Totally disillusioned with my Doctor ; (

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Hi Everyone

As above I am totally shocked and disillusioned by a copy of a letter I received

today sent from my consultant to my GP. I just cannot believe it to be honest

and rather than just crying all day I thought I'd come on here and see what

other people thought. I'm ******** off anyway but I'm sure I am not just over

reacting and what has been written gives a completely false and misleading

impression of my situation.

I first went to see my consultant (he is on the good doctors list) in March

where he diagnosed me with hypo and put me on levothyroxine. I was given a

prescription for 8 weeks at which point I had to go back and see him. For the

first week I took the levo I felt much better and was looking forward to that

continuing, but from the 8th day onwards I became literally bedridden with

severe exhaustion to the point where I had to actually pay someone to come in

and feed my pets twice a day and had to use one of those camping toilets that a

friend brought in for me because I just could not make it up and down the stairs

throughout the day to the toilet.

I thought maybe this was a case of getting worse before I got better so

continued to take the levo and continued to feel a million times worse than I

did before I started taking it. I obviously have up and down periods anyway but

this was just constant exhaustion to the point where I was unable to do even

basic things for myself. I took the levo for 6.5 weeks and stopped it for two

days to have a blood test and on the second day I felt much better - I then

resumed taking it because I wanted the consultant to see for himself what I was

like on it. However I came to the conclusion on the Tuesday before the Friday I

had to go and see him, that as I was unable to even get up and down my own

stairs whilst taking the levo, that it was highly unlikely that I would be well

enough to make the ten hour round trip by public transport to see him unless I

stopped taking it for a few days and allowed myself to recover from it's effects

a bit. So I stopped taking it that day (3 days before my appointment). Despite

this when I went to see him I struggled to stay awake in the waiting room,

during my appointment with him and fell asleep in the taxi on the way back to

the station and don't even remember getting on the train as I woke up at Euston

just as the train was about to depart again for Birmingham.

For my appointment I had typed up an A4 sheet stating how I felt the first week

and how I then felt the following 7 weeks as I was worried I would be too tired

to tell him everything and might forget something. I described how I had been

feeling and how I had had to stop the levo on the tuesday or else I would never

have been able to even get to the appointment. As a result of the levo making

me feel worse and wanting to find answers, I had obviously been on this forum

and learnt about the various deficiencies that can affect the uptake of thyroid

tablets and I felt having read about adrenal fatigue that I may be suffering

from this, so when he questioned why it could be that the levo hadn't helped I

suggested these things as possibilities and also showed him the results of my

adrenal test which showed I had high cortisol in the mornings and evenings. He

completely dismissed these ideas, adding that he did not think I had adrenal

fatigue because people who have that are thin and I am not and that he didn't

recommend adrenal supplements because you 'just don't know what's in them' and

steroids are the only thing that help anyway. I then briefly mentioned that I

had had problems with tablets previously usually synthetic versions because of

the additional ingredients in them and that perhaps this was a possibility

(Sheila had also mentioned a liquid form of the levo which I thought might be

prescribed in that case) and gave him the example of my having to take melatonin

rather than circadin because I had a severe allergic reaction to it and that my

allergic reactions seemed to be getting more and more severe over the last year

or so. That was ALL I said which I believe was a perfectly reasonable and

relevant thing to mention given the circumstances. My main reason for not being

struck with the levo was that it was making me ill to an unacceptable and

unbearable level which I think is a perfectly understandable reaction. I am

totally on my own so if I cannot do something then I either have to pay someone

to come and do it for me or it doesn't get done and I simply cannot afford to

keep doing this.

In his own words he described my experience with the levo as a 'disaster' and

suggested he would prescribe me Armour instead. At no point whatsoever did I

insist or even ask for this and I would have been quite happy with whatever he

suggested so long as I felt I was making progress. I did in fact not ask for

anything and left the decision on what to do next entirely up to him because I

did not feel I was qualified to comment and I was too busy trying to stay awake.

I felt slightly disillusioned even at that time because it felt like if I didn't

get on with the Armour in the same way as I didn't with the levo, that no other

possibilities for this were going to be investigated and I would be on my own,

which did not fill me with confidence.

I also mentioned at the appointment that my blood pressure which had been high

had started to come down despite me not starting to take the blood pressure

tablets I had been prescribed by my GP yet, to which he made a sarcastic comment

almost under his breath about how he guessed I wasn't taking them because they

were 'synthetic' as well. I explained that in actual fact I wasn't taking them

because I had started to take bp tablets just before I came to see him and had a

severe allergic reaction to them so was meant to go back and get a different

prescription but as I had then come to see him and been prescribed the levo, I

wanted to take that for a few weeks before taking a new tablet so that if I had

side effects I could tell which tablet was causing it. Absolutely nothing to do

with the fact that my bp tablets were synthetic which I had no idea about in any

case.

I've been taking the Armour for six weeks now and had just started to feel

better for the past few days. The letter I received this morning made me

literally burst into tears because I just cannot believe the way the appointment

I had with him has been completely in my opinion misrepresented and it has been

implied that I am some sort of neurotic woman who is against taking synthetic

medications and therefore he would like to help me but I'm not really helping

myself. I already have a GP who couldn't care a less and tells me everything is

caused by stress or me choosing to feel that way and a letter from an idiot endo

claiming that there is no way whatsoever that I could have a thyroid problem

despite everyone in my family having one and me having all the symptoms, now I

feel like I have another 'helpful' letter to add to this collection, and one

that shows an attitude towards me that is completely misguided and based on his

opinions as opposed to the actual facts. A cursory glance at my medical history

and the list of medications I have been taking from my GP would have made it

blatently obvious that I am not a neurotic woman who is totally against

synthetic medication since I have spent the last 30 years taking it, and have

spent 7 weeks taking levo despite it making me so ill. I didn't even know there

were synthetic and natural tablets until the levo made me feel so bad that I

started to research online.

This is what he wrote:

'She disappointedly has stopped taking the thyroxine as she does not like

synthetic preparations which is disappointing as she did seem to be improving on

this but then started to feel unwell again which is a little bit inexplicable

but we must take the patient's opinion on this matter.'

'The thyroid chemistry of course indicates that she requires a higher level of

replacement and we are really constrained with her views on synthetic

medications'

'I hope we can help ; I have to say I am a little disappointed that

thyroxine replacement programmes has come off the rails'.

Nowhere in this letter does it even mention the fact that out of 7 weeks of

taking levo I was bedridden for 6 of them, that I continued to take it in spite

of this right up until 3 days before going to see him again and then only

stopped it to ensure I was able to get to the appointment with him and that it

was his decision to change my medication based on his view that my experience

with levo was a 'disaster'. Instead he seems to have taken a brief comment I

made about my reacting more and more to various things including tablets and

blown it out of all proportion giving it as the sole reason for my medication

having to be changed and how very disappointing this is for HIM.

I am also at a loss to understand how my not getting on with the levo is

described as 'inexplicable' which again infers a view I find derogatory when

this forum is littered with valid and common reasons for thyroid medication to

be prevented from working properly, all of which he dismissed and seemed to have

no interest whatsover in investigating.

That letter is going to cause me no end of trouble with my GP and quite possibly

my benefit review this month as it suggests I am being difficult for no good

reason and not taking medication which would help me, when this is completely

untrue in both cases. I am totally depressed that I have sat there and had a

conversation with someone who I thought would finally help me and that

conversation has been turned into this and I now feel like an underlying

attitude has been displayed towards me and assumptions made that make me feel

like never going back to see him again, but thanks to his letter that will just

look like further evidence that I am not helping myself.

Why when the fact that the levo made me ill consistently for 6 weeks out of 7

was that not felt sufficient reason for me to try another medication instead,

and instead it has to be blamed on me not wanting to take it for dubious

reasons? Even the way he has written that I seemed to be improving and then

started to feel unwell again gives a completely inaccurate picture of what

actually happened - I was far worse on the levo for 90% of the time I took it,

if I had been improving on it I would still be on it and he wouldn't have

described the situation as a 'disaster' surely?

I know I am ill and am more likely to take things personally but this feels

personal - it feels like he has made an assumption about me and not a good one

and completely ignored the facts choosing instead to lay the blame at my door

and give the impression that I could be better by now if only I hadn't

'disappointedly' stopped taking the thyroxine.

I just feel like I am being portrayed as something I am not - for no good reason

and with no actual evidence for this other than my mentioning the fact that I

have been having increasing allergic reactions to things which is not actually

my fault, however disappointing it may be to him. The fact that I WANTED the

levo to work and I wanted to be 'better by June' which is what he told me would

happen seems to completely escape him, frankly I would take anything if I

thought it would make me better as illustrated by my medical notes and the

ridiculous number of tablets I have been prescribed over the years. I almost

feel like the fact that I am a 'difficult' patient in that I have not made an

immediate recovery on the first tablet he has given me is somehow annoying for

him, and I am being treated accordingly.

I was already upset because I also received a phone call on Saturday out of the

blue from his secretary asking me to make another appointment to come in and see

him despite the fact that I only saw him last month. When I asked why she said

I had to come and see him every time my tablets are increased - which at present

is every 3 weeks. It's a ten hour round trip to see him as I've already

mentioned and with fees and fares it costs me £200 each time, something which I

can barely afford to begin with. When I actually saw him in May he said I

should just drop him a note every six weeks to say how I was getting on and I

was told to fill out a form asking for a new prescription every six weeks which

I have done - so I have no idea why this has now completely changed for the

worse.

At the moment much as I would have liked to have been seeing an 'official'

doctor I felt like after saturday's conversation I couldn't afford to any more,

and now after his letter I wonder why I ever went at all. I can't see any

reason for what is written in that letter when the truth would have sufficed

other than to use me as some sort of scapegoat for his decision to give me

Armour, but even then he could have portrayed it in a far less derisory manner.

I was intending to go and see Dr P and I would far rather spend my money on that

but don't know if that is sufficient - can I just buy the armour myself and will

he advise me on that as well as nutritional aspects which I feel I need to get

sorted anyway?

I'm concerned if I don't go back to see him, either for cost reasons or just

plain disgust at the moment of how that will look benefits wise when I am asked

to write a list of 'precribed' medication and was wondering how other people

deal with this when they are self treating? I'm also really worried about what

that letter is going to look like to anyone else who sees it, like other doctors

I see in future, my GP or the benefits agency etc.

Sorry for this long message but I'm just so upset about it and I thought you

would understand, unfortunately ; )

Bunny