the GP said he'd called the endo and that they agreed my fT3 was low because it will vary according as to when I take it . (They haven't asked when I did take it!)
They said the fT4 was fine because they won't monitor it as I am taking T3 and don't convert T4 (My husband and I had suggested to the endo this is one possibility as to why I do badly on Levo)
And as the TSH was in line I'm fine- so why am I sooo exhausted then - oh that's something else probably the ME / CFS ha ha
of course - I have Hashimoto's with TPO antibodies measure at 600+ in 2007 and then @ 900+ in 2011 - reference "below 50"
Struggling at the moment from head down is
; Thinking at times couldn't double "10 " and used to teach maths, word recall, processing, decision making, and LOW MOOD ( in waves)
: gritty eyes especially in the night
: tinnitus right ear
severe neck shoulder pain even though I am seeing a private physio wabout every 10 days too poorly to drive that this week.
; Exhaustion again unpredictable so stamina is a real problem - I can start things and then have to stop as thinking and physical stamina run out - need ing daytime naps and sleepy evevings back again
: constipation
: Very variable blood pressure ( adrenal) falling on standing today with crazy fast pulse rates
e.g
108 / 85 pulse rate 101 sitting 110/79 pulse rate 111 at 8:15am 2 hours after T3 dose 31.25 and when I got up.
114 /86 pulse 117 sitting and 110/78 pulse 123 standing at 14:30pm 2 hours after taking second dose T3 12.5 and after a nap!
Then 150/88 pulse rate 98 sitting and 116/84 pulse rate 107 standing at 17:00pm after looking after an active 7 year old for 2 hours.
The NAX and NA are there as I have had adrenal fatigue and exhaustion in the past - I had a kidney removed in 1995
Dec 2009
Cortisol DHEA
12.3 (r12 -22) 0.16 r0.2 -0.7
1.7 (r5.0 – 9.0) 0.9 (r0.6 -3.0)
2.5 (r3.0 -7.0 )
0.8 (r1.0 -3.0)
17.3(r21 -41)
Dec 2012
Cortisol DHEA
19.1 (r12 -22) 0.20 r0.2 -0.7
4.6 (r5.0 – 9.0) 0.12 (r0.6 -3.0)
4.5 (r3.0 -7.0 )
1.1 (r1.0 -3.0)
29.3 (r21 -41)
I feel better taking NAX and NA and have gradually increased again to Nutri Adrenal Extra x 1 daily and Nutri Adrenal x 4 daily
It seems as though I can never get the thyroid hormones high enough as the adrenal system fails> NHS says adrenals are fine as the Synacthen test result in Jan 2009 was NORMAL!?!??! ( No wonder we had driven through a maze of frozen village roads to get to the early appointment and I had to be thawed out with hot water bottles for them to find a vein and then my adrenals responded to ACTH how surprising!!!)
Adrenals need to be good to take T4, never mind T3 and you've just got the one left to handle that. Maybe ask for another test -as last one was under stress?
What are the cortisol units , are they 6 hourly - and is the last reading the DHEA?
Easy to take care of the slow elim with something like Laxido- you don't have to go mad with it.
Plus, do you need more water? We tend to neglect this and can be dehydrated without knowing it!
Not able to make sense of all the figures right now, as late- but you certainly have a good grip on the essentials and I hope you get more comment.
Your BP shows a low differential which is why you are ruinning out of steam so much. Hopefully, not on Beta Blockers...
Sorry you have such a handful of stuff to deal with right now, it looks tough!
PS: I meant to ask if anyones suggested adding T4 to your T3 to help stabilise things.
I was started on 100mcg Levo straight off at the end of 2007 really bad news by the start of 2009 I was really poorly - thank goodness I found Dr BDP through a work colleague.
Cortisol units are nmol/L andand timings as follows - sorry site seems to lose formatting when I post.
Dec 2009
CORTISOL
1. postawakening 12.3 (r12 -22)
2. + 4-5 hours1.7 (r5.0 – 9.0)
3. + 4-5 hours2.5 (r3.0 -7.0 )
4. prior to sleep 0.8 (r1.0 -3.0)
TOTAL17.3(r21 -41)
DHEA
MEAN 0.16 r0.2 -0.7
RATIO 0.9 (r0.6 -3.0)
Dec 2012
CORTISOL
1. postawakening 19.1 (r12 -22)
2. + 4-5 hours4.6 (r5.0 – 9.0)
3. + 4-54.5 (r3.0 -7.0 )
4. prior to sleep1.1 (r1.0 -3.0)
TOTAL 29.3 (r21 -41)
DHEA
MEAN 0.20 r0.2 -0.7
RATIO 0.12 (r0.6 -3.0)
Slow elim thanks for the tip will try it out- senna can be helpful at times.
I try to keep hydrated but in this weather always a good point especially with kidney situation - will get bottle ready for the day! not plastic!
"low differential for BP" do you mean the change from sitting to standing ? mmm that's why I've been upping the NA - is that right? I'm not on beta blockers asthe GP just thinks I have low BP. Would they recommend beta blockers If I let them know the pulse rate - think I'll keep quiet then?
NHS say that they left in the right adrenal gland when removing the kidney but Dr BDP says HAHA - I had a severe infection after the op which may have caused further damage and how does an adrenal gland work properly without a kidney next to it?
T4 /T3 combo - I have tried this under endo supervision through 2012 eventually we convinced her that T4 was doing me no good at all and it was then agreed I could have 30mcg lio daily: however now my ferritin is higher I wonder whether I could tolerate it or is it time to take the plunge and order some NDT?
PS my Vit D has fallen since last year despite supplements fultium 800 so now at 62nmol/L down from 88 (range greater than 50) and yet the endo prescribed fultium when my level was 88?
No, the diff I was noting was between systolic and diastolic reads. Would leave you feeling like no fuel in the tank. The high diastolic could be circulation based and needs looking at, but you have enough on already with adrenals.
Basically, you need some TLC on the medical front and things unravelled to get optimum in all depts.
Could be with vits D and b12 better [+Iron?] T4 adding again would help.
I think with your history- work the system some more, rather than 'go alone' would be best.
BetaBs would bring down PR but you wouldn't feel good- as you suspect. I'm glad to be off them , anyway.
Thanks for this - I hadn't thought of looking at BP like that - Duh - I am due to collect my T3 from NHS today so I could ask the pharmacist if there's not too long a queue - re BP - Had been adding in NT as a light touch trial of T4 still thinking .
I know Dr BDP isn't a fan of beta blockers - and remember you posting a while back that you are better without them - what were the main issues?
As you say, the T3 will vary depending on when you take it, so GP should not monitor you by blood tests, but on symptoms . Unfortunately doctors dont seem to do it that way
Hi, how did you raise your morning cortisol from 12.3 in Dec 2009 to 19.1 in Dec 2012? What had you done differently? Was it the NAX or NA by any chance?
Hi Charlie truth is I had changed a number of things in between so wont ever be sure - three years is a long time to trial different approaches.
The NAX and NA seem to play a part, although I had started them about 9 months before the first blood test - I am no longer working on permanent contracts so daily stress reduced just swapped for financial uncertainty but then all finance is uncertain isn't it - I have Levo dropped completely and T3 seems to suit me much better although I haven't trialled NDT - ferritin is up and Vit D is better.
I think there are lots of pieces to this puzzle but with each extra one in place it helps to see the bigger picture.
Have you looked at Paul Robinson's website and book called 'Living with T3?
His doctor gave up on blood tests for his thyroid including the Ft3 as this was so variable it was not reliant. In the end they went on his signs and symptoms.....
He also recommended that CT3M (circadian rhythm and T3 method ) as a way of supporting your adrenals. This is based on the fact that your adrenals work hard in the early hours so normally your thyroid would have a sudden surge of T4/T3 to help your adrenals function well -his method is potent so if you decide to follow up using this method do it slowly and carefully. I suspect that is why people often feel better for taking a bedtime dose of thyroid meds. I take a small dose at bedtime and wake to take a much larger dose at a set time in the early hours -I have not needed to take Nutri Adrenal Extra to support my adrenals now for well over a year.
Many thanks fore posting and for taking time to think about my post from 10 months ago and wow now I can see where I was then, can't believe my progress -this is my recent post link
The Sanofi Aventis cynomel is sooooo much better for me and my GP is happy to prescribe on a named patient basis - I think I am allergic to the packing agents> PR's method has been helpful too and I am now cutting my T3 - down to 25mcg for the last 6 weeks and FINE!
I am due to go to London from Somerset on Friday to allergyshow.co.uk/ ( free tickets online) and am then driving to Manchester next week to see an elderly Aunt for her birthday - 10 months ago I could hardly drive around the corner.
I think I'll always need NA due to being on one kidney post surgery but that's no problem.
Don't be sorry at all! It's great you were trying to help - just hope my posts can help someone else out there too. YOu have made me look back at records and I was struggling on 40mcg lio this time last year - amazing isn't it. Izabella Wentz Hashimotos Root Cause helped me to change perspective to focus on "autoimmune" factors and this seems to really work for me. Son and husbands side niece are coeliac, daughter has PCOS and niece and nephews on my side carry epipens, inhalers etc for allergies - all seems to slot into place - no doubt there are some lost puzzle pieces to find but can see the picture HURRAH - good I don't hoover under rugs or my sofa - they might be there
Thanks Clutter -Louise Warvill had the same thing happen to her......am glad Sarah is much better -think Health Unlock must have clitche in their system.....lol
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