Testogel- first time user

FormerMember
FormerMember
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Hi All,

had TC in June 2015 followed by 2 rounds of chemo.  Since then all has been perfect in surveillance- bloods, xrays etc.

In the last year or so I was having some symptoms- very tired/complete lack of interest in sex/night sweating (overall sweating a lot)

Back in January they checked my testosterone- it came back at 7.  They asked me to get bloods done by my GP the following week and it came back just under 11. They said thats fine- rock on.  I have had the same symptoms since and I had my latest surveillance check up last week.  The doctor said- these are all symptoms of low testosterone- you need to get started on Testogel. I have my prescription for it and I will be getting it from the pharmacy later today with a view to starting tomorrow.

I have a number of questions:

  • Despite my symptoms Is it stange that they have prescribed testogel 50 mg daily.without taking another reading of my testosterone?
  • At the levels my testosterone have been at should I be wary in committing myself to what will probably be a lifelong commitment?
  • I have the feeling that my testosterone has been low for many many years- even well before the cancer.  What should I expect once I start using it? Assuming my average level was 11 what would 50mg daily raise this to?

I guess I'm just nervous and starting to second guess myself,

Any thoughts much appreciated,

Thanks,

MarK

  • Hi Mark,

    I hope Fox1 will respond soon, but I'll fill in for now.

    - your levels are consistently low, and your spare has had more than enough time to step-up to the job if it was ever going to. I don't see that another testosterone test would tell them anything more.

    - whether to go for supplementation depends on how you feel your quality of life is without it. If its not so bad,  then no need for the supplements, but if you're tired, disinterested and sweating buckets that's not something to endure for the next 50 years.

    - the normal target is to get into the high teens, low 20s. Within a week or two you should start to feel better, and in a month or two may see physical changes such as leaner, more muscle mass etc. if you've been testosterone depleted for years.

    - what level you get to depends on how well you apply and absorb the gel. Always on to dry skin, try and get the maximum on to your shoulders and the minimum on your hands (which you'll wash after application). I squeeze the sachets on to my shoulders and use the tip of one finger to spread it out. People use between 1 and 2 sachets (occasionally more) to get their levels right.

    Fox1 can say more on how to get the levels right, when to test, and give more information on the numbers.

    G.

  • FormerMember
    FormerMember in reply to gregm

    Thanks for the detailed response Greg

  • FormerMember
    FormerMember

    Hi Mark

    It may be worthwhile for you to find a spare few hours and read through the "Testogel" and "testosterone" threads already on the forum as they have valid information from other forum members. It is up to all of us to post as often as we could so everyone can learn from each other, I know I have learned a great lot from Greg and highly value every post he makes.

    First of all;

    What bloods were taken? the biggest mistake most people make when starting TRT (Testosterone replacement) is that they think the total testosterone result is the one and only test that counts.

    If people would post all blood results it would help us all understand better, some of the essential bloods are;

    total testosterone,

    free & bio testosterone (what is left over each day to build bone & muscle)

    PSA (this is vital before you start TRT, you will then find your PSA will initially rise on starting TRT then drop back down)

    Oestradiol

    HCT (Haematocrit) - this is a vital test to ensure your blood does not thicken up (simple terms)

    Albumin

    SHGB

    all above and other bloods are essential and you must be tested ideally every month for 3 months to ensure correct dosage, then every 3 months for first year.

    As Greg says, high teens, low 20's is a desired result for well being, good health, good energy, good erections (both morning awakening erections and love making erections when needed). reduction of stomach fat, muscle and bone growth.

    Use this tool to see how long it takes for effects of testogel (both initial and overall)

     https://www.nebido.com/en/hcp/research/testosterone-tools/effects-tool.php

    Now;

    You say you are starting on 50mg?????????????

    does this mean "sachets" are available again? as there has been a shortage and most people are now on pump application.

    Lets just stay with your 50mg (sachet)

    When we start testosterone Replacement, we all start on 50mg and have monthly bloods taken to increase or decrease the dosage to suit each individual

    forget the assumption that your average level is 11 and the testogel will raise this to the desired level ****This is NOT how TRT testosterone replacement works****

    When you start TRT, your body recognises that you are getting extra testosterone and due to this stops its own production, no if's or buts about this, this is what happens.

    You will add 50mg of Gel, and initially your results will be higher, or may stay the same but at the same time your own bodies production of Testosterone will begin to drop, this is why you need your LH & FSH also tested, both your LH & FSH will drop to around 0.3 or lower within 3 - 6 months as your pituitary gland picks up that you are getting extra (free testosterone) and will send a signal to your remaining testicle to shut down production. This may cause your remaining testicle to shrink a little.

    The essential point is you need monthly and 3 monthly bloods for first year to ensure your dosage is correct, this cannot be determined within 3 months as your pituitary gland is still closing down your own bodies testosterone production at this time.

    Advantages;

    Greater all round energy

    Loss of any stomach fat (love handles)

    return of morning erections and ability to maintain erection

    Muscle & Bone Growth (I personally have gained 2 inches on biceps within 18 months working out)

    General all round good feeling of health.

    You also need to inform your dentist you are on TRT

    .

    My total testosterone level was 14nmol/L prior to starting, which is reasonably normal (in GP terms) but my Free & Bio testosterone were extremely LOW, and due to this I had osteopenia (onset of osteoporosis) weakening of the bones. after 28 months of being on TRT my bone growth is to the point I am no longer considered osteopenia, this was confirmed with DEXA scan, my body, my muscle and my bones continue to grow (I am aged 53) and my gym work has returned to what I used to do as a 24 year old - 100kg squats & 70kg benching (plus Olympic bar)

    .

    I have tried to explain things in "simple terms" for better understanding, the more questions asked by everyone, the more we all learn.

    I value Greg's help & advice over the past year and again the more we learn and share, the more we can help each other, just be aware TRT is very new to most GP's (doctors) and most will play "safe" within written guidelines and this may not help your situation.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Fox,

    Thanks so much for your great information. I was prescribed the 50mg sachets by my cancer clinic but when I went to my gp he told me these are not manufactured any more so he prescribed me the pump.

    You have certainly outlined a lot of questions that I will ask at my next check up.

    I started with the pump yesterday morning, I found it very easy to use- not time consuming. Perhaps it is just psychological but even after just 2 doses I feel some differences. The major one is that my ‘body’ temperature seems to be much better, I always seem to sweat a lot in all types of weather but today I feel much cooler even though it is quite hot. Also My mind seems to be ‘sharper’more Focused than normal.  Hopefully this is a sign of things to come.

    Thanks to all for your input & support 

    Take care

    Mark

  • FormerMember
    FormerMember in reply to FormerMember

    be aware 2 squirts is 40.5mg and there is also less alcohol, so it is more difficult to absorb this, than the sachets.

    You are better applying each pump squirt onto a piece of tin foil and using this to apply to the skin as you ensure more is applied to the skin and none wasted onto your hands. The pump type Gel also dries and leaves residue white powder marks on skin where as sachets tend to absorb better.

    I have written to Besins and complained about this and the more people that do, the more chance of supply of sachets again.

    The U.K. is only one of a few countries that they no longer supply 50mg sachets to. Besins did say they may supply again after World shortage is reduced and back logs made up. I suspect the obvious reason is that it is much cheaper to manufacture the pump type and its all a money / profit exercise.

  • FormerMember
    FormerMember in reply to FormerMember

    Having been on Testogel pump for two weeks now, I feel my old symptoms returning of low T, so decided to research the differences between Testogel 16.2g and Testogel sachets which have worked perfectly for me until the shortage kicked in. 

    On the box of Testogel 16.2g it says 4 pumps are equivalent to 81mg Testosterone.

    1.5 sachets = 75mg 2 sachets = 100mg of testosterone.

    But, if you look at the report below, presumably written by Besin, the percutaneous (absorption through skin)  of the new pump (1% - 8%) is way below the absorption of Testogel sachets (9% - 14%). So, depending on how you, as an individual absorb the new product, (which at best can only be the lower rate of the sachets) no one will be getting the correct dose of T.

    I really think Besin Healthcare haven't thought this through properly - or haven't looked at the maths. But in any case, patients should really be making it known that the new formulation falls short of satisfactory.

    If you have concerns, you can report them using the Yellow Card Scheme
    https://yellowcard.mhra.gov.uk/the-yellow-card-scheme/

    I think this product has come to the market in a hurry and not been tested thoroughly enough. But that's just my opinion.

    Information taken from EMC - www.medicines.org.uk/.../8919
    Testogel 16.2g Pump

    One pump actuation delivers 1.25 g of gel containing 20.25 mg of testosterone
    Percutaneous Absorption 1-8%
    5g (4pumps) = 2.3ng/ml (8.0nmol/l) increase in Testosterone levels in plasma


    Testogel sachets
    One sachet of 5 g contains 50 mg of testosterone.
     Percutaneous Absorption = 9-14%
    5g (1 sachet) = 2.5ng/ml (8.7nmol/l) increase in T levels in plasma
    So, that would mean 4 pumps almost equals 1 sachet -0 .7nmol/l lower

    And 4 pumps is meant to be the maximum you're allowed to take.
    Going by the figures above, I would need to take at least 6 pumps.

  • FormerMember
    FormerMember in reply to FormerMember

    Thanks for that post lnw56

    The absorption figures are very interesting and I will raise this on Monday 11th when I see my Urologist.

    On Monday 4th June I had a further set of bloods taken (peak) levels

    On Tuesday 5th (today) I had Trough bloods taken

    these results should be back on Thursday 7th, so I can take them in to see my urologist next Monday, these bloods were taken after 6 weeks on an increased 5 pump actions daily.

    The results will be my decision as to whether stay on Testogel or move over to TESTIM.

    I will possibly go on injections for 1 year but that will not be until after my August Holidays once I return.

    GREG;

    You have mentioned you have been on TESTIM, what is your opinion / verdict on this Gel?

    I did try one 50mg / 5g tube of this today on top of 60mg Testogel. The top of my thighs are shaved and I rubbed it into my thighs, it appears to be similar in substance to Testogel, but more "creamy" once rubbed in, similar to a moisturiser. I gave it a good 5 or 10 minutes to dry but later found my boxer shorts were stuck to my legs.

    I can handle the longer drying time as long as it provides good results and If I go on it, I will be on 2 tubes, (2 x 50mg) can anyone advise on previous blood results for 2 x 50mg per day (for TESTIM).

  • Hi

    NB prefix a name with an '@' symbol to poke someone  :-)

    I'm on the testogel pump now, trying 4 squirts, had bloods taken yesteray, should have results tomorrow/thurs.

    Testim - never dried properly for me either, so i don't like it. I could sit there for 60mins and still be tacky. I spoke to one of the endocrinology fellows at Addenbrookes and he sadi few people like using Testim.

    G.

  • FormerMember
    FormerMember in reply to FormerMember

    Glad to be of help. Our local pharmacist agreed the figures don't add up. I have been in touch with Besin and they said the sachets haven't been discontinued, so don't know what the problem is there.

    Besins lab have been less than helpful. I've asked them to explain the maths and they just sent through a standard letter in reply basically quoting the patient leaflet. 

    I have now replied to them, asking them to prove the maths that something with less active ingredients and less absorption rates can equal more. It's so frustrating. 

    I've now gone back on the Testogel sachets and hope to be able to keep getting them.

    Why can't they just put that formula in a pump bottle? Weird!

    Thankfully, I don't have a recent cancer problem, but for others on this thread, they have enough to worry about without this addtional stress.

    With regards to the sachets, Besins say they can provide them if your pharmacist gets in touch with them.

    Hope that helps

  • FormerMember
    FormerMember in reply to FormerMember

    Inw56

    You are correct in that Besins have not dis-continued sachets, the problem is that there is a shortage of them and they have decided to slow down supply to the UK until the fulfil back log of other countries. They still "ship-in" supplies but this can be as little as 40,000 boxes at a time.

    I have spoken direct to them on many occasions over the past year and they have said that once the back log & shortage is made up, they will return to "service as normal" supplying the UK.

    I changed my pharmacist due to this, as the likes of asda, boots etc will not go out their way to contact Besins direct.

    My new pharmacist does contact them direct, as do I, and at this moment it is still an on-going battle.

     I know 2 sachets of Testogel work very well for me with all required bloods, I now just need to know my correct dosage for the pump bottles. This way I can use either depending on supply.

    .

    As I, like others will be on TRT for life, it is worthwhile checking what works for you and what doesn't, including injections.

    Besins UK, does not manufacture sachets, they are shipped in and then distributed around the UK.

    The more people that contact Besins direct and state they are having problems with the pump dispensers, the more possibility they will speed up supply of sachets.

    I should have my blood results on Thursday, both peak & trough for 5 pump actuations per day.

    4 pump actuations were simply not working for me.

    P.S. - I suspect the pump dispenser bottle unit is a cost saving exercise, only thing they fail to realise is that if it does not work for people, people will simply use other brands of medication.

    Just a shame TRT is so difficult here, if we lived in the USA, all problems would be solved as they are far more up to speed with all related TRT medications and blood tests including the sensitive Oestradiol test, of which we do not get here in the UK