Questions for endo appointment

[Florence1961]

I eventually have an appointment with an endo ( after pushing my gp for a quite a while). I have a complicated set of symptoms having been diagnosed with a myeloproliferative disorder (MPN) for which I take medication. Over the past 2 years regular blood tests for the MPN have shown fluctuating TSH and I have gradually lost all my eyebrows, piled on the weight and now have frontal fibrosing alopecia. I don't take anything at the moment for the thyroid as I would prefer to have a definite diagnosis and also time to consider the impact of more medication. That said, I did start supplementing with extra vit B12 and B complex and L Tyrosine after reading some posts on this site, and my mood and energy have been quite stable since then. In preparation for the consultation, what questions would I be best to ask so that I do not waste the opportunity and knowing it's likely to be a brief consult!

[Clutter]

Florence, try not to think of thyroid hormone replacement as more medication. It is replacing low hormone in the same way you are already replacing B vitamins and LTyrosine.

Provide the endo with a bullet list of your other conditions, the medications and supplements you take. Provide a separate list of symptoms you think may be due to hypothyroidism and a copy of the thyroid function tests your GP has run. The TUK symptom checker in the 2nd link below may be useful.

If your GP hasn't tested FT4, FT3, thyroid peroxidase and thyroglobulin antibodies for autoimmune thyroid disease (Hashimoto's) ask whether the endo will order them.

thyroiduk.org.uk/tuk/diagno...

thyroiduk.org.uk/tuk/about_...

[Florence1961 in reply to Clutter]

Thank you for the reply which was useful in my consultation yesterday. I've been prescribed levothyroxine 25gm to start on and had a load of tests ordered with a review after Christmas.

Two things about levothyroxine - I read it can cause hair loss, which is concerning as hair loss is what I'm already struggling with, but figure I best try it and see if it helps the other symptoms.

Secondly I also read there are ways to take/not take levothyroxine, something about not with or close to coffee and recommended timings before eating. Is there a posting on this?

Just read the hypothyroid mum about hair loss and think that will give me some useful information about hair loss.

Thanks for ay other advice.

[Clutter in reply to Florence1961]

Flo, Hairloss can be a side effect of Levothyroxine but it doesn't affect everyone. You may be lucky and when you are optimally dose may find it resolves the hairloss caused by hypothyroidism. I found hair, skin and nails were the last symptoms to improve 2/3 months after I was optimally dosed.

Take your Levothyroxine with a full glass of water on an empty stomach one hour before, or two hours after, food and drink, two hours away from other medication and supplements and four hours away from vitamin D3, calcium, iron and oestrogen.