Lastest results- How curious!

[RickGrimes]

I wonder if any of you wise people might have thoughts on my latest results at 11 weeks post dose increase to 100mcg. All values have actually reduced from my previous test at 6 weeks post dose increase.

Ferritin, folate, vit D, B12, T4 and T3 are all lower. And my T3 is even lower than it was when I tested on 75mcg, yet I feel improved since then.

Same conditions for the latest two sets of results, stopping B12, taken at same time in the morning etc. Gluten free both times.

My Thyroglobulin ABs now showing in normal range.

Fascinating.

I actually feel grately improved since I tested 5 weeks ago and have started a phased return to work. I'd say I have continued to make very gradual improvements each week or so. Why are my bloods 'worse' although obviously still pretty good?

Could it be because I'm more active?

Perhaps I tested too early at 6 weeks post dose increase and this recent test at 11 weeks post dose increase shows levels stabilising?

I'm actually feeling kind of excited as I'm wondering if I could potentially increase my dose again ( probably without mentioning to GP). And therefore regain even more of my health? I'm feeling so much better but clearly not 100%. I'm still having to pace myself , building in rests through the day, being very careful not to overdo things. And I still crash every so often although I seem to recover more quickly than in the past. I certainly don't feel able return to the office with full days and commuting etc (WFH currently) as I am at the moment so the prospect of improving more with an increase is hugely tempting.

It would be so interesting to hear what others think.

Thank you!!!

[RickGrimes]

The sensible plan would be to test again before any increase I know. But I can't help feeling hopeful 😀

[tattybogle]

"If it ain't broke..."

As you've discovered changes happen slowly.

The effect is sometimes a 'slow gain'.

Test results don't always mean in practice what you'd logically expect them to in theory.

If it was me ,i'd keep things the same in the dose department ,and keep building activity in balance with feelings of wellbeing , for a while longer, before rocking the boat.

Slowly , slowly , catchee monkey.

[RickGrimes in reply to tattybogle]

Absolutely. The improvements have been so gradual and the way things are going I happily anticipate more to come. No health professional has ever explained this to me though. It's all "I'd expect you to feel better by now" and "most people feel better within weeks on starting Levo"

Oh yes I don't want to rock this boat at all, but it has given me a bit of hope. And we all need that.

[tattybogle in reply to RickGrimes]

now that i know better~ from finding 'other thyroid patients' on here ....it makes me laugh when hear "that's unusual , i've never heard 'that' before , most thyroid patients ... da,da,da " from a doctor , ( or a chemist .... or the receptionist !)

I think i've now solved the mystery.... it's NOT that there is anything unusual about my reaction to thyroid disease, or treatment, or blood results that sometimes defy logic , and i haven't lost my grip on reality,

No . the reason they've never heard 'that' before .... is because they don't bloody listen when you tell them

[RickGrimes in reply to tattybogle]

Ha. That made me laugh. You are right though it makes you feel like you've lost your grip on reality. My most recent example was the Occupational Health doctor. My heart sank when he introduced himself as a GP part time. It made me feel like I was fraud and trying to skive work for longer when in fact I was desperate to return!

[tattybogle in reply to RickGrimes]

Top tip for self help in the face of 'feeling a fraud when talking to GP's' (pinched from Norman Stanley Fletcher.)..

"don't let the ba**ards grind you down "

YOU know the difference between "depressed and don't feel like starting" .... and... "keen to get started , start..., then fall over knackered"

But because they don't have a better explanation, they first think it "must be just you .. are you taking the tablets everyday? Are you depressed/ lazy" which feels the same from where we're standing as "you're a fraud" but all it really proves is

a) they don't listen to all the people saying the same thing ..and

b) they don't really understand how the extremely complex thyroid system really works ,and how it is of course going to function in an individual fashion for different individuals.

[Miffie]

I’d be tempted to leave well enough alone for a bit as thyroid hormones can take considerable time to settle on a given dose.

However I have never needed to rest or avoid overdoing things with levels like yours. I always worked full time in a responsible job, had children, married to a member of HM forces so spent months with no adult help at home. I find your poor health very worrying. Is there another underlying condition or are you quite a bit older? If not perhaps some investigation is needed. Take care.

[tattybogle in reply to Miffie]

However I have never needed to rest or avoid overdoing things with levels like yours. Is there another underlying condition or are you quite a bit older?

It's not unusual Miffie, loads of us on here have these issues with results similar to those, at a relatively young age , and many of us with no other health conditions ... (unless you include the inevitable.." ?Chronic Fatigue Syndrome/similar"... stuck on the bottom of your notes if you fail to get better on Levo)

I was fine before Hypothyroidism got me in my 30's, levo only fixed me to a point, and i've been left with the need to moderate what i do ever since to varying degrees...

Apart from having Autoimmune hypo, i'm in perfect health... except obviously i'm not , cos i'm not back to how was before hypo.

I don't expect to be back to how i was at 32, but i know what other 54 yr old are capable of. and i've always kept myself pretty fit , but despite that i now live like your average 70 yr old, and on a bad day your average 70 yr old can easily overtake me on the walk home. cos i've had to have a lie down on the grass.

[RickGrimes in reply to tattybogle]

😢 I'm sorry you still have to moderate activities tattybogle .

My mother thinks I'm aiming too high to want to be able to do things the average 39 year old can do. But I can't settle for 'good enough' when I know what I should be capable of. Believe me I'm grateful for the level of my recovery as it is now though. Every walk I take is a blessing.

[tattybogle in reply to RickGrimes]

Don't let my example of still having to moderate activities depress you

.. i only stopped believing the doctors opinion that "your thyroid problem is treated now , so if there's anything wrong with you now ,it's nothing to do with thyroid" relatively recently . i'm sure if i'd found my way here when i was 39, i would be telling a much different story by now.

[RickGrimes in reply to tattybogle]

😘

[Miffie in reply to tattybogle]

How awful for you. I am ashamed of having days of feeling sorry for myself when I see how hard your life has been. I had everything, university, teaching, family, travel, fabulous social life especially when my husband was in the forces choosing to move to and enjoy a new career now an good retirement.

I wonder if it’s because I was fortunate enough to have my thyroid destroyed as a baby / toddler?

Whatever the reason my heart goes out to you and everyone else so incapacitated.

Take care

[tattybogle in reply to Miffie]

Aw , thankyou miffe, but really don't feel ashamed , i feel just as bad for whinging when i see people with no legs, or no sight, i'm sure they'd happily swap for mine.

I've had most of the things i wanted, and lots of fun getting paid for playing around in fields, which beats having a proper job, just had to adapt by going to parties with a bed in the back of the van

[RickGrimes in reply to Miffie]

Thank you for for reply. I'm 39, single parent with young children but do have rest days when they are at their Dad's.

I've got saliva samples ready in the freezer to send off for cortisol testing so it will be interesting to see if that shows anything.

I also take sertraline for anxiety but this is will controlled. Other than that I'm healthy.

I'm definitely nowhere near 100% and still have plenty of symptoms. I'm just no longer peeling myself off the sofa to shove chicken nuggets and chips in the oven for my children!

[Miffie in reply to RickGrimes]

How dreadful, I feel almost ashamed to have been so lucky with my life.

It must be heartbreaking to not be able to be part of society. Especially at your age. Although I was menopausal whe your age so wonder if that is contributing even more to you things are for you. On the plus side I found the slightly early menopause vey liberating after many years of painful heavy too frequent periods.

I have just been telling my husband how much suffering there is for some people witn hypothyroidism and he is as shocked as I am that you suffer so. I pray you find some relief at some point and your GP,is supportive of raising your FT4 & FT3 to level where you can function again. Take care.

[RickGrimes]

Test results don't always mean in practice what you'd logically expect them to in theory.

Could my recent test be just a blip I wonder? It seems so odd that everything is lower this time round and T3 gone from 6.05 to 4.23 (3.1-6.8). That seems like such a large drop when nothing material has changed. Only time.

[tattybogle in reply to RickGrimes]

I've had fT4 go up when reduced dose , TSH go up when increased dose , and plenty other things that 'should not be' and several of which could not be explained by 'hashimoto's swings' or time of test /last dose .

I've also seen other examples on here of the same blood draw (x 2 samples) returning differing results from different labs. and bigger differences than should be accounted for by a 'bit of allowable variation in result '.

I've also learnt that TSH and T4 are pulsatile in their release , so as well as the time of day for TSH being a variable , you also have potential different results for TSH and fT4 if the blood was drawn half an hour earlier , or half an hour later........

As a result i now take a long view of trends in results , .... and i take any individual result with a pinch of salt ,and observe how i feel for quite a while, and preferably see if the next result say's a similar thing if i didn't change anything , before taking anything other than passing interest in an individual curious result.

I mean .. when plotting graphs at school.....any two points would appear to be in a straight line , it's only when you add a third point that you know whether you've got a real pattern , and if they are not all 'in a line' , then you still don't know which two are 'in a line' and which one is 'odd'..... you have to add a fourth point before you can be sure that if three are 'in a line' , you actually have 'a line'

And if you followed that , you're doing well cos i've lost myself now....must be time for lunch