Low testosterone bilateral orchidectomy

[Stallen]

back in April 2015 I had testicluar swelling, I was treated with antibiotics by my GP.
long story short i had dozens of appointments with my GP and several scans at the hospital for 7 months was told all would be ok, it was just inflammation.

up shot is i was fast tracked in October 2015 to see a consultant oncologist at the urology dept, on examination rather than all being ok, the oncologist informed me, I'd be losing one possibly both testicles but he doesn't think it's down to any tumours just a loss of blood supply in April.

he said he would need to confirm this via blood tests these were done his report, confirms testicluar failure in April possibly due to an infection and that my blood work showed a testosterone level of 3 nmol and that he would preform a bilateral orchidectomy and replace with prosthetic implants , but won't do anything until I start some form of testosterone replacement therapy.

I needed an urgent referral to see an endocrinologist, I can not get an appointment for an endocrinologist until late December 22nd I obviously won't receive treatment until the endocrinologist has done their own routine tests and made their plan of action, therefore any bilateral orchidectomy surgery would be some time in to next year at least.

In the mean time, I'm gaining weight, so far since April I've gained over 15kg my various conditions are suffering, and I'm losing patience with the whole process 20+ appointments no treatment and none likely until 2016, I'm getting to the stage where I feel like disengaging from the whole thing, I know it's probably just the low testosterone that making me feel this way, but it nonetheless it how I'm feeling.

I'm 47 and I type 2 diabetes and arthritis in my hips and spine, high blood pressure, I'm self employed and currently having to live off savings and my partners income at the moment as I can't function, I'm always tired constantly have brain fog a lot of the time, I haven't had a decent nights sleep since April my critical thinking is non existent, I'm struggling to understand why I keep attending so many appointments and not getting treated, despite being told by the consultant a month ago I will need TRT treatment for the rest of my life to be able to function normally, by definition I'm expected to lead a un-normal, non functioning from April until the doctors do there bit and prescribe TRT.

Has anyone here experience of the effects of Low testosterone on their diabetes? Sorry for the long post/rant.

 

[Arab Horse]

Being female I can only offer you sympathy and support. It is sad that you are nor receiving fast treatment when other non urgent things seem to be done quickly. I have has more medical (Dr and hospital) appointments in the last two years than I have had in all the years up until then (and that is a lot of years)! I can only say that my treatment has been brilliant, I am so lucky. Heve you actually been back to your Dr about the lack of haste and told him that you need to be seen sooner as you can't work and it is affecting every aspect of your life?

I hate to say this and I know it is wrong but if you see the consultant privately I am told that they can fast track you for NHS treatment; you only pay for the first consultation which is about £100 but you could ask. While I disagree with having to do that if it gets you treated quickly it may be money well spent. Find out details first as it was a few years ago that a friend did this for a knee replacement.

Hope you soon get some treatment and start to feel better.

 

[Stallen]

Thanks,

I was already fast tracked by my GP to a urology oncologist, it's he that did the urgent referral to the endocrinologist, in order that he can then do a bilateral orchidectomy.

My GP has politely been washing their hands of everything, I had to make 3 appointments with my GP to get to see the report from the urologist they kept telling me it wasn't on file, despite 2 receptionists being able to read part of it to me in the waiting room it was 2 weeks before I finally knew its content it and that I'd lose both rather than just one, but even then I still had to make an appointment to see a GP to get a copy, I'd checked and the consultant provided a report 8 days from when I saw him, GP add a further two weeks before I was told and given a copy, when I had my GP appointment and told them I knew they did have it on file, they again checked, it came on their screen to which they said, oh yeah I remember seeing that.

My urgent endocrinologist appointment came through the post, confirming the appointment is 22nd Dec so I'm seeing my GP next week and disengaging from all NHS services and medication until I've see the endocrinologist, I will keep track of my glucose levels but other monitoring those the endocrinologist will at least find me as me a basic baseline as can be.

I know my GP will be upset about my action, but I need to concentrate on one appointment, this whole year has been appointment after appointment with little affect other than polite conversation of how bad things are, rather than any action plan or treatment to improve things. I think I've got NHS appointment burnout and need to take stock.

I've been diabetic since 2007 also have have arthritis in hips and spine, high blood pressure, calcium deficiency plus high cholesterol. Not forgetting low Testosterone.

 

[Arab Horse]

Sounds like you need to change your GP!

 

[deeds24]

Sorry to hear about your problem Stellan, my husband isn't diabetic but was diagnosed with bladder cancer 3 years ago. We had the same problem with appointments, in fact the day my dad died I was at the hospital with my husband who was supposed to undergo a further exploratory procedure despite us telling the doctor this had been done 2 months earlier. Once someone actually decided to listen and checked my husbands records the doctor agreed this had op had already been done. By the time we got out of the hospital my father had passed away. It took a further 4 months before treatment for the cancer began. Thankfully he was put on a trial drug and this helped beyond expectations, my husband has level 4 cancer. Following a scan last year it was picked up that a tumour had returned, he went to his GP 3 times in 9 months to chase up an appointment with no luck. I decided to take control and contacted the PA of the surgeon to explain the situation as well as making a formal complaint to the health board, within 2 weeks my husband has undergone surgery and will be starting chemo next week. What I'm trying to say is sometimes you have to go around the normal procedure to get the attention you need. Good luck.

 

[Stallen]

Arab Horse and deeds, thanks.

I'm going to see if I can get a care coordinator, as I'll be under 4 different consultants in Dec, I may well end up switching GP at some point but at the moment I see it as better the devil I know, than risk an even worse experience and despite the fumble over the report and other bits I do like my GP.

I'm hoping the endocrinologist will be the logical person to coordinate treatments, I withdrew from all my meds a few days ago and will see my GP next week to discuss, I'm hoping that disengagement from meds may spur them in to action, as it the GP surgery that looks after my meds and especially my diabetes.

I also seem to have less anxiety, than when I had the meds in my system.
Blood glucose was very high yesterday peeked at 35mmol but not so bad today last check 23.4mmol hoping tomorrow will be better.

deeds24 I wish you and your husband well, I hope all goes as positively as it can for you two.

 

[Arab Horse]

Yikes Stallen, that was some glucose; do be careful as there are grave side effects to such high levels. Are you lchf diet or standard recommended diabetic diet which is completely wrong for most of us?

 

[Stallen]

Yikes Stallen, that was some glucose; do be careful as there are grave side effects to such high levels. Are you lchf diet or standard recommended diabetic diet which is completely wrong for most of us?

I'm on a 150 grams of carbs a day, I did the new castle diet last year April to sept, but after seeing seeing a specialist diabetic nurse and nutritionist it was recommended I eat 150-200 gram of carbs, which is what I normally would do, but since the Low Testosterone, I know my brain hasn't been able to switch off from telling me I'm hungry, oddly enough since stopping the meds, the past 2 days I've lost the constant hunger that I've had and not over eaten at all.

Today food wise I've had a wholemeal cheese sandwich, hummus and four small wholemeal crackers, later I'll have some homemade vegetable soup.

I know my numbers are bad but I think the Low T plus my meds, glimepiride 1mg x2 daily Linaglilpton 5mg X11 a day and Metformin 500mg x4 a day.

 

[lindisfel]

Hi Stallen,
I had PC and three years on zoladex so I had some of your problems. I did not have problems with T2D then.
If I had BG like yours I would cut my carbs permanently and see whether my fasting BG came down.
Try eating low GI and to meter and have small meals.
Low T leads to osteoporosis.

I think the low T, calcium and arthritis are perhaps related?
Derek

 

[Stallen]

Hi Stallen,
I had PC and three years on zoladex so I had some of your problems. I did not have problems with T2D then.
If I had BG like yours I would cut my carbs permanently and see whether my fasting BG came down.
Try eating low GI and to meter and have small meals.
Low T leads to osteoporosis.

I think the low T, calcium and arthritis are perhaps related?
Derek

I've been mulling over the oncologist/urologist report, after a few Google searches, it seem a few more pieces may have dropped into place.

It's possible I may have had the Low T for some years.

I was prescribed some fungal treatments before I was diagnosed with T2.

I had a reaction to the treatment, swollen testes in fact the whole wedding tackle, think Coke can and grapefruit, my GP at that time sent me to the hospitals GU clinic, the nurse and Drs were very sympathetic and I was treated with antibiotics and steroids, on one of my follow up appointments at the GU clinic about 14 days after the incident, they noticed glucose in my urine and told me to get my GP to test for T2 so I'm wondering could that have been the trigger the T2 and have I had Low T since then?

Certainly my medical problems could be related to the Low T, as for carbs I did 4 months without carbs, only to end up quitting when I was sent to hospital with 5cm X 5cm left submandibular abscess, a week on hospital food IV antibiotics and emergency surgery.

My bloods tonight were 15 mmol which is a going in the right direction given the past few days , hopefully it should drop further during the night.

I'll be asking wether Low T levels could lead/trigger T2 when I see the endocrinologist.

 

[lindisfel]

Best wishes with your treatment, Stallen
Derek

 

[Stallen]

Hi Stallen,
I had PC and three years on zoladex so I had some of your problems. I did not have problems with T2D then.
If I had BG like yours I would cut my carbs permanently and see whether my fasting BG came down.
Try eating low GI and to meter and have small meals.
Low T leads to osteoporosis.

I think the low T, calcium and arthritis are perhaps related?
Derek

Good news is that I did end up cutting out carbs, BG came down steadily this past week it's been within 5.2 and 7.7 mostly in the 6 range. I also have my appointment to see the endocrinologist next week, so all is very well at the moment and going to plan, and I will see my G.P next year, just to let them know how I've gotten on with my total medication withdrawal.