A Letter to My Endocrinologist

Dear Dr xxxxxx

Thank you very much for your courtesy and attention during my appointment with you on 25 September and for copying me in on your letter to Dr xxxxxxxx together with the results of the various blood tests which you carried out. I should be grateful if you or your secretary would let me have a full printout of those results, together with the reference ranges as the rest of this letter is having to make some assumptions based on what the Hospital publishes as its reference ranges.

I apologise for not having been as articulate as I perhaps should have been during my appointment. Although I am improving slowly my brain is not quite as functional as it was and this has affected my clarity of thought to a degree which in turn has affected my vocal articulation, hence part of the reason for writing this letter. I omitted to mention that I have been monitoring my body temperature on an ongoing basis which has been consistently low (rising temp was 36.2 when I started to monitor at the end of August). I believe that I did voice concerns at my appointment regarding adrenal insufficiency but failed to mention the temperature readings.

My Vitamin D level (43.5), as I suspected, has come out as insufficient by the Hospital’s reference ranges which state levels above 50 to be adequate so I’m afraid I cannot agree with your assertion that my results are “normal and re-assuring”. The Vitamin D Council recommends a level above 40 ng/ml, which I understand equates to 100 nmol/L, showing a much larger insufficiency than the NHS recognises.

Secondly, I believe the published reference ranges for the ESR are 5-15 which would indicate that my result of 20 shows a slight elevation which in itself may not be too concerning but when put together with the fact that my TgAb shows over three times the upper limit seems to me to indicate a degree of inflammation, most likely from a form of autoimmune thyroiditis.

Thirdly, TSH showing at 1.8 and therefore lower than the test I had carried out is not altogether surprising since the bloods were drawn after midday rather than first thing in the morning when TSH is at its highest. Although my TSH falls within the “normal” range as defined by the NHS (and indeed is within “normal” range for most organisations) there is a common view on the thyroid support forums (and a number of medical studies have been carried out to support this view) that when TSH is suppressed properly (i.e., below 1.0) this often reduces the antibody level. This view has been supported and verified by a large number of members of the forum. Personally, I’m not a fan of waiting until an autoimmune condition atrophies my thyroid gland entirely to be treated (it seems to me that Ord’s thyroiditis is probably more likely than Hashimoto’s as I don’t recall having suffered from any hyperthyroid incidents over the years).

The private blood test that I had done also indicates a less than optimal B12 level (376), despite falling within the “normal” range (142-725). There seems to be wide opinion that anything less than 500 should be of concern when put together with clinical symptoms. There is a Neqas alert regarding false normal B12 results and the risk of neurological damage:

www.ukneqas-haematinics.org.uk/content/PageServer.asp?S=581567449&C=1252&Type=G&AID=2

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

I am fully aware that there is a great deal of debate about normal vs optimal ranges for these tests, when these things are put together, I believe they paint a picture which I seem to be the only one seeing at the moment. I know this is mostly due to the fact that I know myself and have become much more aware of my health and symptoms since having CFS but the fact the remains that I am far from fully functional. I have a very long list of symptoms, most of which I was unaware were potential symptoms until recently, not having put the pieces of the puzzle together until I started to research my health issues.

I went from being very active and hurtling down to the road to improving my short and long term health: cycling, walking, horseriding and losing nearly 3.5 stone – to being someone who found that despite working hard and having an average daily deficit of 300+ calories was putting weight back on again. To then find my energy levels getting lower and lower, getting breathless from climbing one set of stairs and being unable to walk more than a mile or two without having to take to my bed and sleep for excessive amounts for a day to compensate was frustrating beyond belief.

The fact that self treatment so far is improving my symptoms seems to corroborate my understanding and beliefs to date. Rather than feeling better in myself, I am seeing improvement in some of my physical symptoms.  What I would like from the medical profession is co-operative investigation together with an application of your collective years of study which I believe can help me achieve my aim of getting back to my former state of activity and health as quickly as possible.  I want to get the root cause of the problem and not just fix symptoms and am currently doing what I can to support my adrenals, thyroid and general health and wellbeing and am perfectly happy to undertake whatever tests and steps are necessary to achieve accurate diagnosis and a speedy recovery. Unfortunately I cannot agree that the results of the tests so far have been normal or reassuring and look forward to receiving the date and time of my next appointment so that the diagnostic process can be moved forward.

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