I talked to my several GPs about gut issues, but they simply denied everything I said and refused to refer me to an endocrinologist. So frustrating!
Thanks again guys. Yeh it’s under the tongue @ 34 degrees. Under an endo who is resistant to look more deeply post lockdown I’ll push further. Cumin isn’t good for me unfortunately. I’ll see if the go will test for pathogens but not hopeful as they’re sick of me and just fib me off mostly saying I’m fine. Really!!! When in actually falling apart with every symptom in the book
Go to another one, or present them with one of the scientific studies. It can be an uphill battle finding one who will believe you, but they are out there. Are they young or old? In my experience, younger doctors tend to be a bit more open to these things. Mine is a young(ish) female doctor and from the first time I met her she has believed every word I have said. Maybe seek an appointment with a younger doctor at the same practice if your GP is older.
Also, if your GP was involved in you getting the Fin in the first place, they may have a vested interest in denying that you have experienced catastrophic long-term side-effects. Don’t give up.
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Are your Drs aware or have they seen this lower body temperature?
It doesn’t seem healthy.
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- Take along the Baylor study, or one of the other studies.
- Take along the long Reuters article that came out last year.
- Tell them that you are a member of a community of sufferers and there are hundreds more people like you, and dozens have killed themselves. Take a print out from the PFS Foundation.
- Take those things a couple of days in advance of your appointment and hand them into reception and ask that the doctor has read them before your appointment.
- At that moment, also ask to be provided details of the complaints procedure and inform the receptionist that you will be making a complaint if the doctor has not read them in advance.
- Phone up the day before and check the doctor has read them. If they have been “lost” or “misplaced”, have them ready to email over immediately.
- Print out a basal body temperature chart (Here is a Farenheit one for anyone in North America who might want to do the same) and record your waking body temperature meticulously, so they cannot cast doubt on what you are reporting.
- If you have an older docter, request an appointment with a younger doctor, a female if possible (I think a guy turning up and being willing to discuss sexual or other debilitating side effects with a woman is likely to be more effective, plus women actually understand much better what it is like for their hormones to be causing havoc - not trying to be sexist)
- Go along so prepared and so determined that it is hard to turn you away. Make it clear you know what you are talking about and you have done your research.
- If all of this fails, inform them that you will be making an official complaint against them and then actually do it.
Through all of this be exceptionally polite, don’t get angry or frustrated with anyone, just be laser focused and determined. Make it clear that you will not go away, and don’t give them an excuse to get rid of you.
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Our resource pack for patients covers this well, I think you may have seen it already @LazarusRy but if you haven’t, you can find it here
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Again thanks for the advice and support guys
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It’s very difficult to chat with GPs these days because of the lockdown. They only have chat with me on the phone and want to finish conversation very quickly as they only believe what’s written in their guide which says finasteride may cause depression and impotence, and nothing about other side effects.
I was lucky to see one doctor before the lockdown and he agreed me to refer me to University College London Hospital, Urology- Andrology Clinic following my conversion with a private doctor I found on the pfs foundation website. But, still, I have a little hope that the specialist there will know anything more than GPs…
I am about to buy a cloves / wormwood / green black walnut hull tincture and an oregano extract tincture. Hopefully they will be as effective.
Edit: they were going to take over two weeks to arrive, so I went for softgel capsules of oregano extract, arriving in the next two days, and a cloves / wormwood / green black walnut hull tincture arriving in 6 days or so.
It is certainly an uphill battle, but as I said to @LazarusRy, you just need to go along armed to the teeth with information, absolutely sure of yourself, unwilling to take no for an answer, but incredibly polite about it all. How old is your GP? I mean, are they young, mid-career or later career? Ask to be moved over to a younger doctor at your practice. They may be no more help, but they may have a much more open mind. A late career doctor is far more likely to be stuck in their ways, in my experience.
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There are in their 40s or 50s
I would say mine is probably late 30s to early 40s, if trying one more time with them doesn’t work at all I would still say it is worth trying to get someone younger, and if sexual problems are part of it for you but you are not phased talking to a woman about those (I actually find it easier), I would also suggest a female doctor. That is purely based on my experience, though. I might have just got lucky.
Just to add, the endo and uro she referred me to were both useless PFS skeptics who respectively denied me further treatment beyond the basic tests that I told them were not adequate (endo) or took over a year to organise my follow up appointment (uro), so I am not trying to say that I have had a smooth experience in the NHS. However, I went to both appointments under-prepared and in each case allowed myself to be cajoled into doing what they said. The endo actually phoned me for the blood test results and the call was almost literally just “Your test results are normal so I am discharging you, goodbye.” And that after they told me that they had several people with PFS come through and had only offered them what they offered me. Fucking outrageous.
I’ve used oregano oil from Garden of life. It’s very concentrated and diluting it with water is necessary. I’m not familair with the capsules though. Aim for 2 weeks with oregano oil. I’m 3 days in using Cumin + Clove. It usually kicks in about 10 days for me. I’m experiencing mild herx reaction but it’s nothing like the first time I’ve been on them. Good luck and stay positive!
Have you reported your symptoms to the government’s yellow card scheme?
No, but I have a follow up scheduled with the uro and if he fobs me off with viagra and skepticism again I will do so.
I am very positive right now, so have you noticed lasting positive effects from these cleanses?
Hi guys, to advise they are checking for celiac via a stool and blood sample. That’s as much as my GP is willing to do. Constraints of the NHS. I’ll push for more I depth thyroid checking when I see the endo.
Yes. Though for some reason 100% recovery wasn’t enough for me so I sought for more. I fell victim to vanity for the second time (1st time was Finesteride). I ended up messing with Probiotics including L. Reuteri among others and experienced what seemed like high histamine symptoms.
Today is my 4th day on Cumin + Clove combo. I’m also using 1/2 tablespoon Cinnamon and Coconut Oil caps infrequently as additional antibacterials. I’m getting morning woods on most days and allergy symptoms seem to be lessening already.
Don’t forget to get enough fat, protein and healthy carbs in your diet. Aim for at least 1.5 litres of water per day. Your adrenals will work overdrive so support them with adequate sleep.
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I’d start with Adrenals then Thyroid then Gonads testing.
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So your GP wasnt concerned about your 34c which is 93f body temperature?
That just seems incredibly low to be averaging that. Does it get a little higher during the day after you have been active for awhile?
Between this and some people’s reported low heart rate (possibly excluding the runner), it wouldn’t seem to be a good combination.
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