increase in BS

[licklemoose]

Had bloods done last week as changed my thyroid medication to NDT and T3 combo (buying my own as levo thyroxine is not helping at all)
HBA1C Haemoglobin A1c level - IFCC standardised 36 mmol/mol [26 - 41]
ferritin came back low (Serum ferritin level 25 ng/ml [30 - 300)
no further action required on ferritin
im now taking ferrous fumerate twice a day
ive noticed my BS have been slightly higher than normal too, was having the odd lows of high 3 low 4
went to urgent care last night as feel weak, ache all over and very short of breath, was told it was due to low ferritin, can that also effect BS levels?

 

[DCUKMod]

Had bloods done last week as changed my thyroid medication to NDT and T3 combo (buying my own as levo thyroxine is not helping at all)
HBA1C Haemoglobin A1c level - IFCC standardised 36 mmol/mol [26 - 41]
ferritin came back low (Serum ferritin level 25 ng/ml [30 - 300)
no further action required on ferritin
im now taking ferrous fumerate twice a day
ive noticed my BS have been slightly higher than normal too, was having the odd lows of high 3 low 4
went to urgent care last night as feel weak, ache all over and very short of breath, was told it was due to low ferritin, can that also effect BS levels?

Hi there licklemoose - Those feelings could be due to a number of things. How long have you been on the NDT/T3 combo, and when did you last titrate?

It is try that low ferritin could increase blood sugars a bit.

 

[licklemoose]

Hi there licklemoose - Those feelings could be due to a number of things. How long have you been on the NDT/T3 combo, and when did you last titrate?

It is try that low ferritin could increase blood sugars a bit.

been on the combo 7 weeks, last increase was about 8 days ago
i take 6am 12.5 mcg T3 and 1/2 NDT
2pm 12.5 mcg T3
6pm 6.25 T3 and 1/2 NDT
(my GP knows and is supporting me)
was feeling ok until maybe a week and half ago when noticed the fatigue, aches and shortness of breath getting worse

 

[DCUKMod]

been on the combo 7 weeks, last increase was about 8 days ago
i take 6am 12.5 mcg T3 and 1/2 NDT
2pm 12.5 mcg T3
6pm 6.25 T3 and 1/2 NDT
(my GP knows and is supporting me)
was feeling ok until maybe a week and half ago when noticed the fatigue, aches and shortness of breath getting worse

How often and how much are you titrating? T3 is way more powerful, in terms of the body's immediate response to it than the T4 in Levothyroxine.

When you say your GP is supporting you, does he understand thyroid, or is his support really in terms of regular testing as you titrate?

 

[DCUKMod]

@licklemoose - If the symptoms started about a week and a half ago, then you titrated, then they're getting worse, have you considered the potential your body is taking longer to get used to the T3 additions this time around?

I'm not a Doc, or advising you to do anything. I'm just floating ideas from various "stuff" I've picked up along my own thyroid "adventure".

 

[licklemoose]

How often and how much are you titrating? T3 is way more powerful, in terms of the body's immediate response to it than the T4 in Levothyroxine.

When you say your GP is supporting you, does he understand thyroid, or is his support really in terms of regular testing as you titrate?

i increase when i feel they thyroid symptoms coming back, but now im thing of dropping the 6.25 in the morning (that was last increase) and ssee how i go while trying to raise ferritin levels
ive done the T3 NDT combo before and was on a much higher dose
dr does know a fair bit thyroid wise but cannot understand my situation as when i was on thyroxine i couldnt go any higher than150mcg due to getting the shakes and racing heart, so hes supporting my choice to self medicate as long as i go for regular blood tests and keep eye on heart rate
i was on t3 alone at one point 62.5mcg daily and feeling fab until the prescription was stopped due to costs
i cant do just NDT as have adrenal problems so if i take more than maybe 1 1/2 grains my heart will go super fast

 

[licklemoose]

@licklemoose - If the symptoms started about a week and a half ago, then you titrated, then they're getting worse, have you considered the potential your body is taking longer to get used to the T3 additions this time around?

I'm not a Doc, or advising you to do anything. I'm just floating ideas from various "stuff" I've picked up along my own thyroid "adventure".

you read my mind, ive thought of dropping the last increase while i treat the low ferritin

 

[DCUKMod]

i increase when i feel they thyroid symptoms coming back, but now im thing of dropping the 6.25 in the morning (that was last increase) and ssee how i go while trying to raise ferritin levels
ive done the T3 NDT combo before and was on a much higher dose
dr does know a fair bit thyroid wise but cannot understand my situation as when i was on thyroxine i couldnt go any higher than150mcg due to getting the shakes and racing heart, so hes supporting my choice to self medicate as long as i go for regular blood tests and keep eye on heart rate
i was on t3 alone at one point 62.5mcg daily and feeling fab until the prescription was stopped due to costs
i cant do just NDT as have adrenal problems so if i take more than maybe 1 1/2 grains my heart will go super fast

I have to say, in your circumstances I'd roll the last titration back and see if things ease at all. Are you saying you doubled your T3 dose all at once?

On the T4 were your FT4 levels high, but you weren't converting well? What did you last T3 come back at (assuming that was done in your last batch of bloods?

In the batch of bloods demonstrating the low ferretin were your folate, Vits D and 12 tested too? As I'm sure you probably know, all those vits need to be in a good place in order for your thyroid to perform well (with or without pharmaceutical support).

 

[licklemoose]

I have to say, in your circumstances I'd roll the last titration back and see if things ease at all. Are you saying you doubled your T3 dose all at once?

On the T4 were your FT4 levels high, but you weren't converting well? What did you last T3 come back at (assuming that was done in your last batch of bloods?

In the batch of bloods demonstrating the low ferretin were your folate, Vits D and 12 tested too? As I'm sure you probably know, all those vits need to be in a good place in order for your thyroid to perform well (with or without pharmaceutical support).

i dropped the 6.25mcg this morning so only took 1/2 NDT and 6.25 T3, i only increased by 5mcg a time
T4 was never checked, T3 never got checked, B12 rarely checked but i do take daily b complex and b12, folate wasnt checked although i asked, vit d never gets tested (i requested all at last weeks bloods
for some reason this time they checked FT3 because it was stated i was taking T3 Serum free triiodothyronine level 5.3 pmol/L [3.7 - 7]
this blood test was done at just over 6 weeks of self medicating
since diagnoses i have never ever done well on thyroxine, i was in A/E many times a months and at the drs 3 times a week, racing heart ect and all tests were fine
after suffering a long time i did NDT and managed to get it prescribed and did great for 8 months, was on 2 1/2 grains then one day my heart rate went to 150 + and all tests in A/E were fine, i then did a saliva cortisol test that came back very high, dr said possible stress (lots of stress in my life)
then got my own T3 and was on 62.5 mvg daily doing fab (about a year later i did another saliva test again came back high, endo tested for cushings and was all good so agreed it was stress, i stopped T3 and started the combo of NDT and T3 only 1 grain NDT increasing with T3 (stops adrenal problems showing) then i had to go back on thyroxine so had liquid all went well until endo demanded i went back on thyroxin, i requested eltroxin as people did well on that but i was still feeling lousy, ive asked dr for tirosint, T3 or NDT and he came back to me and told me it costs too much so here i am buying my own

 

[DCUKMod]

i dropped the 6.25mcg this morning so only took 1/2 NDT and 6.25 T3, i only increased by 5mcg a time
T4 was never checked, T3 never got checked, B12 rarely checked but i do take daily b complex and b12, folate wasnt checked although i asked, vit d never gets tested (i requested all at last weeks bloods
for some reason this time they checked FT3 because it was stated i was taking T3 Serum free triiodothyronine level 5.3 pmol/L [3.7 - 7]
this blood test was done at just over 6 weeks of self medicating
since diagnoses i have never ever done well on thyroxine, i was in A/E many times a months and at the drs 3 times a week, racing heart ect and all tests were fine
after suffering a long time i did NDT and managed to get it prescribed and did great for 8 months, was on 2 1/2 grains then one day my heart rate went to 150 + and all tests in A/E were fine, i then did a saliva cortisol test that came back very high, dr said possible stress (lots of stress in my life)
then got my own T3 and was on 62.5 mvg daily doing fab (about a year later i did another saliva test again came back high, endo tested for cushings and was all good so agreed it was stress, i stopped T3 and started the combo of NDT and T3 only 1 grain NDT increasing with T3 (stops adrenal problems showing) then i had to go back on thyroxine so had liquid all went well until endo demanded i went back on thyroxin, i requested eltroxin as people did well on that but i was still feeling lousy, ive asked dr for tirosint, T3 or NDT and he came back to me and told me it costs too much so here i am buying my own

If your GP is poor in terms of the bloods he (or the lab) will do, do you have private tests done alongside? I found the only time my T3 was tested on the NHS, without my GP writing in large capital letters on the blood forms was when my TSH became suppressed to 0.05.

Medichecks have a 20% off sale until the end of May. The tests can be used up to 6 months from the date of purchase. I have no relationship with Medichecks, except as a customer.

You've had quite a journey getting to where you are, with a shed load of changes. What is the time span of all these treatments and changes aroud the NDT and T3? I don't know when your T3 was 5.3, but that's not too bad, at mid range.

But, I tend to agree with your thinking to take the T3 back to a level where there was a period of stability and see how that goes for a few weeks. That's certainly what I would do. I'm sure I'd be reluctant, but it's what I'd do myself.

Thing is, those symptoms could be a number of things, but I'm sure you know that already..

It's so frustrating it's all so personal in terms of optimum levels.

 

[licklemoose]

If your GP is poor in terms of the bloods he (or the lab) will do, do you have private tests done alongside? I found the only time my T3 was tested on the NHS, without my GP writing in large capital letters on the blood forms was when my TSH became suppressed to 0.05.

Medichecks have a 20% off sale until the end of May. The tests can be used up to 6 months from the date of purchase. I have no relationship with Medichecks, except as a customer.

You've had quite a journey getting to where you are, with a shed load of changes. What is the time span of all these treatments and changes aroud the NDT and T3? I don't know when your T3 was 5.3, but that's not too bad, at mid range.

But, I tend to agree with your thinking to take the T3 back to a level where there was a period of stability and see how that goes for a few weeks. That's certainly what I would do. I'm sure I'd be reluctant, but it's what I'd do myself.

Thing is, those symptoms could be a number of things, but I'm sure you know that already..

It's so frustrating it's all so personal in terms of optimum levels.

at the moment i cannot afford private tests but will have to look into them
all these swaps and changes have been over the last 6 years
the T3 was tested 7 weeks ago
Serum TSH level 1.28 U/mL [0.38 - 5.33],
3 months ago it was 7.67, normally for me is anywhere between 5 and 21
my dose now will be 1/2 ndt 6.25mcg t3 (was 12.5) (6am)
iron ect (10am)
12.5 t3 (2pm)
1/2 ndt and 6.25 t3 (5pm)
iron (9pm)
4 hour gap needed between iron and thyroid meds, so alarms on phone
i will stay at that dose until my iron starts showing signs of improvement