At last a breakthrough

For anyone who has followed my 💩for the last eternity we may at last have a breakthrough on fatigue, thanks to dan1978? He recomended I get my testosterone checked as opiated medicene is know to effect it. Well well after numerous bloods I have found out that 3 or 4wks after a total across the board scan someone has discovered that my testosterone is low. It's 1.3 instead of 8.6 !! That's a massive difference , nearly 80percent out and I sat yesterday with a doctor and she saw the endocronologist report stating its low and she said that's not what's causing you the problem??? Whaaaaaaaat!! Of course that's going to cause a problem , she still wouldn't have it and kept moving the screen so I couldn't see it or question it. She eventually printed it of and proceeded to tell me she would mail the endo for more info. Luckily my normal doctor phoned me today after I requested a call and he picked it up. What on earth are they thinking , I've gone through 4 or so doctors about this, including the longest serving and the 2 nd best in the surgery. Does anyone have an idea were I go next or any experience with this condition.

25 Replies

  • Sorry i don't as i am a lady(well some might disagree,lol) but it does sound bad as it is not just for making babies. I hope you soon might a solution.xxxx

  • It's the sex side of this it is the lo mood/ fatigue/ depression/ no appetite that bothers me, Were done in bedroom athletics .🏆

  • Husband has the same problem, along with the usual dysfunction issues that go with it plus he started growing breast tissue. The doc said all that could be done was operate to remove the breast tissue (as there's a cancer risk) but wouldn't give him testosterone even though it was low. He takes Wellman and zinc as after some research we found that zinc boost testosterone levels as does selenium, which is in Wellman. He got the zinc from Just Vitamins and takes one a day. His testosterone hasn't been tested since as they just discharged him when he said he didn't want the op and no one was interested in his sex life, as he's 60. But it has made a difference, the breast tissue (lumps) have gone and he is much better in the bedroom department. Plus he is not so tired. They blamed the Methotrexate, this stuff causes no end of problems, at least it has for my husband but coming off it presents other issues for him as he gets itchy skin which erupts into blisters if he stops taking it. So good luck, worth trying the Wellman and zinc and see how you go x

  • They won't give him hormone replacement !! Are you in the uk?

  • No too expensive!

  • I'm not so sure Libluce. Did he get a second opinion? Do you know if any specific testosterone replacement therapy was mentioned, I mean when alternatives were discussed at the time the op was suggested as the only option? The one I know about is not expensive at all, it's a 3 weekly injection. Future health is a concern if he's self medicated & not been retested. Lab results vary but generally anything below 6 nmol/l & he would most likely qualify for TRT.

  • No he didn't get a second opinion, the op was offered as the only option, he did discuss with his GP but as soon as methotrexate is mentioned he is referred back to the rheumy, he's got an appointment next week. To be honest he's at the point where he's so fed up with it all, he can't come off the methotrexate because of his skin issues but the methotrexate is causing problems with not only his testosterone but also his brain, with memory problems - he's been diagnosed with early on set dementia, it's mild at the moment but he's been told the methotrexate is prob the cause. He sees specialists for individual bits but no one seems capable of looking at him as a whole. Hindsight is a lovely word but with hindsight I wish he'd never been given methotrexate 7 years ago. His RA has not progressed, he's been told he's in remission but he has the same pains now that he had 7 years ago, he's no better, still taking pain killers but the side effects and problems he's got with the DMARDS are far worse than the issues he has had with RA. Whilst I am sure it helps some people, others are really struggling with it. Another example is our neighbour, she came off methotrexate as it was affecting her liver. The same specialist as my husband, put her on biological a but she starting bringing up blood. They've now found the methotrexate has caused strictures that have narrowed her osophegous and she is seriously ill. Not good.

  • I'm sorry, he really has enough on his plate doesn't he. If he can face it would be not consider a second opinion for TRT if only to protect his general health?

    Whether the MTX is responsible for his EOD or not can a Dermo not be included in forming a different treatment plan, with his Rheumy I mean? It seems wrong that whether the MTX is responsible for two or not nobody is erring on the side of caution & no alternatives have been discussed between the different specialties.

    Sorry about your neighbour too. Even though I didn't tolerate 2 bisphosphonates & had to discontinue both it was a concern for me. My dad died of oesophageal cancer so it was hard to put it to the back of my mind. Has she no chance of an op to stretch it?

  • Sorry for the delay getting back to you, dads 79th birthday this weekend. Re husband only option given is to come off the methotrexate. He tried hydrochlorquine but developed blisters on his skin and inside his mouth, so told to stop them immediately. Sulphazalzine makes him appear as if he's drunk, he's tried that a few times, slowly increasing the dose. Each time he gets a few weeks and starts with dizziness, losing his balance. The rhuemy talked about biological, but as his RA in remission they won't give them due to cost. Our neighbour was in hospital last week to have her osophegous stretched. Saw her this weekend and she's seems a bit better, so fingers crossed. My husband at the Rheumy today so I will let you know the outcome and his GP has referred him on to a dermatologist x

  • I hope you had a lovely time. I don't want to seem like a dog with a bone but your h has in part fulfilled criteria to qualify for biologics (tried 2 DMARDs + MTX). Has it been considered that he's only in remission because of MTX. As MTX is causing a slump in testosterone & he's not being considered for TRT it's therefore putting his health at risk (could this not be considered a fail?). If he comes off MTX he would no longer be in remission & may then fulfil the criteria of the two DAS 28 examinations of over 5.1 taken a month apart. I appreciate this will cause a flare up of his skin, it's brutal but it's a means to an end if that's what's needed to qualify for biologics & a return to better health. That's good his GP has referred him to Dermo, I hope whoever he sees is more sympathetic to his problems & good luck for his Rheumy appointment.

    I hope your neighbour's op has been successful, it sounds like she's better than she was.

  • Thank you for the advice, they were close to giving him the biological so twelve months ago but his das score wasn't high enough. Good point about him coming off the methotrexate and letting him get worse before he gets better. Will see what this afternoon brings!

  • That might help, that he's been considered for biologics previously. It seems inhumane to have to get worse to get that 5.1 or over score particularly as it's to be done twice a month apart but unfortunately it is as it is & if he's to come off MTX anyway he's nothing to lose & possibly everything to gain.

    Good luck for later, let us know how it went?

  • Morning, just an update - rheumy has now diagnosed him with secondary fibromyalgia and give him Amitriptyline to take. He thinks there is a problem with the way he is interpreting pain, hence the itching feeling from the inside. He has been kept on the low dose methotrexate pending getting some information back from his neurologist (he saw this specialist last year in April). He has been put back into the care of his GP who can review his medication re the fibromyalgia. He goes down to three monthly blood tests and will see the rheumy nurse (not the specialist) in another 6/9 months. He has a separate appointment with a dermatologist but given what they now think it is neurologically related think this maybe a waste of time. He hasn't taken the Amitriptyline yet as he is driving this week and rheumy said at least initially he could be quite drowsy. So the saga continues but we do feel that for once in the five years that he has been reporting these issues the rheumy has finally understood the symptoms.

  • You need to see an endocrinologist. They will investigate if its a pituitary problem with other hormones being low as well. It may just be isolated low testosterone. They can prescribe replacement hormones. Can you ask your GP for a referral?

  • I'm on that phone Monday to the doctors or I might turn up Monday morning, I've got a negligence claim in at the moment for not doing the nerve surgery quick enough leaving me in more pain and noy finding out where the damage is , I've been through hell and had to tell them when they missed things . Too rushed now at the nhs , 3 months check ups were too long.

  • Have you had your thyroid checked? This regulates the hormones in your body, you can have over active and under active, and either can cause a lot of problems. This can be checked by a blood test, but I suspect your doctor likely already did this test. I can't really comment on being a man, but with a woman if she is menopausal her hormones dip, and it screws up everything from your mood to your sleeping and causes such hormones for a man would be no different, any imbalance can cause issues. Sometimes doctor suck, and seem not to listen, I think we all experienced this at least once.

  • Sorry I forgot to mention, I also suffer from chronic fatigue. They can not find the cause and repeated tell me it's not my medication. I am on Enbrel, they also tell me it's not what's making my hair fall out. It's just a coincidence that when I stop taking the Meds my hair stops falling out and my fatigue goes away. This is because they don't want to take me off Enbrel cause it is working good on my's just the side effects that cause me grief.

  • Hey Hobbits I am sorry to hear about your hair. Have you ever gone to see a professional about yout hair and had some blood work done etc. I know that you can take certain things that help with hair growth but you may not want to do that because if you are on Enbrel then it may cause you a reacton.

    If you are happy on the Enbrel then stay on it but on the other hand if you want my opinion if you are stressed about your hair then talk to the dr again.

    When I last saw my dr I joked with the nurse that I must do every ones head in with all my questions and everything else that I do when I go to the hospital. She just laughed and said no don't say that but on the other hand I would rather be the annoying patient that wants the best for me and my health than the one who just listens to the dr.. Well that is until the dr's and nurses stop seeing me.

    I have found that carbs ... unprocessed carbs. Give me tons of energy and juicing also helps me energy levels. We are all different but since eating carbs I have never had a problem with my energy. Hope you get your health back on track soon.

  • I have talked every appointment with my Rheumatologist about my hair loss. He personally doesn't think it is caused by Enbrel. I find it very coincidental that I never suffered hairloss until I started taking Dmards, I had some loss with Methotrexate but lost 1/2 my hair from Arava. As soon as I stopped taking these my hair stopped falling out. It started to regrow. Then when I started Enbrel it stated falling out again. 

    My Rheumy told me to talk to family doctor about Thyroid.  My family doctor tested my blood because my Rheumy asked him too, and I am told I have no thyroid issue, they said my blood test is normal. my family doctor also tested my iron and said it is fine  

    Back at Rheumy they also tested my blood and said my iron is low  ( so someone isn't telling me the truth! I'm pretty sure my family doctor probably didn't even test it)

    My Rheumatologist has directed me to take liquid iron, to see if it will improve things like my hair falling out and my nails splitting.  I also had a racing heart it was very scary ( I didn't know this was a sign of iron deficiency) After about being on iron for three weeks my racing heart stopped, that is back to normal  and my hair is still shedding but it has slowed down some, I don't really notice improvement in my nails but it may be too early to tell . 

  • I am not a hair expert but I agree it does seem coincidental that you have started taking these meds and then your hair started falling out. 

    Have you thought about seeing a tricologist?

    I do know that if you go on the thyroid page on this site they will tell you if your iron levels and thyroid levels are ok.

    I take ionic iron and copper supplements because even though my levels are with in the normal range they are not in the optimal range that they are supposed to be.

    I know some people take a product called viviscal for hair loss but I do know that there can be side effects to this product but it does work for a lot of people.

    Have you thought about going to see a holistic dr or your gp and getting all your blood work for b12, iron, folate, ferritin etc. 

    It could also be that your lacking in a lot of nutrients and this is why you are loosing your hair.

    We are all different but I know for me taking things like Chinese herbs has really helped me over the years.. I have never suffered with hair loss but I have had a lot of health issues and needed to start taking herbs and supplement in order to get my body back to normal so to speak.

    Have you rang Enbrel and spoken to them about your hair.  I am not a doctor but if you have suffered from hair loss before may be there is something that you are allergic to in these meds that is making your hair fall out.

    We are all different but if this was my situation I would not just be taking the nurses word for it and I would try triple check that these meds are not causing you an unnecessary side effects.

  • are you in Canada? do you need a referral to see a holistic doctor?

  • no I am currently in the Uk and seeing two functional health drs.  I did not a referral letter to see them.  :)

  • It gets worse because my testosterone is 1.3 and it should be between 8.26 and 29!! I've been complaint of fatigue for months, and stress and depression. This is an almighty failure by the surgery and the doctors , I phoned up a couple of days after my blood test and they said ny doctor would like to speak to me and could I phone back so I did and I asked him and he said they were ok. Then another doctor looked and then another and then one finally noticed, not only am I fighting anger issues from duloxatine withdrawal I'm getting this now.

  • Hi pandora, I don't have RA ihave OA in my elbows and I'm on morphine and gabapentin etc, the fatigue is 85% down to my low test readings and I'm also in bad withdrawals from duloxatine , both these are severe debilitating issues that include horrendous sweats and real uptight / anger/ concentration issues as well as severe depressive/ crying spells etc. it's tough but om at the chronic fatigue clinic tomorow so some of these low test issues might be addressed . I'm hoping because being uptight tired and in some pain/ discomfort is not easy to function . Thanks for responding pandora.

  • Hi aall, going to bump up my old thread again. Went to my appointmr with the cf clinic and as I thought I don't have cfs as suspected but the consultants were a little concerned at my blood test. Eg low t and low progesterone so after being completely fatigued and slept all day I'm a so hoping that this must be at least a good % of the problem and if not I'm thinking all hope is lost and were do I go know , do I have to haul myself up and go for a run?? Even though I'm really tired all the time , other people don't have to do that to live a normal existence??

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