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[Hoffgrad]

Hello ladies....

I decided to come back on the site for a while, as I am interested to hear from those of you who are using Testim gel, and what your personal experiences have been. 

I am 57, had a TVH around ten years ago (ovaries remained) and since then I had been using oestrogen patches.  I am very slim with a BMI of 19.   I have always been the same build.  Mother is the same.  I eat well and exercise, but my small frame has always been of concern for me.   I take supplements (my choice) as  even though I eat a very healthy and balanced diet, I feel that I need to 'up' my levels of vitamin D/magnessium/calcium and vitamin E.   I have had two bone scans over the past 6 years and the second one showed a slight deterioration with a caution note that I have osteopenia. 

Whilst many women have this condition in post menopause, and it doesn't necessarily lead to osteoporosis, I really want to keep an eye on things. Prevention is key I think.   It was suggested to me by my own GP (who confesses she has little knowledge of HRT and menopause), that I could try Tibolone as the testosterone may help strengthen my bones.  I gave that a go in summer this year and had to stop as the side effects were worrying.....my mood dropped seriously, and I had pain in my neck, wrists and back.  I had never had this before and it was definitely the Tibolone.  I stuck it out for a couple of months but the low mood turned into depression and I felt worse than ever.  I came off of it.   Recently, the specialist nurse that I started seeing at the John Radcliffe, Jan Brockie, took my bloods and started me on Testim gel to give that a try.

Yes, I know it takes time for these things to build up, but yet again, I had the same symptoms.  Incredible.    What I noticed in my body almost immediately, was that the oedema that I can get from too much oestrogel, disappeared completely.  It was almost like a dehydration and tightness in my body tissue.  Very very odd.  Then the pain in the joints started again.  As I write this, I have severe neck pain in C6/C7 and my wrists hurt again.   My back is killing me but I think that is more muscular, than bones. 

I am due to speak to Jan on Thursday this week, but in the meantime I have been doing the research online (as you do).  I can find absolutely nothing about joint pain as a symptom for women using Testim gel.   I know about the licensing in the UK for this, and that there has been little in the way of testing on women.   

I feel I can't be the only woman with these symptoms, and I am concerned about my bone health.  If it is supposed to help strengthen bones, then it seems strange that I am having bone pain, which I  never have experienced on oestrogen alone.   I switched from patches to oestrogel btw, as I wasn't absorbing the estrodot patches.  I use 2 pumps of the oestrogel which is enough for me... sometimes I use one and a half, if I get fluid retention.  We made sure my oestrogen levels were good before starting the Testim. 

This is a rushed post ladies, so I hope it makes sense. 

Be super to hear about your experiences on this too.

Oh and as a slight aside, my GP (not Jan) said that she would only send me for a bone scan if I took Biophosphates in the case of it being osteoporosis.   That seemed rather like blackmail to me. 

[Hurdity]

Hi Hoffgrad

  or rather welcome back - whoever you were before!

What a blow that the Testim gel seems to affect you like this? How much do you use as a matter of interest? I use testogel and although I get aches and pains (I'm in my 60's) these actually improved after starting testosterone 2.5 years ago. Have you had blood tests for other things like thyroid function or other conditions affecting joints (sorry I know very little about these)? It does seem strange that the symptoms appeared after starting the T gel but maybe it is interacting with something else in your body? Sorry I can't be any more help. I suggest you go to the home page of the forum and do a search to bring up threads on testosterone but I can't recall reading about this as a major side effect. I hope you find a solution....

Hurdity x

[Hoffgrad]

Hurdity...  yes, I have had all the many many blood tests.  Quite a few times in fact.  I had considered thyroid but that is fine.   I do have an auto immune condition... inherited.... and am also a high histamine person and I think that this is why I am so sensitive to various things. 

I know Drugs.com isn't brilliant but I did look on there (due to lack of more science based evidence) and it does mention things like joint pain.  As I say though, I don't know how kosher that site is.   

I am due to speak to Jan, the nurse specialist, this afternoon.   I have though, stopped it as the pain was very bad.  As I say, it was exactly the same reaction when I took Tibolone so, it seem to be something to do with androgens and me.   When I initially had my T levels measured, I was 0.9 nmol, and SHBG was 54.3.   

Yes, I had read all the threads on the site.    I read an interesting book recently.... written by an American doctor called Kathy Maupin.  The book is called 'The Secret Female Hormone - How Testosterone can change your life'.  Bold statement I know, but it  has been the only book I have been able to get on the subject that is written by a medic.   She treats her patients with testosterone implants, rather than gel, which she feels is no good at all.  I remember reading that Professor Studd used to use pellet implants, until they became difficult to get in the UK.    I don't know.... it's so exhausting when you think you've found something that could help.     

So, you have Testogel?   Wondering if that's the same thing that I have.... just different brand name.   Mine comes in small tubes of 50 mg.  A man would use a whole tube at a time, whereas I was prescribed, a pea sized amount per day.

Thank you for your feedback... it's always useful reading others experiences.  x

[peri]

Hoffgrad don't know if this helps but I had a reaction to testogel but am fine on testim.  I can only think it was the fillers in testogel I was reacting to, maybe this could be the same for you?  That said I only use a petit pois amount so each tube lasts me 3 weeks and I probably skip it 1 day a week.  This is because I don't do well with too large a dose, is this an issue for you would you be better off with less? - just a suggestion. Hope you get it sorted because once you get the right dose (for you) it's brilliant in terms of increasing energy and libido, wishing you luck it's been a life changer for me x

[Hoffgrad]

Hi Peri

I'm so happy for you to be benefitting from Testim gel.  That's what I've been using... .not Testogel.  Perhaps I didn't make that clear enough in my post.   

I have just had a telephone appointment with Jan Brockie, and she believes that the problems I am having (with both Testim and Tibolone in the past) are due to my oestrogen levels 'still' not being high enough.  Apparently in order for T to work, your oestrodial levels need to be up.   My last blood reading said they were at only 112 pmol.   And that was with me having been on oestrogen HRT for around ten years!  I've been on 2 pumps of oestrogel and if I take more then I get side effects.  I guess because i have side effects, that means I'm absorbing it though.  How confusing this still is.     Jan said that the problem could be because I have little fat on my body.  If transdermal isn't going to be a good option for me, then I will need to take it orally. 

Anyway, when the readings come back to her we can then review what to do about oestrogen, but for the time being I should leave the T out.    She has also requested that my GP sends me for another bone scan.  I have had two of them and the second one (done in 2015) showed a significant drop in my T score from the first (2011).   I have Osteopenia and therefore fracture risk is increased.   I'm only 57 and I eat so well, exercise, don't smoke.  Don't drink much.   I take Solgar Bone Support supplements.  My GP was really out of order (I felt) when I requested a bone scan a few months ago. She said ... and I quote... 'I will only recommend you have a bone scan, if you take biophosphates as a treatment if you have osteoporosis'.   She also said that there was likely more harm to be done from exposing me to radiation from the scan.   I was spoken to like I was a fool   And yet I know that you are likely to absorb more radiation from the security scan at an airport.  I'm happy that Jan is going to insist I have this done.  To me, being informed is very important, so that I can take other precautions if necessary.   I feel that some GP's only want to do tests when things are really bad.   Crazy.   

x

[Hurdity]

Hi Hoffgrad

Yes Testim and Testogel are the same concentration ie 5g T per 50g gel but with different excipients - so it could be you are sensitive to one of those maybe? You can see that Testim has a greater ingredients list but I've no idea if one is particularly more likely to cause problems in sensitive women? However propylene glycol ( in Testim) is mentioned specifically in the product info for Testim at the beginning (google the product name and SPC for the product info):

"One single dose container of 5g contains 50 mg testosterone.

Excipient with known effect: 5 g contains 0.25 g propylene glycol "

Testim
6.1 List of excipients

Purified water

Pentadecalactone

Carbomer 980

Carbomer copolymer

Propylene glycol

Glycerol

Macrogol 1000

Ethanol

Trometamol

Testogel
6.1 List of excipients

Carbomer 980

Isopropyl myristate

Ethanol 96%

Sodium hydroxide

Purified water

Yes that is a very low reading for estradiol - but levels do vary day to day and during the day too. Mine have only been measured a couple of times and were in the low 200's - they might be a bit higher now but as my symptoms are controlled I don't know.

As you say you want to make sure your levels are high enough to protec your bones and although it is not absolute - I do recall reading that an absolute minimum of around 160 pmol/l or thereabouts was recommended. Not quite sure of the actual stats though.

When did you last have a bone scan? I know that there is a recommended frequency - I think it's between 1 and 2 years?

Your doc should not blackmail you like this - however if it is 1-2 years since your last test then go along with it and argue the case later on - say you will consider it - and then if you do have osteo and don't want to take them make sure you've done lots of research. I don't know the ins and outs - it's a specialised area.

Do keep us updated as to how things progress

Hurdity x

[Hoffgrad]

That's really useful information Hurdity.   Thank you very much.  Here's hoping all is okay.    x