Re: Another Own goal for the NHS

[Guest guest]

> Has anyone else had iron injections or the intravenous therapy? Does anyone

> have any advice for me?

>

Are you the person who couldn't tolerate iron pills?

If so, you could eat liver, preferably with vitamin C, while you wait to get

the injections sorted. IIRC, pig's liver has the most iron, but it also has the

strongest flavour.

I was very anaemic once (been there twice, different causes) and was told not

to take any iron for a short while as they ran tests. So I ate lots of liver.

The doctor was astonished at how my iron had recovered, so I told him. He said

that was sneaking around the rules, but as everything was okay and I only

needed to get the iron up, he didn't complain much.

Jo

[Guest guest]

>

> > Has anyone else had iron injections or the intravenous therapy? Does anyone

> > have any advice for me?

> >

> Are you the person who couldn't tolerate iron pills?

>

I am indeed unable to tolerate oral iron except for Spatone, which is

ineffective at raising my levels. I eat iron rich foods and for 20 years prior

to finding I had low ferritin I took a multi vitamin with the RDA of iron every

day. Similarly I spend an hour a day at least outside in all weathers and I am

deficient in vitamin D so I think there is an absorption issue somewhere along

the line.

D

[Guest guest]

I had intravenous iron (inferon) injections by my GP but that was

years ago when I was pregnant, and now I am a great grandmother - so can't help

here Dolly. However, I would telephone your endocrinologist who recommended the

iron and tell him what your GP has said. Do this on Monday and get it out of

the way and let us know what he suggested.

Luv - Sheila

On April 26

I saw my second endo and I came out very optimistic. He accecpted that my

ferritin was very low at 16 and said he wold write to my GP and ask him to give

me a course of iron injections. After three weeks and numerous emails and phone

calls my GP finally got the feedback letter and I went to see him this

afternoon, expecting to have the first injection.

No such luck! The Gp says that they don't give iron injections at the surgery,

they never have and in fact they can't. He said that no-one gives iron

injections any more, they do it intravenously and the endo should have referred

me to a haematologist at the hospital. The GP is now going to do this and after

I banged the table he said he would do it on an urgent basis to try to avoid

any more delay.

[Guest guest]

Hi D, I suggest that you write to the endo and explain what a run around you have had and could he please help arrange these injections for you. Sounds like a typical case of left hand not knowing what the right is doing. > thyroid treatment@...> > On April 26 I saw my second endo and I came out very optimistic. He accecpted that my ferritin was very low at 16 and said he wold write to my GP and ask him to give me a course of iron injections. After three weeks and numerous emails and phone calls my GP finally got the feedback letter and I went to see him this afternoon, expecting to have the first injection.> > No such luck! The Gp says that they don't give iron injections at the surgery, they never have and in fact they can't. > > Has anyone else had iron injections or the intravenous therapy? Does anyone have any advice for me?> > Thanks> > D> > > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

This moves on. Just had a call from my GP who has spoken to the haematology

department at the hospital. Whatever my ferritin level is, if my haemoglobin is

OK (which it is) then they say intravenous iron is not appropriate, because I am

not actually anaemic. They suggest dietary measures to get my ferritin up.

GP will feed this back to consultant and see where we go from there.

Don't know what to do now.

D

I suggest that you write to the endo and explain what a run around you have had

and could he please help arrange these injections for you. Sounds like a typical

case of left hand not knowing what the right is doing.

>

>

> > thyroid treatment@...

> >

> > On April 26 I saw my second endo and I came out very optimistic. He

accecpted that my ferritin was very low at 16 and said he wold write to my GP

and ask him to give me a course of iron injections. After three weeks and

numerous emails and phone calls my GP finally got the feedback letter and I went

to see him this afternoon, expecting to have the first injection.

> >

> > No such luck! > >

> >

> >

> >

> >

> > ------------------------------------

> >

> > TPA is not medically qualified. Consult with a qualified medical

practitioner before changing medication.

> >

> >

[Guest guest]

BUMP

>

> This moves on. Just had a call from my GP who has spoken to the haematology

department at the hospital. Whatever my ferritin level is, if my haemoglobin is

OK (which it is) then they say intravenous iron is not appropriate, because I am

not actually anaemic. They suggest dietary measures to get my ferritin up.

>

> GP will feed this back to consultant and see where we go from there.

>

> Don't know what to do now.

>

> D

>

> I suggest that you write to the endo and explain what a run around you have

had and could he please help arrange these injections for you. Sounds like a

typical case of left hand not knowing what the right is doing.

> >

> >

> > > thyroid treatment@

> > >

> > > On April 26 I saw my second endo and I came out very optimistic. He

accecpted that my ferritin was very low at 16 and said he wold write to my GP

and ask him to give me a course of iron injections. After three weeks and

numerous emails and phone calls my GP finally got the feedback letter and I went

to see him this afternoon, expecting to have the first injection.

> > >

> > > No such luck! > >

> > >

> > >

> > >

> > >

> > > ------------------------------------

> > >

> > > TPA is not medically qualified. Consult with a qualified medical

practitioner before changing medication.

> > >

> > >

[Guest guest]

I have never heard about this before. Ferritin is your STORED IRON - not

the iron in your blood cells. Once this level of stored iron is

depleted, your body will then rob the blood cells of iron, making you

very anaemic. This is why your ferritin level must be kept well within

the reference range (i,.e. 70 to 90) to stop the danger of this

happening. Your haemoglobin has nothing whatsoever to do with your

ferritin level. I would ask them for evidence to back up their claim

Dolly.

Luv - Sheila

> This moves on. Just had a call from my GP who has spoken to the

haematology department at the hospital. Whatever my ferritin level is,

if my haemoglobin is OK (which it is) then they say intravenous iron is

not appropriate, because I am not actually anaemic. They suggest dietary

measures to get my ferritin up.

>

> GP will feed this back to consultant and see where we go from there.

>

> Don't know what to do now.

>

>

[Guest guest]

Yep, I was told this too Sheila. I was told that having low ferritin doesn't

make any difference and " You don't feel ill until your blood count goes down and

you are actually anaemic " hmm...

I used to have iron injections but I was told they stopped them because they'd

stopped testing for ferritin and so had no way of knowing if you were overdosing

on iron. My GP can usually get them to test for ferritin though, so far anyway.

Louise.

>

>

> I have never heard about this before. Ferritin is your STORED IRON - not

> the iron in your blood cells. Once this level of stored iron is

> depleted, your body will then rob the blood cells of iron, making you

> very anaemic. This is why your ferritin level must be kept well within

> the reference range (i,.e. 70 to 90) to stop the danger of this

> happening. Your haemoglobin has nothing whatsoever to do with your

> ferritin level. I would ask them for evidence to back up their claim

> Dolly.

>

> Luv - Sheila

>

> > This moves on. Just had a call from my GP who has spoken to the

> haematology department at the hospital. Whatever my ferritin level is,

> if my haemoglobin is OK (which it is) then they say intravenous iron is

> not appropriate, because I am not actually anaemic. They suggest dietary

> measures to get my ferritin up.

> >

> > GP will feed this back to consultant and see where we go from there.

> >

> > Don't know what to do now.

> >

> >

>

[Guest guest]

Before I started to get low ferritin readings I had taken a multivitamin with

the RDA of iron for 20 odd years and I eat a varied diet - not veggie etc.

Three months of Spatone did not raise it and I cannot tolerate oral iron, gentle

or otherwise,which according to the endo is quite common.

Have now found out that GP did a referral to Haematology and they phoned him up

straight away and told him it was 'inappropriate'. GP on leave from last

Thursday so will speak to him again on Tuesday, but nothing in my notes on

Friday to say he had written to endo, as promised, or endo had responded.

I am so angry - all I want is to be well. We have not been on holiday since

2007 and we really thought after the endo appointment that this year might be

the year.

D

>

> Hi Jo

>

> But we are talking here about somebody with low ferritin that needs to be

> raised, and it can only be raised by taking foods high in iron or through

> iron supplements. I wish I knew how this worked, and I don't even have time

> to check it out on Google, but there must be an explanation.

>

> Luv - Sheila

>

>

>

>

>

>

>

> > I have never heard about this before. Ferritin is your STORED IRON - not

> > the iron in your blood cells. Once this level of stored iron is

> > depleted, your body will then rob the blood cells of iron, making you

> > very anaemic. This is why your ferritin level must be kept well within

> > the reference range (i,.e. 70 to 90) to stop the danger of this

> > happening. Your haemoglobin has nothing whatsoever to do with your

> > ferritin level. I would ask them for evidence to back up their claim

>

> I think their point might be that a transfusion puts iron into the blood,

> not

> the stores. If the blood has enough, then it would have too much.

>

> It's possible to have normal haemoglobin readings as the ferritin drops,

> because the body's being efficient at drawing on the stores -- until one day

>

> it's crisis point, like falling off the edge of a cliff.

>

> That was my situation a while ago. The doctor checked my blood iron and it

> was

> fine. I also looked fine. Plenty of colour etc. But I was feeling weaker and

>

> getting panic attacks, which was my body screaming for help.

>

> So I don't know if the hospital's claim is reasonable, but I can see that it

>

> might be as too much iron in the blood is damaging, and I'm not sure that

> the

> system works in reverse -- ie the stores efficiently draw on circulating

> iron

> to replenish.

>

> If not, then nutritional iron is the only way to build the stores, and

> transfusions are only useful as a stop-gap when the blood iron is low.

>

> I don't know if the above is true, but it makes sense from what I know about

>

> the system.

>

> Jo

>

>

>

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[Guest guest]

MODERATED TO REMOVE MESSAGES ALREADY READ. PLEASE DELETE THESE BEFORE CLICKING

'SEND' AND LEAVE JUST A PORTION OF WHAT YOU ARE RESPONDING TO. LUV - SHEILA

_______________________________________

Well, seems like we're stuck now.

After the registrar in Haematology refused to accept a referral back from my GP

saying that as my Hb was all right (test results from eight months ago!) any

form of iron therapy would be `inappropriate', nothing more has happened.

My GP has faxed the consultant, reporting back and asking what we can do now,

but that was over a week ago and despite the GP calling up another twice and

leaving messages, no-one has come back to him. I e mailed yesterday and I have

had no response either, so neither I nor the GP know what to do now.

In terms of iron supplements, I did 3 months on Spatone and my level went up

from 18 to 19. I then tried ferrous sulphate (one a day) to try to raise it

more rapidly, but had horrendous diarrhoea. On a recommendation from someone on

here I tried ferrous biglycinate (one a day) and the same thing happened.

Does anyone know of any form of iron supplement that is effective and may be

less likely to upset my digestion? I have now had this ferritin deficiency for

at least 12 months and probably a lot longer and I would like to get shot of it.

I don't mind throwing some money at this.

My GP always looks to me as if he wants to cry when he sees me (lol) but he is

quite obliging and I would like to keep him on side for a while longer. The

bigger issue now seems to be a consultant who said all the right things when I

met him, but who has sent me back to primary care for treatment they don't

provide, which the hospital have now said they won't provide, and who is now

lying low.

Don't want to risk jeopardising my care (what care I hear you say) by making a

formal complaint until I absolutely have to.

Frustrating.

D

>

>>

> Have now found out that GP did a referral to Haematology and they phoned him

> up straight away and told him it was 'inappropriate'. GP on leave from last

> Thursday so will speak to him again on Tuesday, but nothing in my notes on

> Friday to say he had written to endo, as promised, or endo had responded.

>

>

[Guest guest]

MODERATED TO REMOVE MESSAGES ALREADY POSTED. PLEASE DO DELETE THESE BEFORE

CLICKING 'SEND' AND LEAVE JUST A SMALL PORTION OF WHAT YOU ARE RESPONDING TO.

LUV - SHEILA

______________________________________________________________________

Thank you for your continued support Sheila.

Unfortunately this was all done on the telephone – GP faxed the referral and the

registrar on call phoned him back. GP is very sorry but he didn't take a name.

However, unless they destroy their rotas immediately after use (which wouldn't

surprise me actually) we should be able to trace him.

I am working on a letter of complaint, but also trying to be reasonable and give

them time to sort it out and I am also worried that I might compromise what

passes for my care by making a fuss.

My causes for complaint are:

1. Six weeks after first appointment I have not yet had follow up appointment

through when tests showed a Vit D issue and GP won't prescribe because he says

it's up to the consultant (I am not actually too bothered as am supplementing

anyway now)

2. Can it be best practice to make a clinical decision and refuse someone

treatment without seeing patient and on basis of eight month old test results?

3. How can consultant refer back to primary care for treatment that is not

available?

4. I feel I ought to add something about communication being so poor, but

haven't quite figured out how to word it.

Do you have anything in writing from the consultant or the

> haematologist giving reasons why they refuse to take matters further?

[Guest guest]

The ferrous biglycinate is the so called gentle Iron - it just wasn't very

gentle with me!

D

-

> Hi dolly,

> What a mess! there is a supplement called 'gentle iron' I have

never tried it ,but you could do a search and find out about it and see if your

doc is willing to prescribe- if not then you'll know where to get it.

>

>

> >

> >

> > In terms of iron supplements, I did 3 months on Spatone and my level went up

from 18 to 19. I then tried ferrous sulphate (one a day) to try to raise it

more rapidly, but had horrendous diarrhoea. On a recommendation from someone on

here I tried ferrous biglycinate (one a day) and the same thing happened.

> >

> > Does anyone know of any form of iron supplement that is effective and may be

less likely to upset my digestion? I have now had this ferritin deficiency for

at least 12 months and probably a lot longer and I would like to get shot of it.

I don't mind throwing some money at this.

> >

> >

> > Don't want to risk jeopardising my care (what care I hear you say) by making

a formal complaint until I absolutely have to.

> >

> > Frustrating.

> >

> > D

> >

> > >

> > >

> >

> >

> > ------------------------------------

> >

> > TPA is not medically qualified. Consult with a qualified medical

practitioner before changing medication.

> >

> >