Early morning 10am bloods taken, levo (T4) was previous day, no food, multi vit stopped 3 days before ( only taking half recommend amount anyway). Done on 15/12/21
GP prescribed bit d and iron over this last year, now ok.
On b12 injections 4 weekly.
Still symptoms, fatigue, muscle pain, weakness, memory issues, weight gain, dry skin, constipation etc
T3 at bottom but T4 up.
On 75 levothyroxine at moment, if up this to 100 might this take T4 too high, but pull up the low T3.
Think conversion still an issue
Radioactive iodine years ago for overactive thyroid.
Need to speak to GP as endo consultant said to go to keep TSH around 1
ANY THOUGHTS PLEASE
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First step is to try 25mcg dose increase in levothyroxine
If this doesn’t improve Ft3, likely to need addition of T3 prescribed alongside levothyroxine
Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3
...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many especially after thyroidectomy or RAI
Apologies SlowDragon for my slow reply.What a vast amount of information for me to look at, many thanks, so appreciated.
In July 21 Ferritin was 128 (10 - 120 ng/mL), Folate 8.4 (3.00 - 12.00 ng/mL) Vitamin D I cannot find but was on 800iu NHS tablets daily via GP until changed to Smarty Pants Womens Formula Multi which take half amount = D3, 1000iu, no B complex, not gluten free diet.
Almus 50, Mercury pharma 25.
Weight 60.6kilo ( Height 5' )
Diagnosed as low B12
This knowledge will help form a conversation with GP and hopefully move forward, amazing, thanks again
Many thyroid patients need at least 2000iu as maintenance dose, or more
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
yout replies are so interesting, much for me to take in, thank you again, will certainly consider all you have suggested, so appreciate your time given x
Looking at your results, your T3 is far too low. If you are converting poorly which it looks like you are, increasing T4 Levo won’t help, it might even make you T4 over medicated. What you could do with is a T4 plus T3 combination trial for 3 months. The NHS probably won’t do this for you. The quickest route to having this trial is going private and seeing an Endocrinologist that is pro T3. I’m on 70mcg liquid Levothyroxine a day plus 5mcg T3 Liothyronine twice a day. Amazing what a seemingly small amount can do for you. Some people need much less Levothyroxine or Liothyronine to reach the top of the blood test ranges than other. Not all need high amounts. I don’t think it’s to do with size of your body. It may be age related. I’m 63. 5’4” and weigh 10st. Even when I was over weight 14st + due to being grossly under medicated I still only needed 75mcg Levothyroxine to get my bloods to the top of the range. I’ve lost over 4st since starting T3. This is due to my metabolism working properly now and having the energy to move more and faster. I went private only after being abandoned by the NHS. I cannot explain what a huge difference adding T3 has done to my life. I’m now full of energy and full of life.
If you’d like details of my private only Endocrinologist please just private message me.
Have you considered doing the DIO2 gene test through Regenerus Laboratories. Mine came back positive which proved I’m a very poor converter of Levothyroxine T4 to active T3. My result has been scanned onto my NHS records now. This helped me successfully get Liothyronine off the NHS eventually after a successful private T3 plus Levothyroxine trial.
So I presume you had RAI thyroid ablation for Graves Disease ?
RAI is a slow burn and eventually your thyroid becomes fully disabled with your thyroid " burnt out " and your becoming hypothyroid.
Your HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop is now broken and your TSH is not a reliable measure of anything, and especially since you also have Graves Disease, and you must be dosed and monitored on your T3 and T4 blood levels.
We generally feel at our best when our T4 is up in or towards the top quadrant of its range as this should, in theory convert to a decent level of T3 the active hormone that our body runs on which is said to be around 4 times more powerful then T4.
T4 - Levothyroxine is inert, a storage hormone, which your body needs to convert into T3 which does all the work in your body and too low a level of T3 and you have all the disabling symptoms of hypothyroidism just as too high a level of T3 for you, and you may experience symptoms of over medication, but you can't go " hyper " because now you are hypo.
Conversion of T4 to T3can be compromised by low nutrients and it is essential to have and maintain optimal levels of ferritin, folate, B12 and vitamin D.
The thyroid is a major gland responsible for full body synchronisation including your physical, emotional, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
Some people can get by on T4 only, some people find that T4 seems to stop being as effective as it was and need the addition of a little T3 making a T3/T4 combo, some people can't tolerate T4 and need to take T3 - Liothyronine only, and other people find they feel better on Natural Desiccated Thyroid.
20 odd years ago all these options were available in primary care and prescribed by your doctor
Now doctors can only prescribe T4 and you need to see an endo to " see " if you qualify for any of these additional options that are generally available throughout most other countries in the World.
I just think it make sense that when there has been a medical intervention and the thyroid either RAI ablated or removed through surgery that at the very leas both T3 and T4 should be on the patient's prescription for if, and likely when, they will both be needed to restore well being and optimal health.
By not replacing your own lost " T3 " you have in effect been down regulated by some 20% of your overall well being and over time this will pull you down further.
The accepted conversion ratio when taking T4 only medication is said to be : 1 / 3.50-4.50 T3/T4 with most people feeling at their best when conversion comes in at around 4 or under.
So to find your conversion ratio you simply divide your T3 into your T4 and I'm getting yours coming in at just over 6.00 - showing your conversion very weak, and way out from the centre.
You should be an ideal patient to be put forward for a trial of T3 - Liothyronine with your T4 - Levothyroxine but I'm afraid it is very much a post code lottery in the UK when trying to get better thyroid health.
Thyroid UK the charity who support this forum do have a list of recommended doctors and endo's to be referred to and this may help you - otherwise you could ask for PM's ( private messages )of a specialist if you let forum members know whereabouts you live.
Have you read up at all on the Elaine Moore Graves Disease Foundation website ?
That's where I started my journey back to better health, and then found this amazing forum and now I self medicate and buy my own full spectrum thyroid hormone replacement and am much improved.
I'm with Graves post RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease - caused by the RAI and hypothyroidism.
P.S. Your thinking isn't wrong - but your haven't a working thyroid - so you need to rethink as your gland isn't there adjusting and moderating anything and your HPT axis is broken as there is no working ' T " thyroid in this loop.
You must be dosed on your T3 and T4 levels and these must be balanced and currently your T3 is barely in the range at around 2.7 % with a T4 at around 75% - the imbalance between your T3 and T4 is, I believe, too wide to made up by a dose increase in T4, though it may help.
Does your doctor know of these results, and was any comment made as to how to increase your T3 ?
Hi pennyannie,im amazed at the depth of this information, thank you.
Only just got these resultsat Friday, intend speaking to the GP, did tell him was going to get private test done.
not sure about his reaction, he is helpful but no doubt ruled by this area as far as last known they were not letting anyone have t3 when tried to push an endo to prescribe t3 some time ago got a no.
Will use what you have mentioned when i call the GP.
If your doctor wants to he can write a private prescription for T3 - Liothyronine and help you - I'm not taking T3 - but reading through posts on here, there is a way " to write " the T3 prescription which enables you to purchase through one of the pharmacies as listed on the Thyroid UK website at a much cheaper price than the NHS pay - I know -madness.
I take Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland, namely T1. T2 and calcitonin pls a measure of T3 and a measure of T4 in each tablet, referred to as grains.
NDT is pig thyroid, and was used used successfully for over 100 years, long before we had the science of blood tests, and patients were simply given a slither of pig thyroid to chew on. If symptoms were relieved, job done, if not a slighter larger nugget would be shaved off until such time as the right size nugget was found to relieve the patients symptoms.
NDT was the original medication before Big Pharma came along with it's synthetic T3 and T4 options in around the middle of the last century.
If he's " elderly " he likely knows and remembers prescribing both NDT and T3 - and if this were 2001 - he would have had all these thyroid hormone replacement options available to him to prescribe :
I think he needs to write Thybon Henning Liothyronine sodium 20 mcg :
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