Hi I was getting my thyroid checked as I had a 24 hr ecg and the report suggested it, I think due to palpitations /missed beats. Also seeing Endo 1/10 so she usually asks if I’d get them checked .
Here goes
TSH 3.80. Range 0.30-4.50
FT4 14.9 “ 11.0-22.0
FT3. 3.5. “. 3.1. - 6.8
previous ones on 15/3/23
TSH. 1.07.
FT4. 16.4
FT3. 3.5
Do I have issues with medication ? Currently taking Levo thyroxine 125/100 alternate days .
Kind regards
Lesley
A TSH of over 3 is saying that you're under-medicated. It should come down to 1 or under.
Thanks Greygoose , does that mean I need more levo Or less ? And being over medicated does that mean I could be back hyper ? Sorry I still don’t understand my own conditions. .
Regards
Well, if you're under-medicated, it mean you need more levo. And you certainly couldn't be hyper with those results, your very hypo.
Were you hyper before? Do you have Grave's?
Oh sorry for my lack of understanding . I was very hyper as had Graves’ disease - had RAI then went hypo and I’ve struggled to feel well for around 11 years . I feel really rotten at the moment - weight gain , fatigue 3/4pm crash exhaustion , hair loss , heart pounding, very emotional - do the symptoms tally ?
Thank you for listening .
L
OK, so you've probably been under-medicated all this time. Doctors are notorious for keeping their patients under-medicated, because they don't understand!
And I'm not surprised you feel rotten with those results!
Your symptoms do tally with being under-medicated, yes. You need an increase in dose as of yesterday! 
You really would be doing yourself a favour if you learnt more about your disease, because then doctors couldn't get away with poor treatment like this! The truth is, they don't really care about you or how you feel, they just want you out of their surgery as soon as possible. You need to be able to say, 'here, hang on a minute...' If you don't say anything they will take that as agreement of your treatment and just not bother. It's only by standing up for yourself that you're going to get the treatment you deserve.
Grey goose , thank you so much . I get easily muddled by endocrinologists or any consultant as get intimidated by them . I will however try to stand my ground now I’m armed with the info you have given . Another quick
Question … does it look like I’m converting t4 to t3 ok ? With these results ?
I will let the forum know how I get on at my
Appointment .. once again thank you
L
Can't tell at the moment how well you convert because your FT4 is too low. You just haven't got enough T4 to convert.
Try not to let them intimidate you. They're only human beings - or so I'm told. And they probably don't know much more about thyroid than you do. They intimidate their patients to cover up their lack of knowledge.
was test early morning and last dose Levothyroxine 24 hours before test
Do you always get same brand of Levothyroxine at each prescription
Request increase to 125mcg daily and retest in 6/8 weeks
What vitamin supplements are you taking
When were vitamin D, folate, B12 and ferritin last tested
hi , yes tested at 850 am and 24 hrs after last dose . I always take Mercury Pharma brand .
I am only taking Colecalciferol 800daily after a large loading dose back in 2019/20 .
Vit D last tested
16/6/22. 96nmol/L
14/1/21. 82nml/L
15/7/19. 47nml/L
18/1/18. 43 nml/L
B12 last tested
10/7/23. 965
4/1/23. 1182
16/6/22. 1359 after 3 b12 injections in November and December 21 organised by myself trying to feel better )
15/6/21. 573
Folate last tested
11/4/24 6.8
25/9/23 12
4/1/23 < 2.0 (which prompted folate supplementation and raised to 12 but then dropped again) i Am
Due to get retested end of October this year .
I appreciate you replying sorry it took so long I was checking back on my records
L
Vit D last tested 16/6/22. 96nmol/L
Obviously this needs retesting at least annually
Can test via NHS private testing service
16/6/22. 1359 after 3 b12 injections in November and December 21 organised by myself trying to feel better )
Folate last tested
11/4/24 6.8
B12 needs retest
Folate too low
No ferritin
Low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help maintain B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
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 and may need separate methyl folate couple times a week
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 5-7 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)
Post discussing how biotin can affect test results
healthunlocked.com/thyroidu...
helvella.blogspot.com/p/hel...
I really appreciate you taking the time to give me all this invaluable info . I am really going tTry my best to get to grips with all of it and take charge testing .
Many thanks
L x
ectopic beats can be due to being on too LOW a dose of levothyroxine
Do you wear a fitness watch
Worth getting watch to record resting heart rate and (ideally) one that records ECG on demand
Hi no I don’t have one but will definitely think of investing in one as I think it will help .
🙂
I had ectopic beats for years …..never managed to “catch them” on a 24 hour heart rate monitor
Apple Watch was first to offer ECG …and expensive
But increasing number of different brands available offering ECG
toproducts.co.uk/smart-watc...
Thank you SlowDragon I’m currently trawling the internet to find one and checking your links . Much appreciated x
Hello Sixties and welcome to the forum :
RAI is a toxic substance that slowly burns out and disables your thyroid in situ :
Primary hypothyroidism caused by RAI thyroid ablation is known to be more difficult to treat and you must be dosed and monitored on your Free T3 and Free T4 readings and not a TSH seen in isolation which is generally all that is run in primary care.
The TSH relies on the HPT axis working well and being complete -
but after the RAI the HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop is broken - and this circuit loop now open ended and not a reliable measure of anything.
We generally feel best when our T4 is in the top quadrant of its range at around 80% through with the T3 tracking just behind at around 70% through its range -
your TSH maybe down towards the bottom of its range, or under the range - but this does not matter -
you have no thyroid and can't go ' hyper ' ever again - as your own automatic power supply - your own thyroid - is now disabled and non functioning.
Currently your T4 is at just around 39% with your T3 at around 11% - so both much too low :
No thyroid hormone works well until the core strength vitamins and minerals are up and maintained at optimal -
I now aim to maintain my ferritin at around 100 - folate at around 20 - active B12 at 125 ( serum B12 500++ ) and vitamin D at around 125.
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.
T4 is a pro-hormone and needs to be converted in the body into T3 which is the active hormone which runs the body, much like fuel runs a car, and said to be around 4 times more powerful than T4.
Some people can get by on T4 only medication :
Others find, at some point in time, that T4 doesn't seem to work as well as it once did - and by adding in a little T3 - probably at a similar dose to that their thyroid once supported them with they feel better and T3/T4 balance restored.
Others can't tolerated T4 and need to take T3 only - Liothyronine.
Whilst others find they feel better taking Natural Desiccated Thyroid which contains all the same known hormones as the thyroid gland and derived from pig thyroids dried and ground down into tablets referred to as grains, and the original treatment for hypothyroidism and successfully used for over 100 years prior to Big Pharma launching its own T3 and T4 synthetic thyroid hormone treatment options.
We do now have some research that you find of interest:-
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
The most well rounded of all I've researched is that of Elaine Moore - books and websites - elaine-moore.com
I have Graves and had RAI thyroid ablation back in 2005 - details on my Profile page - just press the icon alongside my name if interested in my journey - or anyone's - just press their icon - as this takes you to all they have ever written on this open patient to patient forum :
If you get lost reading around simple press your Profile Icon which is sitting alongside a set of Icons detailing - My Hub - Chat - Post and Alert Menu - top right on my laptop facing me - though likely somewhere else on a different device.
Hi Pennyannie , thank you so so much for the really detailed reply . It has really made things alit clearer and I have written lots of points diwn so I can challenge my Endo . I feel like I’m revising for an exam ha ha . Once again thanks a lot xx
First off I think you need to get your thyroid hormone levels up the range -
and once your T4 is up in the top quadrant we can then see better how well you are at converting T4 into T3 - but most likely, like me, you'll need a little bit of help :
It's not a given, getting a prescription for T3 - it has become something of a postcode lottery as various ICB areas have withdrawn funding for T3 on the NHS -
long story short - T3 price rose by some 6000% during the past 20 odd years with the NHS apparently tied into purchase of T3 from this one particular supplier - I know - it reads as crazy - anyway - the price has now reduced substantially but there are still pockets in the country where it is believed T3 is not seen as a necessary treatment option for patients with primary hypothyroidism.
If you go into openprescribing.net - you can see by surgery or ICB area how supportive your primary care provider / area is/are compared to others in your catchment area.
Also it's most important to get your core strength vitamins and minerals built up - as without these being maintained at optimal levels - no thyroid hormone replacement works well anyway -
Hi thank you , I was being prescribed t3 along with levo thyroxine but this new Endo reduced it and then stopped it . So when I see her again I’m going to ask her about it . Yes I’m also going to focus on my vitamins too it’s all starting to make much more sense since having these conversations with you and the other people on here , you are all really knowledgeable and I’m grateful for that x
I didn't realise you had posted before and replied as it this were your first post - apologises.
Ok - so you were on T3/T4 combo - did you feel better and why was it stopped ?
I should have looked back and will do this now :
I now see you have tried all the treatment options - which did you find suited you best ?
I actually found the NDT Naturethroid suited me the best but my GP put the fear of god into me and told me i was risking Atrial Fibrilation and heart disease also Osteoporosis and wasn't willing to help me with blood tests etc . So I decided to stop it due to fear. I was having to buy it privately from someone in a clinic in London who had never seen me and to be fair I wasnt totally convinced they were good people to deal with as everytime I received a letter it was badly written with lots of spelling mistakes and even my name was wrong on a couple of them. I was just glad someone was listening. The previous Endo in Carlisle said I had mental health issues ; depression, anxiety etc and needed to sort myself out before she would see me again. Also said NDT was disgusting and that she was late for her childs birthday so i would have to leave! This is the caliber we deal with . L x
NDT was the original treatment for hypothyroidism and used successfully for over 100 years until Big Pharma launched their synthetic T3 and T4 treatment options on the back of NDT and then went about claiming market share discrediting NDT in the process.
All treatments options for hypothyroidism have faced potency issues at one time or another - NDT is a lot more expensive and we tend to be treated on the NHS with the cheapest best option which is T4 - Levothyroxine which to be fair suits probably around 70% of all those taking it -
but when you have had a medically intervention - a thyroidectomy or RAI thyroid ablation - the chances are you'll need a little T3 alongside the T4 to re-balance both these vital hormones.
Having been refused both T3 and NDT through the NHS I started self medicating NDT in 2018 and am now much improved as to how the NHS would have me.
The thyroid is a major gland responsible for full body synchronisation of your physical ability and stamina, along with your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Mental health, depression and anxiety are common issues when your T3 is too low for you - the brain and heart take the lions share of your available T3 just to keep you alive and ticking over -
and when there is not enough T3 circulating in your body - symptoms start to creep in - which you had - and to be dismissed by a so called medical professional to sort these things out for yourself is totally unacceptable.
Oh no need to apologise at all . Yes I was and I did feel much better than I do now but of course sometimes you get used to feeling rubbish and forget what it’s like to be normal again . Feel like we strive to get back to pre thyroid situation . Endo just decided to stop it I honestly don’t know why .
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