28 February 2020

When Your Health Turns On You: #Hypothyroidism –– 5: Functional Medicine and YouTube

The backstory for those just joining me: 

During 2017 I was suffering lots of weird health symptoms, the most concerning being that my brain refused to function properly – hardly a useful trait in a novelist. April 2018 a lump developed on my neck: a swelling on my thyroid. A GP’s blood tests indicated I might develop Hypothyroidism, whereas symptoms and antibodies emphasised that I was suffering Hashimoto’s Hypothyroidism, an autoimmune disorder. I’m writing this series of posts because if you don’t recognise the signs your health could turn on you. I don’t recommend it. Read Post-1, Post-2, Post-3 and Post-4.

Note: I’m British and live in the UK. We have a National Health Service, free at the point of access, paid for via our taxes. Your mileage may differ, even if you live in the UK.

February 2020. Having joined a Vitamin D Deficiency support group, and deciding to follow its protocol of co-factors in an effort to raise my levels, there is now a 3-4 month wait before paying for a blood test to check both the Vitamin D and the Hypothyroid markers. I’ve also learned that raising Vitamin D to an optimal reading (75-150 nmol/L) may well pull up B12 levels, which wouldn’t go amiss.

Time to return to the outstanding:
    • lowish level of Zinc, ie less than a quarter up the range. [Note: see update at the bottom]
    • as I am eating the recommended good balanced diet why am I missing any nutrients?

During my research I’d come across quite a few articles calling for more nutritional education to be included in the training of UK doctors. Depending on the medical school (why isn’t there a UK standard?) it can be anywhere between 10-24 hours over five or six years training. No wonder my GP shrugged when I asked if I might have a vitamin insufficiency or an absorption problem. Add in the fact that local Clinical Commissioning Groups may refuse to fund the necessary blood tests to check, and a GP can be on a hiding to nothing even if well-read on the subject.

From my own reading it’s not much better in the United States. Except the US seems to have something which are very thin on the ground over here, Functional Medicine practitioners. These can be fully trained medical doctors, or nutritionalists, or quite often both. Their priority is not to relieve symptoms or cure, but to do this and discover the root of the problem so it can be adjusted in an effort to stop a recurrence. Many of them support YouTube channels.

Now, I’m the first to cast a wary eye over information gleaned from the Internet. After all, it’s part and parcel of being a historical novelist, never mind protecting my health. I’m particularly wary of content produced by people trying to sell me something, but when brain fog makes reading, never mind comprehending, an academic medical paper impossible, it’s less strain to assimilate information conveyed in layman's language from a scattering of sources, YouTube being one.

I’ve already recommended York Cardiology, the channel of British heart specialist Dr Sanjay Gupta. One I found fairly early in my research was American Dr Peter Osbourne, not a medical doctor, but a functional nutritionalist whose dietary specialism is gluten-free. His ten minute video Nutrition And Your Thyroid was a bit of an eye-popper, underlining much of what I was reading from UK Dr Barry Durrant-Peatfield’s book (see Post-2). If you are interested, and if you are reading this you should be, Dr Osbourne also has easy to comprehend explanations on Magnesium and Vitamin B12 Deficiency.

The other YouTube channel I now subscribe to is Dr Ken Berry, an American medical doctor with a nutritional leaning, a dry wit, and a no-nonsense approach. He also practices what he espouses. If you are looking for a diet regime he has road-tested several over the years, from Low Carb to Carnivore; currently it’s Keto. For me there are two playlists I was particularly interested in: Vitamins & Minerals and Thyroid Issues, each covering various aspects over a number of videos.

Also worth mentioning is the Vitamin D Wiki, a website founded by Henry Lahore on which he indexes articles and papers relating to Vitamin D. It’s been going ten years, looks a bit clunky, but its content is mind-boggling.

So what did I discover about that normal balanced diet that’s constantly been emphasised? For me it equates to a mainly low fat, high fibre, whole-grain, mostly white meat, fresh fish, fruit & vegetables diet. I’ve been eating it for years, but where’s the Vitamin B12 coming from? The Vitamin D? And I’m now suspecting optimal amounts of Magnesium and a host of others? I used to have regular cravings for dark chocolate and sweet stuff, which cut drastically after three months on a multi-vitamin and mineral supplement. Mmm.

As to my lowish Zinc and white blood count readings, it looks as if they go hand in hand. Zinc is a co-factor in numerous biochemical reactions, including Vitamin D and Essential Fatty Acid Omega-3 metabolism. It will be interesting to see if its level, and my white blood count levels, rise alongside Vitamin D.

So there I go. Or am going.

Yet the proof of the pudding is... how do I feel? A hellova lot better than I did. I get the occasional sore throat, the lumps on my neck make themselves felt occasionally and I suspect both have an input from the adrenals (stress) as I can feel very tired at the time this happens. Again, it will be interesting to see if this abates with a rise in my Vitamin D. If not I shall look elsewhere. There's still a lot of research to go at.

Do I mentally feel able to pick up a pen and write again? Well, I’ve written this series of articles, though if you think they’ve been written in the five days you’ve read them, let’s all have a little chuckle over that. Writing non-fiction doesn’t use the same mental muscles as writing fiction, but yes, I feel ready to roll. Except…

...except I’ve just had a pre-operative assessment for a replacement hip, due early March. Oh dear, what a shame, but does this have a bearing on anything? Aren’t hips, and knees for that matter, replaced due to “wear & tear”? 

That’s what we are always told but I’ve become suspicious of such pat answers. My mother died aged 89; she never needed a hip replacing, neither did her sisters. I’m only in my late 60s and this will be my second. Unlucky my orthopaedic surgeon suggested. And no, he wasn’t interested in hearing about my sub-clinical Hashimoto’s Hypothyroidism, but did perk up when I told him about my insufficient Vitamin D, and therefore a probability of osteoporosis, or at least its precursor osteopenia. Don’t worry, he said expansively, if your femur cracks when we do the operation we’ll put you on non weight-bearing until it’s mended. Thanks. I think.

More to the point, like a lot of people I’ve had lower back problems since my mid thirties. Perhaps I’m just reaping the warnings I, and my succession of GPs, dismissed as “pulled muscles”. Perhaps I should have continued that foul-tasting Cod Liver Oil of my 1950s childhood: Vitamin A, Vitamin D and Omega-3 anyone?


I’ll add in the occasional update post, but don’t expect one for a few months. Following the blog by email (see top of the column) will have updates delivered to your Inbox. If you found these posts informative, drop me a line in the Comments, or hit the Share buttons below. Helping spread the word may just save someone undertaking my journey. Thanks. And let's all take an interest in our own health. It may save tears later.
 
 
UPDATE: October 2020 - Information about my low-in-range Zinc level
Who would have thought I'd be grateful to USA President Trump? Having contracted Covid-19 his medications and vitamin & mineral supplements have been made public and Dr John Campbell has scrutinized the list President Trump's medications in detail. The full 40 min explanation is very interesting; Zinc is discussed 25mins in: it is the second most abundant mineral in the body (after iron), is needed in hundreds of key enzymes, and the "reading of DNA in cell make-up", yet its deficiency is a known common problem gobally. And yes, Zinc deficiency compromises the immune system. Says it all, really.


When Your Health Turns On You #Hypothyroidism series:

1: Symptoms
2: Vitamins & Minerals
3: Blood Tests
4: Vitamin Co-Factors & the Microbiome
5: Functional Medicine & YouTube
6: Covid-19 Coronavirus
7: Covid-19 and Vitamin D  

27 February 2020

When Your Health Turns On You: #Hypothyroidism –– 4: Vitamin Co-Factors and the Microbiome

The backstory for those just joining me:

During 2017 I was suffering lots of weird health symptoms, the most concerning being that my brain refused to function properly – hardly a useful trait in a novelist. April 2018 a lump developed on my neck: a swelling on my thyroid. A GP’s blood tests indicated I might develop Hypothyroidism, whereas symptoms and antibodies emphasised that I was suffering Hashimoto’s Hypothyroidism, an autoimmune disorder. I’m writing this series of daily posts because if you don’t recognise the signs your health could turn on you. I don’t recommend it. Read Post-1, Post-2 and Post-3.

Note: I’m British and live in the UK. We have a National Health Service, free at the point of access, paid for via our taxes. Your mileage may differ, even if you live in the UK. 

October 2019. After accepting that the National Health Service was going to step up only if and when I hit crisis point, I knew I’d have to do my own legwork, not merely table a bit of proof – in this case a below range Vitamin D reading.

Unlike many health disorders, there doesn’t seem to be a UK charity dedicated to Vitamin D, except for children (diagnosis of Rickets is on the increase; Osteomalacia is the term used in adults). Canada isn’t so reticent. Its The VitaminD Society states: 97 percent of Canadians are vitamin D deficient at some point in the year… Its short intro page makes interesting reading. Bear in mind that London is further north than the main cities of Canada.

The UK might not have a dedicated Vitamin D charity, but Vitamin D insufficiency and deficiency scores highly among other health charities: lupus, multiple sclerosis, rheumatoid arthritis, fibromyalgia… yes, all the ones I noted in Post-3 as autoimmune disorders. That smoking gun continued to smoke.

While I trawled through the many blood tests available on Medichecks, I kept in mind my original considerations:

  • If my body was missing Selenium, and now Vitamin D, what other minerals and vitamins is it missing?
  • As I eat the recommended “good balanced diet”, why was my body missing any?

Vitamins and minerals are mostly drawn from our food in the stomach via Intrinsic Factor – most notably Vitamin B12 – and during transit through the small intestines. Did I have an absorption problem? There might also be a question over Cortisol, the fight or flight hormonal system. It plays a significant part in a person’s metabolism and when it isn’t functioning properly it puts stress on the thyroid. I added an Essential Fatty Acids Omega 6:3 ratio test to my choices. These are called ‘Essential’ because they have active roles in a person’s metabolism yet can’t be produced in the body.

I wasn’t looking for a smoking gun this time, but eliminating other possibilities. Most of these tests are not available on the NHS via a GP, only via a Consultant Endocrinologist. I didn’t want to wait months for a referral, even if I was allowed one. If I paid for a private consultation the fee would likely be more than for the tests, and I’d still have to pay for those.

The basic Cortisol – four saliva tests in a day – returned well within ranges (good); there were no Intrinsic Factor antibodies (brilliant); Zinc, which had been included in a test bundle, was low in its range so I needed to bear this in mind; Essential Fatty Acid Omega 3:6 ratio was 1:12 despite my good balanced diet (oh dear); and the Thyroid tests were all pulling back (fantastic).

Yet again, the big one was Vitamin D. Despite my being on 40mcg (about 1600iu – international units) a day for the previous three months, its test number had risen only five points bringing the result just inside the edge of the lower range. Something was definitely wrong. Time to find a support group specialising in Vitamin D deficiency and learn from the experience of members.

January 2020. With Christmas-3 behind me I got down to it. Facebook again provided a choice. I looked at a few but it was 'Vitamin D and Co-Factors UK' which drew my attention, initially due to ‘co-factors’ being in its title.

I’d learned a bit about co-factors. The absorption potential (bioavailability) of Iron is enhanced by Vitamin C, even a glass of orange juice will do. Vitamin B12 has a symbiotic relationship with Folate. If they are out of balance neither work as they should. The body is a complex organism and these explanations highly generalised, but they illustrate the concept.

Some co-factors aren’t so specialised. Magnesium plays a part in 300+ biochemical interactions, including helping regulate calcium and insulin levels, blood pressure and the cardiovascular system, the nervous system, Vitamin D levels... basically, we need it. However, as with Vitamin D, there is considered to be widespread insufficiency, even deficiency, in the population.

During my reading I’d come across various articles suggesting one cause for the lack in the population being that intensive farming was depleting the nutrient, and others, from the land and therefore from food crops, but it was a video from York Cardiology Why Magnesium is So Good For Us which finally made me take notice.

York Cardiology is a YouTube channel run by UK heart specialist Dr Sanjay Gupta who takes time to explain conditions within his remit and the steps people can take to help themselves. If you suffer from any form of cardiovascular problem I suggest you take a look at his playlists. His short video on Hypothyroidism and the Heart is interesting, to say the least.

So did I need to take co-factors with an increased Vitamin D supplement? The answer seemed to be yes, which may come as a surprise to the endocrinologists who gaily prescribe large or even very large amounts of Vitamin D3 alone. (There are various types of Vitamin D; D3 is the easiest to absorb.)

One of the consequences of increasing Vitamin D to an “optimal” level (75-150 nmol/L) as opposed to being just “in range” at 50, is that it enhances absorption of Calcium – the reason it is prescribed to combat osteoporosis. The problem is Calcium and Magnesium work as buddies, so a substantial increase in Calcium needs extra Magnesium as a co-factor to help maintain their balance.

However, unless the rise in Calcium is guided it has a tendency to spread itself into places such as arteries, musculature, joints, and the kidneys. Think of it as limescale in a kettle. Kidney stones, anyone? Having enough to cope with, I’d rather not, thanks.

The co-factors suggested from group experience are Ionic Magnesium to balance the increase in Calcium, Vitamin K2-Mk7 to guide the increase in Calcium to the bones and teeth or the unused to be excreted, and Boron to enhance absorption of both the Vitamin D3 and Magnesium. For these to work optimally together they cannot be taken ad hoc but in a specific ratio. As with all supplementation, as long as no adverse side effects prompt a re-think, results can take three or four months to start to manifest. I’ll post how I get on.

Other Vitamin D support groups will advise slightly differently, dependent on their members’ needs and experiences. Many in my chosen support group also have thyroid disorders, so I feel the match is liable to be good.

Early February 2020. A major aspect coming from my ongoing research has been the importance of a healthy gut system, otherwise known as the Microbiome. Evidently we have between 300 and 1000 different species made up of viruses, fungi, yeasts and organisms. Not only do they help protect us from pathogens, but they aid food digestion, activate freed vitamins and minerals, and interact with the brain and the immune system (oh yes?). We need them all, but in the correct balance.

And herein lies the rub. Even a good balanced diet has a surfeit of sugars (think fresh fruit) and yeasts (think cereal-based carbohydrates). This is the starter kit to any fermenting system.  I find it interesting that sufferers of Irritable Bowel Syndrome, Crohn’s and Coeliac diseases, find respite in gluten-free or even full cereal-free diets. It is a suggestion often made to those with Hashimoto’s Hypothyroidism when options attempting to alleviate symptoms start to run low. All are autoimmune disorders and all show low Magnesium and Vitamin D levels. Add in daily ingested prescription drugs, and over-the-counter medications, to say nothing of the occasional nuclear-blast of antibiotics, and the surprise is that so many of us function well at all.

Can probiotics help? Yes, but three or four strains in a yoghurt-based culture can seem like a drop in the ocean. Multi-strain bacteria in freeze-dried capsule form, which I am currently trying, are available at a price. Kimchi, or unpasteurised Sauerkraut, may well prove a cost-effective alternative if it's available. After all, Hippocrates swore by the stuff. I may be inclined to argue with a modern endocrinologist, but not with the Ancient Greek 'Father of Medicine'.



When Your Health Turns On You #Hypothyroidism series:

1: Symptoms
2: Vitamins & Minerals
3: Blood Tests
4: Vitamin Co-Factors & the Microbiome
5: Functional Medicine & YouTube
6: Covid-19 Coronavirus 
7: Covid-19 and Vitamin D 

26 February 2020

When Your Health Turns On You: #Hypothyroidism –– 3: Blood Tests

The backstory for those just joining me: 
During 2017 I was suffering lots of weird health symptoms, the most concerning being that my brain refused to function properly – hardly a useful trait in a novelist. April 2018 a lump developed on my neck: a swelling on my thyroid. A GP’s blood tests indicated I might develop Hypothyroidism, whereas symptoms and antibodies emphasised that I was suffering Hashimoto’s Hypothyroidism, an autoimmune disorder. I’m writing this series of daily posts because if you don’t recognise the signs your health could turn on you. I don’t recommend it. Read Post-1 and Post-2.

Note: I’m British and live in the UK. We have a National Health Service, free at the point of access, paid for via our taxes. Your mileage may differ, even if you live in the UK.

Late April 2019 After GP-3 refused my request to check the levels of my Vitamin B12, Folate, Ferritin (iron storage) and Vitamin D, I did what many on the Hypothyroid-UK support group had done before me: I opened an account with Medichecks, a company based in the UK which offers private blood tests. It took a good half morning to complete its medical questionnaire, which impressed me.

I chose it (there are others) because of its easy to understand guides, articles, and especially explanations of what a high or low result might mean of any particular blood test. Some tests offered are covered by the NHS via a GP – Full Blood Count, Urea & Electrolytes, Lipid panel. As I began to acquire printouts of past test results via the GP, I created a table using the explanatory information from Medichecks to interpret what I was reading.

One thing became apparent almost immediately, many of my white cell counts were low within their ranges, and had been for some considerable time. Many of these rise significantly when the body is fighting an infection, but how low is depleted and how low is optimal? This question I kept on the back-burner.

I had the results of my last four blood tests:
April-18 when I’d first presented with the swelling on my neck and was hardly able to string a phrase together;
Aug-18 after I’d been eating Brazil and almond nuts for three months and felt so much better;
Nov-18 a routine annual check-up; 
May-19 when I’d been taking the vitamin & mineral supplement for three months, plus a month without them to clear my system of excess.

To my surprise, despite the huge differences in how I’d felt, there was hardly any difference between the dated results. As I maintain in previous posts, a person can be very ill but blood tests can return “within range”.

May 2019. Each Thursday is Thyroid-Thursday at Medichecks, when one of its listed Thyroid tests is discounted [Update: now occasionally, not every week]. This alone should give an indication of how many people in the UK use it, or perhaps I should say, need to use it. I’d chosen Thyroid Check UltraVit [Update: now called Advanced Thyroid Function Blood Test], a panel of the three main thyroid tests (TSH, FT4, FT3), its two antibody tests, an overall inflammation marker, and the default vitamin and mineral panel (Vitamin B12, Folate, Ferritin (iron storage) and Vitamin D). As luck would have it, that test was on offer. As this was my first experience I also paid for a nurse to come to the house to take the blood intravenously. I could have attended an associated clinic in my nearest city for slightly less. [Update: it's dead easy to do a finger-prick test, which is what I now use.]

As soon as my order was placed the company’s system fired up: first acknowledgement and information emails then a phone call from the agency matching nurse to client. Next day a small package was delivered containing everything the nurse would need plus detailed how-it’s-done information for me. The nurse arrived on the agreed day at the appointed time, and fifteen minutes later I was dropping the package into the postbox back to Medichecks. Next day I received email confirmation of arrival, the day after that notification that my results were ready to view on my personal dashboard, complete with a doctor’s assessment and recommendations. Yes, I was impressed again.

Despite slightly different ranges being used to those of the GP’s tests I was pleased to see that my thyroid results, the antibodies, and the inflammation marker, were holding steady. There may have been no drop, but at least there had been no significant increases.

The vitamin and minerals were a different matter: Ferritin (iron storage) was halfway up the range, Folate nearly two-thirds up, Vitamin B12 only a third up, and Vitamin D was just in the danger zone at 48 (range 50-175). The multi-vitamin & mineral I’d been taking for three months included 15mcg (micrograms) of Vitamin D. What on earth had been its reading in April-18 when I seriously couldn’t function? I knew from the Hypothyroid-UK support group, that each vitamin in this panel needs to be above halfway, that the optimal for Vitamin D needed to be above 75, preferably closer to 125. Had I found the smoking gun?

In the accompanying report the Medichecks’ overseeing doctor advised upping the Vitamin D supplement to 40-50mcg per day, re-testing in three months, and if it had risen enough dropping the dosage to the NICE recommended maintenance of 10mcg per day.

Er… pardon? What NICE recommended maintenance was this? Back to searching the internet. And there it was, hidden way down in Public Health Guideline 56 “Vitamin D: supplement use in specific population groups”; under 7: Glossary; under: Reference Nutrient Intake:

10 micrograms of vitamin D per day, throughout the year,
for everyone in the general population aged 4 years and older.

When had this ever been mentioned during my annual check-ups? Never. Was there a poster to this effect displayed among the many in the medical centre’s waiting room? No. I checked the town’s pharmacies: only one displayed a notice to this effect and the next time I visited it had been removed.

To say I was indignant is putting it mildly. So much for the oft-repeated mantra If you eat a balanced diet there’s no need for supplements. The UK’s National Health Service is groaning beneath the demand placed upon it. How much of that demand could be assuaged if the population was advised correctly? I had lost over a year of my working life because the people into whose hands I placed my continued health were ignoring the basics. Alas, I was soon to learn this was merely the tip of the iceberg.

I decided to continue for a further three months the multi-vitamin & mineral supplement, and added a named 25mcg Vitamin D3 supplement, also available over-the-counter. This brought my Vitamin D intake up to 40mcg a day, about 1600iu (international units).

Note: My ongoing research was showing that not all supplements are created equal; cheaper ones tend to use more binding fillers, hence again choosing a named brand. Individual vitamins and minerals aren’t created equal either. Vitamin D comes as two main types: Vitamin D2 (Ergocalciferol – derived from plants) and Vitamin D3 (Cholecalciferol – derived from animals). The former is cheaper and tends to be used in a mixed supplement, the latter is more easily absorbed by the human body, which itself makes D3 from cholesterol under the skin, if we get enough sunlight – which is why it is considered the “sunshine vitamin”, despite it not being an actual “vitamin” [don’t go there, Linda].  Alas, living in the northern latitudes, coupled with our home>car>work>home routine, a substantial percentage of the population is thought to be low, insufficient, or deficient in Vitamin D. 

I went hunting for Vitamin D in food, and that mantra of if you eat a balanced diet... looked ever more shaky. I dumped our rather sterile breakfasts for fortified cereals; the spreads ‘for reducing cholesterol’ for natural butter; the lower fat semi-skimmed milk for full-fat milk, and reintroduced red meat to the family’s diet to increase the consumption of both Vitamin D and Vitamin B12. Oily fish, such as mackerel, salmon, and tuna, was already part of the family’s menu, as are masses of greens.

I also took the arbitrary decision after a year of eating them, to drop the number of Brazil and almond nuts (taken for their massive amount of Selenium – see Post 2) from six per day to four to see if it would make a difference to how I felt [Answer: not that I have noticed to date].

End July 2019. Spending more of early summer outside, working mostly on our fruit and vegetable plot, I was feeling more energised and was able to do more. The need to doze during the day had totally left me and I was dismayed by how bad I’d been and thought it normal.

End of August 2019. I finished the three months and came off all supplements apart from the four Brazil and almond nuts. I wanted to leave it for a month then have my bloods retested. Vitamin B12 supplementation (from the multi-vitamin & mineral) stays a long time in the body, and the month lay-off was mostly to allow the excess to dissipate so I could gain a semi-reliable result. In truth, three to four months should be allowed, but I had no intention of staying off my other supplements for that long. Good decision.

September 2019. I felt as if I was winding down, and was definitely tired if I pushed myself. The skin on my lower legs and feet was drying out again, I had re-developed a continuous nasal mucus I’d forgotten about, and the lump on my thyroid, the size of a large egg split lengthways, quiet for so long, was making itself felt.

If the swelling was fairly flat I suffered a sore throat; if it enlarged the sore throat disappeared. Then chatting with friends over dinner one evening my throat became noticeably sore and then lumpy on the opposite side to my swelling, as well as across the front of my throat. My voice turned gravelly, and as I attempted to eat it felt as if a wedge was obstructing the oesophagus. Not nice. In fact, damned alarming. Cancer of the thyroid loomed menacingly in the background. It took two days to calm, but didn’t feel right. I made an appointment with my GP.

GP-1 listened carefully but I received a refusal when I asked for a further ultrasound scan, despite it being 17 months since the original. Only a consultant could request a second ultrasound, and I wasn’t bad enough to be referred to a consultant. Was I supposed to wait until I couldn’t swallow?! This elicited a shrug.

The report from the original ultrasound was brought up on-screen and it was then I learned that I don’t have a swelling on my thyroid, I have two swellings, one on each lobe.  Despite the casual dismissal by the ultrasound operative as… It’s nothing to worry about. Lots of ladies get them… I discovered I have two degenerative BTA U2 nodules, the largest measuring 41x29x25mm – at least that was the measurement 17 months ago. A U2 nodule is considered benign, ie non-cancerous. This somewhat startling information is why everyone should request printouts of all tests, not just blood results.

Perhaps I looked shell-shocked, for GP-1 quietly put the implications into perspective: as the degeneration progressed I’d need to be medicated with Levothyroxine – for life. I belonged to a support group of over 7,000 UK members, most of whom were being medicated with Levothyroxine. They weren’t members because the drug worked, they were members because they had no option but to take it and their quality of life was somewhere between sub-optimal and purgatory. Over the last 17 months I seemed to have come full circle: this was not a plan I intended to sign up to.

I dropped my colour printout of the Medichecks results on the desk, drawing particular attention to the low Vitamin D reading: that probably means I’m heading for osteoporosis. My assertion wasn’t disputed. I’d paid for one set of tests and proved my deficiency; I explained the increase in supplementation, stated the NHS guidelines, and asked for the NHS to do a retest to see if my course of action was having the desired effect.

It was then I discovered that the “postcode lottery”, where the prescribing of some expensive drugs for life-limiting conditions depends on where the patient resides, also extends to more routine blood tests. My cousin, living in the Midlands, was given a Vitamin D test as part of the Full Blood Count, but in my Clinical Commissioning Group area it is part of a cascade system, where if the first test returns “within range” – in this case TSH (Thyroid Stimulating Hormone released by the pituitary gland) – the laboratory is under obligation to refuse the subsequent tests in the cascade. So much for a National Health Service. Despite this, GP-1 agreed to try.

October 2019. I collected the requested printouts of results from the medical centre and opened the envelope in reception. Just as I’d been warned the tests had fallen foul of the cascade system. Not only that, of those done Ferritin and Folate had no ranges, just a number (making it meaningless), and Vitamin B12 was a Total Serum test not the more specific Active test (explanation via Thyroid-UK). However, it was the Vitamin D result which took the prize: “Normal. No Action Required. Not Tested”.

I laughed out loud. So much for relying on NHS blood tests. As soon as I arrived home I logged onto Medichecks, determined to hit this, once and for all.



When Your Health Turns On You #Hypothyroidism series:

1: Symptoms
2: Vitamins & Minerals
3: Blood Tests
4: Vitamin Co-Factors & the Microbiome
5: Functional Medicine & YouTube 

25 February 2020

When Your Health Turns On You: #Hypothyroidism –– 2: Vitamins + Minerals

The backstory for those just joining me: 

During 2017 I was suffering lots of weird health symptoms, the most concerning being that my brain refused to function properly – hardly a useful trait in a novelist. April 2018 a lump developed on my neck: a swelling on my thyroid. A GP’s blood tests indicated I might develop Hypothyroidism, whereas symptoms and antibodies emphasised that I was suffering Hashimoto’s Hypothyroidism, an autoimmune disorder. I am writing this series of daily posts because if you don’t recognise the signs your health could turn on you. I don’t recommend it. Read Post-1 in full HERE.

Note: I’m British and live in the UK. We have a National Health Service, free at the point of access, paid for via our taxes. Your mileage may differ, even if you live in the UK.

August 2018. After three months eating six Brazil and almond nuts a day, although I still wasn’t right I felt fantastic in comparison to how I’d been previously. Brazil nuts carry a massive amount of Selenium – 990%DV (daily value) according to MyFoodData. It is one of the minerals which helps the thyroid convert the inactive hormone T4 into the active hormone T3 the body can use at cell level to balance a person’s metabolism. If you are blinking at that sentence you’ll understand the trouble I was having when my brain refused to work and all I wanted to do was sleep. Thankfully there’s a very good explanation on the website of charity Thyroid-UK.

Two questions became pressing:
– If my body was missing Selenium what other minerals and vitamins was it missing?
– As I eat the recommended ‘good balanced diet’, why was my body missing any?

November 2018 I put these questions to my own GP (GP-1) when I visited for annual blood tests to monitor my ongoing high blood pressure [flag]. A shrug. I persevered: Surely there were blood tests for vitamin levels? A shrug. Didn’t my normal blood tests (Full Blood Count, Urea & Electrolytes, Lipids) show anything? They’re fine.

 I reiterate the point I made in Post-1: They’re fine means the tests are  “within range”.
You can be very ill but your blood tests can return “within range”.

I requested the lump still protruding on my neck be checked – not necessary – and asked for advice about the dry state of my skin, feet to knees [huge flag]. It was suggested coconut oil might help. (It didn’t.)

I was despondent. There had to be information somewhere that could put me on the right track. My mental capabilities had plateaued and I still couldn’t grasp words enough to write fiction. However, prep was looming for Christmas-2 so my concerns were allowed to lie. I stayed on the daily six Brazil and almond nuts.

January 2019 arrived and with it a New Year’s Resolution: I was going to sort this, with or without help from the local medical practice.

I’d found the Thyroid-UK charity; it has a support group but I wasn’t enamoured. Where to look for something more suitable? Where do we look for any groups? Facebook. Almost immediately I found Hypothyroid-UK. I was vetted and welcomed. There are over 7,000 participants in this closed group and it opened my eyes to the appalling state of medical knowledge and response to symptoms far more debilitating than mine. In truth, my experiences showed I was getting off light.

The first thing I learned was that I – everyone – should always request print-outs of their test results. Some medical practices have these easily available online if you sign up, but the online presence of mine only offers appointments. Second, Vitamin B12, Folate, Vitamin D, and Ferritin (iron storage) constitute the default panel of vitamins and minerals which need to be tested, if, as I later discovered, the local Clinical Commissioning Group allows its designated laboratory to test them. Those quiet shrugs from GP-1 had been to fob me off. Why not tell me the truth? I was not amused.

The third thing I learned was that a book by Dr Barry Durrant-Peatfield came highly recommended. I checked the Thyroid-UK site and found it recommended there, too: Your Thyroid and how to keep it healthy - 2nd edition of The Great Thyroid Scandal and How to Survive it.  Its title says it all.

When I realised the author was focussing on the use of vitamins and minerals, I bought a copy. It was the best thing I could have done, as can be seen from the proliferation of yellow tags in the image. Other titles/authors are available.  In fact, there are a profusion of books, some carrying titles equally sharp.

In my state of below-par comprehension my chosen book took some reading, even though it was written for sufferers of the condition. However, one simple paragraph stood out like a revelation: people with Hashimoto’s antibodies don’t have Hypothyroidism, they have a compromised immune system causing Hypothyroidism. I was looking in the wrong place. Or maybe I wasn’t: as I eat the recommended “good balanced diet”, why was my body missing any vitamins or minerals?

Having been stone-walled at my medical practice I had no idea where my levels stood, so by the end of January I decided to start myself on a three-month course of a named (as opposed to a generic) multi-vitamin & mineral supplement. Because I had no idea of which vitamin or mineral I was low in, I figured a multi-tablet would have a wide spectrum in balance with one another. I chose one designed for women aged 55+ solely because of the high percentage level of ingredients. The book explained that a 100% reference value wasn’t the maximum dose per day but the minimum needed to keep a person functioning. It also emphasised information I was picking up elsewhere: vitamins need at least one month to take effect and minerals three months. The six Brazil and almond nuts per day remained my fail-safe.

February 2019. The state of my skin on my lower legs [flag] was not improving. I made an appointment at my medical practice, not with a GP but with the resident prescribing pharmacist. I considered this had two benefits: a GP appointment is a flat 10 minutes whereas a pharmacist appointment is much longer so I’d have time to discuss my concerns and theory; the pharmacist was liable to know about over-the-counter balms and vitamin supplements.

The pharmacist listened attentively as I explained why I’d put myself on a multi-vitamin & mineral supplement. You realise the received wisdom is that if you eat a balanced diet there is no need for food supplements? Yes, I retorted, and look where it’s got me. The skin on my legs was inspected and I was prescribed a dermatological emollient.

While smothering on the emollient a memory surfaced, of me doing this to my mother’s lower legs when I was caring for her as dementia took an ever-increasing hold. I felt as if someone had walked over my grave. A search on the Net, and there it was under National Institute for Health and Clinical Excellence: “NICE guideline: Thyroid disease: assessment and management draft scope for consultation (16 October to 13 November 2017)” line 51-52 under Key Facts, sub-clinical hypothyroidism ...include increased cardiovascular morbidity and mortality, increased risk of osteoporosis and potential links to dementia. (Note: I find it interesting that this is not mentioned in the final guideline, NG145, published November 2019.)

Had my mother not suffered from cardiovascular dementia, at least in the beginning? Had she, too, suffered from hypothyroidism which had never been checked for? Not everyone presents with a swelling on their neck. A cursory internet search brought up the known incidence of thyroid disorders running in a family.  I became more determined then ever that I was not going to allow myself to be herded along my mother’s path.

March 2019. The month closed in a surprising array of sunlight. I’d been on the supplements two months. I’d stopped nodding off at odd times, including after I’d eaten, the improvement in the skin of my legs was off the scale, my nails were beginning to strengthen, and my default expression was smiling. That shocked me more than anything. Who knew I’d been suffering borderline depression – for years? How many people prescribed – addicted to – antidepressants were unknowingly living with low vitamin & mineral levels?

April 2019. As the three months drew closer, I continued to improve. I still forgot things; I still had the lump on my neck though it wasn’t as prominent; my brain, though functioning better, still refused to function enough for writing fiction. I wasn’t there yet, but how close was I?

I consider myself a responsible adult: I was taking high-level over-the-counter supplements. I didn’t want to land myself on the side of toxicity. I needed those vitamin & mineral blood tests mentioned on the Facebook support group. I’d also learned that Vitamin B12 stays a long time in the system (up to four months), so I decided to give myself an arbitrary one month without any supplements before seeking the tests. After all, after fighting this far I didn’t want the improvement in my health to start reversing.

May 2019. My GP, GP-1, was not available; I now had little faith in GP-2, so elected to see GP-3. ‘Dismissive’ hardly covers it. I received the ...if you eat a balanced diet… mantra and was subjected to a barely reined-in lecture about how manufacturers were making millions selling unnecessary supplements. I sat through it all, quietly staring into the middle distance, only showing an interest when GP-3 pulled up a graph of my haemoglobin results over past years to emphasise that it would show a bigger dip if I was B12 deficient. (Note: by the time a noticeable dip occurs in a haemoglobin result a person can be seriously B12 depleted and experiencing a massive amount of physical and psychological symptoms – see the B12 Deficiency website.)

Because I didn’t create any sort of fuss I was grudgingly given a slip for a Full Blood Count. I considered refusing it, then decided it would be good to set the results against those pre-supplement. I curtly gave my thanks and headed for reception to request print-outs of past blood tests – of course I had to stand my ground and refuse to be fobbed off (I’d learned it’s our legal right to request these) – then home to initiate Plan B. I belonged to an extremely knowledgable support group and I’d learned I could purchase my own blood tests. And did those results provide a revelation!


When Your Health Turns On You #Hypothyroidism series:

1: Symptoms
2: Vitamins & Minerals
3: Blood Tests
4: Vitamin Co-Factors & the Microbiome
5: Functional Medicine & YouTube 
6: Covid-19 Coronavirus
7: Covid-19 and Vitamin D 

24 February 2020

When Your Health Turns On You: #Hypothyroidism –– 1: Symptoms

It’s been a while. A long while. In the past two years no books have been launched, no books have been written; not even a short story. Life turned on me. To be precise, my health turned on me, and I’m writing this series of daily posts because if you don’t recognise the signs yours could turn on you. I don’t recommend it.

If you’ve not called by before, a pointer: I’m British and live in the UK. We have a National Health Service, free at the point of access, paid for via our taxes. Your mileage may differ, even if you live in the UK.

Back in the summer of 2017 (yes, 2017 – it’s horrific to think of it) I was launching Pilgrims of the Pool, the final novel of the Torc of Moonlight trilogy. I was bushed. It had come in later than planned because I was working slower [flag]; couldn’t focus for decent lengths of time [flag]; had to fight for the particular word I needed [flag]; and found myself nodding over my keyboard [big flag]. There were probably other symptoms but these are the ones I recall. Like we do, I rationalised: it’s been a busy year / life’s not been exactly smooth / stress…

The Torc of Moonlight trilogy was subsequently launched as a boxed set, Christmas prep loomed, but I was running on empty. Whereas at one time I could keep ten plates spinning in the air, I recognised that it was difficult to keep three going. My memory was failing me [flag], my short-term memory was full of holes [flag]. A rest over Christmas and New Year would do me good. It didn’t.

At this point should I have visited my General Practitioner? (GP-1 – there ends up being a few.) Yes, but what was I going to say? I’m tired? I’m not functioning properly? I’d only had an appointment in the October for my annual blood tests – I’ve been on high blood pressure medication for years [flag] – and when I asked about the results all I’d been told was the usual They’re fine.

             Note: this does not mean what we lay-people take it to mean; They’re fine means the tests
             are “within range”. As I was to discover, you can be very ill but your blood tests can 
             return “within range”. However, I’m getting ahead of myself…

By the end of January 2018 I had returned to writing, choosing a Western novella to cleanse my brain of the complicated multi-layers and dual time-lines of the Torc trilogy. It’s a straight story of revenge and redemption, something I should have completed, polished and proofed in a couple of months, three at most. It was like wringing blood from a stone.

I had to face facts, there was something seriously wrong with me. With my blood tests coming back fine, I feared it was the early onset of dementia. Both my parents suffered with this disease. I was unofficial carer for my mother in her 80s, but hindsight had shown that she had started in her early 70s. I’m in my late 60s. Shit.

How was I going to convey this to the GP without gaining a dismissal? Despite getting a good night’s sleep I was still wanting to nod off at odd times during the day, but now particularly after I’d eaten [flag], even a single sandwich. It was as if my body was shutting down functions it didn’t consider a priority so it could digest the simplest of foods. I dare not drive far at any time of the day in case I nodded off at the wheel.

Then in early April 2018 I awoke to find a swelling on the right side of my neck the size of a large egg split lengthways. It didn’t hurt, it wasn’t inflamed, it was just there. I visited GP-2 as mine was away. I was given antibiotics for a skin infection, despite my querying this diagnosis. By the time I collected the prescription I had a raging sore throat [flag], within a day my voice had turned husky [flag], and then one evening my husband told me I was slurring my words [huge flag]. I began Googling, settled on the thyroid, but my brain was incapable of registering the information I was attempting to read.

After completing the course of antibiotics I returned to GP-2, this time with written notes because I knew I’d never remember what I needed to ask. Blood was taken and I was sent for an emergency ultrasound scan on my neck as GP-2 feared a lymphoma (not that I was told such). Two days later I was having my neck gelled by a very pleasant operative at one of the city hospitals:  Oh, you’ve a swelling on your thyroid. It’s nothing to worry about. Lots of ladies get them.

Note the dismissal: It’s nothing to worry about. Lots of ladies get them.  
So that makes it okay, does it?

1 in 20 people suffer from a thyroid disorder.
After middle-age that can rise to 1 in 4.
It can ruin your life, no matter your age.

The Thyroid is a butterfly-shaped gland sitting across the base of everyone’s throat. It secretes hormones necessary to the balanced function of a person’s metabolism and their immune system.

 

I returned to GP-2 for my blood results. I could hardly string three words together to make a phrase, never mind a sentence. Your bloods are well within range, but you’re interesting: you have antibodies! You could develop hypothyroidism or hyperthyroidism, but it might be in six months, or six years, or sixty years. And if it is, who’s going to care! LOL!

I kid you not. And not once was I prompted for symptoms.

I was told to return in three months for more blood tests to see whether I was moving towards hypothyroidism (underactive metabolism) or hyperthyroidism (overactive metabolism). I was just relieved it wasn’t early onset dementia [flag].

But three months? If I couldn’t function now, what was I going to be like in three months? And what if the blood tests again returned “within range”?  I could see my writing closing down for good. It was an appalling consideration. There had to be something I could do.

And of course, there was. Just about every illness known has either a charity or a support group, or both, dedicated to it. All I had to do was initiate an internet search and find one.

The response was more than I could cope with. Even the simple search request ‘thyroid problems’ pulled up 80.6m results. ‘Thyroid charity’ produced 3.2m results. The most comprehensive for the lay-person I found to be http://www.thyroiduk.org/ and it remains my go-to website, but the state I was in I couldn’t understand its detailed information.

Then while I was following links I hit a piece of luck. A website – I was so mentally out of it I never made a note of its URL and have never re-found it – suggested that eating six Brazil and almond nuts per day might help symptoms. I am not allergic to nuts. Feeling the way I did, what did I have to lose?

August 2018 I walked back into the office of GP-2 a different woman. I certainly wasn’t “cured”, I still fought for words – I still do – but I could now hold a conversation and ask relevant questions. Brazil and almond nuts contain, among others, the mineral Selenium needed for the thyroid to function, and contain it in massive amounts. I also knew something else: I did have Hypothyroidism – I ticked 31 out of the 112 symptoms listed on the Thyroid-UK website – and, as the antibody count illustrated, it was Hashimoto’s Hypothyroidism, an autoimmune disorder.

An autoimmune disorder, however mild it is considered, should never be dismissed.
Once one takes hold the person becomes a magnet for others: 
Type 1 diabetes, coeliac disease, fibromyalgia, chronic fatigue syndrome, 
rheumatoid arthritis, multiple sclerosis, lupus...

GP-2 stared open-mouthed when confronted. This I came to realise is the normal state of affairs. If blood tests don’t return the necessary result, the patient isn’t suffering from the condition. Dare I say it? Yes, I dare: the attitude, if not the actual words, is that it’s all in the patient’s mind. Grudgingly, GP-2 accepted that six Brazil and almond nuts a day “won’t do you any harm”.

I left on a high, I was making progress!

But it was a false high. The question soon became If my body is missing Selenium, what else is it missing? And why?