Does anyone know where to obtain NDT in the UK, can my doctor write the presentation? I seriously need off this levothyroxine
Obtaining NDT? : Does anyone know where to obtain... - Thyroid UK
Obtaining NDT?
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Jojomcc
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SlowDragonAdministrator
You won’t get NDT on NHS
It’s extremely expensive privately
You might eventually get T3 on NHS
First step
Get FULL thyroid and vitamin testing done privately
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)
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
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
See endocrinologist with results
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to getting T3 on NHS
thyroiduk.org/contact-us/ge...
I know I can't get it on the NHS, what I mean is to buy it privately can my GP write the prescription and I give it to the online pharmacy of choice, ?
Your GP may not want to take responsibility for prescribing NDT privately, as it is an unlicensed medication. But as this is down to the individual GP to decide, you will need to ask.
Ok, I'll ask, I'm willing to try anything at this point to get off levothyroxine
Do ask, but don't get your hopes up. Also, it can be very expensive, at least partly due to the fact it has to be imported from outside the UK.
No I won't, and I will pay whatever I need too 🙏🏼 I just want to feel better, I've been on levothyroxine over 2 years and I swear it's making me more ill
There are doctors on the list I gave you that do prescribe NDT privately
But it’s worth trying Levo plus small doses T3 first
A) significantly cheaper
B) possible to eventually get on NHS
But for any thyroid hormone to work well, important to test and maintain GOOD vitamin levels
I do already take levothyroxine, have done for 2years, but I swear blind it's making me feel more ill and I have already had all vitamins tested, I already take vit d3, vit c, iron, b complex, magnesium and selenium
Please share your latest results for TSH, FT4 & FT3. If GP only tests some of these I recommend buying a private test. Star a new post with the results.
Its cheaper to add T3 to Levo than buy NDT.
No I had only two of these tested, TSH was 0.66 (0.27- 4.2 ) and t4 was 13.8 ( 10-22 ) t3 wasn't tested these are the worst they've been, but my doctor are saying my TSH is telling me I'm getting enough medication 🙄 but I feel like shi*E
So you are correct in thinking your FT4 is far too low. Its only 32% of range and likely needs to be well above 70%.
Doctors often only rely on TSH, believing its the best indicator of thyroid function but its comletely unreliable in reality.
It pays to get an early morning blood test as TSH is highest forst thing in the morning before 9am.
Leave 24hrs between last dose of Levo & blood test and do the test fasting that moring, only drinking water.
Suggest your next step is to get key vitamin levels tested either by GP or privately. Low vitamin levels can alter TSH.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, 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.
The wrong dose of levothyroxine can certainly make you feel more ill. Some people are also sensitive to certain brands of levothyroxine. As Jaydee1507 has suggested, do share your most rcent thyroid blood test details. It would be far better to try fine tuning your levothyroxine medication before jumping in at the deep end with NDT.
I must respectfully disagree here, I dont think after struggling on for two years on Levo that Jojo is jumping in at the deep end. Some people dont ever feel well on just Levo alone, irrespective of brand or fine tuning.
I certainly didnt. If they did this forum wouldnt be as busy as it is. I think two years is long enough to give Levo a chance. There comes a point when you realise you have to look at other options.
'Some people dont ever feel well on just Levo alone, irrespective of brand or fine tuning.'
I totally agree with you on that. But until Jojomcc shares the relevant information, we can't know whether or not it's worth her making the change over to NDT. Over the years, we've seen other members blindly 'jump in at the deep end' with NDT, only to eventually realise it isn't the magic bullet for them. We are here to help, not to hinder 😊
Well nothing is a magic bullet in my experience, but some thyroid meds are better or worse than others.
Agreed. But finding the brand of NDT that works for the individual can also be tricky. Been there, done that myself. They are not all the same, and as is so often the case with levo and Lio brands, what works for one doesn't necessarily work for another.
I was fine for the first year/ year 1/2 ...on the same brand through-out, am now taking 150mcg ...Then all of a sudden my symptoms came back, T4 is in lower end of the range, am I just feel awful, but my doctors want to up them but I want to change to something else hence my query
Please add most recent TSH, Ft4, Ft3, vitamin D, folate, ferritin and B12 results and ranges
Testing as recommended early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
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
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) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70:
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
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 5-7 days before testing
Medichecks iron panel test
medichecks.com/products/iro...
Being on inadequate dose levothyroxine or poor conversion will make you feel rough
Do you always get same brand levothyroxine at each prescription
My last test results were as follows,TSH 0.66 (0.27-4.2)
T4 13.8 (10-22 )
Ferritin 79 (13 - 250)
Folate 8.4 (3.9 - 26.8 )
b12 ..502 (179-771)
Vit d .. 66 (25 - 200 )
I understand some of these are low but I'm supplementing, these are better than they were last time they were tested
was test early morning and last dose Levo 24 hours before
Which brand Levo
Free T4 (fT4) 13.8 pmol/L (10 - 22)
Ft4 only 31.7% through range
No Ft3 result
Many on just levothyroxine will need Ft4 at least 60% through range minimum
folate and vitamin D too low
How much vitamin D are you taking
What B complex are you taking
Test was at 8.50am, and no levo that morning, I normally take it at 6am but last dose was the morning before, but according to my doctors this ft4 level is fine because my TSH is telling me I'm getting enough meds, 🙄 vit d I'm taking 1000ug per day, and it's red label b complex, but these vitamin levels were 3 months ago, except the vid d which was about over a month ago ... I'm going to ask my GP to redo them all again
So your low Ft4 says you need dose increase in Levo
Vitamin D at 1000iu is low dose
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 3 sprays per day and retest in 2 months
Test twice yearly when supplementing
Can test via NHS private testing service
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
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 and will help improve B12 levels too
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
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) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70:
You also have the option of buying Thai NDT, known as Thyroid S, its available online and I dont think you need a prescription. We have several members who use it, you could try asking them to private message you with reliable suppliers. It will be cheaper than going to a private doctor or Endo and getting Armor or Erfa prescribed, these can be very costly.
I sympathise because I never felt well on Levo I struggled on for 2.5 years, taking ever increasing amounts of Levo ( 200mcg at one point) and there came a point where I had to try something new. In my case I added a bit of T3. As Red Apple wisely said though NDT might work for you, but it might not. Some people find it transformative, others cant tolerate it.
Where would I be looking for this Thai NDT ?
Jojomcc, It's important to be aware that scammers lurk here on this forum, waiting to message you with information you've asked about. Please read this post carefully and act on the advise given in it.
📢 ⚠️ Purchasing thyroid (and other) medication without prescription - Please Be Wary! ⚠️ 📢 healthunlocked.com/thyroidu...
As I said you can ask on the forum for private messages to be sent with recommendations of sources other members use. We have several who self source Thyroid S.
You say you felt fine for the first year, year and a half of taking T4, then you suddenly felt worse - was that soon after you started 150mcg of levo, or had you been taking that dose for a while? Is there anything specifically you can correlate with taking that dose, e.g. stiff joints, painful muscles, or is it a general feeling worse? What was the brand of T4 you felt good taking and what was the brand you took when you increased to 150mcg? Have you asked to trial some T3? If you would you consider seeing a private endocrinologist, what part of the country are you in, just general area is fine?
I had been taking that dose for a while, maybe 5months before I felt symptoms creeping in slowly, now I'm at the point I literally feel as tho I'm in my road out 😔 and it's the accord brand, it's always been this brand...I've always had joint pain even from the beginning especially in my knees, but the pain subsided and now I just have the rice Krispies cracking sounds in both 🙄 I have asked my doctor but they said they don't prescribe T3, I was referred to an endocrinologist but that was 2 years ago come April, still waiting, I would see a private one if I had too
GP's arent allowed to prescribe T3, its expensive and has to be initiated on the NHS by an NHS Endo. Obviously some Endos more T3 friendly than others.
I wouldn’t feel comfortable being prescribed NDT or titrating it with a GP, it’s not their area of expertise and I’m being generous!
I could not get NHS treatment. I went with a private thyroid Dr on the Thyroid UK list, who prescribes NDT. I’m prescribed Armour and vits and minerals are recommended. I’m happy with my care. I’m doing well, it is working, I’m at titration and many symptoms have disappeared. I can message you if you want the name.
Yes thanks, 🙏🏼 please do
SlowDragonAdministrator
Is your hypothyroidism autoimmune?
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)
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
nice.org.uk/guidance/ng20/c...
Or buy a test online, about £20
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
restartmed.com/hashimotos-g...
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Post discussing gluten
healthunlocked.com/thyroidu...
Recent research in China into food intolerances with Hashimoto’s
healthunlocked.com/thyroidu...
More interesting Chinese research on Hashimoto’s and leaky gut
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