Hello members, thank you all for your amazing knowledge with all things to do with the Thyroid. I had a total thyroidectomy 25 years ago. I currently take 100mcg thyroxine a day, with no supplements.
I decided to check my levels with Medichecks this week and followed the patient to patient tip about taking my thyroxine prior to testing. My test was done at 09:05 am.
Hello Lanegardens and welcome to the forum :
Can I ask why you had a thyroidectomy please -
Ok - so 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 being the active hormone and around 4 x more powerful than T4.
Levothyroxine - T4 - is a pro-hormone and needs to be converted in your body into T3 the active hormone that runs the body - much like fuel runs a car - and the thyroid gland is responsible for the full synchronisation of your body - from your physicality and stamina through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
In order for T4 to work well in the body and be able to convert to T3 - we do need to maintain optimal levels of the cote strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D and conversion can also be down graded by inflammation, antibodies, and any physiological stress ( emotional or physical ) depression, dieting and ageing.
We generally feel best when the T4 is up in the top quadrant of its range at around 80% with the T3 tracking just behind at around 70%through its range.
Currently your T4 is at around 70% but your T3 barely in the range at just around 3% and you must be feeling dreadful :
What symptoms are you dealing with ?
Your inflammation ( CRP )is over range ?
Your ferritin looks ok - this might be a false high as ferritin can rise if the body inflammed:
Your folate would be better up at around 20 - though your B12 looks ok -
but your vitamin D is very low - and needs to be up at around 125.
Some people can get by on T4 only medications :
Others find that at some point in time T4 seems to not work as well as it once did and that by adding in a little T3 - probably at a similar dose to that their thyroid gland once produced -
they are able to restore the vital balance between T3 and T4 and restore their health and well being.
Others can't tolerate T4 at all - and need to take T3 only - Liothyronine - as you can live without T4 - but you can't live without T3 :
Whilst others find their health improved by taking Natural Desiccated Thyroid which is the original treatment for hypothyroidism and derived from pig thyroids, dried and ground down into tablets referred to as grains - which are medically graded - with each grain containing all the same known hormones as that of the thyroid gland - viz - trace elements of T1. T2 and calcitonin + a measure of T3 and T4 in each tablet/grain.
Have you shown your doctor this Medichecks blood test report - and what has been suggested going forward ?
Your doctor can only prescribe T4 and you do not need more of the same - I think you need a referral to an endocrinologist to hopefully be offered a trial of T3 alongside T4 -
T3 prescriptions are not available everywhere as it seems to be a bit of a post code lottery due the CCG/ICB area financial constraints - and some endos in some areas are constrained by hospital guidelines rather than a patients medical need -
but it's the first route to take - as the NHS are meant to have a duty of care.
Obviously there are a few glitches here, as detailed, and need resolving - but ultimately I can't see - even with these improved - that T4 only is going to restore your health and well being.
Thank you Pennyannie, for taking time to respond and to give such a comprehensive analysis of my results.
I had an overactive thyroid in my teens, and was put on carbimazole followed by a partial thyroidectomy a couple of years later. I eventually had a total thyroidectomy when my levels became very erratic.
I actually don’t feel great, have palpitations and have put on a lot of weight. I shall contact my GP with the view of discussing the addition of T3 to my regime.
I know you can't feel great with such a low T3-
Ok - so you have Graves Disease which is a poorly understood and badly treated Auto Immune disease by mainstream medical.
You might find Elaine Moore's books and website of interest - elaine-moore.com
If you into openprescribing.net you can see by surgery and ICB/CCG area how supportive your surgery is compared to other surgeries in your area - and similarly with different ICB/CCG areas.
Just enter Liothyronine - as the T3 drug - you want to look up - however we don't know the ICB directive regarding ' new patient prescriptions for T3 ' - and guess your doctor can advise on the local regulations - and you might be lucky and live in area where T3 isn't a problem - I don't know where you are, so can't hazard a guess.
Obviously if you can afford to go private all the treatment options as detailed previous today are available -
Thyroid UK - the charity who supports this patient to patient forum hold a list of Private and NHS doctors and specialists who are supportive of thyroid patients -
so maybe email admin @ thyroiduk.org - for the Patient List of Recommended thyroid specialists - and see who might make sense for you - ideally someone working both Private and NHS - so after initial appointment you might get flipped to his/her NHS list !!
Many specialists still offer Zoom appointments so distance need not be an issue.
We aren't allowed to openly talk about any medical professional - but you can start a new question asking for recommendations of whom to see - your post will be closed to replies and forum members will reply via Private Messages - as this is a one to one private conversation and your Chat icon - the paper plane on the task bar - will light up if anyone replies.
I too have Graves Disease but was treated with RAI thyroid ablation back in 2005 - a treatment I deeply regret as I became much more ill around 8 years later - with the long term consequences of drinking this toxic substance -
I now self medicate as I was refused both T3 and NDT by my doctor and hospital back in 2018 and too ill to travel out of county and prior to Zoom appointments - so I started self medicating, trialled both T3 and NDT - and chose to stay on the latter - and much improved as to how the NHS would have me.
If you get lost reading around - just press your Profile icon which also sits on the task bar and this takes you back to all you have ever written and all your replies on this forum.
You can read any forum members thyroid journey by simply pressing the icon alongside anything they write and this takes you to their Profile page.
Any new information deserves a new question/ post as we try and answer as fully as possible any question within around the first 24 hours of posting and need to ' move on ' due to the volume of new questions waiting to be answered.
Always remember to answer using the Reply button within the forum members reply and then as you start writing their name pops up and they receive an email telling them they have a reply and to come back to read a previous post - just as I have done this evening.
Ok - I think that's it for tonight as I'm way past my best before time of day and just hope I still make some sense.
P.S. Keep an eye on the Alert button - it has a glitch and doesn't necessarily light up /or go out after using the facility - or maybe that's just me !!
Good morning Lanegardens
Your NHS doctor is not obliged to accept the Private blood test results - but if nothing else it should force his/her hand to run further tests on the NHS and start the ball rolling towards a referral to endocrinology - hopefully.
Years ago, and up until around 2000, doctors were able to run the appropriate blood tests and prescribed T3 or NDT to their patients, if T4 levothyroxine - the cheapest treatment option, wasn't fully restoring the patients health and well being.
Currently your doctor is pretty much reduced to trying to ascertain your thyroid status through just a TSH blood test result - with an occasional T4 -
which when you haven't a thyroid and with Graves, the TSH is the least reliable bio marker and anti depressants have become the second line treatment option for hypothyroidism which leaves many patients very unwell and finding themselves looking for answers elsewhere and trusting strangers on a forum !!!
Welcome to the forum
Folate and vitamin D are both deficient
So first step is to get these improved and then retest in 2-3 months
only add one vitamin supplement at a time then wait 10-14 days to assess before adding another
Suggest you start with vitamin D with k2, then vitamin B complex, then magnesium
Currently your conversion rate of Ft4 to Ft3 is poor
You should see conversion rate improve as vitamin levels increase
Thank you SlowDragon for replying and for your recommendations. Medichecks have recommended 4000 iu vitamin D a day for 10 weeks, decreasing to 400 iu daily.
Well noted about supplementing one vitamin at a time, thank you.
decreasing to 400 iu daily.
Retest at 10 weeks see how much levels have improved
That may well be an inadequate maintenance dose
Low vitamin D
GP should prescribe 1600iu everyday for 6 months, however you’ll be better off self supplementing at higher dose
NHS Guidelines on dose vitamin D required
panmerseyapc.nhs.uk/media/2...
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going daily maintenance dose to keep it there.
Test twice yearly when supplementing
Can test via NHS private testing service
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Suggest you try 2 or 3 sprays per day
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Recipe ideas
bbc.co.uk/food/articles/mag...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
Thank you
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
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
As your folate is deficient, perhaps start with a separate folate and vitamin B complex on alternate days
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...
Thank you.
How do you feel at these thyroid levels?
Hello Sleepman, thanks for replying. I tend to be quite jittery, have poor concentration and pain in my ankles. Hopefully, once I start the vitamin D and folate I should see an improvement in myself.
Help understanding my test results - I'm new :-)
Help understanding my blood test results.
Help understanding Thyroid results
Help with understanding test results
Blood results in and I got my first copy ...help please!
