Erfa prescriptions

Following the tragic passing of Dr Skinner. I am sure that quite a lot of people have found themselves at a loss regarding their treatment and medication. I understand that Ms Afshan is going to appeal to GP's of Dr Skinner patients however my GP is an absolute NO for prescribing NDT, I have changed surgeries twice and there was always a NO, so I am terrified as I do not know where to get prescriptions for ERFA THYROID from?

I know reputable online pharmacy abroad but they do not sell ERFA; the other online pharmacy seems to be not that trustworthy.

I have only 2 weeks of supply and Christmas is coming. I am in a very poor state of health and if I stay without medication I wont survive this ( truly, without over- dramatizing), that is due to being weak from ovarian tumour, ruptured ovarian cysts and endometriosis, also recent heart problems and pneumonia.

Where can I get prescription from now? I am begging for advice.

Thank you.

Edysia xx

49 Replies

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  • Edysia I have sent you a PM.

  • Thank you Framboise. E xx

  • Framboise, could you also PM me on that? Thank you. Absolutely gutted, only learned this morning after opening the daily HealthUnlocked post. A letter to Dr. S lies unfinished on my desk...just gutted.

  • Framboise, would you PM me about where to get Erfa, please? I'm alive now because of Dr Skinner and half-way through the last prescription he gave me.

  • Hello Framboise. I have only just heard about Dr S - was due to see him next week. Very sad that he has died. Would you be able to PM me too please? Thank you very much

  • Dont waste your precious energy on the nhs. Do not worry,you will find ndt. Switching brands should be fine if you find a particular brand more accesdible. I always keep 1 private prescription to hand in case of stock shortages. Get it from a private gp in london who i make a point of seeing once a year . As a taxpayer who funds the nhs it outrages me,but what price do you put on health?

  • Thank you Bluedaffodill. Do you pay for appointment each time you need prescription? Or is it on repeat? After Dr Skinner is gone I don't know who can prescribe me and I wouldn't be able to pay for an appt, each time when I need prescription. You are right , it is all outrageous to pay for own meds but as you said there is no price for health. Unfortunately my budget is so limited that I really can't afford much. Could you pm me name of this private Gp? Thank you. E xx

  • Hi there, could you also PM me details of how to get private scrips from London private Gp please? I sincerely hope all you lovely people that managed to see Dr Skinner find help. Im too late unfortunately & upset about that!

  • What a good idea to keep a private prescription to hand, I hadn't thought of that, but will do so from now on! I absolutely agree about being a taxpayer but getting no help from the NHS. I've been self treating for years since being diagnosed by Dr S.

  • Can you PM me please to let me know who the private Dr in London is? I'm a patient of Drs Skinner who was obtaining Erfa on private prescription, I have bought some online but want to be under a Doctor who will prescribe it for me just in case there comes a time that I can't buy it online.

  • I too would be grateful for the name of your private doctor.

  • Please could you also PM me the name of your private GP, thanks very much

  • In honour of Doctor Skinner's work and dedication to his patients let's support the Scottish Thyroid Petition.

    Write to the Parliamentary Committee, or Elaine Smith MSP, with personal evidence of difficulties experienced with diagnosis or treatment of hypothyroidism.

    Lets all use our sadness at losing him to take action and do him proud.

  • And support his World Thyroid Register.

    worldthyroidregister.com

    So very sad to hear the news.

  • Will do God bless Dr Skinner I saw him once and he cared for everyone . Will miss him terribly . Who can I go to now for private prescription? I live in Scotland

  • edysia2 I am so sorry to hear that! Haven't been on here for a while, so first I've heard of the demise of that great Scot, Dr Skinner. Please PM me, I might have a solution.

    Linda

  • Thank you Linda. I have PM you. E xx

  • If u r in London area Dr Malcolm Prentice is really nice and very easy to talk to he does private as well as NHS he to my knowledge is at the following hospitals

    *st George's tooting

    *shirley oaks BMI

    *croydon university hospital

    I saw him privately and he referred me back to NHS

  • Thank you Emma xx I will PM you shortly . E xx

  • Oops ! You probably have to hide the name of this doctor as it is not allowed on the forum to give names in public , just via messages. Thank you so much once again . E xx

  • Does the Dr prescribe natural thyroid and is he an endocrinologist?

  • LindaC and bluedaffodil, could you pm me also please? I'm devastated to hear this. I have no idea what I'm going to do about prescriptions for ERFA. Not to mention managing this disease. Is there anyone else we can sensibly turn to?

  • Hi,

    Thread edited under our Guidelines -

    22.Do not post advertisements, links or information of any sort whatsoever, on where or how to obtain UK prescription only medications without prescription.

    The only drawback is that the nice british customs always stops the meds and for this privilege you pay vat at 20% a fee for stopping the package and then vat on top of the fee. Hm and we are ill . You better of buying illegal drugs on the street its cheaper.

    Take care

    John

    Oh btw allow three weeks for delivery.

  • Hi John, I have to go this route, it totally P's me off we gut stung further with the VAT payment and the ******"royal mail handling charge!

    We should be on free meds, grrrrh!

  • I think that I have to give up in this situation, thank you for your reply John. E

  • Thread edited under our Guidelines -

    22.Do not post advertisements, links or information of any sort whatsoever, on where or how to obtain UK prescription only medications without prescription.

  • Try to contact ur local mp they could help u out

  • I tried with MP . I am very neglected by NHS and after i was turned down by NHS England i contacted my local MP. He Left me with nothing, in tears. E x

  • HI we are in a process, where the clinicians only look at one marker of your bloods the TSH, If your TSH is in limits your ok. I feel terrible , I have no thyroid it was taken away in 1999 since then I have seen every dr I can think of and spent a small fortune on their fees. if there is a decent dr that listens too you, then they are struck off. When you start to complain they want to give you anti depress nets. The whole science is flawed. At least the people in Scotland are looking at the problem but I do not think it will be a change in our life time. We need a full array of testing got our bloods show the TSH plus at leased the T3 .

    The first thing is we need more strength of thyroxin. i.e. 1 mcr 5 mcr 10 mcr etc. Then they need to be a different colour so you do get them mixed up as they are in Belgium. Perhaps the next thing is for T3 to be given out in small doses by your GP.

    Perhaps and I am really stretching my wish list now, is for a standard blood test to look at your testosterone level in males and oestrogen in females.

    I am banging on my drum now but another way around this is for a patient that is wealthy to sue the endocrinologist for mal practice . Lynn Mynot group is doing wonders but its a really slow process.

    I am really wasting my breath here but at least I am getting off of my chest.

    Good luck to you all

    John C

  • Give the numbers of posts I have read about people taking the levothyroxine medicines in the USA, which come in two rainbows' worth of colours, avoidance of colourants seems important to a significant minority. There are many USA patients who end up taking 50 microgram tablets only in order to avoid these colourants.

    So I would not wish to see the addition of dyes or pigments to thyroxine.

    Rod

  • Hello Edysia,

    I am very sorry to hear of Dr Skinner's passing and of course your situation and how ill you are - my heart goes out to you.

    Thread edited under our Guidelines -

    22.Do not post advertisements, links or information of any sort whatsoever, on where or how to obtain UK prescription only medications without prescription.

    I do think in my view you should be trying to find a doctor who is willing to help you, I understand they are few and far between but they do exsist and that will make all the difference. Best of luck xx

  • I stand no chances with doctors , I have tried everything when I could walk. I am worried that buying it online will cause problems like additional charges, parcel being withheld by customs etc. I am giving up, I have no family, I am having severe abdominal pain, a chronic condition, my friend couldn't cope with challenges, so I am house bound and on my own. I don't know what to do anymore. Thank you once again. Love. E xx

  • Edysia,

    I really do understand why you feel the way you do, I have been their myself on many occasions but it can get better. Have you tried Nutri thyroid? that is a Natural source from this country (high peak) and is a reasonable price - delivery is always next day. When I read your first e-mail what sprang to mine was if the Efra was working as it should how come you are so poorly, Have your adrenals been checked? Another option is speaking with Doctor Peatfield - you can have consultations over the phone - he is a fantastic bloke and is more than willing to help people. It must be awful being on your own but things can really turn round, I am proof of that. xxx

  • Thank you. I am sorry I am crying right now. I really have to many health issues and no help, despite trying. I spent so much money on private, i cant more. I still didnt find gyneacologist that could Help , i have terrible gyneacolgical problems, I am in pain day and night. Things can turn around if you are not on your own. I live alone in this country. I lost my family. I am totally alone now. E xx

  • Hello Edysia,

    I am so sorry things are so bad for you. It's an awful situation. Do you live in the Suffolk area, I know a great NHS doctor who would help you? Do you think the Thyroid condition is causing your Gyneacoligical problems? Maybe their is an hormonal imbalance or maybe your lacking in certain vitamins - that can be tested by a GP. We must find away to help, if you start feeling better and being able to do more then soon enough you won't be alone anymore and HC was what made the difference for me but that really needs to be tested first xxx

  • Thread edited under our Guidelines -

    22.Do not post advertisements, links or information of any sort whatsoever, on where or how to obtain UK prescription only medications without prescription.

  • Thread edited under our Guidelines -

    22.Do not post advertisements, links or information of any sort whatsoever, on where or how to obtain UK prescription only medications without prescription.

  • Thread edited under our Guidelines -

    22.Do not post advertisements, links or information of any sort whatsoever, on where or how to obtain UK prescription only medications without prescription.

  • Hi I may be to blame here as I mentioned where to buy some meds with out a prescription, my apology to you as I am new to the list.

    But in my defense there are some pretty desperate people I have spent all my savings on Drs bills and self treating is sometime the only way out on a budget.

    Take care

    John

  • We completely understand the desperation, believe me, plenty of us here have been there (and/or are affected). What we ask, is that sensitive information be shared via the PM (private messaging system), and not posted publicly on the forum.

    To send a PM, simply click on a member's name (in blue), then click on the yellow button to the right of the page that you land on.

    Our full 'Posting Guidelines' are always available via the link in the righthand column.

    healthunlocked.com/thyroidu...

  • Here is the address to send evidence in support of the Scottish Thyroid petition. You don't have to live in Scotland to submit evidence of your experience and problems with diagnosis and treatment of hypothyroidism. They have requested evidence. Also personal stories can be sent to Elaine Smith Member of Scottish Parliament. elaine.smith.msp@scottish.parliament.uk For evidence it's... Andrew.Howlett@scottish.parliament.uk I'm going to give my story/evidence a heading "in memory of Dr Skinner".

  • OMG I only phoned Dr Skinners surgery last week to enquire about being referred to him. Does anyone know more details on his passing? :(

  • I was a patient of Dr Skinners and have had the best 8 years of my life, in that I'm free from the anxiety and bouts of clinical depression which had blighted my life since I was a child, I had the energy to continue with my full time job, I no longer had to carry around warm jumpers (in the Summer!!), my chronic constipation had gone etc. etc.. I am devastated by his death, but like the others am really worried about what happens for me next...

    I have taken my last full dose of medication today ,but am now out of the thyroxin which I take before I even get out of bed. I should have had a new prescription sent out this week but it never arrived due to the tragic loss of Dr S.

    I had a review of some of my NHS medication with a new Gp ,and so I thought that after 9 years that perhaps things had moved on and he would be willing to prescribe thyroxin ,just until I could find another sympathetic private doc....well it was like being in a time machine...I was transported back to 2004 when all my arguments fell on deaf ears....polite but deaf ears!!!!! I explained that I had even had the D102 gene test done to see if that's why I feel better on a combination of thyroxin and Erfa but that I didn't have the faulty gene...he didn't even know there was such a thing as a faulty D102 gene...brick wall anyone??

    I explained that they didn't know what was an optimal point on the HPA axis, that the TSH test will never tell what's going on at a cellular level etc. etc. but he just said that thyroid and steroids are the "happy hormones" which would make anyone feel better....oh and your T3 was never tested...well that's all right then!!!!

    Needless to say both myself and my Mum are rapidly looking around for a new doc so any personal recommendations then please pm me. Sorry for the rant but its galling that they would rather we were unwell as challenge a bit of ruddy paper!!!

  • he just said that thyroid and steroids are the "happy hormones" which would make anyone feel better

    Every time I hear someone say they've been told this, I get sooo angry! I also was told something similar a few years ago when I asked for an increase in my T4 dose. They seem to have the ridiculous idea that taking thyroid medication is like taking pep pills or something :x

  • Please PM me too regarding Erfa (although I am not sure how to retrieve it).

  • If you a private message waiting to be read, you will see a red dot over the envelope symbol on the green bar. Simply click on that envelope and you go straight to your messages.

  • yay - thanks helvella. I now await the information - hopefully.

  • Edysia2 If you PM me I might be able to help you short term!

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