I’ve just had a whole raft of blood tests done, most have come back as ‘normal’ They did not test my thyroid function other than a TSH which came back at 3.10. As I am a smoker I guess this may be higher but I don’t know by how much.
The only thing that has come back as positive says:
Nuclear autoantibody screening test Strong Positive Further work to follow.; Potentially abnormal
Does anyone know whether this is significant? Thank you.
Theres no information in your profile.
What are you currently taking for your thyroid condition?
Suggest you buy a private test kit for TSH, FT4 & FT3 plus key vitamins ferritin, folate, B12 & D3. Start a new post with the results.
What are you supplementing vitamins with?
How do you feel?
A TSH of over 3 is too high for someone on replacement hormones.
Thank you GlowCoach. I've had thyroid problems since I was 11, starting with Graves misdiagnosed for a long time. Then in my 20's it started again, misdiagnosed for years and finally had a sub total thyroidectomy. Believe it developed into Hashi's so years more of problems before I was started on thyroxine, and even then I had to go private to get it.
Currently have been very unwell to the point of disability and have been trying to get off Levo over the past 4 years (I know I should have known better) complicated by severe bile duct problems with recurring stones (apparently thyroid makes you very prone to this - who knew?)
More recently diagnosed with Sjogren's which I think I have probably had for years, I also have type 2 diabetes.
Feel absolutely dreadful, my current dose is 75 Levo, doctors have me on 50 but I'm going to increase to 100 while I work out whether to try Metavive or try to fins a cheaper source of NDT. Vitamin B fine and I take Vitamin D and K2. I react badly to most medication (I think my liver can't be processing things properly)
I have given up on the No Help Service now as they don't care how ill you get, I'm now in my 70's so clearly don't have forever to try and get some quality of life back. This is a shocking illness that completely robs you of a life, and it shouldn't be, if doctors treated us properly there would be far less suffering.
I though the THS was way too high, but when doctors keep telling you it's fine you begin to doubt yourself!
Exactly what were your results for ferritin, B12 & folate?
No thyroid hormone works well until vitamins are OPTIMAL.
Why are you trying to get off of Levo?
Keep pushing with different doctors for an increase. Ask for it on a trial basis which often goes down better.
Thanks for that.
Serum folate level 14.2 ng/ml [3.0 - 20.0]
Serum vitamin B12 level 499 ng/l
.Serum ferritin level 44 ug/L; 30-100ug/L
I'm having nothing more to do with doctors who are happy to let you rot and I can no longer afford to go private which is why I'm seeking to self medicate with some type of NDT. Worked really well for me when I was on Nature Throid which was a really good medication, need to find something similar.
Tried to get off Levo because I react so badly to most medication and thought it might be making me worse instead of better.
Ferritin is far too low
Aim to maintain over 70
No vitamin D result?
Can't find it, surgery website difficult to use, but I'm taking supplements with Vitamin K2 so should be okay. I use Solgar vitamins, what would you suggest for Ferritin?
Unfortunately there isnt really a replacement for Nature Throid and Armour is very expensive, Thyroid-S hit and miss.
Have you tried adding some T3 before? Your FT4 needs to be higher before you do that though and all vitamins at optimal.
The B12 result you have is for serum B12. Your active B12 may well be lower, would recommend a private test to be sure.
See link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Unfortunately I live in Wiltshire so can't access the walk in centres. Still debating whether to give Metavive a go but don't want to make things any worse than they are.
Did get some T3 some years ago but it raised my blood pressure significantly, but I was trying to follow a protocol as suggested on the forums so probably took too much.
Used to take B12 but it never made any difference.
I'm really struggling at the moment and even more so with deciding which way to go with NDT which I think is my only realistic option.
Just taking one supplement for one vitamin isnt enough. We need all our ducks in a row, not just 1.
Levo is never going to make you well unless you take enough of it and get vitamins optimal, all of them.
How much levothyroxine are you taking
Obviously you need Ft4 and Ft3 tested
TSH over 2 suggests you need next dose increase
Do you always get same brand levothyroxine at each prescription
Essential to test vitamin levels too
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
NHS only tests TG antibodies if TPO are high
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What is reason for your hypothyroidism
Autoimmune?
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
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
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/testing/priva...
Thank you so much SlowDragon, please see my reply to Glow Coach above as it covers a bit and I don't want to repeat. I have only been on 50 since I restarted after giving it up (Iknow!) upped it to 75 a couple of weeks ago and will up it to 100 next week. But this is only until I can decide whether to give Metative a try or if I can find a cheaper supplier of NDT (not having a lot of success with that at the moment)
Have decided to treat it myself purely by symptoms, I've had a lifetime of ill health and I'm so tired of the battle with the No Help Service. Can't afford private tests at the moment but after the past 4 years of hell I am certain that my thyroid is at the bottom of it all, how that didn't resonate with me until now I have no idea!
upped it to 75 a couple of weeks ago
Was test done on just 50mcg?
Only do full testing after 2-3 months on 75mcg
Changing dose to fast will not work
You need minimum 6-8 weeks at each dose
Which brand of levothyroxine are you taking
Ideally always get same brand at each prescription
EXACTLY what vitamin supplements are you taking
Test vitamin levels once a year alongside thyroid levels
Low vitamin levels highly likely when under medicated and/or as we get older
You will have to test privately to make progress
test just thyroid 2-3 months after each dose or brand change in Levo
Just TSH, Ft4 and Ft3 test - £32
monitormyhealth.org.uk/thyr...
10% off code here
thyroiduk.org/testing/priva...
Randox FULL thyroid test including both thyroid antibodies just £31
Test at home or in clinic
Also available via Amazon
randoxhealth.com/en-GB/at-h...
I'm on Accord and had only just increased it prior to the test. Will probably have to increase to 100 next week as run out of 75 and surgery not responded to my request for 75's.
Thank you so much for the info about Randox, that I can afford, brilliant help. It's odd though, doctors don't take any notice of private tests, I had several Cortisol tests done privately, all came back high but the NHS tests said normal.
High cortisol is common when on inadequate dose Levo as adrenals try to compensate for lack of thyroid hormones
Retest thyroid levels after 3-4 months on 100mcg
doctors don't take any notice of private tests,
Monitor My Health test is done by NHS private testing service
Just TSH, Ft4 and Ft3 test - £32
monitormyhealth.org.uk/thyr...
10% off code here
thyroiduk.org/testing/priva...
Give dose time to settle
Meanwhile get vitamin levels tested …..ideally via GP
Or test B12, folate and ferritin here ….NHS test
monitormyhealth.org.uk/anae...
10% off code here
thyroiduk.org/testing/priva...
Vitamin D
NHS easy postal kit vitamin D test £31 via
Aiming to maintain vitamin levels at
Vitamin D at least over 80nmol
Serum B12 over 500
Active B12 over 70
Folate at top of range
Ferritin over 70 minimum
Most hypo patients need to supplement vitamin D, magnesium, vitamin B complex daily and continuously to maintain good vitamin levels
Test vitamin levels here with thyroid once year going forward
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/testing/priva...
Thank you so much for all your help and support, I really appreciate it. It's such a minefield when you're trying to deal with it all by yourself, although having had this thyroid nonsense for 60 odd years you'd think I'd got used to all the medical stupidity by now!
I only recovered my health with knowledge and support on here
Fine tuning dose Levo to maintain Ft4 at least 60-70% through range
Plus GOOD vitamin levels are essential for good conversion of Ft4 to Ft3
And frequently essential to always get same brand of levothyroxine
Gluten free diet and/or dairy free often beneficial or essential if your hypothyroidism is autoimmune
If after all these steps ……if Ft3 remains low in comparison to Ft4 ……then is time to see endocrinologist to get SMALL dose T3 prescribed alongside levothyroxine
Increasingly this is possible on NHS
Over 67,000 prescriptions for T3 in England in last year
openprescribing.net/analyse...
Yes, it's a really great resource. I've had to fight really hard to get a consistent source of Levo. I also do not have lactose as I have an intolerance despite the NHS saying I don't. I do lapse with the vitamins sometimes but take the essentials always.
I really don't think that Levo suits me though so am having this big struggle about what to get.
Vencamil is excellent Levo
Only brand that is lactose free and Mannitol free
How to get prescription written for Vencamil
healthunlocked.com/thyroidu...
How to get Vencamil stocked at your local pharmacy
healthunlocked.com/thyroidu...
Posts discussing Vencamil
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu....
I was astonished to find dairy free diet has been as important for me as gluten free
Well that is interesting, I could try but sadly my GP who would have prescribed it has gone and retired and now I am really stuck.
I was astonished to discover a lactose intolerance, suffered with severe diarrhea for 20 plus years and given all the usual guff from doctors, they eventually did a test and said I wasn't. So I gave up lactose and guess what? diarrhea stopped within a couple of days, honestly - you couldn't make it up.
Thank you for the links, I will look into that now.
GP is obligated to add note to all future prescriptions saying LACTOSE FREE as per GOVERNMENT guidelines
Suggest you insist on this or ideally get brand specified as Vencamil
Government guidelines for GP in support of patients if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
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.
The only NDT that’s lactose free is Armour
I've already tried with my GP for lactose free but no matter what I do the pharmacy does what it wants. At least most recently they have keep to the same brand.
I think Armour might be my only option but I'm weighing it up against Metavive.
Politely insist you get note added to prescriptions as per guidelines
Pharmacy has to supply brand of levothyroxine listed
If I ever go and see a GP again I will give it a go but I'm so off the NHS it may take me a while!!
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