Started to feel not so great. Was taking 2 grains of NDT and 25mcg T3( background RAI therapy around 10 yrs ago) I went to the doctors who took bloods. Results as detailed. I am not sure why my results are so low. I have been on the same dosage for a long time- blood results were always good! Has NDT stopped working? Doctor persuaded me to come back to the dark side - levothyroxine .. I’m now on T4 100mcg and T3 which I source to be titrated down soon. Feeling unwell - my body seems so much heavier… Ive messed up… why didn’t I just up my dose of NDT? I have an endo appointment in July … with blood to be taken shortly. I know my endo will be angry with me if f I go back to NDT ans will keep on that my TSH is too low but I’m not feeling good and getting very lethargic…how do we fight the endo…?
I think I’ve messed up! : Started to feel not so... - Thyroid UK
I think I’ve messed up!
I’m now on T4 100mcg and T3 which I source
How long have you been on 100mcg levothyroxine
Which brand is it
Are you splitting your T3 as 2 or 3 smaller doses spread through the day
Test after minimum 6-8 weeks on unchanging dose and brand levothyroxine and T3
Test 8-9am
Day before test …..split T3 as 1/2 tablet waking, 1/4 tablet mid afternoon and last 1/4 tablet T3 Approx 8-12 hours before test
Last dose levothyroxine 24 hours before test
What vitamin supplements are you currently taking
When were vitamin D, folate, ferritin and B12 last tested
Thankyou!
I’m on accord levothyroxine and I don’t split my dose of T3. I currently take no vitamins…Abs can’t remember the last time this was tested .
How do you feel on that dosage ?
Essential to test vitamin levels at least annually
Many (most?) thyroid patients need to supplement vitamin D, vitamin B complex and magnesium continuously
Many will initially need B12 as well until levels optimal
Significant number will need to soon iron/ferritin regularly by iron rich diet…..and/or supplements
Test FIRST before starting any supplements
With autoimmune diseases……Graves disease or Hashimoto’s……gluten free and/or dairy free diet frequently helps or is essential
Thank you… I have graves …. Will start supplementing
Test FIRST before starting any supplements
Come Back with new post once you get results
Test after 6 weeks on constant unchanging dose and brand of levothyroxine……test early Monday or Tuesday morning (avoid very hot weather)
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Please expand issue of hot weather. You said “…test early Monday or Tuesday morning (avoid very hot weather).” Just a learning point for me as I’m not aware. I was tested yesterday as new GP concerned on TSH
For tests that go in the general post.
that’s only if posting a private test back…..don’t want sample sitting cooking in a post box or van
lol… will be posting results !
T3 will be lowering your TSH ...that's just what it does but medics seem to overlook that...or don't know...endo probably only looking at TSH when he should be looking at FT3 followed by FT4... because TSH is not an accurate marker
thyroidpatients.ca/2021/07/...
If your endo wants you on levo he needs to prescribe T3 as well
His job is not to be angry at you but to help you feel better
He isn't, so don't accept this bully's treatment!
On 2 grains NDT you had 18mcg T3 + 76mcg T4
So your dose was 25 + 18mcg T3 = 43mcg T3 with 76mcg T4
That dose of T3 will naturally have lowered both TSH and FT4....as in labs above.
No wonder you now feel unwell on 100mcg levo/T4 + reducing T3 dose....how much T3 are you currently adding?
I hope I've picked up your doses correctly!
I would stick it out until you get the July labs, you need to be on a steady dose for at least 6 weeks before a test to get an accurate result......and test before 9am to achieve highest TSH....see what the results are....post them here for advice....hopefully before you see the endo....then you should have ammunition/ results to use go into battle!!
Does any of that resonate ?
Good luck
thank you Dippy Dame!
I am on 25mcg T3 now with the 100 mcg of Levo:..
In fact I’ve just done a private blood test and I am waiting the results and will post here. I wanted to have a preview before going for bloods at the end of the month.
So why did my levels change which prompted me to go to the doctors as I was not feeling good and who then took bloods which showed the results as posted here. Would it have been wiser if I had just upped my dose or NDT then instead of going back to Levo ?
Thank you for your invaluable advice.
Sophia
Previous post 6 months ago showed high Ft3
Ft3 was probably too high as last dose T3 was 24 hours before test and therefore was false low result.
Day before test need to always split T3 as 2 or 3 smaller doses and last dose 8-12 hours before test
Ft4 was very low…..quite likely too low
Levels changed after hysterectomy
A) general anaesthetic likely to have significantly lowered B12 levels
B) are you now on HRT? This frequently changes what dose levothyroxine/T3 required
If you have difficulty tolerating levo/T4 then experimenting with T3-only may be better for you....just a thought!
For good health most every cell in the body needs to be flooded with T3 which should be available in an adequate and constsnt supply. The T3 sloshing around in the serum is inactive until it reaches the nuclei of the cells and attaches to T3 receptors when it becomes active.
Low cellular T3 = poor health.
Some of us need high FT3 to ensure enough T3 overcomes any cellular resistance which impairs T3 reaching these receptors.
Without a functioning thyroid gland which is no longer producing hormones on demand those have to be replaced exogenously....this then raises a challenge to find what the body actually needs and how much of that replacement is needed.
There are a lot of dots to join up!
How did you feel when FT3 was high, over the last few/6 months as SD notes?
Since NDT includes T4 this may be a factor.
Irregular dose changes and testing times may also be a factor.
Essential to optimise related nutrients
We need to be on a steady dose for at least 6 weeks before testing to get accurate results....are you testing more frequently before a new dose has settled into your system
Are you testing 12 hours after last T3 dose....or either side of 12 hrs?
And...
NDT formula may be/ has altered...
Your system may now need a revised level of hormones... things in the body can change....it happens....been there!
As before I'd persist on 100mcg levo + 25mcg T3 for 6 weeks then test following the usual protocol.
We'll see what clues those new labs throw up....
Just don't blame yourself!
Hey there again :
If the intention is to treat and medicate you to have a TSH in the range I'm afraid this may well be at the expense of your health.
The TSH was originally introduced as a diagnostic tool to help diagnose a case of hypothyroidism and it was never intended to be used once the patient was on any form of thyroid hormone replacement as then you must dose and monitor by the FreeT3 and the Free T4 readings.
We generally feel best when the T4 is in the top quadrant of it's range as this should convert to a decent level of T3 at around a 1/4 ratio - T3/T4 :
When optimally medicated - irrespective of one's choice of thyroid hormone replacement -the TSH is the least important reading and likely low suppressed- and any medication containing T3 tends to lower the TSH and the T4 reading.
Having Graves throws another spanner in the works - we were diagnosed because of TR ab/ TSI antibodies circulating in our blood which had attached themselves to our TSH receptor sites driving down the TSH and driving up our T3 and T4 thyroid hormone levels. to the extent that we needed medical help.
We can't change that process - but now, since we have had RAI definitive treatment and our thyroid burnt out and disabled in situ - our power house - our thyroid is disabled -
the HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop on which the TSH reading relies on as working well - is now broken - as there is now no thyroid to complete this circuit loop -
it is now an open ended circuit of no relevance and the TSH a very unreliable measure of anything.
Put another way - by our thyroids being burnt out in situ - we have been switched from automatic transmission to manual - so even if the TRab/TSI antibodies are still circulating in our bloods, without a thyroid to rev up, it is of no concern - as we can't rid our bloods of these antibodies.
These Graves antibodies are known to get stuck on the TSH receptors and we do not know if or when they ever loose their ' sticking power ' and why a TSH in a Graves patients is not a reliable measure of anything.
Barbara S Lougheed - Tired Thyroid - From Hyper to Hypo to Healing - Breaking the TSH rule :
Hope that makes some sense !!
Since the reformulation of Thyroid S there would appear to be some inconsistencies in batches - and it not 'as reliable ' - as it was post 2020.
I was fine for 4 years on 1 + 1/2 grains and didn't give my dose a second thought - now I seem unsettled on various batches !!
There is a tolerance level of around 10% in all production of Thyroid USP products -
though the unique ratio of 1 / 4.22 - T3/T4 - found in all Thyroid USP powder is maintained -
maybe you had a couple of batches that threw you out a bit - as NDT can be subtle in it's delivery compared to T3 :
Essential to keep optimal ferritin, folate, B12 and vitamin D levels for any thyroid hormone replacement to work well and RAI is known to trash vitamins and minerals :
Sorry you feel you have messed up - but you can turn things around - you did it before - so you can do it again :
Thank you both- Pennyannie and Slowdragon.
I think you are right in the inconsistencies in the batches and hence why my levels changed.
Slow dragon- I am not HRT…
I will work on my vitamins… wait for blood results and decide the next step forward… which may mean making my Endo redundant !
You might consider taking an adrenal glandular support supplement ?
Think I wrote about this 6 months ago - RAI is taken up, to a lesser extent by other glands and organs within he body - including the adrenals which ' pick up the slack ' when the thyroid is struggling ?
Your Thyroid and How To Keep it Healthy - by Barry Durrant-Peatfield - know it reads some what counter intuative as we haven't thyroids but a very sensible, self help book written for patients to better advocate for themselves - which likely means you end up doing it for yourself again !!!
I ha d weird readings on three and a half grains of Thyroid S. My TSH shot up to 33 & my t4 was one below normal. Unfortunately no t3 tested.
But here's the weird part. I gained a tremendous amount of weight on that batch but other than that felt better than Synthroid alone or Synthroid & Liothyronine that I am on now. I can't even stay awake on Synthroid and feel like I am not 'here' at times. And heavy as you say.
Never needed any naps ever on Thyroid S. My sleep is almost narcolepsy-like on Synthroid
So huge puzzle for me too.
that is a puzzle and it’s just not me… yes not enjoying the Levo … feel very vacant and heavy… just waiting for bloods to decide what to do next… may go back to NDT and t3… although the former is not consistent/reliable as it used to be for me…
PA Long Covid and Hash sufferer: I’m just about to transition from stabilising my adrenals as recommended by Durante-Peatfield to trying glandular thyroid supplementation, before going on to thyroid obliterating thyroxin. To see if I can avoid that. Likely not, but hey.
This forum is a goldmine of care and support and I just wanted to salute you all as we all battle on through clouds of traditional prejudice and misinformation. You are stars of humanity. We need a lot of those at the moment.
results are in… not sure what to make of this…
So - is this on T3 x 25 mcg + T4 x 100 mcg a daily T3/T4 combo
Both T3 and T4 taken at the same time and you waited around 24 hours before the blood draw :
So how long on this new medication ?
I think I'd be happy with that result after 24 hours on T4 monotherapy !
Yes combo right but I take the Levo at around 3/6am with t3 around 6am
Just over 6 weeks with the new regime
So - how are you feeling now ?
tired .. a bit vacant… heavy legs… do nothing in the evenings… cold … putting on weight!
Ok - I never got on with T3 so have no experience of reading/understanding a T3/T4 combo blood work.
When on a T3/T4 combo we generally suggest taking the blood draw after around 10/ 12 hours as this would show, an over range T3 and possible over medication symptoms ?
Don't know what to suggest - thinking on :
If this test was done after 6+ weeks on the 100mcg T4/ 25mcg T3 combo, before 9am, about 12 hours after last dose and before morning food and drinks.... then the results seem fine!
Well done!
But, you must factor in how you feel.
Are you now symptom free...or getting close to there?
Which NDT have you been taking, did you change to a new bottle. I had been taking Thyroid s for over seven years and felt great until the new batches from 2022 when my levels plummeted like yours. I am now on Levo 100mcg and 43 ish T3 split into four doses. Like you I am still waiting for the Levo to start working. I can tell when the T3 starts to run out as I start getting pains either the knee or Gallbladder these are phantom ones the poor brain simply doesn't know what to do next so calls up very old injuries, weird.
my batch was from 2022 also!
Do you have the batch number - printed on the label and box ?
I only have this… can’t make it out much
Looks like batch 2200? - if 22006 on Helvella's blogspot it is said to be a bit weak -
I do not understand cut and paste unless it mean glue and scissors so, just stay with me as I'm going to link you, hopefully, into another post where you will be able to access this amazing chart Helvella has compiled to help us all dealing with the recent inconsistencies forum members have noticed taking Thyroid S.
Yes it altered in colour, shiny and smell. It never worked either I tried my new batch for 44 days and started falling down everyday. My FT3 had gone from over 6 which it was for over seven years to only 2.76. i.e. not working. I also ordered new lots from two different sources and they never worked either.
bad news … I had to stop
Me too.
Doctors !!
Endo switching me from T3 only to NDT.
Shouldn't I feel great?
Do I tell my Endo I’m self medicating with NDT?
Think I've made a mistake!!
