Hi - I've just got my results back and would be grateful for any feedback and advice - I'm quite new to this although have obediently been chomping down the thyroxin for years.
Test was done at 8:30am - no levothyroxin for 24 hours before and no B vitamins taken at all.
I'm vegetarian but do eat fish - post menopausal - eat gluten and dairy (although have substituted soya milk for dairy in last few months.
Currently on 200mg levo + a range of other meds - see bio. Overactive 20+ years ago, radioiodine treatment so underactive for last 20years -
I hope the results below are visible
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Rambling9
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Hi - I must have missed info on this website about avoiding soya, as this is the first I’ve heard about it. Please can you enlighten me? Does this include soya beans ie edame?
If you use thyroid replacement medication, it is important to know that soy can prevent optimal absorption of your thyroid medication, resulting in inconsistent medication effects.
If you take thyroid medications, you should also be aware that several other components of your diet, including calcium and iron, can also prevent adequate absorption of your medication.
Personally I noticed even cutting soya lecithin (in many chocolates or puddings)
Do you always take levothyroxine on empty stomach and nothing apart from water for at least an hour after
and no other medications or supplements within 2 hours minimum
As vegetarian you need at least a daily vitamin B complex
High B12 with low folate can be deceiving
How much vitamin D are you taking.
Are you taking a magnesium supplement afternoon or bedtime
Ft4 is obviously far too high and Ft3 far too low
First step is to slowly reduce levothyroxine
Suggest you consider reducing levothyroxine by 50mcg PER WEEK initially and retest in 6-8 weeks
Obviously likely to need to reduce levothyroxine further over coming months
You should see Ft3 improve as Ft4 reduces
But if it doesn’t you probably need addition of T3 prescribed alongside levothyroxine….but that may be extremely difficult to get with your medical history
Heart must have good Ft3 levels
Marz has link to excellent book on this very topic
Yes levo on empty stomach then leave an hour - but have to take PPI so currently Pantoprazole 40mg an hour after levo then have to wait another hour before breakfast! Wondering if it might be better to take levo at night
Will investigate Vit B supplements
Vit D - 25ug per day - the Healthspan super strength vitamin D3
Hasn't even occurred to me to take a magnesium supplement so will investigate that too
I was on 150mg levo a year ago but had a wobble which turned out was nothing much but was put back up to 200. Guess I should see GP about reducing it or adding in extra supplements incase of contraindications.
PPIs are a complete pain - have to skirt round them by 4 hours for my Rheumatoid Arthritis meds - I'm booking an appt with my GP as I'm on a raft of meds/supplements as it is.
Yes have 100mcg tablets - Aristo is the brand. Have a pill cutter too, They are not always the same brand either - I had no idea until I came across posts on this forum that it's better to stick with one. Will start reducing to 175 two days a week.
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
beware 25mcg Northstar is Teva
Northstar levothyroxine phased out Feb 2023
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.
Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Netherlands (and Germany?) guidelines are for thyroid patients to always get same brand levothyroxine at each prescription
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Hi SlowDragon - I'm preparing to seeing my GP next week. He is bound to question reducing levothyroxine - I know I have far too much T4 and that it's important to reduce it slowly. But I'd struggle to explain why - and why F3 will improve as Ft4 reduces. Apologies - it's a steep learning curve!
I'm also asking re PPIs which are likely preventing absorption - my diet is pretty healthy so I should be seeing benefits of that! Taking H2 Blockers may be better. Plus reviewing when I take all of my meds and any contra-indications
If Ft3 doesn’t improve on lower dose levothyroxine, with all vitamins at optimal levels then like many members you may need small dose T3 prescribed alongside levothyroxine
GP can not initiate T3
You would have to see endocrinologist
if NHS GP would have to agree to refer and wait is approximately 12 months
So many initially see endocrinologist privately
Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3 if clinically appropriate
Since your have no thyroid your T3 result is coming directly and only from your T4 medication - lowering your T4 will likely result in a lower level of T3 :
Optimal ferritin, folate, B12 and vitamin D will help convert better the T4 into T3 so even staying on the dose with optimal vitamins and minerals you would see a lower T4 reading / result and an increase in the T3 reading / result :
However i believe the imbalance between your T3 and T4 hormone levels too wide to be normalised with just optimal vitamins and mineral and believe T4 monotherapy is not the best treatment option for you.
I do wonder how you are feeling with such a low T3 level as it is low T3 that causes all the symptoms of hypothyroidism.
Currently your T3 reading is just around 5% through the range whilst your T4 is way over range at some 180%.
T4 - Levothyroxine is basically inert and a storage hormone that needs to be converted by your body into T3 the active hormone that runs the body and it's generally accepted that we feel best when T4 is up in the top quadrant of it's range and converting to a T3 running at around 60 -70% through the range.
It is essential that you are dosed and monitored on your Free T3 and Free T4 results and not on a TSH though fully aware that in primary care the yearly thyroid function test is but just a TSH test and in reality a total waste of everybody's time and money.
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.
No thyroid hormone replacement works well until your core strength vitamins and minerals, namely, ferritin, folate, B12 and vitamin d are up and maintained at optimal levels.
I now aim for a ferritin at around 100 : folate 20 : active B12 75 ++ and vitamin D around 100.
Some people can get by on T4 only :
Some people find that T4 seems to stop working as well as it once did and by adding in a little T3 - Liothyronine - this rebalances these 2 vital thyroid hormones and their health restored.
Some people can't tolerate T4 - and need to take T3 only :
Whilst others find their health restored better by 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.
I too had RAI thyroid ablation back in 2005 and became well unwell some 8 years later and finding no help nor understanding and having been refused any other treatment options in early 2018 i decided to ' jump ship ' and now self medicate and am much improved.
Hi Pennyanne - Thank you for your reply - I feel rubbish - tired all the time and definitely don't feel at my sharpest mentally. Also low mood and quite dry eyes over last couple of weeks. Trouble is tiredness is also linked to other more recent problems so I've not kept my eye on the ball re thyroid.
Re vitamins/minerals - ferritin and folate - are they both a question of upping intake of iron rich foods?
If you are looking to relieve your eyes, either with OTC products or NHS prescription of any lotion, potion, drops, or the gunkier grease for overnight use -
Re vitamins/minerals - ferritin and folate - are they both a question of upping intake of iron rich foods?
No.
Ferritin is a measure of your iron stores.
Folate is not iron, it is one of the B vitamins. I would suggest that you need a B Complex product containing active forms of the B vitamins i.e. the ones that the body can make use of without lots of processing that might be difficult for some people to do :
Be aware that biotin, which appears in many B Complex products and in products sold for skin, nail and hair health, can reduce the reliability of testing, so should be stopped for 2 - 7 days beforehand. The higher your biotin dose the longer you should stop taking it before testing. This problem with biotin can affect many, many tests, not just thyroid function tests or vitamin tests.
Just to note that I have recently had 2 Medichecks tests and both times my T4 came back WAY too high at almost 30 - however my local NHS lab gave me a result of 17... (same week, same blood test conditions). I would ask GP for a NHS test before making any decisions. I don;t feel over medicated at all so have decided to ignore Medichecks test.
I have the list of private doctors from Thyroid UK and GP appointment on Weds so will see what the outcome of that is. Are there any recommendations for private endocrinologists that people have used - not sure if I should be asking that or not re rules...
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