Words of wisdon from Dr John Lowe (RIP) Part 1 - Thyroid UK

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Words of wisdon from Dr John Lowe (RIP) Part 1

shaws profile image
shawsAdministrator
18 Replies

I came across this previous post dated 2009:-

" I received the question below at AskDrLowe@drlowe.com yesterday. Since I wrote my answer to the woman's questions, I've had to control the outrage that I must quash inside myself every day. It wells up from my awareness of the misery hypothyroid patients suffer from the commercially-driven dictates of the endocrinology specialty (dictates that the specialty euphemistically calls "practice guidelines").

At the same time, I've felt a mixture of other emotions from my memory of conversations with many practicing clinicians. They've admitted to me that they know the specialty's dictates harm patients. They comply with the dictates, however, from fear of retaliation from the endocrinology specialty through medical regulatory boards.

I feel especially outraged over the suffering of British patients from the recent diagnostic and treatment recommendations of the British Thyroid Association and the Royal College of Physicians. I say "especially outraged" because I fully expect that the recommendations will cause even more widespread suffering than already afflicts so many British hypothyroid patients.

As I reflect back over my years of clinical practice, I see countless faces of hypothyroid patients. Most of the patients had long suffered due to the endocrinology specialty's dictates. Many of their faces were wet with tears, others were clinched tight from anger, and still others were weary or despondent from the dismal days-and-nights the dictates had caused them to suffer through. And I can never stop thinking about all the people yet to become hypothyroid, many of whose lives those dictates will spoil, outright ruin, or bring to a premature end.

I know some clinicians who courageously violate the specialty's dictates. By doing so, they get many hypothyroid patients well. But those few clinicians practice medicine in constant danger of local endocrinologists filing complaints against them with medical regulatory boards. The complaints most often cite the clinicians for suppressing patients' TSH levels. Only if a hypothyroid patient has had thyroid cancer does the endocrinology specialty approve suppressing his or her TSH, allowing the benefits that come from it, such as a longer life, improved health, and an improved sense of well-being.

But if a patient hasn't had cancer and suppresses his or her TSH with thyroid hormone, the increased life span, better health, and improved well-being, according to the specialty, must be "placebo effects." And the specialty warns that the price the patient is likely to pay for enjoying those "placebo effects" is osteoporosis, adrenal crisis, or sudden death from a heart attack. No endocrinologist I've ever asked has explained to me why these adverse effects don't befall thyroid cancer patients who live for decades with suppressed TSH levels. But feeling justified in "protecting" the non-cancer patients from their TSH-suppressing clinicians, some endocrinologists send complaints to regulatory boards, and woe betide the cited clinicians.

For hypothyroid patients and their TSH-suppressing clinicians, the circumstance involving the endocrinology specialty isn't improving but is getting worse. Because of that, I've come to believe that a particular route is best for many of these patients to take. If they don't have collaborative, dictate-violating clinicians to help them get well, the next best route to follow—rather than allowing the dictates to keep them sick—is to turn away from conventional medicine and educate and treat themselves.

Fortunately, in the U.S., hypothyroid patients are at liberty to do this, at least for the time being. They can do it thanks to the 1994 Dietary Supplement Health and Education Act. That Act allows access by personal choice to effective medications classified as "dietary supplements" rather than FDA-regulated drugs. Patients don't need prescriptions to use dietary supplements; all they need is the knowledge of how to properly use them and the gumption to turn away from Big Pharma's drugs and put the dietary supplements to use.

For anyone who benefits from the information I include here, I ask only one thing in return: that you be ever vigilant for what, at the root, are Big Pharma-prompted attacks on the 1994 Act. And when those intermittently-occurring attacks are under way, take prompt action by letting your legislators know that you demand the health freedoms the Act ensures. (You can learn of these attacks and conveniently let your legislators know you oppose them by subscribing to two newsletters by natural health activist groups: Alliance for Natural Health and Citizens for Health.) When we can, we'll let you know at drlowe.com when the Act is under attack, and we'll be grateful for your steadfast and repeated defense of it along with ours.

Now . . . here's the email inquiry I mentioned at the start that set off all these thoughts, and my response to the person's questions.

Question: I have Hashimoto's and was feeling like a new human being on 2 grains of a prescription desiccated thyroid product. I'd never felt as good before in my life. Then, last month I went in for my regular visit to my family doctor and she checked my thyroid. Her nurse called a week later and said my TSH was too low and I was overstimulated. She made me drop my dose from 2 grains to 1. I did, and for the last week, I've felt like a slug again. I'm depressed and constipated, and I'm freezing and wearing a sweater while everybody else is in T-shirts, bare feet, and flip-flops. I called and told the nurse that I had felt great on 2 grains and that I did not feel overstimulated at all. I also told her how awful I've felt since dropping my dose to 1 grain. She put me on hold, and when she came back, I was shocked at what she said. She told me the doctor said I'm better off feeling awful than getting bone fractures or a heart attack from too much thyroid. Are those really my only two choices, feeling awful or dying from a heart attack? Do I have to beg and plead to use enough thyroid hormone to feel well, like I did on 2 grains of the prescription desiccated thyroid product?

Dr. Lowe: I'm sorry your doctor sent you on a toboggan slide to suffering again. She apparently has been effectively propagandized by the endocrinology specialty, whose beliefs about the TSH, I staunchly believe, are purposely shaped by boardroom executives of corporations that own TSH test kits and sell them by the millions to laboratories for clinicians to order.

The scientific evidence shows that even if you have a suppressed TSH, with a high degree of probability, that won't cause you to develop osteoporosis. In fact, if the 2 grains of the prescription desiccated thyroid product enabled you to be more active, you may have bone density that's higher than that of other women your age.

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shaws
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18 Replies
UrsaP profile image
UrsaP

Thanks for posting this shaws HOw sickeningly true these words are. It almost made me cry. Who's life is it anyway? Even if the 2 grains had led to osteo or heart attack, surely the patient should have a choice. live an active life for a shorter time, or lead a horrendously debilitated non-life for longer?

Who is the Dr to say it is better to live a life feeling awful? How dare they play God like that? Who's life is it? The patient should decide if that 'risk' is worth taking. And any Dr worth their title would outline the symptoms to look out for and advise the patient to come back at the first sign.

When I told my GP I was taking only T3 and not taking T4, because of the effects T4 was having, he pointed out the risks, I assured him I knew about them and would look out for them. 11 years on T3 mono - never had the palpitations or any other problems they say likely.

Dr John Lowe (RIP) a very great loss.

shaws profile image
shawsAdministrator in reply to UrsaP

Yes - he is missed but fortunately we still have some information

UrsaP profile image
UrsaP in reply to shaws

Yes. Important information at that.

scorpiojo profile image
scorpiojo in reply to UrsaP

You go gal!!! Passion used to pass on the correct info where there is idiot speak - is fine.... You have to have an outlet & it means you care... What would it be here if you didn’t... So, emotions are like calories on a Tuesday... They don’t count 😉 RIP indeed & his contribution to life during his life, makes you feel proud to be human! At a time of political madness & duplicity it’s grounding & the pick you up we need... Big hugs Shaws

Judithdalston profile image
Judithdalston

So sad, as yes it is getting worse with TSH levels being king, and sadly Dr.Lowe’s use of T3 is even more likely to be on DIY route. I ordered his book ‘Metabolic treatment of Fibromyalgia’ thru the British Library over 7 months ago...and still no sign of it appearing, so even DIY is a long slog of trial and error. After a year not much fibro./ hypo relief with added T3.

shaws profile image
shawsAdministrator in reply to Judithdalston

Are you taking a high enough dose?

Judithdalston profile image
Judithdalston in reply to shaws

Jan. 3rd : after 3 months dosing of 37.5 mcg T3 with 100 mcg Levo. which gave me a FT3 reading of 7.69 ( range 3.10-6.80), FT4 13.4, TSH 0.006. Still felt aching, tired etc so raised it gradually to 50 T3:100 T4 but 3 weeks on that raised my bp to ‘high’, and pulse in 90s, without improving basal temp. stuck at 36C. , nor any improvement in how I felt if anything more pain/ lack of strength. So now trying more T4 125, less T3 c. 44mcg. Should I have gone up to combo with 56 mcg T3 etc?

shaws profile image
shawsAdministrator in reply to Judithdalston

Dr Lowe only took one blood test for the initial diagnose. Thereafter he took none but all the concentration was upon the clinical symptoms and relief of. He'd never prescribe levo but NDT or T3 alone for thyroid hor mone resistance which doses were titrated until symptoms resolved.

Some of us may be affected by fillers/binders in some replacements hormones.

Judithdalston profile image
Judithdalston in reply to shaws

So it’s ok to have FT3 consistently above range?

shaws profile image
shawsAdministrator in reply to Judithdalston

I am not medically qualified but I'd always go by clinical symptoms, i.e. if they are not resolving or if getting 'extra' symptoms symptoms we need to look at the hormone replacement as the person may be on too high a dose or insufficient.

Dr Lowe only prescribed NDT or T3 alone for thyroid resistant patients

He also took one initial blood test for patients who then took one daily dose on an empty stomach and thereafter it was all about the relief of symptoms by adjusting dose slightly.

If he himslef took 150mcg of T3 daily - due to thyroid hormone resistance - I'd assume his T3 would be over-range as the blood tests were introduced for and along with levothyroxine (T4).

The same with NDT which contains T4, T3, T2, T1 and calcitonin , if the blood test was introduced along with levothyroxine (T4) alone, again numbers wont correlate.

Judithdalston profile image
Judithdalston in reply to shaws

Yes, think I might have to give T3 only a go...dropping down from 50 mcg to 44 mcg T3 and upping Levo. From 100 to 125 mcg T4 has quickly and noticeably increased the cack-handedness - dropping things as fine motor skills go! Been reading as many articles on fibromyalgia and T3 as I can... but rather limited.

UrsaP profile image
UrsaP in reply to Judithdalston

Mu Fibro CFS and Migraine all went when I stopped T4, for me it seems that it was the T4 causing it. Or it could have been the adrenals struggling so not using meds properly? Who knows but never felt any better on T4 ever.

Judithdalston profile image
Judithdalston in reply to UrsaP

Can I ask how much T3 you now take, and what T4 you were taking? Did you just ditch the T4, or gradually remove it? How quickly did you feel the benefit of removing T4? Might be way for me to go...just feeling bit wretched that T3 as yet not really improved anything 12 months down the line!

UrsaP profile image
UrsaP in reply to Judithdalston

Hi Judithdalston I was put on a small amount of T3 alongside a lower T4 dose and for about 18 months felt better than I had for a long time. then got swine flu and went down so fast. Endo didn't want to alter meds as THS already very suppressed. Got sent to Psychologist. Who agreed it was medical not a mental issue. It was around then that I sacked the endo and went to see Dr Peatfield. Working with him for about 18 months. stopping T4, with the intention of adding it back in. But first I had to get my adrenals sorted, as they were struggling. I continued to take the small amount of T3. When I stopped T4 altogether the symptoms stopped within about 4 days. I can't remember the exact timings but I tried to add T4 back into the slowly increasing mix of adrenal support, T3 and vitamins. Every time I restarted T4 the symptoms started again within a few days. When I stopped T4 they went within a few days. So I gradually built up the T3, increasing it slightly every few weeks and ended up on 60mcg. I will add it was not an easy process to find the right dose, it did take a couple of stops and starts again, maybe moving too fast on one thing or another. But eventually settled at 60 T3 pd.

I do find that when I am ill or have a flare up of something, yet to be identified, that it knocks my bloods and my ability to process the medication. But this settles as the 'flair/illness' subsides.

As we know it is best to do this with support. I had asked my Gp to support me seeing Dr P as I had been trying T4 for 20 years with no success. And nothing else was working. I'm glad to say he saw the success. But sadly he retired about 3-4 years ago. And my records do not reflect the benefit of T3!!

I wish you the best of luck and success in whatever you decide to do.

Judithdalston profile image
Judithdalston in reply to UrsaP

Thanks UrsaP...I had read some of your earlier posts, one from ?2 years ago went into great detail ( pity in wasn’t info. In the top of your membership area, as made a good read! I wasn’t too bad for first 8 or so years, tho had to give up teaching job when first diagnosed as like you couldn’t cope physically, and with brain fog, Think it was the sepsis/ septic shock that had me in intensive care following routine bile duct procedure going wrong, four years ago, that brought on fibromyalgia, made me an insulin dependent diabetic, and saw hypothyroidism become undermedicated. If sepsis wrecked my pancreas what else might it have ‘altered’? What is your FT3 on 60 mcg T3?

UrsaP profile image
UrsaP in reply to Judithdalston

Oh dear that is awful Judithdalston !! It is a good question. I suspect you are going to have to remain vigilant to any changes in any aspect of your health. For it to cause all that is so scary! Gosh you looked back through my posts...I should do the same, see how if at all my attitude has changed. - for better or worse.LOL You might have noticed I find it hard to do a short response!

My FT3 tens to be middle to top of range, but only one blood a year usually. I think last year slightly above the range, into the 7's. But think that coincided with some sort of flare up. Been getting them for nearly 40 years, have not been able to pin point what. Bloods always negative. But very Sjogrens like and usually ulcerated left eye to go with it. TG not nearly as frequent, T3 maybe?

m7-cola profile image
m7-cola

Again: reading this is a great boost to my confidence. Thank you, Shaws.

MissGrace profile image
MissGrace

Thank you for posting this. It makes me sad to read it, but I am also full of admiration for his wise and empathetic approach. Not just a gifted doctor - a true humanitarian. 🤸🏿‍♀️🥛

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