Hi all. Been a while since posting as nothing much has changed regarding unwanted symptoms. Doctors and Endo seem to have left it all with me. The only thing the Endo could tell me was that I needed more Oestrogen so he raised my HRT dose.
I decided to get a blood test done to check my Testosterone levels after reading about some of the symptoms it causes, flushing/sweating, weight gain, hair loss, and fatigue. All of which I still suffer with. My levels came back as Result: 0.087 ----- Range: 0.10 - 1.42. The note said to see doctor as level was low.
When I mentioned it to the doctor she told me to go back to the doctor I got the results from and get treated there as she wouldn't of looked at Testosterone levels for my symptoms. Taken aback, I told her it was an online blood test, but she is still reluctant to investigate Testosterone levels, she said they fall anyway as you get older. She put my fatigue and flushing down to getting older too(!) So just when I thought I might be getting somewhere, it all fell flat.
If I could raise my levels with supplements rather than medication that would be better for me. But I'm concerned that while I'm not taking anything to help, it will only get worse. Can it get worse?
My testosterone wasn’t tested but I was told by a dr that she would issue it to me on a return visit after introducing estrogen patches for a few months. I tried to see the same dr but she had left the practice so I saw another who told me testosterone couldn’t be prescribed without a gynaecologist letter. Luckily I was already seeing one for another issue but my appointment was months off. I did talk to the gynaecologist at my appointment and he said he would write to the Drs to ok this. It took almost a year from being told to ask about it at next appointment to getting the prescription and even now I have to order 6 weeks in advance due to delays in getting the supply. It hasn’t made any difference to my tiredness but I’m told I’m much happier. I’ve lost a few pounds but nothing major. My hair is slightly thinner on top but that is listed as a side effects as is extra hairness elsewhere on the body.
If you still want to try it get an appointment with a gynaecologist to ok it. Good luck
I don't know enough about testosterone to comment properly but i would challenge the doctor because that result is below the reference range, which suggests to me that you need to be supplemented with testosterone, but maybe someone with more insight can advise you better.
of more concern to me is that the doctor put your low testosterone down to your age. Not investigating further because of your age is direct discrimination and contrary to the Equality Act 2010.
Age is a protected characteristic and public body's cant treat you less favourably because of your age. When the doctor says s/he wont investigate your low testosterone, fatigue and flushing because of your age, s/he is treating you less favourably than other patients because of your age. See section 13 of the Equality Act 2010. legislation.gov.uk/ukpga/20...
Also see "Implementing a ban on age discrimination in the NHS - making effective, appropriate decisions" gov.uk/government/uploads/s...
it says "From 1 October 2012, it will be unlawful for service providers and commissioners to discriminate, victimise, or harass a person because of age. A person will be protected when requesting, and during the course of being provided with, goods facilities and services. If a member of the public aged 18 or over believes that they have been treated less favourably because of age, they will be able to take organisations or individuals to court - and may be awarded compensation."
i would write a letter to the surgery outlining the discrimination, what the law and the NHS say and request a further appointment probably with another doctor at the surgery and insist on a proper investigation of your low testosterone.
its up to you if you go further, but I personally would advise them that if they don't stop the age discrimination, then I may take court action.
To be fair, as reported by the OP, that is not what the Dr said. She wrote "she wouldn't of looked at Testosterone levels for my symptoms. Taken aback, I told her it was an online blood test, but she is still reluctant to investigate Testosterone levels, she said they fall anyway as you get older." Reaching an assumption that a diagnosis is unlikely due to the presenting symptoms, that is further backed up by an awareness of particular age factors, is not discriminatory. She did not refuse to investigate or treat because of the OP's age, she concluded that in light of symptoms and relative age, that there appeared no reason to look further down the testosterone route. Her factual accuracy, attitude to private blood tests, and intransigence in the face of evidence that a patient's levels are below reference range, may be cause for challenge on a medical professional basis; but not on the basis of being discriminatory.
I agree with you that "factual accuracy, attitude to private blood tests, and intransigence in the face of evidence that a patient's levels are below reference range, may be cause for challenge on a medical professional basis;" by not recognising the blindingly obvious in front of her eyes.
I don't want to get into an online argument with you especially when it involves another forum user but I disagree with you about age discrimination. The OP said
"she (the doctor) is still reluctant to investigate Testosterone levels, she said they fall anyway as you get older. She put my fatigue and flushing down to getting older too(!).
To me the doctor is clearly treating her patient less favourably by dismissing the patients symptoms as getting older. The NHS document Implementing a ban on age discrimination in the NHS – making effective, appropriate decisions clearly states on page 6 that
"chronological age must not be used as a substitute for an individual assessment of a person’s needs" which is what the OP reports.
and on page 8
"Direct discrimination is where someone is treated less favourably in comparison with another e.g. where an older person is refused access to a particular service simply because of their chronological age".
and on page 11
"Chronological age should not be used as a substitute for an individual assessment of need nor should assumptions be made based on a person’s chronological age or age stereotypes".
Being reluctant to investigate testosterone levels because " they decrease with age" is clearly treating the OP less favourably because of her(?) age. And the doctor used age as a substitute for an individual assessment of her needs.
When my partner had severe hip pain, her GP put it down to her getting older. She knew it wasn't that and demanded a referral to an orthopaedic surgeon. My partner was X-rayed and it was found that her hip had severe degeneration. She complained about the doctors incompetence and age discrimination and won. Further the orthopaedic surgeon wrote to the GP admonishing him for his attitude.
But to reiterate, i agree with your "factual accuracy, attitude to private blood tests, and intransigence in the face of evidence that a patient's levels are below reference range, may be cause for challenge on a medical professional basis" as well.
Thank you for replying Maisie. Whichever way, It is very worrying to think a doctor can decide not to look into an area where there is a deficiency. Where the patient is clearly unwell. Scary stuff
Thank you for all the info holy. That’s very useful to know. I do feel shocked at the attitude, and have not been taken seriously over my symptoms for a long time. I need to try and find another doctor to get well 😕
Doesn't make any sense. Oestrogen levels also drop when you get older, but she is quite happy to give you more of that (which you probably don't need). You might be able to raise testosterone by taking DHEA, but technically DHEA is prescription only in the UK and is a class C drug so not supposed to be imported for your own use without a prescription. So it's as illegal as testosterone. Why did you say it was an online test not a private test? You probably need to pay privately (a hormone specialist) to get hormones treated correctly.
Thank you Angel. (Slip of the tongue online/private) I don’t quite understand my Oestrogen levels. I’m 61 and had a full hysterectomy (ovaries too) when I was 30, due to complications. I thought I would of been through the menopause by now. Started reducing the HRT. But he said the test revealed my body was needing more Oestrogen, not less, so he raised the dose. How wierd!
I think you might be right, it might be worth finding a hormone specialist and get treated properly 👍
I have actually had good luck with topical Dhea cream (which is an androgen). Estrogen and testosterone are used to treat hot flashes. If I'm not mistaken, Dhea can convert to either. (You would just be using this in addition to the estrogen you are already on for an estrogen/ androgen balance.) Dhea has really helped reduce my number of hot flashes down to 1-2 a day. And, they are not as severe. Some days I don't have any I was having several a day before starting Dhea cream. I use Life-Flo which comes in a sealed pump with metered doses. There are other good brands, though. 10-20 mg daily is standard dosing. Start with a small amount and increase as needed up to max dose. Maybe it could work for you, too😊
[Angel of the North stated that Dhea was prescription only. Oral hormones (tablet form) here in the states are Rx only, too. But hormone creams can be bought over the counter/ online. Is it not that way for you guys, too?]
As for that doctor (and I use that term loosely:)) I wouldn't waste any time booting that one to the curb.....but, that's just my opinion😉
Thank you Ell. Lol, yes, will not be going to her again. Thanks for all the info on creams etc. The flushes are constant, with me everyday and most of the day. I’ve forgotten what it feels like to not have them 🙁 will look into that 👍
Hot flashes are a living misery. So, I really hope this works for you😊
But, being the pragmatist that I am.... I thought it couldn't hurt to mention a few of the other things that might trigger hot flashes (just in case, since they can also be a result of allergies/ sensitivities ):
*Gluten... for me causes terrible flushing/ hot flashes, and damage (Celiac). I always know when I have been accidentally glutened. (But, you don't have to be Celiac to have big problems with it.)
*Low Vitamin D levels can cause flushing with sweating (especially the head) Make sure you take with K2 if supplementing.
*Aluminum based food dyes (also in medications) Red Lake is a particular problem for me
*Allergens in general (food/ environment/ skincare)
*Alcohol sensitivity (food/ skincare)
*Thyroid and other medications that have gluten in them (quite a few do) or other problem dyes/ fillers (lactose, cellulose, acacia, and different types of gums to name a few.)
*When thyroid levels are too low
*Liver congestion can cause hot flashes, too. I take 1000 mg of Milk Thistle at night before bed with 400-800 IUs natural vitamin E (mixed tocopherols) because early a.m. is when the liver is working its hardest.
I certainly hope you can find a specialist that will prescribe it for you. Since Angel of the North elucidated the situation there with Dhea in any form, I'm not sure it would be worth the risk even trying to order it. The whole situation is just infuriating, to say the least.
Everything does seem to be really complicated in order to just get well again doesn’t it.. 🤦♀️ I will keep calm and carry on lol. Registering with a new doctors tomorrow so hopefully I’ll get better treatment. Thanks for all your help Ell x
it is possible (but technically not legal) to buy DHEA in all forms online in the UK - however, it is a class C drug (not just prescription only) and so you might end up not getting it or even being prosecuted (I haven't tried for several years as I have it on prescription).
One more avenue of self help summarily cut-off due to the risk involved. How upsetting, but not at all surprising. Thank you for the clarification, Angel of the North 😊
Hi I have tesosterone def - oestrogen - progeserone - pregnenalone and dhea - DHEA can supply Testosterone and oestrogen but not progesterone - it can be purchased quite easily - I am not a Dr this information is offered on an advisory basis.
But in the UK it is not legal to purchase it as it is a class C drug like cannabis and other anabolic steroids. See gov.uk/government/publicati... (search for DHEA as it has it under brand name beginning with P) and casemine.com/judgement/uk/5...
Hi greygoose. No, I’m not on statins. My thyroid levels are ok at the moment. Had both private and nhs tests done and both came back saying current dose was working. 75 and 100 on alternate days. So at least that’s ok, it’s just a shame I don’t feel ok 😔
Had both private and nhs tests done and both came back saying current dose was working.
Strange thing to say. But depends what they mean by 'working'. If they just mean bring your TSH down, well, it's obviously going to do that. But, that doesn't mean that your FT4 and FT3 are optimal. That's a very small dose. I think, if I were you, I'd want more detail. If your thyroid hormone levels aren't optimal, your testosterone levels won't be, either.
Thanks greygoose. I didn’t know thyroid levels affect testosterone levels. I will check my results from Medichecks and I have yet to pick up a print out of my results from the surgery. They’ve both said dosage is ok, but I’ll check that. Thanks again 👍
All hormones are inter-connected. And, if one is off, the others are likely to be so, too.
The problem with doctors saying that your dose is fine, is that if they're only looking at the TSH, then they really have no idea. And, most of them do only look at the TSH. Which is why we have to check and question.
Hi Kanga my GP offered me a testosterone blood test, so they can do this. I told him about professor stud who recommends this with HRT. My levels were below 0.6 and test only shows from 0.6 upwards, he said for my age then 51 should be around 2.00 or 2.2 can't quite remember, but there ate recommended levels for various ages. I was prescribed testogel, I put a pea size amount on wrists in morning, thus in conjunction with oestrogen, Utogesterone has made massive difference. Had alopecia areata, weight gain, fatigue and no motivation. I know some of the symptoms cross over with thyroid, but both are interlinked anyway. So GPS can def offer this test.
Also I watched truth about menapause presented by Mariella Fostrup and I think she was on testosterone and also has Oestrogel and Utogesterone, Carol Virderman has the Oestrogel too. Read recommendations of Prof Stud to Gynae. I get all mine on prescription.
Hi Melodie just Google proffesor Studd menapause and loafs comes up about him including articles, that's how I got the info and how I got onto Oestrogel, Utogesterone and testosterone. I was able to say Prof Studd recommends this combo so they took it seriously x
I hear you and I empathize strongly! I was completely out of hormonal balance until about three years ago, not only with lupus (long time having that) but then menopause and hypothyroidism (probably Hashi's or at least an autoimmune attack that started in 2002 with hyPER, then was treated with methimazole, and went hyPO). Was awful, really bad for a long time with symptoms like what you describe. But since then, things have gradually and greatly improved, so hang in there and don't give up working to get it all balanced properly.
I have been given oestrogen-progesterone combination sublingual compounded tablets plus a testosterone cream, this in addition to my levo 100mcg and T3 (liothyronine) 25mcg. What a huge difference having it all in balance has made for me! Energy levels, mood, physical strength and stamina both, libido, and skin tone all restored. (I do also supplement D3, B-complex, magnesium, and a multivitamin for seniors.) 59 years old and don't look or feel it. Before finding this fairly complicated plan of balance, I was really quite ill, with both lupus and hypothyroidism. So how did it all work out?
I had started getting it all in order in the US about four years ago, starting with the levo-lio combination, but then moved from the US to the UK, during which time I had to sneak in my T3 from Thailand until I could get an endo appt with NHS and persuade them to prescribe it, which they finally did but only near the end of my time there; worse, I had to fly back to the US to get my HRT creams and tabs, as no endo or gyn would continue what had just started to work for me in the US, and no compounding pharmacies were in my area of the UK. I just recently have moved back to the US, and while I miss the UK terribly and will always love it, I have to say that getting the hormones all balanced and prescribed has been a major, major improvement in my quality of life. Also nice being able to pop into the compounding pharmacy and have him work up the right stuff for me; nice to phone up the doc and get labs, refill prescriptions, physical exams, or tweaks to the formulations, as needed. The addition of balanced testo/oestro/progest really made all the difference; the rheumatologist added low-dose naltrexone recently at 2.5 mg, which seems to have now put the lupus in its place for good. I have not felt so healthy in decades.
I believe strongly in socialized medicine and have worked for the US to improve its unfair system to aim for universal health care for all, which to me seems like the only civilised way to go. But I must say that on this question, my experience has been that it's much, much easier to get seen, tested, diagnosed, and treated over here in US. You just find a specialist you like and make an appointment; if that one doesn't work out for you, find one who does (in days, not months). Of course I am v.v. lucky that my insurance doesn't require referrals--not everyone has this option as easily. But coming from outside you would: you could see anyone. So come on over and we'll fix you up, then you can fly back here annually for checkups and refills! <smiles> Not expensive at all, right.
Seriously, don't give up. This forum is great support and has top information and can find you good referrals. While in the misery of it, one thinks it will just never end or never get right again, but really, that individual balance IS somewhere for you, and the right combination for you *can* be found, with some trial and error. Good luck and good health to you. --A.
Thank you for your reply acoldiron. So interesting and informative. It does seem much easier to get sorted over there. Only wish i could get there lol, or that it could be like that here. But glad you are doing well. I will keep on going and try to get myself well again. So much helpful info and nice people on this forum. Always makes you feel slightly better and not so alone. Stay well and thanks again 👍 😊
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I was having several a day before starting Dhea cream. I use Life-Flo which comes in a sealed pump with metered doses. There are other good brands, though. 10-20 mg daily is standard dosing. Start with a small amount and increase as needed up to max dose. Maybe it could work for you, too😊 
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