Sticky Blood-Hughes Syndrome Support
8,090 members8,327 posts

Does APS affect men's testosterone levels?

My husband was 44 when APS suddenly appeared. Within a few months, he became impotent, lost all energy & a number of other things. When his testosterone level was checked, it was below 100. Normal range for his age is 400-600 & a consistant level below 100 can be fatal. He is now on double-dose injections every other week just to keep it between 100-300, unable to reach 400. It takes a few takes to start feeling better after the injection, he feels good for about 5-6 days & the remaining days before the next injection are difficult for him.

Since this happened so soon after his APS appeared, I wonder if there is any connection. Anyone have any input?

19 Replies

Hi Sbncmo,

Do you know i had never thought of that!!!! Being a bloke with APS i was dealing with everything else hmmmmmm will look into it and see if i can find anything, Hopefully another person may have the answer i would be intrested to know now myself.



Thanks Paddy. It seems a lot of men are concerned with this subject.


Hi, I have APS and also have low testerone levels, not as low as you have mentioned but below the norm. I am on patches, but they do not seem to be helping much, there are so many other issues who knows.


Hi LesJames. My husband was given the option of using the patches, gels, or injections. Our doctor told us that in the long run, the injections were less expensive & more effective, even though you have to have the injections every 2 weeks to maintain or attempt to maintain a hormone balance. I'm sure you know that you have to make sure that no one else touches those patches, which can be difficult. If the patches aren't working, you may need to consider an alternative. I hope you improve.


hi im 40 and have no energy at all ,never thought about getting that checked,not so bad as wife going through menopause so we are a right pair


Hi roymelt. I was at the same point as your wife, but when my husband became impotent, I discussed it with our doctor & she had a blood test done on him - simple, results immediately & treatment was started. Unfortunately, since he is still below suggested levels, he remains impotent & struggles with the energy, but he is thankfully alive.

No energy is only one side effect of low testosterone. Have you noticed a loss in muscle tone? Low testosterone will also cause a loss in bone density, making it easier for your bones to break. So it isn't all about sex. It affects a number of things in your body. You may give it some thought in getting it checked. Start feeling better.


I turn 65 in April. Worried about erectile dysfunction over a year ago and started on testosterone gel. Some improvement with ED and better energy levels for a while but effects wore off. Plus it was costing me over €70 per month! So I stopped using it. It had also affected my INR level so warfarin reduced slightly.


Hi David. Now you are an example of a man who has a normal sex drive. People have this image that sex stops when people turn 50-55, but it isn't true. My father had a sex drive into his 70's, just before he died.

How long have you had APS? Did you start having ED shortly after being diagnosed with APS? Being 65, you still have a lot of good years ahead of you! Your INR was affected - did it make it lower? Well, as I mentioned in the other replies, low testosterone does a lot of things to the body. I look forward to hearing your reply.


Here is another interesting fact I learned about taking testosterone treatments - it increases your red blood cells/hemoglobin. My husband & I had wondered about this because his hemoglobin had been high during an emergency last year. He had a blood clot that lodged in the top of his upper sinus cavity for 2 weeks before it ruptured. At the time, we didn't know what had happened. He bled profusely before the ER got him into a bed & took blood samples from him. At that time, his hemoglobin was 18. Over the next 5 hours, he continued pouring out blood while the ER doc messed around before the sent him to ICU with IV's of vitamin K so he could be operated on 36 hours later. When he went in to be operated on, his hemoglobin was 10. They think his hemoglobin must have been 20 when the bleeding started.

So, my husband's taking testosterone shots has saved his life in more ways than one & helped him in other ways - raising his hemoglobin, raising his testosterone enough to keep him from dying, given him more energy now & then, restored his muscle tone & he's had some falls that could have broken a bone, but didn't. And it has probably helped in ways that we are unaware of. So even if you want your testosterone checked & treated just for ED & fatigue, there are many benefits that also come from it.


Don't know about low testosterone, as I have never been tested. I developed APS 8 years ago and that caused emergency heart bypass surgery and my first stroke. Back to the question.

It does affect blood flow and that has adverse effects on certain parts of the male body.


Hi Sguye. I can certainly see APS affecting blood flow to any part of the body, but low testosterone has a number of other effects on the body, ED being just one of them.

Interestingly, even women need testosterone & when my husband goes in for his shots, there are women getting the shots at the same time.


I was only referring to the blood flow.

However an older female relative of my was able to stop using adult diapers at night after getting the testosterone shots. Another relatives female dog was given "T" pills and stopped "dribbling" on the floor when excited.


Wow. I hadn't heard of low T causing incontinence problems. I'm glad your relative is better after starting the shots.

To be honest, I'm relieved to hear from men who have APS & have low T or symptoms of low T. I have asked on other medical sites about a corelation between APS & low T, but never received a single comment.

One day after my husband had received his testosterone shot & was waiting to get his next appointment scheduled, a slightly older man looked at him & said "You look like a strapping young fella. What are you doing here?" My husband told him he had just had his shot that he gets every 2 weeks in order to stay alive. The man said my husband was joking, but our doctor was there & she told the guy, "Absolutely not. If he didn't get these shots, he'd die." Low T is nothing to mess around with.


An interesting question and even more interesting answers. Fatigue, ED, loss of muscle power and lack of libido to such a degree that I couldn't be bothered with paying a fortune for pills that I wasn't really concerned about using!

Guess I'd better be asking for yet anothet test.


Don't forget increasing your risk of breaking bones. It really is a matter of concern. I should have addressed this issue to men & women because women actually have a lot of testosterone. So many men think a lack of labido with age is normal, and to a very small degree it is. But when you have everything else, it's not labido, it's more serious. Testosterone is a necessary hormone at all ages. Again, I find the match of low T with APS to be very interesting. I wonder if any doctors have done any studies on the subject. Let us know if you get it checked & find out anything. I wish you the best.


hi -sbn- glad and thanks for bring this up . i will be seeing my rheaumy -weds 3 14 12 - p called his nurse and asked her opinion on this, she liked the idea ; i amy developing a good ,trusting relationship with her { only been dealing with her for about 4 months ] you are rite on , there is alot to be gained if you are a man and your T numbers fall below 400 . so i am going to adress this - thanks for implanting the thought _____________________ jet actually thanks to all for your imput


Glad I could help. Just a note to all of you who learn that you have low T, the shots are most effective & need to be given every 2 weeks. We were not told this & my husband went for about 3 years before we found out that he should be getting them every 2 weeks. We couldn't understand why he wasn't feeling better or why his T levels weren't going up when he was getting the shot just once a month. It made a BIG difference when he got them every 2 weeks.

If you miss a dose, it takes quite a while to recover. Somehow my husband's shot was missed a couple months ago & he is still not 100%. Our doctor & nurse feel terrible about it & say they will make sure it never happens again.

Best wishes jet!


Do any of those who have given numbers know what the units and scale are called?




Blood is tested in the morning for testosterone when the level is highest & the recommended range varies between medical facilities.

According to WebMD, "the bottom of a man's normal total testosterone range is about 300 nanograms per deciliter (ng/dL). The upper limits are 1,000 to 1,200 ng/dL. A lower-than-normal score on a blood test can be caused by a number of conditions."

According to, "The normal value for total testosterone in males is 270-1070 ng/dl." I did find it interesting to read on this site that one of the things that can cause "secondary hypogonadism"/low T, is the failure of the of the production of hormones to stimulate the gonads & one of the causes of this can be compromised blood flow to these glands from other conditions, maybe excessive blood loss or other conditions that would affect blood flow.

According to Nationwide Synergy, Inc., "300 nanograms/dl is the standard testosterone limit below which it is termed as low testosterone level."

From the info I've looked over, only part of which I've listed here, it seems the standard minimal level is 300 ng/dl. One site mentioned autoimmue disorders of specific organs, so it wouldn't apply to APS. All these sites listed reasons that contribute to low T, but none of them applied to my husband, which still leaves me wondering about the connection between blood flow & low T, which came close to mentioning when it talked about conditions that would affect blood flow.

Well, Tim, I have probably given you more information than you were actually asking for & I hope I did answer your question. Let me know.


You may also like...