Hello I posted a few months ago and I'm still struggling to feel well I have a few health issues but my biggest problem is fatigue Ive just had tests again and was hoping someone would kindly take a look, thanks.
Your ferritin and haemoglobin are both high. Have you been tested for hemochromatosis? You may want to get your liver enzymes tested, ask for an abdominal ultrasound and hemochromatosis genetic tests.
Seaside Susie pointed out a couple of months back that you have the blood profile of someone with possible Central Hypothyroidism. I hope that you can manage to convince someone to take this seriously, as your blood results are still consistent with this theory and if that's the case you need thyroid hormone replacement (regardless of what your TSH is doing). Also if you have been having bad headaches, or get transfusions for a blood disorder (such as thalassemia)*, or received some kind of head injury, or have other hormonal issues or poor temperature tolerance it could indicate a pituitary or hypothalamus problem which would back up your argument about central hypo. I would ask for an urgent second opinion. (A friend had a benign growth on his pituitary gland that caused a diversity of hormonal and other issues).
Also I agree that you need a full iron panel done and other tests (to rule out haemochromatosis). The high Ferritin could just be down to widespread inflammation**.. another reason to get further tests.
* I am sure you would have mentioned it, but central hypo and iron overload can occur in some people being treated with blood transfusions for rare blood disorders. The mechanisms that cause the central hypo are not understood in these cases.
**You have mentioned RA which is inflammatory, but don't let your GP off lightly on this, it does need checking as iron overload is not good.
Thank you for your detailed reply, I do have a prolactinoma. Its just so frustrating to be fobbed off constantly with "its fine, results are normal".
I dont feel normal. I feel ill most of the time, I get so down and plod on until I can't take it any more and make an appointment with the GP just to bang my head on the wall. My ferritin has been consistently high for around two years now. I was checked for RA but all tests came back negative so dx fibro. I have some symptoms of fibro and I'm yet to be convinced. I just know its something else but what, I do not know.
It's very likely that your pituitary gland IS responsible for the thyroid results (so probably central hypo then). I have not read of a correlation between prolactinoma and iron overload, but it would not surprise me there's a link (I searched and found a locked study about it on a University website in the States, but obviously cannot access it).
In the meantime I think you should contact the haemachromatosis charity for help and advice. haemochromatosis.org.uk/sup...
Also, I recommend you get back to the forum with a new post on 'Central Hypothyroidism' as your previous one does not suggest it in the title... it'll attract the forum members that have it (and there are a few). Remember TSH means NOTHING if you have central hypo! You need good free T4 and free T3 - your T4 is low, so your T3 is bound to be low as well.
Medichecks and Blue Horizon do private blood tests Thyroid panel and Iron if you cannot wait for your GP to take notice. Again, I'd ask for recommendations from anyone with central hypo and from the haemochromatosis charity..
Thank you so very much. I have made an appointment for Monday. I am now going to write a new post as you kindly suggested. If neccessary I will get private tests done. I am also going to email the haemachromatosis charity for help to. Once again thank you it means a lot.
I know it must be so frustrating being 'one of the unusual ones' in having a pituitary disorder, but these things are apparently less rare than many would like to make out. It occurred to me that there may be some way of linking these conditions together, but you'd need a top A1 specialist (possibly in one of the teaching hospitals in London) for that... really hope you find your answers.
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