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NHS T test mix up!

Started by Jestwacked, April 20, 2016, 03:48:21 AM

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Jestwacked

Quite the funny thing happened today. Yesterday I got my T results which according to all sources were actually low , at 7.9. My doctor called me back in and looked worried saying ''Your T levels are actually really high'' then after me telling him that it was 7.9 and that is low on the scale, he looked on my test and said that they had based the results off of the female scale, so in the female scale it was really high. I then told him I wasn't on any hormones which is where I think the mix up was. I think he was a little embarrased and said he would check to see what it was on the male scale and would call me back if anything needed to be done, but he said it more than likely wouldn't and if it is low it wouldn't matter since im going on HRT.... derp  ::) ::) ::)
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HughE

A total T of 7.9 nmol/l is well below the normal male level (the average for normal, healthy men aged 20-40 is 723.6 ng/dl, or 25.1 nmol/l). So you can see that your total T is only about a third of what it should be if you were a cis male. Even though you're going on female HRT, ideally the doctor should determine what's causing you to have low testosterone, just in case it's a pituitary tumour or something. Most likely you have some undiagnosed form of intersex though.
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Jestwacked

I had several MRI scans last year regarding headaches and they all came up clean, also a number of CAT Scans have come up clean, unless something has developed in that time, I don't see it being likely. With regards to all the other blood tests that came in normal as well, he didn't seem concerned that the T was low.

Though I must admit I was curious about it being so low too. There are things which contribute I think. I am overweight, eat alot of refined carbs (not junk food though). Without going into TMI I also have had quite a few hard blows to the testicles as well, curtsey of fights and friends etc, which may have caused damage.

Considering the amount of other factors that can lead to low T, my normal blood tests results, my normal (apart from T) hormone levels and the fact that I am other wise perfectly healthy with no other symptoms pretty much rules it out (thankfully).

The suggestion about the undiagnosed intersex was interesting though, what exactly does that mean?
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Cindy

I wouldn't get too worked up. A normal scale covers (usually) 95% of the population being too high or too low is not really relevant unless there is an underlaying reason, for many there isn't. You are just demonstrating what a normal distribution is.

An intersex condition will only be determined by karyotyping to see what your XX, XY, XXY,  etc status is and it is expensive and probably unnecessary.

Your GP may suggest a shot of T to see if that 'resolves' your trans feelings. When it was suggested to me I told him that the script would be in the bin as soon as I left the room.

I just said I wanted HRT and that would resolve it as I knew I was female.
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Jestwacked

Quote from: Cindy on April 22, 2016, 03:47:34 AM
I wouldn't get too worked up. A normal scale covers (usually) 95% of the population being too high or too low is not really relevant unless there is an underlaying reason, for many there isn't. You are just demonstrating what a normal distribution is.

An intersex condition will only be determined by karyotyping to see what your XX, XY, XXY,  etc status is and it is expensive and probably unnecessary.

Your GP may suggest a shot of T to see if that 'resolves' your trans feelings. When it was suggested to me I told him that the script would be in the bin as soon as I left the room.

I just said I wanted HRT and that would resolve it as I knew I was female.

If he tells me that I can tell him where to shove it  ;D
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Cindy

Quote from: Jestwacked on April 22, 2016, 03:50:43 AM
Quote from: Cindy on April 22, 2016, 03:47:34 AM
I wouldn't get too worked up. A normal scale covers (usually) 95% of the population being too high or too low is not really relevant unless there is an underlaying reason, for many there isn't. You are just demonstrating what a normal distribution is.

An intersex condition will only be determined by karyotyping to see what your XX, XY, XXY,  etc status is and it is expensive and probably unnecessary.

Your GP may suggest a shot of T to see if that 'resolves' your trans feelings. When it was suggested to me I told him that the script would be in the bin as soon as I left the room.

I just said I wanted HRT and that would resolve it as I knew I was female.

If he tells me that I can tell him where to shove it  ;D

But in a lady like manner! :laugh:
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Jestwacked

Quote from: Cindy on April 22, 2016, 04:05:28 AM
If he tells me that I can tell him where to shove it  ;D


But in a lady like manner! :laugh:

Hmmm perhaps if I am feeling nice x3

Also, out of curiosity, does having Low T levels to start with make initial HRT ''easier''? Like if you had 50 or something would that make it harder
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Cindy

Quote from: Jestwacked on April 22, 2016, 04:11:45 AM
Quote from: Cindy on April 22, 2016, 04:05:28 AM
If he tells me that I can tell him where to shove it  ;D


But in a lady like manner! :laugh:

Hmmm perhaps if I am feeling nice x3

Also, out of curiosity, does having Low T levels to start with make initial HRT ''easier''? Like if you had 50 or something would that make it harder

Not really. I was started on E with No anti-A and my T went to female levels within a month. I took anti-AA to modify my body hair growth to a female cycle.

E is a very powerful suppressor of T.

Just asking did you have a SHBG done in the original work up? f so was it in the 'normal' range?

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Cindy

Oh and from memory your prolactin was low?

Which is good.
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Jestwacked

Quote from: Cindy on April 22, 2016, 04:16:58 AM
Oh and from memory your prolactin was low?

Which is good.

Serum Testosterone - (BH) - 2. 7.9 nmoI/L 0.50 -2.80 nmol/LSatisfactory - no action required
Serum total HCH level - (BH) - 1. Normal <5 iu/L <5.00 iu/LNo action required
Serum LH level - (BH) - 1. Normal 2.3 iu/LNo action required
Serum FSH level - (BH) - 1. Normal 0.6 iu/LNo action required.

That was the results of the hormones.

This was what was requested by the gender clinic. As well as diabetes test (normal), Cholesteral test (Normal), Liver function test (Normal)

The full blood works were totally normal apart from low T
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Cindy

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Jestwacked

Quote from: Cindy on April 22, 2016, 04:22:41 AM
That is all good.

Yeah, Dr.Webberely said they were great, just waiting for my pescription now :P
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HughE

Quote from: Jestwacked on April 22, 2016, 04:20:24 AM
Serum Testosterone - (BH) - 2. 7.9 nmoI/L 0.50 -2.80 nmol/LSatisfactory - no action required
Serum total HCH level - (BH) - 1. Normal <5 iu/L <5.00 iu/LNo action required
Serum LH level - (BH) - 1. Normal 2.3 iu/LNo action required
Serum FSH level - (BH) - 1. Normal 0.6 iu/LNo action required.
I'm really surprised you've been told those results are normal. Here are my results after I'd stopped taking fertility drugs for 5 days:


As you can see, my total T of 15.2 is still within range (although that is already a drop of about a quarter from when I was taking the fertility meds, and I definitely didn't feel 100 percent on the morning of that test). You can see that your level of 7.9 is below the bottom of the range (10), and should have been flagged as low. Your FSH of 0.6 should have been flagged as well, it's well below the bottom of the range (especially considering that lab reference ranges are based on people who are having blood tests, who are usually sick and/or elderly). Note how a warning has been flagged against my FSH level, which was 1.2.

An LH of 2.3 (near the bottom of the range), near zero FSH, combined with your very low (for male) testosterone reading, shows that you're suffering from secondary hypogonadism (meaning that the reason your testosterone is low is because your brain regions that control hormones, the hypothalamus and pituitary, aren't churning out enough of the signals LH and FSH, that tell the testicles to produce testosterone).

It doesn't really matter from your point of view, since you're going on female HRT anyway. Still, it's not very good that the NHS are telling patients with severely abnormal hormones that everything is "normal", and doing nothing to investigate further!
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Jestwacked

Quote from: HughE on April 22, 2016, 05:23:24 PM
I'm really surprised you've been told those results are normal. Here are my results after I'd stopped taking fertility drugs for 5 days:


As you can see, my total T of 15.2 is still within range (although that is already a drop of about a quarter from when I was taking the fertility meds, and I definitely didn't feel 100 percent on the morning of that test). You can see that your level of 7.9 is below the bottom of the range (10), and should have been flagged as low. Your FSH of 0.6 should have been flagged as well, it's well below the bottom of the range (especially considering that lab reference ranges are based on people who are having blood tests, who are usually sick and/or elderly). Note how a warning has been flagged against my FSH level, which was 1.2.

An LH of 2.3 (near the bottom of the range), near zero FSH, combined with your very low (for male) testosterone reading, shows that you're suffering from secondary hypogonadism (meaning that the reason your testosterone is low is because your brain regions that control hormones, the hypothalamus and pituitary, aren't churning out enough of the signals LH and FSH, that tell the testicles to produce testosterone).

It doesn't really matter from your point of view, since you're going on female HRT anyway. Still, it's not very good that the NHS are telling patients with severely abnormal hormones that everything is "normal", and doing nothing to investigate further!

I'm not being funny, and I appreciate what your saying. But my results have been looked at by two different GP, the lab has studied the results a second time and they have been analysed by my gender specialist who approved my treatment based on the results. I am not looking for medical advice from forum users nor are you qualified to give it. I am not being rude, but I do not want that sort of advice from you especially if it has been looked at by four different parties. The 4th party being totally neutral from the NHS by the way.
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Cindy

You will need to stop being belligerent or I shall take action.

Forum Admin.
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Lisa55

To be fair and I am not a doctor or pathology tech, but reading the NHS HRT guidelines it doesn't specify values to aim for as it states that absolute values are dependent on the lab performing the test and the method used, as such it tells the prescribing doctor to aim to achieve levels relative to the normal ranges for their lab. So whilst we can get an idea of if we've in the ball park from generic ranges, we cant say for sure if there is a problem without reference to the actual labs ranges. 

As far as I can tell we do not have the lab ranges for male patients in Jestwacked results, but looking at my own I had;

Serum T  11.1nmmol/L  range 8.40-28.70nmol/L  and was labelled borderline and to see calculated Free T, which was

Free T (calc) 0.172 nmol/L range 0.17 - 0.59 nmol/L so I just scraped in.

But one thing we can take away from that and comparison to HughE's lab results is that my lab has a low range value 1.6nmol/L less than HughE's lab, and Jestwacked result is only 0.5nmol/L less than my labs bottom range value.

So given her GP has looked at the results in reference to the lab's male range and decided her T was either in range or close enough not to be of concern, especially given she wasn't complaining of the problem's men experience with low T and was about to embark on a course of action to lower it still further.

In my case I had a similar reaction to my low T from Dr Webberley, my GP and GIC endocrinologist who said meh don't really care about that value we will get it much lower than that.

My GIC endocrinologist also accused me (jokingly) of licking someone else's HRT as my E was also getting up there into the female range  (107 pmol/L) and mentioned that this could be explained if I tucked frequently as it can have such an effect.

So whilst Jestwacked has got into hot water with her replys, she actually is correct that we shouldn't be shade tree diagnosing her based on unknown lab ranges and generic guide values when multiple of her care givers who have all the data say its nothing to worry about.

ETA Oh and the other thing to remember with T is that it is highest in the morning and declines throughout the day, My GP advised me to get my blood drawn before 9am for this reason, Well I wasn't waiting 2 weeks for a early appointment (plus a week for the results) so said to hell with it, take my blood at 4pm and if its a big deal you can have some more for an accurate T test later.
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