After waiting at least 6 weeks post covid and one venous sample getting delayed I finally have my test results. I am due an endo appointment soon and last time my endo wanted to reduce levothyroxine to 75microgrammes from 100micro based on TSH alone which I fought because I have no symptoms of being over medicated and have maintained the same weight since pre thyroidectomy (4.5 years ago and 60kg) but have a feeling it will be harder this time. What I would like is: 1. advice re levo dose and how to provide an argument against reducing. 2. Advice re vitamin/mineral supplements. Results
Ferritin 32ug/L. R 30-150
Foliate 25.7 nmol/L R 8.83-60 8
B12 81 pmol/L R 37.5-188
Vit D 38 nmol/L R 50-250
TSH 0.25miu/L R 0.27-4.2
Free T3 4.3 pmol/L R 3.1-6.8
Free Thyroxine 18.4pmol/L R 12-22
I left 24 hours between last levo and blood test.
Current supplements are slow release Vit C and omega 3 fish oil I do take immunosuppressants every 2 weeks for Birdshot Uveitis and have recently developed patches of ? psoriasis which mat be due to the particular immunosuppressants I take (adalimumab).
I did try and take Vit D a couple of years ago but it really agrevated my stomach (IBS and GERD)
Advice is very welcome .
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CarnelianT
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Hi many thanks for your reply. Only take Vit C (4 hours before levo which I take at bedtime) and omega 3 fish oil. Have been on omeprazole for over 10 years. I was on 20mg a day pre thyroidectomy (cancer) but now on 20mg twice a day (have passed left vocal cord) since thyroidectomy. Have ordered Thorne B complex. I am not vegan/vegetarian but not keen on red meat. What is your advice re supplements? Many thanks
You say you feel well and maintain low weight, BUT you have GERD and IBS which are likely caused by the low FT3 and low vitamin levels meaning you can't use your thyroid hormone properly.
Low ferritin could cause the vit D3 intolerance, worth working on that by eating chicken liver/pate a few times a week.
Did you try a D3 & K2 supplement in oil? Might help.
Thorne Basic B would top up your folate and B12.
Don't budge on dose. It's a tiny bit below range on TSH but barely noticeable.
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Request endocrinologist/GP to full iron panel test for anaemia
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
such good info here. I’ve copied the link to save it! Need to get my own iron levels up but such a tricky thing to do and on top of that there’s concerns about supplementing iron if don’t need it. Have you seen any sensible info SlowDragon about some people being naturally at a low level and that supplementing isn’t good for them ? My GP told me this.
Wow....lots to read and digest and I need to be proactive. I will certainly read through everything and start a plan ASAP . Thank you so much for your help.
This is invaluable advice. I have ordered Iron panel test. Have started Vit D sublingual today as my first supplement and will wait as you suggested before adding magnesium. I will obtain iron rich foods and then reassess iron issues once iron panel comes back. I will try and read all information you have provided over the next few days (sight impaired, so takes me a while😁). Many many thanks again.
T4 - Levothyroxine is a storage hormone that needs to be converted by your body into T3 the active hormone that runs the body and it is low T3 that causes the symptoms of hypothyroidism.
We generally need our T4 in the top quadrant of the range as this should in theory convert to good level of T3 ( hopefully over 5 ) at around a 1/4 ratio T3/T4.
The accepted conversion ratio when on T4 only medication is said to be 1 / 3.50 - 4.50 with the majority of us feeling at our best when we come in this range at 4 or under :
So with a T4 at 18,40 you are not even in the top quadrant of the range and your T3 at 4.30 shows your conversion ratio coming in at 4,28 so just wide of the centre point and over 4 showing your conversion of T4 into T3 compromised and a slowed metabolism.
When metabolism isn't exactly right for the individual you will have trouble extracting key nutrients from your food no matter how well and clean you eat.
Everywhere I researched suggested ferritin needed to be at least over 70 for any thyroid hormone replacement to work well and I now find I feel at my best when I maintain my ferritin up around 100 : folate at 20 : active B12 75 ++ ( serum B12 500++ ) and vitamin D up at around 100 :
Optimal vitamins and minerals will help and support your overall health and wellbeing better but you have some T3/T4 hormonal imbalance which is logical since you have lost your own natural thyroid hormone production.
The thyroid is a major gland and the controller of your physical, mental, emotional, psychological and spiritual well being, your inner central hearing 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 + 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 - Levothyroxine only medication :
Some people find that after a period of time the T4 doesn't seem to work as well as it once did and find by adding back in that little bit of T3 that they lost when they lost their thyroid - restores their health and well being :
Some people can't tolerate T4 nd need to take T3 - Liothyronine only :
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroid dried and ground down into tablets referred to as grains, and the original successful treatment for hypothyroidism for over 100 years.
Up until around 2000 all these treatment options were available through your NHS primary care doctor to prescribe to you as you both saw fit in order to restore your health and well being.
Currently if T4 only medication does not restore your health fully you will need a referral to an endocrinologist to be assessed for either T3 or NDT treatment options and local CCG/ICB financial restrictions may compromise your chance of being prescribed rather than your medical need.
Thyroid UK - the charity who support this forum - thyroiduk.org hold a list a patient to patient recommended endos and specialist, both NHS and private who are sympathetic and able to help patients restore their health and well being with the appropriate thyroid hormones.
Thank you so much for all of this information. It has really helped me clarify my situation and will aid me in my forthcoming discussion with the endocrinologist.
If you into openprescribing.net and then analyse - you can see by surgery and CCG / ICB area how active your surgery / area are in prescribing the other options of thyroid hormone replacement.
For T3 your enter Liothyronine and for NDT you enter Armour as the drug- though they are not drugs but thyroid hormones and available in some other countries OTC.
I too haven't a thyroid after being treated with RAI thyroid ablation in 2005 and became very unwell around 8 years later and fell into this amazing forum in around 2015/16 while researching low ferritin.
I failed to get anywhere in my area through the NHS and it is a bit of a post code lottery and I was too ill to travel further afield than the county I live in where I was refused both T3 and NDT.
I now self medicate and buy my own thyroid hormone replacement and run my own yearly full thyroid blood tests and am much improved and come back on here to give back as we are a patient to patient forum and want to ' payback ' and what makes this forum unique.
You might like a book - Your Thyroid and How To Keep It Healthy - written by a doctor Barry Durrant-Peatfield - who resigned his position - for patients and to enable patients better to self advocate - and though it reads as not relevant as we haven't our thyroids to keep healthy it is a basic easily followed book on body physiology and how everything is linked together and the cause and effect of what happens when this well oiled machine goes wrong for some reason and what you can do about it.
I am so grateful for all of your information. Whilst I said initially that I feel well, my version of feeling well is a long way short of how I used to feel before I was diagnosed with Birdshot uveitis and embarked on an aggressive treatment regime that left me with all manner of GI problems and adrenal insufficiency. It took 5 and a half years to get over the adrenal insufficiency and during this time had the thyroidectomy and radioactive iodine and literally had just one years break before starting the current immunosuppressants I'm on, so I had resigned myself to always feeling fatigued or 50 shades of knackered as I joke with my friends. Bit by bit I've reduced my hours at work due to the fatigue and my sight issues. I have been so engrossed in trying to maintain my eyesight and independence that I have neglected to look at the whole picture. I have some homework to do for sure and I'm so lucky to have found this group.
Yes I totally ' get it ' - I found myself in an ever decreasing circle of wellness as the symptoms of hypothyroidism are insidious and we talk ourselves into believing we can ' make do ' and that the medical profession must know best as after all we have paid for them to study all this and since they have seen it all before must know the answers and solutions.!!
Interesting I had laser treatment in both eyes in my 30's for uveitis - 20 odd years before a diagnosis of Graves Disease and no reason was given 'cept that maybe I had inflammation building up on my spine - and true, I did live with backache and prescribed NSAID and just wish now Moorfields had run a blood test then for Graves Disease.
The adrenals and thyroid work together and the adrenals tend to pick up the lack when the thyroid is struggling -
I have been supplementing adrenal glandular since reading Dr P's book and my stamina much improved and now I buy my own full spectrum thyroid hormone replacement and take Natural Desiccated Thyroid and feel so much better.
It is a massive learning curve but once you start you will find yourself getting better and it's a bit like doing a jigsaw puzzle with no picture - but slowly the bits of information start to fit together and when you get a corner piece out you feel encouraged to keep building and filling in your picture of your journey back to better health.
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