Hi, I have autoimmune hypothyroidism and I'm currently taking levothyroxine (25mg), but I've read that some people prefer taking NDT.
I'm thinking of getting a prescription for NDT from a private UK doctor, but I was also wondering if I could get NDT from a reputable online source without a prescription. Does anyone have any links to websites they use, and roughly how much does it cost to import into the UK?
Thanks
welcome to the forum
How long have you been on only 25mcg levothyroxine
How old are you
Standard STARTER dose levothyroxine is 50mcg and dose is typically increased slowly upwards in 25mcg steps over first 6-18 months until on full replacement dose ….typically that’s 1.6mcg levothyroxine per kilo of your weight per day
Please add most recent thyroid results and ranges
Strongly recommend getting full thyroid and vitamin testing done …you are highly likely under medicated and in need of dose increase (s) in levothyroxine
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
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
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)
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)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Tips on how to do DIY finger prick test
healthunlocked.com/thyroidu...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
guidelines on dose levothyroxine by weight
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
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.
Also here
cks.nice.org.uk/topics/hypo...
pathlabs.rlbuht.nhs.uk/tft_...
Guiding Treatment with Thyroxine:
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
onlinelibrary.wiley.com/doi...
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Hi, thanks for your replies, they are very useful.
I am 30 and have been on levothyroxine for 5 weeks. I am going to get thyroid function tests redone in a few weeks. I will also get the other tests – thanks for the links.
I had Graves’ disease but very rapidly recovered and felt great. However, a year later I had a relapse after a respiratory infection. I had hypothyroidism according to the thyroid function tests, though it was almost subclinical (suppressed TSH, T4 very slightly too high but normal T3). I very rapidly recovered again, tapered off the anti-thyroid drug until I was at 0 mg.
However, I found that I had a lot of hypothyroid symptoms, the worst of which were depression/tiredness. I felt very ill (zombie-like), though the objective results were almost borderline (just like when I had Graves tbh – the dr was considering not treating me in both cases). I feel much much better on levothyroxine and have started getting back into normal life, but I still don’t feel 100%. The reason for thinking about NDT was because of the studies saying that more people preferred it over levothyroxine, but I will keep going with levothyroxine for now.
I haven’t actually spoken to an endocrinologist since I finished my first round of Graves’ disease treatment (I had to go via my GP surgery when I felt that I had relapsed due to the pressures on the hospitals), so it feels like a bit of a Chinese whispers situation, and I’m not very informed, but your replies and this forum are very useful!
Likely you have very low vitamin levels
Also get coeliac blood test BEFORE considering trial on strictly gluten free diet
Please consider signing this petition for much needed funding for better testing, treatment and understanding of thyroid disease
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Will do 
Hello JJ-Thyroid ;
Graves is an auto immune disease, for which there is no cure, that generally gets diagnosed when your immune system starts attacking your thyroid as the thyroid is a major gland and can cause health implications throughout your body and said to be life threatening is not medicated.
Do you have your original TSH T3 and T4 readings at diagnosis and the antibody found positive and over range in your first blood test ?
With Graves you can have either stimulating and blocking antibodies controlling your thyroid function - as these extremes of symptoms vie for control of your thyroid - with there being periods where they ' burn each other ' - leaving you feeling relatively ' normal ' for you.
We do now have some research that you may find interesting ;-
pubmed.ncbi.nlm.nih.gov/338... -
Were your antibodies run again before you came off the Anti Thyroid drug ?
All the AT drug does is semi-block your own daily thyroid production while we wait for you immune system response to calm down - bit like an aeroplane plane put in a holding position waiting for a landing slot.
Possibly your thyroid has not fully reset itself yet - how long is it since you stopped the AT medication ?
All things Graves disease - elaine-moore.com
There were about 2 months between the end of the anti-thyroid treatment and the start of levothyroxine, and in between those timepoints, my T4 and T3 lowered and TSH increased. Don’t know if antibodies were redone, but I was told I was antibody positive when I was first diagnosed with Graves’ disease.
I know that I’m at risk of a relapse for Graves’ disease but when I was taking the anti-thyroid drug the second time round, after a few months I would regularly feel hypothyroid (even when taking half the lowest-dose tablet), so I’d rather have definitive treatment than take an anti-thyroid for another year or so.
I might have a bit of stimulating antibody activity going on, but it’s definitely dominated by blocking antibodies now. Would most people not take levothyroxine and just wait to see if the blocking antibodies reduced over time? I feel that I would be pretty non-functional if I just waited it out with no levothyroxine…
***Edit: Btw, I assumed that my thyroid might be being damaged over time so that even if there are eventually no antibodies, I would have to take levothyroxine or something like that for the rest of my life.
Just tagging pennyannie so she knows you've replied.
Use the repy button directly under the persons response to you for them to get a notification.
Thanks
Endocrinologist could treat with block and replace if necessary
Block with Carbimazole and replace with levothyroxine
Will keep this in mind, thanks
It takes considerable skill. experience and time to get the patient comfortable on the AT drug.
Where you feel ' well ' is a fine line between hyper and hypo symptoms and since you can experience hypo type symptoms when hyper - it all becomes very confusing as to where your T3 and T4 need to sit for you to feel well, and blood tests tend to run a few weeks behind symptoms.
Can you please confirm which antibody was found positive in your blood at diagnosis and was this found negative when you stopped the AT drug?
As detailed - we are looking at an immune system malfunction and your immune system having been triggered to turn and attack your body rather than defend it - and it takes as long as it takes for your immune system response to calm down.
Quite why this has happened is of course the 64 million $ dollar question and you can read further around possible causes and more holistic alternative treatment options through Elaine Moore's books and website.
Everyone's journey with Graves is unique to them, there can be genetic predisposition with stress and anxiety tending to be common triggers.
Definitive treatment would be a thyroidectomy or RAI thyroid ablation -
ncbi.nlm.nih.gov/pubmed/306...
Are your eyes affected dry, gritty sensation, watering, light sensitive ?
I have to say your symptoms do not seem to have been that life changing so I wouldn't recommend living without a thyroid as that certainly is not much fun.
You will still have Graves but having been flipped from hyper to primary hypothyroidism this is considered easily treated in primary care where routinely only one treatment option is available T4 monotherapy, out of a possible three - with many of us having to self source our own full spectrum thyroid hormone replacement in order to reclaim our lives after loosing our thyroids.
I had TRAb (17.2) at diagnosis, and anti-TPO (132 IU/mL [0.0 - 10.0]) was still positive after the first round of anti-thyroid medication. I don’t currently have the post-treatment TRAb results (I had regular contact with the endo back then, but she was not keen on me having the data, which I gather is common – I should have just got the results from my GP instead!). I will look into what happened after the second round.
I had slightly bloodshot eyes that teared up a lot (not normal tears, a thick water that flooded out when I blinked) in the mornings and evenings during both bouts of Graves’ disease hyperthyroidism, but this is mostly gone now (I had a very tiny amount of water about once in the last few weeks – unfortunately it was yesterday).
I did not know that blood tests tend to run a few weeks behind symptoms. I definitely will try to avoid definitive treatment, and thanks for the suggestion about Elaine Moore.
OK then - do you have the TR ab range please :
The TPO are more common with Hashimoto's AI thyroid disease but can run alongside when with Graves - but as Graves is considered life threatening Graves treatment with AT drugs takes precedence.
Please ensure any eye drops, lotions and potions you use are all Preservative Free - even those prescribed.
Have you been referred to a specialist ophthalmologist ?
You might like to consider checking out the Thyroid Eye Disease Charitable Trust - tedct.org.uk - as I understand things they can signpost you to specialist clinics throughout the country where endos and eye consultants with an interest in this field of work finding optimum medications to ease symptoms being experienced.
Not sure of the range, and it would be difficult to get even via my GP because during my second bout of Graves’ disease, I was deregistered from my GP surgery and registered with a GP surgery in a different county (they moved the wrong patient records ☹). My GP surgery made me reregister and so my online record with them starts from the reregister date.
Thanks for the other advice!
The hospital where you were diagnosed should have a record - and a letter should have been sent out to you with all the necessary information.
Just contact the secretary to the Endocrinologist Department for a copy of your original TSH, T3 and T4 readings and ranges and the medical evidence of the positive antibody results and range.
Sounds like a bit of a ' fuff ' I guess - but it's better to start off with the correct information.
That sounds awful. & may be able to be corrected if they set your parameters at your date of birth rather than registering date. There was a post about this allowing prospective record. I will try to find it later & add link.
Is that definitely a TRab measurement? -and not TGab.
TRab = TSH (or trytropin) receptor antibodies - (measures stimulating, neural & blocking antibodies)
TGab - TGab (Thyroglobulin antibodies)
TG antibodies are often tested alongside positive TPO - TRab is often specialist test arranged separately.
It would be a very high TRab result.
I'm fairly sure it was TRAb. It was a pretty severe case of thyrotoxicosis initially (I was hospitalised for a few days). I will look into everything though...
Do you remember how long you took carbimazole for & what were the doses. TSH is unreliable & levels fluctuate with autoimmune. You can be hyper for a time & the TSH can stay low or lower than what it should truly reflect.
It’s your FT4 & FT3 levels are what you really need to know starting on a low dose can sometime be counter productive because it doesn’t top up thyroid levels it replaces what thyroid can’t produce. So by 6 weeks you are due an increase.
You likely need several steady increases and optimal nutrients before looking at alternatives.
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