Fed up with my local NHS GP's approach to my hypo symptoms which led to a personal wobble/sulk/hissy fit at my last appointment in January which subsequently lasted until last week when I was due a 'medication review' before my Levo would be released I once again am seeking the wealth of knowledge from forum members regarding self treatment.
I'm curious as to how forum members self medicate to regulate hypo symptoms and blood levels and why you came to the decision to self medicate (I assume most of you lost faith in the [inadequate] treatment offered of hypo patients offered by our publicly funded health care system and decided to take a more proactive approach to restore health).
I am seriously considering this path myself, but am first looking for general advice as to what my options actually are. Initially, I was thinking of taking the private route with a functional doctor, but research has revealled this would potentially be an additional strain to already stretched household finances.
I was advised to consider sourcing my own medication or OTC "supplements" from outside of the UK and use in conjuntion with my NHS prescribed Levo. This is unchartered territory that I don't feel particularly comfortable with without fully understanding the benefits and pitfalls.
Am I right in thinking some countries will sell and ship Levothyroxine or Liothyronine without prescription? Is Thyroid-s, Metavive, TR by TMan etc considered supplements as they don't state the quantities of porcine thyroid? I am aware there is a looong delay in obtaining some of these products due to Swine flu and Covid so would bovine thyroid be a better option? How do I decide which is the most viable route for me and how would I decide what dosage to start? I assume it will all be a bit trial and error?
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Thanks for your response. I will definitely take a good look through your posts. I am keen to get a better perspective and understanding of the options available. I've realised since joing this forum and previously heeding previous forumite's advice that the best course of action is to become your own health advocate. I'm just keen to do that safely and with caution.
I actually took a medichecks Ultravit test this morning (first since January due to my despondency after my last GP appt) as I suspect despite supplementing Vit D, Ferritin and B12 my levels will still be low. Also expecting a slight TSH raise and T3 dip based on previous bloods. I shall post the results as soon as available.
I self-treat, but not so much because of the inadequate treatment, as the blatant ignorance of the majority of doctors who look down their noses at you and spout outright lies, debunked myths and astounding works of fiction that they just invented off the tops of their heads. I've heard some things that would make your toes curl, over the years. And I think to myself, do they really think I'm that ignorant/stupid that I would believe that load of cow dung? I just got tired of being taken for a fool by people who knew less than me.
I was thinking of taking the private route with a functional doctor, but research has revealled this would potentially be an additional strain to already stretched household finances.
More like an additional strain on your patience! Functional doctors tend to have some very strange - not to say dangerous - ideas about thyroid and how to treat it. And, paying for doctors, rather than getting them on the NHS, does not guarantee better treatment because they all had the same education - or should I say, lack of it. It's often a total waste of money.
I was advised to consider sourcing my own medication or OTC "supplements" from outside of the UK and use in conjuntion with my NHS prescribed Levo.
Well, depends what you mean by 'OTC supplements'. If you mean things that call themselves 'thyroid support', then don't. For 'support', read 'stimulation' - i.e. iodine. And that's the worst thing a hypo can take.
Then there are glandulars... things with no hormone in them - or undeclared amounts of hormone - that can really mess you up because you never know quite what you're taking.
What you want, is Thyroid Hormone Replacement - i.e. levo (synthetic T4), liothyronine (syntheticT3) or NDT (T4 and T3 from pig thyroid). These are not classes as 'supplements', and in the UK would not be OTC. They are in some countries, but less and less countries, now.
This is unchartered territory that I don't feel particularly comfortable with without fully understanding the benefits and pitfalls.
And, this brings us to rule number one for self-treatment: you have to know what you're doing. So, first of all, you have to educate yourself. You have to know at least the basics of how the thyroid works, and what thyroid hormone does.
Secondly, you have to get full labs done privately:
TSH
FT4
FT3
TPO antibodies
Tg antibodes
vit D
vit B12
folate
ferritin
When you've got the results - and ranges - for all that, you can post them on here, and people can advise you what you need and how to go about taking it.
Thirdly, you have to ask where to find the thyroid hormone replacement of your choice. People will PM you replies with links, because we're not allowed to post names of sites on the open forum.
Is Thyroid-s, Metavive, TR by TMan etc considered supplements as they don't state the quantities of porcine thyroid?
Thyroid S and TR by TMan are NDT. They do state the quantities of T4 and T3 Meravive is a supplement. It doesn't.
I am aware there is a looong delay in obtaining some of these products due to Swine flu and Covid so would bovine thyroid be a better option?
I'm not sure quite how badly swine flu is affecting supplies right now. But COVID would affect bovine thyroid just as badly as pig thyroid. So, no advantage there.
How do I decide which is the most viable route for me and how would I decide what dosage to start? I assume it will all be a bit trial and error?
As I said above, you have to get the labs done first, and they will guide you - with a bit of help from your friends on here! But, it will, of course, be trial and error. It always is - if doctors allow you to do that. But, there are rules for taking hormones: start low and increase slowly. Follow those rules and you shouldn't go wrong.
Once again, thank you for your response. I feel quite confident I will obtain all the help I will need from these forums to move forward. Certainly forum advice has got me this far. I neglected to mention in my OP I ran a Medichecks UltraVit (first test since my miserable Jan GP appointment which I know is neglectful of me) test today, so will post those results when they are ready.
You've clarified NDT, supplements and glandulars. I seem to have confused myself regarding the differences. So thyroid support is out. A waste of time. Presumably a waste of money as they offer no benefit. I should focus on either synthetic T4 or T3, naturally derived hormones (I assume NDT will require a prescription?) or hormone supplements? Strongly assuming my GP would not write a private prescription to self source NDT would I not need to see either a private or functional doctor to write me one, thus increasing costs? I don't want to base treatment on cost alone, but obviously it is a factor I have to take into account.
So thyroid support is out. A waste of time. Presumably a waste of money as they offer no benefit.
Worse than that, they could be dangerous. Excess iodine can cause all sorts of problems, including thyroid cancer. And, they often contain calcium, for some reason, which is difficult to absorb, and can build up in the arteries.
I assume NDT will require a prescription?
It is possible to buy it on-line, without a prescription.
A private doctor doesn't have to be a functional doctor. But, not a lot of private doctors are willing to prescribe NDT because they just don't know what it is. If you're going to self-treat, go the whole hog, and don't rely on any doctor, private or otherwise.
I found this site in 2017 as I was searching for low ferritin implications after over 2 years on a NHS not so Merry Go Round and referred to by my doctor as a conundrum.
It's been a massive learning curve for me and just wish I knew what I now know back in 2003 when diagnosed with Graves Disease and treated with Radioactive Iodine.
I'm now self medicating and am so much better it seems unbelievable that at around 70 years of age I found the will power to read. reread and write out lines as in detention, and became my own dyslexic doctor.
Apart from reading up on the Thyroid uk website you'll pick up a lot from simply reading of other peoples situations and the answers they receive.
There is one book that helped me which is written by a doctor who has hypothyroidism : Barry Durrant - Peatfield writes in an easy to understand sometime funny way and I still refer back to the book : Your Thyroid and How To keep It Healthy when necessary.
The other book I purchased is relating to Graves Disease and again written by someone with the disease, Elaine Moore. Elaine has gone on to write several books about AI thyroid disease but think you have Isabella Wentz in your corner as she actually has Hashimoto's. Disease.
I was virtually housebound a few years ago and sofa stuck, and needed to spend over a year building up my core strength vitamins and minerals before I was well enough to go back to the doctor to request a full thyroid blood test rather than just a TSH reading.
I am now self medicating as I was refused a trial of T3 in early 2018.
I trialled T3 with T4 for myself and felt amazing and my brain turned back to " on ".
I have now moved to NDT and am about 18 months in and which I prefer as it feels softer on my body and simply can't understand why the NHS wants us all to be unwell when we can be so much better and able to get on with our lives and helping with family and the wider community.
Thank you for your brief history. I can certainly sympathise with how drained you must have felt for so long. I guess suffers just learn to 'live' with symptoms regardless of how debilitaring they can be? A good indication of the medical worlds lack of interest in thyroid (& womens) health. I'm sorry it took you so long to finally figure out how to restore your health. I was only diagnosed in 2018, but I found this site relatively quickly and have, thus far at leaat managed to fight for my cause even though I haven't won every battle with the GP's I've encountered. I'm still amazed at how much more forum members here know than medical professionals! I will certainly take a look at those books and like you, try to absorb as much info as I can. You take care x
I guess it's a case of when push comes to shove - and when the time is right for each person.
I have found it liberating and so less stressful :
You do need to read up and feel ready to take that first step, and I think if you have other, unrelated health issues, and need to be reliant on the doctor it can be more of a challenge.
It's is a disgrace that, in order to remove NDT from being prescribed, that the (BTA)British Thyroid Organisation made False Statements in order to withdraw it, despite it saving hypo patients lives since 1892 onwards. (no blood tests available then and patients got a trial of NDT).
One of Thyroiduk's Advisers (also a Researcher/scientist) wrote to the BTA every year for three years regarding the withdrawl of NDT but they never did respond to him. Dr Lowe had an accident which caused his early demise and is greatly missed.
Yes and they just ignored Dr Lowe's communications. It seems to me that they don't have to answer to anyone once they make decisions.
So, instead of having options we get levo alone. Some may get T3 added or be given it but that's few and far between. The patient may be symptomatic but it seems that the professionals only look at the TSH and if it 'in range' they're happy, never mind if patient is unhappy.
Hi SlowDragon. I am supplementing Vit D (on advice of GP) and Ferritin and B12 although I suspect all 3 will need a boost to be optimal. I assumed I would need to make sure my vit levels would need to be optimal before undertaking/instigating any changes.
My diet, since January has been vegan. This has been working for me as I have better gut health, have cut out a lot of junk and find I am just about holding off weight gain. I know veganism is not ideal in terms of certain nutrients however, my B12 and Ferritin have been consistantly low as far back as I can go on my online medical records (2013). I do follow a gluten free diet pretty strictly although I do have lapses now and again. I do however get regular (what I now recognise to be) Hashi flare ups. I assume due to vitamins not being optimal. Obviously as a vegan I don't touch dairy, but even before I hadn't consumed cows milk in about 30 years as I don't like it and I only ate cheese about once a month.
As a vegan you will almost certainly need to supplement continuously B12...possibly iron too...but important to retest iron levels very regularly If supplementing
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
The problem with low vitamin levels is that they frequently result in very poor conversion of Ft4 to Ft3....this results in high Ft4 and LOW TSH .....making it extremely difficult to get increased dose of levothyroxine prescribed ...and it can be very difficult to tolerate higher dose too
Maintaining OPTIMAL Vitamin levels by supplementing frequently essential
If you add results members can advise on what needs improving
Thank you. I did not realise just what low vit levels can have auch an effect like that for T4 to T3 conversion! That could well explain my results in January. I did a Ultra Vit blood test today. I will post results as soon as they come through
Thank you for your reply. This is exactly why I wanted to hear about personal experience in order to help me move forward. It seems everyone has completely individual and very different experiences. Probably a stupid question, but do the glandulars just make you feel better or do they actually help optimise your blood levels?
I shouldn´t say this publicly, but I´m all for self-medicating because of the blatant ignorance of doctors. Disclaimer: you are not supposed to self-treat to diagnose or treat any disease etc...so, that´s that taken care of
Honestly, doctors are so ignorant it should be criminal. I am a woman with thyroid disease (Hashimoto´s). Most men in my family have some kind of cardiac condition (they used to die from it but nowadays they can medicate to stay relatively healthy and live as long as anyone else). But what strikes me is that if they had been treated the same way I have, they´d probably be long dead by now.
I have not self-medicated as such because I found a doctor willing to add liothyronine to my levo, but that of course caused my TSH to drop to undetectable levels. So why is that a problem if it´s not a problem to the prescribing doctor...?
Because
1. you mention to another doctor you see for an unrelated condition you have thyroid disease but are taking meds and followed by another doctor and relax, convinced this doctor will not order thyroid labs...when s/he does, s/he will freak out when seeing your suppressed TSH and start interfering with your treatment (has happened to me countless times over the years);
2. you don´t mention your thyroid diagnosis/treatment, hoping to keep it a secret, but the doctor orders a whole panel of tests and includes thyroid labs...and scenario 1 applies.
The reason this has happened to me is because I see one doctor for my thyroid once a year, and then I have my GP who is clueless when it comes to thyroid disease...she once told me that "having a TSH in range" is only necessary in pregnancy...she said she only applied the "general guidelines".
So, I´d say it depends...on whether you expect to see doctors for other diseases, and how likely they are to order labs and include a thyroid panel...some doctors seem to throw it in without knowing what to do with the results. Far too many only order a TSH test and don´t care about the free Ts (some may not even know what they are)...some doctors will even tell you that you have Graves´ without even ordering FTs or antibody tests...they only look at the TSH.
But, I remain convinced self-treating is the only option for far too many patients...!
I agree with everything you said wholeheartedy about doctor ignorance. My last GP was reluctant to up my doseage (on advice of an endo at Derriford, Plymouth-who also told her to ignore everything other than TSH). She was at least happy to leave my dose the same. For me it was not enough, but I figured I'd put up and shut up. Then came the GP is January who looked at me like I had grown another head when I explained why I order private tests. Huffed, puffed, reduced my dose by 300mcg a month and told me surpressed TSH was dangerous. She huffed even more when I asked what the repurcussions of untreated or under medication for thyroid I was lectured and lambasted (how dare we question how we are treated eh?) hence why I just gave up.
You are spot on about the way thyroid patients are treated. It is disgusting and dare I say bordering negligent. If you are male and seek advice about erectile dysfunction does the GP start the ball rolling for treatment or sit and lecture said patient about their unhealthy diet, overweight, smoking or lack of exercise (like I was) despite the fact a change of lifestyle in almost all cases would suffice? If 100k men were diagnosed with thyroid disease a year would NHS research be updated? I just don't get what it is about thyroid disease that just evokes a lack of interest by medical professionals.
If you are self medicating or perhaps I should say self treating and you are monitoring your levels, there is no evidence you are causing damage and your health has restored to normal/expected then I see no problem except for the fact we pay for our medical service through wage deductions and practices receive funding per patient and pharma subsidies for some prescribed drugs.
"I just don't get what it is about thyroid disease that just evokes a lack of interest by medical professionals."
You are absolutely right...I´m convinced it´s because most thyroid patients are women. I hate to admit it, but there it is.
One doctor once said to me: "What is it with you women...if it´s not PMS, then it´s menopause..."? (to avoid misunderstandings, this was in Western Europe in 2019..not 1819 or 1919 but 2019, so half a century after man landed on the moon).
But this doctor´s comment was meant to belittle all women who fail to recover on LT4monotherapy...then, doctors either blame it on "just being a woman" or, depending on our age, on pre-pubescence, pubescence, pre-menopause, peri-menopause, menopause, post-menopause...you name it...
Thank you for your response Hidden . It's good to hear from your perspective. It's quite refreshing to hear from someone who has had a positive experience. I think you are in a minority, not just for self treating then turning to the doctor, but actually finding one who is not only proactive, but clearly supportive. It's interesting that your experience is so vastly different from others on this forum. From my understanding, the standard of NHS treatment seems to be defined by the individual GP first and foremost rather than geographical location. While I have no problem with GP's being gate keepers to specialist treatment, I do have a problem when the specialist does not fully understand the disease they should treat.
I have had consultations with doctors with a range of attitudes from dismissive to insulting to sympathetic, but unhelpful. I was lucky in as much as my last GP, although would not increase my dose did not reduce it either until another GP intervened in January and with the usual dismissive attitude. It is clear an overhaul is long over due and while I appreciate you're under NHS care no patient should need to self source medication.
Do you feel your doctor takes on board your concerns, symptoms etc before making a decision about treatment adjusting?
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