Oh dear I just feel in need of a little moan -so sorry everyone.
Sometimes it is a very lonely place being a Hypothyroid patient in the NHS. So I got summoned (as I seem to be every year) post blood test as my TSH is suppressed ( it always is) but my FT4 is in range ( 19 today) and my FT4 is always in range..... Doc says you're over prescribed says the receptionist so you must come in and see Doc as they won't give you any more meds unless you do..... I wonder to myself would they really stop them....would they really? It would be like stopping a diabetic from having insulin so would they really? But I daren't risk it........
So there I am at my yearly interview with my GP justifying why i am on Erfa, natural dessicated thyroid, and why that is better than being on the standard medications. As usual i have to go through and explain what the blood tests mean - why i am on what I am...what a grain is....why i have to vary the amount I take, why I need more in the winter than the summer, what is the most important reading of the blood tests -ie the FT4 is more important the the TSH, What Dr Toft says in his little book, why I can't go back to levo and the consequences to their budget if I do -ie will need pain killers, blood pressure tablets, water tablets etc etc...so will cost more if they do that -my ace card!
When I go into this interview every year I wish I could take a recording and then the GP could just press 'start' and all would be revealed. I dared not let on that my lovely Dr Skinner has sadly left us as i have a feeling he is the main stay as to why they let me carry on on Erfa. I fear they will stop it if they find out and they will in the end that our lovely Dr Skinner has passed on. I ask myself will there ever come a time that my GP will just accept the medication as being the best treatment for me...for the rest of my life?
Today the GP said -'well your medication is most unorthodox you know'......as if that is a really really bad thing.....and i almost found myself apologizing for the fact that i couldn't make their standard medication fit me -i felt like i had done some thing really naughty and the gentle chastisement might actually mean that one day they wouldn't prescribe Erfa anymore....the threat of withdrawal of Erfa remains. Oh woe be tide those of us who don't fit the standard treatment.
I guess i need to find a new private doc to underwrite my thyroid treatment before too much longer......
You know it would be so nice to be able to just go in and feel i could relax and have a consultation without having to be on my guard to educate, explain and justify.....all with fear running underneath. I don't feel like the patient. I feel like I am stood on the 'hot spot' fighting for my future and having to justify madly why I should have one. So it seems I have won a reprieve for another year....at least that is what he said......he'll let it carry for another year. I don't leave his room feeling elated more jaded that my battle will be a constant one for as long as i can find the energy and where with all to fight - i won't think about what will happen when I become very old and need to rely on these docs to be knowledgeable about my condition....too scary a thought.
But there was one bright little note in all of this. My vit D levels are well up, calcium and parathyroid levels are great so i can have my D3 finally on it's own. They have prescribed very low....but hey that is ok....if necessary i will top it up myself....
So next time perhaps I will look at B12 with them......am i ready to take on that battle? Not today!!! It is so much easier and less stressful to carry on sorting that one out for my self I have a feeling the B12 might just be a step too far for them.......
Thanks for letting me have my moan!!! You lovely people!!!
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waveylines
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A hug to you. I wish we could send your post to every GP, you explain so well what it feels like. Mine has a habit of having that conversation, then taking my blood pressure. Guess what?
Why don't you write down the whole argument and what points you made to the doc today and send him a copy. Explain that you have this same conversation every year and that it upsets you having to explain over and over again. So you are sending him the salient points. You could point out that you have been stable on erfa for the past x years and due to the nature of your condition (assume hashimotos?). It is unlikely that you will need to change dosage in the foreseeable future, if ever.
You could also list some if the signs and symptoms of hyperthyroidism and assure him that if you get any of them you will reduce your dose and contact him if the symptoms do not resolve immediately. This bit may be a lie but it may serve to reassure him that you are on the ball.
You have done the best you can for yourself, don't live in fear of what may happen in the future..... It may never happen and even if it did you could find a way to get your meds.
Aww thank you everybody Hugs really welcomed and advice too. It was a blue moment but i have been relentless in not letting them getting away with giving me inferior treatment.
I like Galthea's idea -I will put a letter together and ask for it to go on my medical records. Am not sure about being as stringent over never needing to change the dose -that could backfire on me. but I like the idea of writing down what was discussed today to reinforce to what has become apparent over the last few years of me taking Erfa. And also it would be a great opportunity to slide in reallyfedup123's spiel about Erfa not being unorthodox. brilliant!
I have self prescribed on NDT in the past -it is all doable just getting it on prescription is generally more hassle free, cheaper -no worries about custom duties or delays in shippage from foreign countries.... just the yearly interview to navigate!!!
Thank you all so very much....suddenly I don't feel alone anymore
This site and people on it are just fantastic -big big hugs to you all.
I would ask your doc why he thinks its unorthodox and ask him to write it down!! If you were prescribed it its because you need it and the synthetic stuff doesn't work for you!!
I asked my GP to write something down last year, and he said "no I won't ". When I asked why not, he said "because I don't want to"....... I assumed he didn't want there to be a record of him refusing the treatment I was asking for.
Its always an uphill battle and shouldn't be! I've practically slept through most of last week and sent off a yellow card last night re MP Levo, its either got to be that or some antibiotics I've been on reacting with that but looking forward to seeming another Endo! I made the mistake of telling GP about Dr Skinner. She then decided she didn't want the responsibility of my care and wanted me to drop my dose-The GP's Lament often liked by Endo's as well! Hang in there! x
It is all too familiar,doctors are so afraid of being sued. They don;t understand how debilitating being hypo can be without the correct treatment. They can't even see that at one point people were at the doctors every week with one symptom or another and once treated are never there! Good luck for next year. My fight carries on.
It's awful, it happens all the time, sadly. However on positive note you are lucky that you are prescribed Erfa on NHS. I need to buy NDT and I really can't afford it. I am so depressed because I am on benefits and I have lots of financial struggles
and soon I won't be able to buy it at all. Fingers crossed your GP will continue prescribing and change his attitude. Warm wishes. E x
If only Docs realised that part of the healing is giving patients time to talk and for them to listen. Patients need to feel they are part of the team - causing people stress only makes them more poorly. Being able to trust and be trusted is a good place to be and speeds up the journey to wellness.
Do hope all goes well for you and thank you sharing....
I agree so strongly. I was bullied by my GP. I went through a real horror. Now I changed GP but situation is not better so I have learned not to ask for any help anymore. I am avoiding my surgery, so when I am very ill, when I have very unnerving, worrying symptoms I just stay at home and try to wait it through. I am still left with symptoms that could indicate cancer but I am too terrified and traumatised that I can't make myself to go and see a doctor.
Oh dear that is so very sad. Sometimes waiting to see can be a good policy - must admit to being like that at times. But am not sure it is right if you are seriously ill. You are very brave and I am sorry you had such an ordeal with your GP. Do hope you soon find a good listening ear at your surgery....
Sometimes nice things happen....do not lose hope. I am reading Neal Nathan's book - Hope and Healing. An inspiring read and I have only just started it. He also wrote a piece for the Thyroid UK Harmony magazine about magnesium. Maybe you could borrow the book from the library or even ThyroidUK. Not sure they have it. We know about so much of what he writes about - but somehow we lack the ability to put it into practice and that includes me. We all need someone like him to sort us out....
Yes, I have heard of this book, but unfortunately I am too poor to be able to go to U.S to see him. I will probably look for his book but then a lot of treatments that Americans write about are not applicable / feasible in UK...Waiting for nice things to come through
Hey waveylines - I can identify with all you have so eloquently written as I share exactly the same difficulties and frustrations. I hate going to the doctor and go as infrequently as I possibly can as it always comes back to my T3 medication and why am I taking it - so expensive you know! I send you my best wishes and assure you that you are not alone - be healthy Mx
Well done for standing your ground! Have you see the Jeremy Hunt letter on Thyroid Patient Advocacy? I hear some use that as ammunition. If they ever do take it away, don't worry you can source your own. ThyroidS is very affordable - that should help take away their power over you knowing that you do have options. I cannot believe they threaten you with stopping the meds that is disgusting. Glad you got your reprieve but it really should not be like that.
Although I fortunately have a "thinking" GP and endo who treat me as part of a team,on the odd occasion I've recently been in hospital my meds have always caused concern and,on one occasion, been refused! When I had a stroke last year,the medics would not let me have the pain relief I "live" on,despite it being prescribed by my GP;they told me that it was an illegal combination. For over a week I was driven to tears with pain,until my husband metaphorically kicked ass and my Solpqdol/Tramadol combo was restored. Having to re-justify your meds must be soul-destroying for you and I heartily endorse the idea of writing a "repeat" letter to be kept on file. Chin up! You are not alone.
Ay Muffy it will be but try explaining that to a GP!! At least they accept that the FT3 is pointless as my programme of taking Erfa through the day would interfere with the blood test too much......not that the labs would do it in any case.
Well thank you everyone for all your replies and words of support. i am indeed well and i am well becasue of my proactivitiy -sadly like so many had I left it to the wrold of the NHs it is very very unlikely to have bee nthe case. It has bee n12years sinc i was orignally diagnosed formerly -won't harp on about the years before! and the one thing I have alrnt is to to ALWAYS
WOOOPS- not sure what happened there! Excuse the spelling errors it seemed to post itself! he he
I was going to say always check out whatever you are told......knowledge is power as they say.
I will never go back to levo -ever. And yes I really really like the idea of the letter -a written record is a good defense as litigation is usually not far from a docs mind.
I think the other thing that threw the doc was my explanation for the need for their to be some flexibility in treatment -I then went on to explain that i need more medication in the winter a than in the summer -this can vary even more when we have extreme weather conditions. He was puzzled so i had to explain why. I think it left him at a loss for words....
I do long though for a doc that i could just chill out and talk things through with. For that reason Dr Skinner's passing is a huge loss to me and many others... he was a proper doc who knew his stuff and knew about excellent patient care.
I don't know if anyone saw the Andrew Marr show this morning? Jeremy Hunt was on saying he was going to employ 5000 more GP's in a pilot study in return for the GP's agreeing to offer 'old fashioned medical care' where they check up on patient discharged from hospital and patients have a named GP.... Oh wow Jeremy Hunt I had not realised until today that GP's were no longer responsible to do these things anymore.
Andrew Mar asked him -how will you be able to do this when they are reporting that the NHS is on the brink of total melt down? Slimy Jeremy replied -"oh they have welcomed it" Hmmmmm......
I won't go to see my GP unless there is no choice!! Last time I went he wanted to do blood tests, I said NO!! He did ask why not and I explained that as the GP only did TSH then he wouldn't understand the results as I am not on synthetic thyroxine. He agreed that I know my own body better than anyone....
Your GP sounds better informed than most Am guessing your are on NDT? It does skew the Ft3 results but not FT4. Am glad though that he is happy to prescribe on your signs and symptoms and recognises that you know your body best Wish there were more like your GP
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I have a feeling the B12 might just be a step too far for them.......
Latest bloods - GP reducing my levo :( 
Armour vs Erfa (never-ending story...) 
ERFA I think my Endo's recommended starter dose is a bit too low?
GP says taking 25mg is better than nothing
