craniopharyngioma - advice needed.

[In2theGroove]

Hi everyone. I'm desperate for some advice. I'm a 36 year old woman who had a craniopharngioma (brain tumour) as a child. The tumour caused severe damage to my optic nerves and pituitary gland, meaning I don't naturally produce most, if not all hormones that are released from there. I currently take: hydrocortisone 20mg, levothyroxine 100mcg, growth hormone injections, Desmospray, trisequens (a form of HRT) and citalopram 30mg (been taking this for 3 years, since I lost my mum).

I've struggled with chronic fatigue, constant aching legs and a general feeling of lethargy for as long as I can remember. It's now getting worse, to the point where I am unable to function and my quality of life is very poor. It's affecting my ability to work and I'm off sick currently. I've been to my GP on numerous occasions who have done blood tests. I was put on vitamin D but my last lot of tests showed that to be high so they've now taken them off me. My most recent blood tests were: Free T4 15.7 and Free T3 5.2. TSH is insignificant due to my hypothyroidism being secondary to the pituitary failure.

My other results were: ferritin 100. They're slightly concerned about this as it is high but the doctors don't know why. I've been sent to have a test for harmochromotosis. My LFTs were also slightly raised recently, but the last test came back as satisfactory, cortisol levels were also satisfactory. IgF1 (growth hormone) was raised at 40 nmol/L so my growth hormone dose will now be reevaluated.

BP was 99/83 and heart rate 91.

I have recently decided to self medicate using NDT. My order of 1 grain NP thyroid tablets arrived this morning and I'm nervous about switching over, mainly because of all my other medication that I take. I'm unsure if I should start straight away on 1 grain or should I slowly reduce the T4? Any advice would be most appreciated.

Vicki 😘

[Clutter]

In2theGroove,

You can switch straight over from 100mcg Levothyroxine to 1 grain NDT. You may want to split the tablet into 2 doses and take 1/2 grain in the morning and the second 1/2 grain 8-12 hours later to spread out the T3 peaks. You can increase dose in 1/2 grain increments every 2 weeks. It's a good idea to hold at 2 grains for 6 weeks and have a thyroid test including FT3 before increasing further. Blood levels may look different on NDT. FT4 is often lower than on Levothyroxine but FT3 should be higher in range.

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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[In2theGroove]

Thanks Clutter. I've just done as you suggest. Fingers and toes crossed they work. Can you send me the link to where I can order a blood test from? Many thanks.

[MariLiz]

Do you know what your B12 level is? Low B12 causes similar symptoms to underactive thyroid and if your ferritin is high it maybe linked to B12 being low as they work in conjunction with each other?

[In2theGroove in reply to MariLiz]

No, but I'm pretty certain it was tested. I'll check with my GP.