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. 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, 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 £10 less.

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 

4 comments :

  1. It is very sad, and an indictment of our currently underfunded health service, when any individual is given poor advice, poor service and inadequate provision to deal with a long standing medical problem. Thank you for putting this information out publikly, Linda. I think the problem with the NHS is that this is seen as a 'quality of life' issue rather than as 'life threatening'. For the world's fifth/sixth largest economy, the whole situation is unacceptable and almost entirely down to underfunding for years by the Government. We can but continue to struggle on as best we can, since they appear to be deaf to protest, regardless of how reasonable such action may be.

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    1. Which is, I believe, we need to keep an eye on our own health. At least then we'll be able to ask the right questions. Thanks for calling by, Stuart.

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    2. I agree, we must accept some responsibility for our health. Fortunately, although the organisation is collapsing from lack of resources, individual operatives are often willing to do as much as they can to help. When you find someone with empathy, it's worth hanging on to them.

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