I’ve just joined this group having recently been diagnosed with hypothyroidism/ hashimotos after a year of being sub clinical.
Both my GP and private endo refuse to precribe NDT or T3. I have found great private GP who had prescribed me NDT but I’d like to also see another endo who is less dogmatic than the last (don’t anyone go and see [ doctor name redacted ] - dismissive and unhelpful).
Does anyone know of good open minded endo in London or Bristol who is patient centred and happy to prescribe NDT and T3 if necessary ?
Thankyou
Written by
LucyYoga
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Hi, thankyou for the above and yes to all of the above and some!
I was diagnosed with subclinical hypothyroidism a year ago and offered levothyroxine by my GP due to my symptoms but that was and is not a route I wanted to go down. I wanted to find the root cause of what was driving the hasimotos/ hypothyroidism and not just symptoms management.
This past year ive been working with a functionally trained forensic nutritionist and naturopath. Ive had multiple functional diagnostics done in US and Denmark including food intolerance tests across multiple arms of the immune system (adaptive and innate) looking at IgE, IgG and complement and IgG4 responses, all vitamin and mineral status checked, Advanced intestinal barrier tests looking at DAO, histamine, zonulin and lps (essentially looking to see how leaky my gut was). Plus stool samples to analyse my gut microbiome and look for pathogens, bacteria, parasites etc.
I follow a carnivore based diet that is AIP compliant. Essentially my diet consists of grass fed/finished organic meat, wild fish, healthy organic oils (tallow, coconut oil, olive oil),bone broths, grass fed liver, low lectin, low oxylate, low salicylate, non cruciferous organic vegetables, berries and a bit of raw honey. Obviously no caffeine, alcohol etc. Ive been eating like this for over a year.
I take rosita extra virgin cod liver oil, Vit D and K, liquid magnesium, oxygenated magnesium, liquid minerals (iodine, selenium, chromium, zinc etc), copper, wild grass fed beef organ supplements, methylated b complex, vitamin c, various probiotics, tyrosine.
My vitamin and mineral status is now optimal and I have healed my leaky gut.
I felt much much better over the summer and my thyroid labs were returning to normal ! My anti Tpo halved! Then ive suddenly gone massively downhill these past 2 months and my labs have got much much worse. My TSH was 30 when I got it tested 2 weeks ago.
Ive just had a mycotoxin panel back from the US showing that my body is riddled with mycotoxins (mould metabolites), particularly a strain I have in very high amounts that disables the immune system! It is these mycotoxins that I believe are essentially what are driving the autoimmunity and therefore hypothroidism.
Ive spent the last year researching and researching root causes of hypothroidism- physical, mental, emotional and spiritual. Toxic mould seems to be an important physical root cause/driver for many people. Especially this time of year when the weather gets damper and mouldy.
I have never taken levothyroxine.
My decision not to take levothroxine from the beginning is based upon the fact that firstly I do not want to take a synthetic, pharmaceutical drug unless there is no other option and secondly as my liver has been and is stressed, T4 monotherapy will invariably be ineffective as my liver will not be able to effectively convert T4 to T3. This was always my gut feeling but now has been confirmed by the mycotoxin panel result- mycotoxins interfere with and suppress the enzymes responsible for T4-T3 conversion.
I have just got a private prescription from a wonderful thyroid specialist who is recommended on one of your links. She has prescribed me NDT which both my GP and Private endocrinologist refused to administer despite not being able to cite me any references or research papers as to why it would in any way be effective.
I am about to start a mycotoxin detox protocol with my functional nutritionist and hope that when i clear the mould from my body i can put the hashimotos into remission and come off the NDT.
This is possible- i have spoken to people who have successfully done this.
Ive found both my GP and private endo to be pretty clueless around all of this and have had to do all the research myself.
'I do not want to take a synthetic, pharmaceutical drug'
To clarify, levothyroxine is not a drug. It is a replacement hormone, in the same way as sex hormone HRTs are. T3 (liothyronine) is also a replacement hormone.
Desiccated thyroid (NDT) is also produced in a lab by pharmaceutical companies. By the time it's gone through all the processing, it's not really very 'natural'. That said, without doubt it does work a good deal better for some people.
'Ive found both my GP and private endo to be pretty clueless'
Yes, this is quite typical expereince for by far the majority of thyroid patients.
'just got a private prescription from a wonderful thyroid specialist'
Excellent! Good luck with this and do keep us posted on how things progress for you.
Thankyou for your response- my mistake in branding it a 'drug'. It is however synthetic and less natural than NDT. I think you understand the point im making!
I do understand the point you're making. But the fact is, levothyroxine has improved the quality of life for millions of people. What would happen without this 'synthetic' hormone replacement, I cannot even begin to imagine. Please don't 'throw the baby out with the bath water'. Especially as you've not even given it a chance yourself.
Don't get me wrong, I'm absolutely not advocating T4 only for everyone. Many of us do need the addition of T3 (synthetic), and/or desiccated thyroid. But honestly, in the end, it's your quality of life, and therefore what replacement hormone works for you, that matters. Not whether it originated from pigs/cattle, only to be highly processed into convenient little pills in a lab.
So often, the reason levothyroxine alone doesn't seem to work for people is that they are not on the appropriate dose. Thyroid hormone levels are an individual thing and shouldn't be judged on lab test numbers alone. Unfortunately, this is what todays medical profession are obsessed with.
Thankyou for your concern but as I said in my original post, I have no judgement of what anyone else does and my preferences are based upon PERSONAL choice, not dogma. I know what my body needs not someone else!
I am simply sharing my experience with the view to help others not to castigate or convince them otherwise.
Incidentally, NDT was successfully used for over 100 years before Big Pharma introduced levothyroxine, the very same pharmaceutical companies that provide the research grants and funding for trials that suggest levothyroxine is superior and unphysiological!
Welcome to the forum! The admin and members here have lots of knowledge and personal experience of thyroid issues.
Once you post your most recent blood test results they can make suggestions for you.
I read your info, very interesting. I saw that you take an iodine supplement? Are you deficient in iodine? Though bit concerned as I beleive iodine is not recommended if you have Hashimotos? I'm sure someone will correct me if I've got that wrong.
Sorry I don't have any endo recommendations. Hopefully you'll get some from other forum members.
re iodine …most people are actually deficient in iodine inless they consume a diet which contains processed foods and refined table salt, nether of which I do. All the functional doctors and naturopaths I have spoken to recommend I supplement with it. The supplement ReMyte that I take, which contains iodine, has been specially formulated by medical dr and thyroid expert Dr Carolyn Dean to support thyroid function. And since up to 95% of hypothyroidism is caused by hashimotos iodine in most people is deficient.
Although I don’t follow lugol’s iodine protocol I know of a couple of people for whom taking large doses of iodine actually put their hypothyroidism/ hashimotos into remission!
Obviously there is a plethora of conflicting information out there much of which seems to be based upon conjecture, and I am following what works for me based upon my own research and wisdom of the multiple functional experts I’ve seen.
I know of no specific research papers or evidence that cites iodine as contraindication for hashimotos but if you do have any then please forward them to me.
It's good that you are working with specialists that can advise you on how to take iodine supplements.
I have an iodine deficiency found after I did a 24 hour urine test. I don't have hashimotos but beleive my thyroid problems have possibly been caused by my deficiency as I have a multinodular goitre and recently had surgery to remove a large nodule.
Unfortunately the ENT surgeon and endo that I have been seeing since the beginning of the year have told me not to supplement as it would complicate my situation.
If you have a search on the forum the subject of iodine always results in interesting discussions. I'll have a look to see if I can find any research papers on the subject of iodine and hashimotos.
There are also those that feel that for some patients, NDT medications may actually be perpetuating the autoimmune attack due to the fact that they contain thyroglobulin and TPO antibodies (since they are formulated from animal thyroids).The bottom line is that different people will do best on different medications.
A practitioner must monitor a medication’s effectiveness, checking labs and symptoms. If someone starts feeling worse on NDT medications or has an increase in thyroid antibodies, I’d then recommend they switch to a compounded T4/T3 medication (using synthetic hormones).
Levothyroxine alone works for many people, if they are on high enough dose, all four vitamins at good levels and food intolerances addressed
Many many members on here find the addition of small doses of T3 alongside levothyroxine is more flexible than NDT …….and certainly vastly cheaper
Costs is a big consideration for many thyroid patients, many of whom are too unwell to work
Over 60,000 prescriptions on NHS for T3 in England in last year and increasing, as price has dropped
Click on "Read the list of available tests" and on page 3 of the pdf you'll see
Urine Iodine Test:
Specimen requirements: Urine
Cost: £71.00
Order Code: END25
Turnaround time: 5 - 10 days
Iodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health.
Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.
Iodine use to be used to treat hyperthyroid patients
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