Finally, after all these years of missed opportunities to diagnose thyroid dysfunction I have been prescribed Levothyroxine for the first time. I walked away from the GP appointment with a sense of disbelief. It's been a battle (as it surely has for many others on this forum).
My GP has prescribed despite my FT4 being within the population reference range and my TSH also well within range. I will explain below.
Firstly, though, I'd like to thank everybody who has helped me on this forum. Using this information has been an absolute game-changer for me. I am very thankful 🙏
The two pieces for advice I found most useful and that helped me advance my case were:
*The reference range for TSH is not an individual's reference range, it's a population reference range. An individual's reference range is narrow whereas the population reference range is broad. There is something wrong if you are at the bottom of the range one moment and the next halfway through! Huge fluctuations within range aren't normal. I kept reiterating to medics that they were looking at a population reference range not my individual range.
*Percentages through the range are important and the actual numbers can be misleading. This was crucial for me (and, at last, a medical professional) to see the steady decline and then massive drop in FT4. The actual numbers hid the story as the labs all use different reference ranges. So unscientific!
I created a file, which I take to appointments (also advice from the forum). It includes:
1. A table of blood test results (full or partial TFTs) over the past year with the all important percentages
2. Ultrasound scan result
3. List of signs and symptoms
4. Photos of normal face and puffy face (very effective)
5. Print out of a research paper quoted in latest NICE guidelines for Hypothyroidism - Persani et al cks.nice.org.uk/topics/hypo... Scroll down to Basis for Recommendation:
etj.bioscientifica.com/view...
With this file of evidence my GP agreed with me and is trialling me on Levothyroxine 50 mcg. He began by offering 25 mcg but having read this forum I insisted on 50 mcg. On previous occasions he had not been convinced of a thyroid issue. So, result!
I still don't have a formal diagnosis of hypothyroidism. This isn't written in my medical notes. It's wonderful, however, to finally have succeeded in getting treatment. It's been at least a decade and I believe probably two decades of being hypothyroid. With all the attendant unnecessary consultations, medical procedures and medications...
My GP agreed that I have primary hypothyroidism as diagnosed by ultrasound, and that I have likely central hypothyroidism based on my blood test results - no significant rise in TSH despite significant falls in FT4.
Crucially, the Persani paper states:
'CeH should be considered when serum FT4 decreases from higher values into the lower quartile of the normal range, in particular when a FT4 decrease > 20% of previous values is seen despite a low or normal TSH'.
I stated that I clearly fit this criterion. And, that this is in their own NICE guidelines source material!
On another note, the endocrinologist I had telephone consultations with is still saying 'nothing to see here', your blood tests are normal, no thyroid problem. I'm going to ask for a second opinion as I want the diagnosis on my record.
I only have a three-month trial of levothyroxine. I realise this is only the start of the next battle but I am so relieved that someone has listened and taken into account the evidence.
Once again, thank you! I'm not sure I would have got this far without this forum. I hope this post may help others in a similar situation - especially those who think they may have secondary or tertiary (central) hypothyroidism. (Persani is your man!) I believe Central Hypothyroidism is only seen as rare because it's rarely diagnosed.
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