 diagnosis.

Good luck.

 

[Resurgam]

I just thought - maybe gallstones?
I take Thyroxine as my thyroid failed many years ago - tested annually in normal times and dose adjusted if required. Seems no problem

 

[JoKalsbeek]

So I posted the other day about my fasting BG which has gone up and now my blood monitor has calculated my hba1c over the past few weeks and that has risen too which I’m at a loss as to why
I was diagnosed beginning of sept by high fasting and OGTT
My hba1c was 41 at the end of August and 3 months prior to that was 39 and it’s now saying it’s 52 so it’s increased a lot over 6 months and my fasting is on average between 8..4-9
Since I’ve been diagnosed I have cut out carbs and cakes etc which I didn’t eat much of anyway and I eat mainly eggs dairy veg meat no potatoes rice or pasta etc and the occasional porridge and bran flakes

I have a poorly managed thyroid underactive and PCOS and I’m already on metformin 1000 slow release

I keep sweating feel tired all the time have upper abdominal pain lethargic and just generally feel rubbish

I have an endo appointment tomorrow about my PCOS but I’m going to flag this too has anyone had similar?

Are you measuring the rest of the day too, or only your fasting? It's the highest number most of us see in the day, the rest of the time we're lower. It might be skewing the results of your HbA1c calculation a bit. Though I have to say, porridge and bran flakes... Not a good choice, when you're doing well with the low carbing the rest of the time. Can you do an exact rundown of what you eat and drink in a given day? Do you know what your readings are before a meal and 2 hours after? It might give a better picture of where you're at than just the fasting. (Fasting can go up due to stress, interrupted sleep, nightmares, a cold, the flu jab, you name it... Doesn't have to be a carb issue.)

In any case, if something troubles you, bring it up at the appointment. That's what they're there for anyway and they can order you a proper HbA1c maybe?
Good luck,
Jo

 

[DCUKMod]

So I posted the other day about my fasting BG which has gone up and now my blood monitor has calculated my hba1c over the past few weeks and that has risen too which I’m at a loss as to why
I was diagnosed beginning of sept by high fasting and OGTT
My hba1c was 41 at the end of August and 3 months prior to that was 39 and it’s now saying it’s 52 so it’s increased a lot over 6 months and my fasting is on average between 8..4-9
Since I’ve been diagnosed I have cut out carbs and cakes etc which I didn’t eat much of anyway and I eat mainly eggs dairy veg meat no potatoes rice or pasta etc and the occasional porridge and bran flakes

I have a poorly managed thyroid underactive and PCOS and I’m already on metformin 1000 slow release

I keep sweating feel tired all the time have upper abdominal pain lethargic and just generally feel rubbish

I have an endo appointment tomorrow about my PCOS but I’m going to flag this too has anyone had similar?

KB, you state your thyroid is poorly managed. As our thyroid glands are a cornerstone of our metabolic health, I would want that to be addressed ASAP.

If by poorly manage you mean you are still in the process of titrating your thyroxine medication, with a view to achieving an optimum level, unfortunately, there is no sensible shortcut to that, and I appreciate that can be mega frustrating.

If you mean it is not being addressed, then that really should be, either by the Endo you are seeing or by your GP.

Unfortunately, many medics have scant knowledge of thyroid dysfunction, and base all their diagnostics and treatment strategies on TSH, which once any form of treatment has started is as much use as the proverbial chocolate teapot, in my view.

Finally, I wouldn't invest too much in what your meter says about your estimated A1c. Mine never, ever match, or get close. My meter and lab results are usually about 10 points adrift (although still in a decent range). I have learned to accept that as "what it is". Variances in meter reading can be all manner of things, including different batches of strips reading just a touch higher, or lower, even that your preceding batch.

Have you had a recent "proper" A1c test done?

 

[KB1978]

Hi all thanks for the responses

Jo - yes I do take them at other times during the day I usually aim for 3 a day and all of them are going up but then randomly I will get the odd reading at around 5.4 too so they are sometimes normal level but looking back have definitely increased against eating the same type of food

So typical day coffee with cream
Or full fat Greek yog berries the odd day maybe bran flakes but not everyday

Cheese and ham omelette maybe a few nuts and dark chocolate for a snack or salmon fillet tuna etc for lunch probably with a few cherry tomatoes

Meat or Fish with veg for dinner
Sometimes homemade chilli and curries out of the slimming world book the odd jacket potato x 1 per week no bread no pasta no rice so I don’t feel it’s completely carby but happy to be told otherwise


My fasting was 9.7 this morning at 10am and I didn’t eat after 5 pm last night
I had roast chicken veg and some cheese afterwards
I didn’t eat until 1pm today checked it before I ate and it was 7.2 so it had come down slightly

I feel my thyroid is not optimal as my symptoms of that seem to be getting worse In my opinion they are trying me on a combination of t3 and t4 which I don’t feel has made a drastic difference so yes very frustrating to the point where I’m 3 years on from that diagnosis and feel worse than I did 3 years ago I’m tired all the time brain fog muscles ache and bloated abs to the point I’m going to see a private gp on Saturday to try NDT do you know anyone else on here who’s takes NDT?

So the consultant has tested me today for LADA but I don’t fit the bill for that as I’m very overweight and she doesn’t think it’s that but does appreciate my numbers are going up she has tested GAD and insulin antibodies plus hba1c too

She’s wants to up my dose of metformin to 2000 mg per day or try me on Gliclazide which I’m not sure I agree with as I think I’m already insulin resistant having PCOS which is why I cannot loose weight

I did discuss victoza but was told no as I don’t currently fit the criteria with my hba1c which is frustrating as I was told my a private consultant I could go on that for weight loss

Very mixed messages and very confused on how to make myself feel better x

 

[DCUKMod]

Hi all thanks for the responses

Jo - yes I do take them at other times during the day I usually aim for 3 a day and all of them are going up but then randomly I will get the odd reading at around 5.4 too so they are sometimes normal level but looking back have definitely increased against eating the same type of food

So typical day coffee with cream
Or full fat Greek yog berries the odd day maybe bran flakes but not everyday

Cheese and ham omelette maybe a few nuts and dark chocolate for a snack or salmon fillet tuna etc for lunch probably with a few cherry tomatoes

Meat or Fish with veg for dinner
Sometimes homemade chilli and curries out of the slimming world book the odd jacket potato x 1 per week no bread no pasta no rice so I don’t feel it’s completely carby but happy to be told otherwise


My fasting was 9.7 this morning at 10am and I didn’t eat after 5 pm last night
I had roast chicken veg and some cheese afterwards
I didn’t eat until 1pm today checked it before I ate and it was 7.2 so it had come down slightly

I feel my thyroid is not optimal as my symptoms of that seem to be getting worse In my opinion they are trying me on a combination of t3 and t4 which I don’t feel has made a drastic difference so yes very frustrating to the point where I’m 3 years on from that diagnosis and feel worse than I did 3 years ago I’m tired all the time brain fog muscles ache and bloated abs to the point I’m going to see a private gp on Saturday to try NDT do you know anyone else on here who’s takes NDT?

So the consultant has tested me today for LADA but I don’t fit the bill for that as I’m very overweight and she doesn’t think it’s that but does appreciate my numbers are going up she has tested GAD and insulin antibodies plus hba1c too

She’s wants to up my dose of metformin to 2000 mg per day or try me on Gliclazide which I’m not sure I agree with as I think I’m already insulin resistant having PCOS which is why I cannot loose weight

I did discuss victoza but was told no as I don’t currently fit the criteria with my hba1c which is frustrating as I was told my a private consultant I could go on that for weight loss

Very mixed messages and very confused on how to make myself feel better x

On your combination T4/T3 therapy, what are your test results like?

I know from personal experience, more often that we'd like it takes a looong time to get the thyroid hormones balanced out. I'm also in combined therapy, and am getting on well with it, but some people do better on T3 as a monotherapy.

Whilst "we" were going through the hoops, titrating my T4 up, I have to say, I bought some NDT - just in case I couldn't find a sweetish spot. In the end, I didn't have to take it, as my Endo agreed to trial me on T3.

I'm sure you appreciate the nuances between the treatment options, but it always struck me it would likely be trickier to get NDT doses right, with the fixed proportions.

In terms of your question of other people taking NDT, I can't think of anyone on this forum, off the top of my head, but if you aren't already, you might care to have a look at this forum: https://healthunlocked.com/thyroiduk I learned massive amounts from the members over there.

 

[KB1978]

Hi DCUKMod

thank you I am on thyroid uk on healthunlocked it’s very informative and I’ve learnt a lot from it in relation to levels testing etc however I do think I am in the minority on there for having PCOS diabetes and UAT combined as I’ve asked a few questions but not really spoke to many people who have all 3


So my last tests - tsh is always and has always been below reference usually sits at 0.02 to be fair my endo ignores that

T3 was 5.4 (2.9-7-8) so about 55% through range

T4 was 16.4 (9-26) again around 50%

This was on 125 levo and 20 t3

I am wondering if my levo has now been dropped too much down to 75 but he’s increased my t3 to 30, 10x3 a day

I’ve been on dual therapy now since March and I don’t think it’s made a massive amount of difference so I’m going to bite the bullet and try NDT just to see if it does

If not then I’ve probably not lost anything but it’s my last hope!

 

[DCUKMod]

Hi DCUKMod

thank you I am on thyroid uk on healthunlocked it’s very informative and I’ve learnt a lot from it in relation to levels testing etc however I do think I am in the minority on there for having PCOS diabetes and UAT combined as I’ve asked a few questions but not really spoke to many people who have all 3


So my last tests - tsh is always and has always been below reference usually sits at 0.02 to be fair my endo ignores that

T3 was 5.4 (2.9-7-8) so about 55% through range

T4 was 16.4 (9-26) again around 50%

This was on 125 levo and 20 t3

I am wondering if my levo has now been dropped too much down to 75 but he’s increased my t3 to 30, 10x3 a day

I’ve been on dual therapy now since March and I don’t think it’s made a massive amount of difference so I’m going to bite the bullet and try NDT just to see if it does

If not then I’ve probably not lost anything but it’s my last hope!

How long have you been on the increased T3, and is the increased T3 reflected in your T3 score above? If not, I would suggest you consider waiting to have a test taking into account the T3 titration, or there us a risk you are throwing the baby with the bathwater. 20-30mcgr T3 is quite a hefty increase.

From the outset (ignoring my creeping up to my dose at the outset), I have always been on 40mcgr per day. Thus far, that's 14 months. My T4 was reduced from 150 to 100mcgr when I started T3, and just, in the last week or so my Endo agreed I should try 125mcgr.

My numbers have never, ever been as good as yours. My last set were:

TSH - 0.090
FT4 - 10
T3 - 4

Prior to starting on T3, my FT4 was about 16.4, and my T3 2.5.

To be honest, I don't worry about whether people have x, y or z condition, as each one of us is individual. I don't fit "typical" for anything, and I mean anything, so I just look to educate myself on my own personal jigsaw.

 

[KB1978]

So I have been on the increased 30 t3 for just over 3 weeks but was feeling like this before the dose was increased have been on t3 since June

something def happened at the beginning of this year to make it all go to
Pot I’ve never completely felt right but better than I do now and since April had terrible bloating cannot get my wedding rings to fit , my fingers are puffy I’m chronically tired my face is puffy I had something stuck in my throat feeling shivery but also sweating and gained a further stone and half and my hba1c crept up from normal to prediabetic so I suspect an autoimmune attack on my already failing thyroid happened which seems to have thrown everything out


I haven’t had any tests done yet since the increase no

I don’t feel like I fit the typical thyroid either my symptoms were more overactive when I was first diagnosed

 

[DCUKMod]

So I have been on the increased 30 t3 for just over 3 weeks but was feeling like this before the dose was increased have been on t3 since June

something def happened at the beginning of this year to make it all go to
Pot I’ve never completely felt right but better than I do now and since April had terrible bloating cannot get my wedding rings to fit , my fingers are puffy I’m chronically tired my face is puffy I had something stuck in my throat feeling shivery but also sweating and gained a further stone and half and my hba1c crept up from normal to prediabetic so I suspect an autoimmune attack on my already failing thyroid happened which seems to have thrown everything out


I haven’t had any tests done yet since the increase no

I don’t feel like I fit the typical thyroid either my symptoms were more overactive when I was first diagnosed

I'd honestly give the T3 increase a bit longer, then test. If your GP won't do it, you can use somewhere like MonitorMyHealth - £29 for TSH, FT4, T3. There's also a Thyroid UK 10% discount code, but don't have that to hand.

What makes you feel NDT will help you better than other treatments?

 

[KB1978]

I just feel I’ve tried for 3 years which I know probably isn’t that long but I’ve got worse I’ve gained 4.5 stone which I contribute mainly to my thyroid over that time and I feel it’s a driving factor in me becoming diabetic too plus the PCOS I feel all three conditions are just competing against each other and I don’t feel like I can do anything that I used to do I’m 42 I used to be active travel all over the uk with my Job involved in the theatre on stage and now I don’t do anything as I don’t have the energy it wipes me out just taking my mum food shopping!

I also have a mutant dio2 gene so I don’t convert t4/t3 very well which I’m sure you probably have the same as I know that’s one of the main reasons people cannot convert

I don’t really feel any different since starting t3 in June and I desperately want my life back and to be fair my results show I’m optimal when I don’t feel it so I tend to go on how I feel rather than my results

I will see what these results say that I’ve had done today if I do have LADA or not and what the consultant recommends as there was mention of upping the metformin and also putting me on another drug which I’m not sure I really want to go down that route just yet

I suppose a lot of people do seem to do well on NDT and anything is better than how I feel now even if that means I have to pay

I sounds desperate I know but I really am !

Really appreciate your thoughts thank you

 

[DCUKMod]

I just feel I’ve tried for 3 years which I know probably isn’t that long but I’ve got worse I’ve gained 4.5 stone which I contribute mainly to my thyroid over that time and I feel it’s a driving factor in me becoming diabetic too plus the PCOS I feel all three conditions are just competing against each other and I don’t feel like I can do anything that I used to do I’m 42 I used to be active travel all over the uk with my Job involved in the theatre on stage and now I don’t do anything as I don’t have the energy it wipes me out just taking my mum food shopping!

I also have a mutant dio2 gene so I don’t convert t4/t3 very well which I’m sure you probably have the same as I know that’s one of the main reasons people cannot convert

I don’t really feel any different since starting t3 in June and I desperately want my life back and to be fair my results show I’m optimal when I don’t feel it so I tend to go on how I feel rather than my results

I will see what these results say that I’ve had done today if I do have LADA or not and what the consultant recommends as there was mention of upping the metformin and also putting me on another drug which I’m not sure I really want to go down that route just yet

I suppose a lot of people do seem to do well on NDT and anything is better than how I feel now even if that means I have to pay

I sounds desperate I know but I really am !

Really appreciate your thoughts thank you

It took me over 2 years to achieve a diagnosis, and then my GP insisted, on the basis my TSH was "only" 5.8, I start on 25mcgr Levothyroxine. Can you imagine how long it took to get to 150mcgr, when every titration I had to agrue against titrating at 12.5mcgr? To be fair, I won all of those tussles.

Anyway, my selfish rant over, going back to you.

I don't think your T2, PCOS and Hypothyroidism are competing against one another. I think as endocrine/metabolic conditions, they are all part of your hormonal imbalances.

If you have had to the dio2 gene testing, then my logic would question why you think taking NDT - which is mainly T4 will help you. If you don't convert, surely you could just be pumping in a different form of something your body struggles to work with? My logic would be that you could need to concentrate on titrating your T3 - and you are already making strides to go from 30-30mcgr.

Personally, in your shoes, I would be sticking with the Endo for now. At least he appears open to titrating your dosage. To achieve similar levels of hormone on NDT, you would need to be on c3grains (based upon an average of 38mcg of T4 and 9mcg of T3, per grain). On 3 grains, that puts your T4 dose back to 114mcgr. But, if you are identifying that 30mcgr T3 isn't working for you, if you have to increase from 3 grains of NDT, it automatically increases your T4 intake, which you consider your body struggles to do much with.

I hear your frustration loud and clear, but it was a variation on the logic above that drove me not to start on NDT when I had it. It sat in a drawer for over a year; taunting me as I still went along titrating at a snail's pace, still frozen to the core.

Trust me, I'm no expert, but I do try to take a logical approach to things, even when every fibre of my body wants me to do something.

I wish you well, however you decide to tackle your puzzle.

If I can be of any help, please let me know. Hormonal imbalances are vile, and as we both know, in our albeit differing ways, how utterly miserable they can be.

 

[KB1978]

Thank you you’ve been so helpful I will still go and see her because I want to see if I can go onto Saxenda and clearly the hospital and GPs don’t want to put me on it but I’m desperate to try and loose some weight and want to see if that will help me it also gives me ammunition to go back and say I want it on the nhs if it does work..

I will def consider all what we have said about NDT and see if I can keep working on the t3 I have read a few people on thyroid health unlocked are on just t3 only which was something I was considering mentioning to the endo too...

Really appreciate chatting to you and likewise I can be of any help please let me know too x

 

[DCUKMod]

Thank you you’ve been so helpful I will still go and see her because I want to see if I can go onto Saxenda and clearly the hospital and GPs don’t want to put me on it but I’m desperate to try and loose some weight and want to see if that will help me it also gives me ammunition to go back and say I want it on the nhs if it does work.

I will def consider all what we have said about NDT and see if I can keep working on the t3 I have read a few people on thyroid health unlocked are on just t3 only which was something I was considering mentioning to the endo too...

Really appreciate chatting to you and likewise I can be of any help please let me know too x

I haven't had the gene test done, but have it "in my back pocket" should my NHS T3 support ever be challenged, although the Endo I see agrees, I seem to be pretty rubbish converting T4>T3. Of course, why that makes increasing my T4 from 100mcgr to 125 mcgr sensible could be considered questionable, but for now, I can go with it, and adds to recoded experience if I don't manage any marginal gains.

I feel so much better since the T3 was added, and I feel guilty (in that crazy stupid way, because of course we are all so different), but am unconvinced I'm in my sweet spot, hence my working with him to get any marginal gains - without the costs going up too much.

I don't have a combative relationship with the Endo, but I do challenge his statements and arguments, to the extent the appointment where I (eventually) started my trial of T3 lasted 1hr 20min. I have to say I felt very guilty about his next patient, but that was my valuable appointment and I wasn't going to be fobbed off, or stalled any further by flaky arguments.

He did say at my recent review that appointments with me were a bit of a workout for him. I wore that badge with pride.

I really do wish you well. Feeling rubbish for a long time is so awful, when all you want to do is feel normal. Superhuman can wait a bit longer?

Stay in touch, and let us all know how Saturday goes.

 

[KB1978]

I had to pay for the gene test but it was worth it to understand what’s happening

Good for you and yes I stand my ground too if I hadn’t of pushed the gp to refer me I wouldn’t be in this position

I even have a direct email to my thyroid endo it’s quite frustrating though that I’m seeing someone different for PCOS in my opinion it needs to holistic approach that manages all 3 conditions

One point I did read is that t3 can increase your blood sugars do you think it’s possibly why mine have gone up? I tested this morning at 10am and they were 9.1

I only had homemade chilli for lunch and roast lamb and veg with a little bit of mint sauce for dinner I am concerned that they seem to be going up quite a lot over the past few weeks? Has this been an issue for you on t3?

 

[DCUKMod]

I had to pay for the gene test but it was worth it to understand what’s happening

Good for you and yes I stand my ground too if I hadn’t of pushed the gp to refer me I wouldn’t be in this position

I even have a direct email to my thyroid endo it’s quite frustrating though that I’m seeing someone different for PCOS in my opinion it needs to holistic approach that manages all 3 conditions

One point I did read is that t3 can increase your blood sugars do you think it’s possibly why mine have gone up? I tested this morning at 10am and they were 9.1

I only had homemade chilli for lunch and roast lamb and veg with a little bit of mint sauce for dinner I am concerned that they seem to be going up quite a lot over the past few weeks? Has this been an issue for you on t3?

My bloods sugars have been rock solid through the whole thing. My last few A1cs, both shortly before starting T3 and since have all skirted T3, but like all things hormonal, it could be individual.

In terms of your numbers rising, is there any correlation between your sugars rising, and perhaps new boxes or a new batch of strips? I know several years ago, I had a period of total blood sugars being bonkers, which related to a batch of strips that were somewhat,... erm,......... erratic.

 

[KB1978]

Not that I am aware it’s the same batch