Advice appreciated on latest results. Hi im on 100mg levothyroxine per day. Range
T.S.H 1.21. 0.27-4.2
T3 2.5. 3.1-6.8
T4. 22.2. 12-22
THYROGLOBIN. 15.6. 0-115
THYROID ANTIBODIES <9 0-34
CRP HS1.02
FERRITIN. 7.5.2. 30-332
FOLATE SERUM 34.1
B12. 150. 37.5-188
VIT D. 73.9. 50-250
THANKS SO MUCH IN ADVANCE
Forgot to say zinc deficiency as well
was test done as recommended early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Do you always get same brand Levo at each prescription
Can you clarify ferritin result
Exactly what vitamin supplements are you taking
Hi slow dragon, yes to all of the above. Ferritin was 75.2 range30-332
Ok
So ferritin is ok. Look at increasing iron rich foods in diet to get ferritin nearer 100
How much vitamin D are you taking
Are you taking any vitamin B complex and/or B12?
Presumably you are now supplementing zinc?
Have you tested selenium
Which brand of levothyroxine are you taking
Is it always same brand
Do you take levothyroxine waking or bedtime?
Taking any other medication?
Hi slowdragon, i take same brand accord, first thing in morning nothing to eat or drink. Supplement b12. Ferroglobin, vit d zinc supplements justt started taking selenium and magnesium.
Are you taking iron at least 4 hours away from levothyroxine and at least 2 hours away from all other supplements
Suggest you add a separate vitamin B complex
B vitamins best taken after breakfast
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
Post discussing different B complex
healthunlocked.com/thyroidu...
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
healthunlocked.com/thyroidu...
helvella.blogspot.com/p/hel...
Retest again in another 6 weeks
If Ft3 remains low you are going to need addition of small doses of T3 prescribed alongside levothyroxine
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
Hi slow dragon i take accord always same brand, take in morn on empty stomach wait 4 hours before any vitamins. No other meds. Do you think i am not converting very well, i hope its just down to vitamins, any thoughts.
currently your conversion is terrible
How much do you weigh in kilo
You might benefit from SMALL dose reduction in Levo …..Ft4 is right at top of range ….Perhaps 25mcg less PER WEEK
And retest in 6-8 weeks
Meanwhile improving vitamin levels too
Then see endocrinologist for T3 prescribed alongside Levo
Thankyou so much. Will try the b12 and reduce by 25mg per week then retest . Then maybe get app with private endocrinologist for t3. Will post after retest.
You mean…add a vitamin B complex
Yes b complex.
Hi slow dragon forgot to say my weight is roughly 52-53 kilos
So you’re taking higher dose than average for your weight
Guidelines suggest around 1.6mcg per kilo per day as likely daily dose
But some people need a bit more, some a bit less
Possibly suggesting you might have poor gut absorption or similar
Have you been on this dose long? How do you feel?
Ive been on this dose since December, I was previously on 75mg but my tsh went up to 10.1, .
Hey there again :
Ok - so now we can see the problem as your T3 is under the range with your T4 just tipping over the range -
and reminds me of a seesaw with 2 children of totally different size and weight unable to enjoy the seesaw and unable to respond to each other -
with one ( your T4 ) stuck down in the mud with the much lighter child ( your T3 ) stuck up in the air having no effect to utilise / convert / change the high level of T4 :
Thyroid hormones need to be balanced and we generally feel best when on T4 only medication - when the ratio comes in at around a 1/4 - T3/T4 -
and currently if I divide your T4 result by your T3 result - your conversion ratio is coming in at around 8.80 - and you must be feeling absolutely awful.
After RAI thyroid ablation my conversion was out at mid 5's - I've seen others who haven't a working thyroid - out and in the 6's and I think you win the Easter Egg !
RAI does trash vitamins and minerals but looking at these results these do not look too bad :
RAI is also said to be more difficult to treat as your TSH reading is not a reliable measure of anything -
as your HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop on which the TSH relies on as working well is now disabled as it has been burned through, as has your thyroid by the RAI and this circuit loop broken and your thyroid now rendered totally disabled.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than T4.
Some people can get by on T4 only medication - Levothyroxine :
Some find T4 seems to stop working at some point in time and find that by adding in a little T3 - likely at a dose their thyroid once supported them with - their hormonal balance of T3 and T4 is restored and they feel better.
Others can't tolerate T4 at all and need to take T3 only - Liothyronine.
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same hormones as that of the human thyroid gland and derived from pigs thyroid, dried and ground down into tablets referred to as grains.
20 odd years ago your doctor was able to prescribe any of these treatment options to you if T4 only ( the cheapest option ) didn't restore your health and well being -
sadly, currently, due to financial ICB/CCG financial constraints and guidelines not fit for purpose - your doctor needs to refer you to be assessed by an NHS endo for any other thyroid hormone replacement option.
I can't see that you will denied help as your T3 is under the range and an assessment with an endocrinologist should result in your receiving a small dose prescription for T3 - Liothyronine to trail alongside a slightly reduced dose of T4 - Levothyroxine.
Thyroid UK - thyroiduk.org - the charity who supports this forum hold a list of recommended thyroid specialists and endos both NHS and private - just email admin for same after today -
but as ' your need for more than T4 medication ' is glaring obviously I would hope your NHS assessment a positive one.
Please show these results to your doctor -and if nothing else this result should force his hand to run the necessary tests on the NHS and follow through to a referral back to the hospital as these are the results of a medical intervention- RAI thyroid ablation - and you deserve the right after care treatment to restore your health and well being as was, no doubt, promised when encouraged to drink this toxic substance.
Sorry - I'm getting angry and upset for you - if my grass were dry I'd go out and cut the lawns !!!
Thankyou so much pennyannie
I hope that all made some sense - as I could feel myself loosing it a bit, writing it out as this must be a common issue after RAI -
and I just get upset as I'm not aware there is any specialist follow up -
we drink/ingest this toxic substance and we are simply discharged back out into primary care where we are made to feel our failing health all a mystery and we can't even get the relevant blood tests done to help monitor our progress - or not :
while RAI thyroid ablation continues to be a first line treatment option in what we believe to be a health care system.
To quote Elaine Moore - ' the dose of RAI is not as exacting as one might think '
and even if told you may or may not become hypothyroid - the chances are - given enough time - the RAI will burn and fully disable the thyroid - within months or years -as there is no time scale in place and I'm not aware of any follow up research papers.
Hi pennyannie what should my conversion rate be given the figures, you said its coming in at 8 .
The accepted conversion ratio when taking T4 monotherapy is said to be :-
1 / 3.50 - 4.50 T3/ T4 with most people feeling at their best when they come in this range at 4 or under : I have no research papers to back up this statement and just learnt this through continually reading :
If you look at both the T3 and T4 ranges - they are sliding scales - as your T4 builds in the range one would expect the T3 to follow suit and build within it's range :
So for example with a T4 at the top of the range at 22.00 - with good conversion - this would be giving you a T3 of around 5.50 -
Conversely with a T4 at the bottom of the range at around 12 - one would see a T3 at around 3.10 :
Your T4 is at 22.20 in a range from 12.00 - 22.00 :
Your T3 is at 2.50 in a range of 3,10 - 6.80 :
Does that help ?
Could the gut absorbtion possibly be due to zinc deficiency or low vits, or is it impossible to know (thankyou so much for your help)
I think it's impossible to know - all you can do is ensure that you now keep optimal core strength vitamins and minerals - especially those of ferritin, folate, B12 and vitamin D and once with a prescription for enough T3 to restore T3/T4 hormonal balance and with your metabolism restored you should start to feel a lot better.
Thamkyou again will try and arrange private app
Ok then -
but get the list from Thyroid UK so you have some clue as to who to go to -
and ideally try and find a specialist who is also NHS and with any luck after your first appointment s/he will switch you to their NHS list.
You can always ask for feedback on someone you plan to see - and your replies will be Private Messages - ( the Chat paper plane icon - top right on my laptop ) as we are not allowed to openly discuss any medical professional.
Many specialists are still offering a video consult option so distance doesn't need to be an issue if you are happy with this option rather than face to face.
hi pennyannie seen nhs doc this morning got a referral for private endo anyone know of dr sunil nair [endocrinologist] he was on the endo list from TUK.
Well done you - but why can't your doctor refer you to an NHS endo ?
I do not know this person or any other person as when all this happened to me back in 2016/18 - there was no one of any help in Cornwall where I live and I was too ill to travel outside the county by myself so I started self medicating and am much improved.
Suggest you start a new post with the above piece of information so all forum members can see your question and hopefully you will get some feedback on this person via the PM - Private Message facility.
Thankyou, g.p.would have referred nhs endo but waiting list was 12 months . So have health ins , so will pursue that .
Okey doke - let's hope some other forum members have some feedback for you :
Was your doctor understanding and supportive of your health issues ?
A little bit, would nt entertain bllood results i.e t3 from medicheck. Said they meant nothing to her would nt listen to my explanation just dismissed it. But at least i got a referral . Thankful for small mercies
In my words - dismissive and ignorant - and similar to how I was treated as are many and one reason why this patient to patient forum exists and why many come back on to give back help and support when through the other side and well again.
Which CCG/ICB area are you in ?
Did you know you can search by surgery and area if T3 is being prescribed on the NHS ?
Go into openprescribing.net/analyse/ and enter Liothyronine as the drug and if searching NDT - pop Armour ( the leading brand ) into the search engine.
New prescriptions of NDT are virtually a non starter now as are new prescriptions for T3 in certain areas of the country due to the post code lottery health care has become.
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