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Ask your questions to our Clinical Nurse Specialist Sue, who has lots of experience...
I have been taking Testogel since April after my 2nd orchiectomy following testicular cancer. I have been taking 50mg per day and my consultant reported that my testosterone levels are a bit low and that I should up my dose to 75mg. This means that I need to take 1.5 sachets per day.
My question is if I open 2 sachets and leave 1 half full can I use it the next day or is it going to deteriorate and be ineffective? The doctor/pharmacist didn't seem to know. Are there alternative ways to take Testogel rather than the sachets?
Thanks in advance.
Like yourself, I underwent my second orchidectomy in June, 20 years after my first one! I have been on Testogel since.
I began on one sachet a day, like yourself, but that was not enough as I felt pretty awful and my testosterone level was below normal (about 8). So since July I have been on 1.5 sachets a day and I feel absolutely fine on that dosage. My testosterone level is about 18, which is probably about right for a guy of my age (I'm 43). I
I can't really answer your question but I wouldn't advise preserving the half sachet until the next day. One alternative is to take one sachet one day and then two sachets the next day, so there is no waste. But then the dosage is a little unevenly spread.
I feel a bit guilty as it seems wasteful.I currently need to arrange a repeat prescription of 100 sachets every seven weeks but I can't think of any way round it. I may ask the GP to increase the prescription to 200 sachets per prescription as this will be cheaper (for me) and will mean sorting the prescription every 14 weeks.
Re: alternatives to Testogel. Nebido might be worth a try for you. it is an injection every 10-12 weeks and I know there are a few guys on here who it works well for. I did try it myself but it didn't work for me.
Hope that helps a little
Thanks for your reply.
I am 42 and I had an 11 year gap between my surgeries! Good to hear that you sorted out your dosage. I will do as you suggest. I did think it was a bit of a pain to save 1/2 a sachet each day.
By the way, when you say "...this will be cheaper...", you are not paying for your prescriptions are you?
I am paying for them. Should I not be?
You can get a Medical Exemption Certificate which gives you free prescriptions for all cancer related treatment, including ongoing testosterone replacement.
You just need to fill in a very simple form and send it off and they send you a card a couple of weeks later. Do a search on the internet for Medical Exemption Certificate and you will find all the instructions.
Get one quick!
I can't believe that that never occurred to me before! I will defo sort that out. Thanks for the tip.
Just out of interest, what was your most recent testosterone reading? I've been chatting with one or two guys on here about what sort of T level is considered normal for men our age.
I think my consultant said it was around 6.5 and that it should be above 10. Does that sound right? (he had just told me my scan was all clear and I found it hard to concentrate on anything he said after that!)
Being totally honest though I have not noticed any adverse effects from it being at that level. Maybe once I get it to the right level I'll notice a difference...?
Fully understand the relief from a scan all clear. It feels like winning the lottery
The normal testosterone range is between 10 and 30. Below 10 is considered abnormal.
On diagnosis mine was 4.4 and I got chronic low testosterone symptoms (moody, dizzy, irritable, wanting to murder people!). I still felt bad when it was 8. The other main symptom was chronic muscle and joint pains, which are improving slowly.
But we're all different and maybe you are coping ok on your level.
I think there might be some knock-on health effects of low testosterone surrounding bone density and muscle aches, which might be why your doc may want it to be higher
I've used testogel for 6 months (before switching to injections).
If you only need 1.5 sachets a day, I found it ok to leave half a sachet (with the end folded over), or you could take 1 sachet in the morning and then 1 in the evening - that way you get 1.5/day. I definitely needed more than1 sachet, and was advised to swap to 2.
I was told 'normal' levels are 8~32, but I felt awful at 10.8. Testosterone declines with age and the 8~32 range covers men from 20 to100. A level of 11 would less than your average 85 year old. An average level for a 40 year old is ~20.
I'm on the medical exemption certificate - its valid for 5 years and gives free prescriptions. After that I think there is an option of making one (largish) payment a year after that prescriptions are free. I only need 5 injections a year and so it might be cheaper for me to pay normal prescription fees when the exemption expires.
Alternatives to testogel are injections - not suitable for everyone, but I find them to be less hassle. I'd advise getting your levels up using the gel, and once stable try the injections, but monitor them closelt and if it doesn;t work for you, then swap back to gel.
I've started on 1.5 sachets per day now so will see how that goes.
Sorry to jump in on this thread, but I've found you've answered some of my questions to the feeling of being knackered/wiped out and increasly impatient everyday. I was tested for my testosterone levels three weeks ago and found out yesterday that they were 10.4 but the secretary (or me) didn't know what that mean't? She was going to get the nurse to look into it and let me know sometime today. Now I have an idea of what they are going to say today?
Since having my testie off last December they found out that the cancer had spread into my lymph nodes at the bottom of my back and I had three round of BEP in January which they told me had worked in June as the tumor was regressing. During my second round I started having blood in my wee and they told me this was uncommon, but as my immune system was on it's arse I put it down to something that just happens? Ever since then (Mid February) every time I pass wee (and semen) I have a burning sensation that continues to curl my toes and I'm now having a delay of a few seconds of the sensation of passing water before anything actually comes out??????. Can I ask if anyone has had similar issues as it is really doing my head in now?????? The consultant tells me it's a side effect of the BEP, can't believe I have to go on forever dealing with this????????
On reading up on my symptoms I think it might be an enlarged prostrate as the pipe from the bladder goes though the prostrate and with my tumor on my lymph nodes being next to there I now worried that it is taking over? I've been referred to the Urology department by my doctor to see if they can get to the bottom of it??
Any help is very much appreciated
This wasn't a symptom I had or had heard of before on BEP. I did have 2 weeks of peeing fruit punch, but that was because I had a stent inserted in my kidney drain, and there's only one place to insert the foot long stent. I agree its not fun. My BEP symptoms did include high susceptibility to nose bleeds on blowing my nose, other than that I think my symptoms were the normal ones.
I hope the urology consultation goes well
Sorry to jump on this thread but I am new to the community. I was diagnosed with TC at the age of 15 in 1987. Following surgery and chemo recovery has been good. Over the last five years I have been feeling low, brain fog and a great deal of fatigue.
I have seen a number of doctors and have been told my testosterone level is nothing to worry about. My level over the past five years has fluctuated between 5-9. I have never been on any testosterone replacement therapy. I have been tested for different conditions but all the results have come back good.
I am thinking of going to the Centre of Mens Health and seeing Dr Malcolm Carruthers, who specialises in TRT.
I would really appreciate any advice and any names of good Endocrinologists in London.
Good question. I often wondered about this also. I was on TRT a number of years back and when my pharmacist ran out of Testim gel he gave me Testogel. I actually like Testogel better as it appeared to dry quicker and wasn't as sticky as Testim. However with Testogel once you rip open a sachet the gel is pretty exposed to the air. I was on half a sachet back then and for the short period of time I was on Testogel I used a clothes peg to keep it seeled. I don't know if it worked but it was my practical solution to the problem. At the time there appeared to be a shortage of Testim in all pharmacies. This was a number of years back.
I'm now on Testim again. It comes in small screw top tubes which are very handy. Others now use injections and some people still take oral testosterone
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