Frustration is Increasing

I posted a few months ago and have been frustrated since. I've now been unwell for over a year. I was diagnosed with Hashimotos 30 years ago and that seemed to resolve with synthroid. Then I had large nodules and one lobe of my thyroid removed 10 years ago. Taken off all thyroid replacement after that.

In the past year I've been growing progressively more tired and had headaches across my forehead and behind my eye which was new. 18 months ago I was losing weight with very little effort and was supposedly slightly hyperthyroid on my blood tests. 12 months ago I started gaining weight by looking at food but was told it was just a balancing of my thyroid and my blood tests were "normal". Then I started feeling nauseous a lot and the headaches got worse. In the spring they tested other things in my blood and my ferritin was 17 on a range of 15 to 247 and my prolactin was elevated. A second prolactin test was even more elevated so they sent me for an MRI. I have a pituitary tumor they call a microadenoma that is 4 mm in size but it's causing my pituitary stalk to tilt to the right. My endo doesn't think it needs to be treated. He insists it can't be causing any of my symptoms (fatigue, nausea, palpitations, headaches etc) Now I'm barely functioning and have lost large chunks of hair and am exhausted and still have the headaches and nausea. I've been on iron replacement for 6 months and my ferritin keeps falling on top of everything else. I know some of my issues are iron.

Latest blood tests this week:

Ferritin 11 (normal 15-247)

TSH 1.0 (normal 0.32-5.04)

I also have slightly elevated white blood count, neutrophils and RDW. My TSH has fluctuated between .73 and 1.0 over the last 4 months but it's not a steady increase it's up and down in that range.

He won't do t4 or anything else but the last T4 my GP did do in May was 11.4 (range 10.6-19.7). Any advice? I am thinking I should get a second opinion.

4 Replies

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  • Sorry I hit post too soon. I have asked for a second opinion and my GP has referred me but it could take a few months. The endo I have now says I don't have thyroid problems and my pituitary is not causing problems either.

  • Your ferritin level is way too low. Has your doctor prescribed iron tablets to get your levels in range? Ideally your level should be 80+ but simply getting you within the range will make you feel slightly better.

    Do you have haemoglobin, vitamin B12 and folate test results? Non-optimal levels in these muck up full blood count (red and white cell ) measurements.

  • I have been on iron tablets for 6 months but the levels keep going down on my ferritin )was 17 in May and 11 this week). My hemoglobin is 133 (115-155) and my B12 is 247 (153-655). They didn't test my folate.

  • Your .b12 is too low ,the pernicious anaemia society say it needs to be 1000

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