New Member saying Hello

[MikeDCross]

Results of 4 week after injection blood test, -blood is still thicker than it should be, but it is better than last time -- and GP is now happy that I can exercise fully again;-)

Interesting that 8 weeks after my last injection I had T at 6, at 4 weeks it is 17, will be interesting to see how it drops at the 8 week blood test.

What number % of range
FSH 0.00 -8.38
Full blood count - haemarocrit 0.52 133.33
Full blood count - MCH 31.20 52.00
Full blood count - MCV 94.40 70.53
Full blood count - haemoglobin 172.00 107.69
Full blood count - plateletes 161.00 14.64
Full blood count - RBC 5.51 107.33
Full blood count - White cell count 5.80 35.62
LH 0.00 -19.23
Prolactin 139.00 28.48
PSA 1.18 29.50
SHBG 21.00 8.16
Testosterone - T 17.30 43.84
WBC diff - Basophils 0.06 8.33
WBC diff - eosinophils 0.17 31.25
WBC diff - lymphocytes 1.98 51.30
WBC diff - monocytes 0.52 40.00
WBC diff - Neutophils 3.06 27.37

Oddly, if you had asked me I would have said that my T level was low, as I have seen no improvement in terms of tiredness and energy levels since my last injections. So a question, if my T is at 17 and I still feel exhausted at waking and generally have no energy, what else would I be looking at getting tested?

Thanks

[Carl]

Difficult one. Scrolling back to your initial post you said you had a shrunken pituitary gland or "empty sella". I don't know anything about empty sella syndrome other than it can be primary or secondary, and have different outcomes depending on which one it is. Assuming this condition can affect various functions of the pituitary, then there are 7 or so hormones that could be affected....at least one of these is likely to cause fatigue and no energy on waking. As I said before my pituitary is damaged due to a now removed tumour, and in my case I take Hydrocortisone to replace the Cortisol that my body no longer makes. Without a doubt, if I am really low on Cortisol I have low energy, so it may be worthwhile getting your Cortisol levels checked. This can be a one-off blood test, or a 'Short Synacthen Test' done in hospital where they inject you with a substance that should stimulate your pituitary to, in turn, tell the adrenal glands to produce Cortisol - another longer version of this is a 'day curve' test.

I see Prolactin mentioned in your tests, not sure whether that result is good or bad, the other level (other than T) that my endocrinologist monitors is Growth Hormone. My Thyroid levels are ok, but these are affected by Pituitary function too.

All a bit of a stab in the dark I'm afraid - can't remember whether you have tried chatting to Alison on the Endorcrine nurse helpline to see what she can suggest? - http://pituitary.org.uk/about-us/contact-us/

[MikeDCross]

Carl,

Not spoken to the nurse yet, but I may very well give her a call next week, it is reaching the point of needing a second opinion.

My consultant now wants a Thyriod test to be carried out, which my doctor finally agreed to, so it will happen with my next batch of tests in 3 weeks -- when I'm hoping that my blood has gone back to normal, just because having normal blood sounds reassuring

Thanks

[MikeDCross]

Hi,

Spoke with Alison, who gave me lots of information, and things to ask my consultant; this really helped me to understand what I should be and should not be worrying about.

As a result, I talked to my GP and got my blood tests changed, to give a much fuller picture.

Will not bore you with all the figures, but everything except LH/FSH (which are both 0), look OK, my T levels are still just in range, which was a surprise, as we had expected them to be well below at this point; and my blood is no longer thick - so I can exercise like a loon and be safe.

Got another blood test in 2 weeks, and I see the consultant in 3 weeks, so all is looking good.

[MikeDCross]

Saw my consultant today, and it did not go as well as I had hoped.

Blood tests, generally OK, my T levels have dropped every blood test since my last injection at the start of Feb-16, but are still just in the normal range (by 0.1), but my blood has gone think again =- the haemoglobin estimate is 173 (range 130-169), based on this, I can not start taking T until my haemoglobin estimate is below 169.

She reviewed the haemoglobin estimate for the last 4 years (with normal T levels for the 1st 3 years) and it has mostly been in the 150's, increasing to 180 after to frequent T injections, and the last 2 tests have been in the 170's, which is clearly over the normal rage. she had no idea why it was over the normal range, no suggestions for how it could be reduced. But she was clear, that until haemoglobin estimate is below 169 I cannot take any form of T, regardless of how low it gets, which is not really satisfactory.

Anyone have any ideas what can cause haemoglobin estimate to remain high so long after the last T injection?

Does exercise or diet have any effect?

Any suggestions for how to lower it?

Thanks

[MikeDCross]

In the letter to my GP, my consultant has decided to send me to some unnamed person who specialises in Bone Marrow.

Is this normal? Any idea what a Bone Marrow specialist will do? Should I be worried? and I guess last but not least, is there normally a long or short wait to see such people?

Thanks