Very common illness

[Maggiet]

In the Mail on Sunday Newspaper supplement yesterday it listed the number of prescriptions issued for various drugs. Levothyroxine sodium was the 3rd most prescribed drug at nearly 24 MILLION prescriptions given out last year! In view of that, why on earth are we not given more support and why is it listed as a 'GP managed' condition? There obviously should be more resources put in for us sufferers and we should be able to access specialist care. What do others think?

[Shuffles]

I feel the same as you. I have felt so unwell for so many years but am told my thyrois blood results are "normal" whatever that is I wonder. Been trying to get my GP to send me to a specialist but she is determined that I dont need to see one, where do we go with this attitude.

[Dancerfromparis]

don't understand maybe it's different where I live in the South but I don't see why the law would suddenly in a different area change. The patient charter says it is the patients right to ask for and be given a choice of three hospitals plus a specialist that deals with their particular illness if asked for. I had no problem seeing and endo and I don't understand if you demand it how your Dr can refuse you they actually cant by law!

Sandie

<b>Updated on Sep 13 2010 9:04AM:</b> PS: If your Dr wont do it change Drs!

[Bunny]

I agree that there seems to be a hugely differing attitude amongst GPs, and it mussy vary across the country. I saw my Dr with all my symptoms and he instantly referred me to an Endo even though my TSH at 2.6 is within the normal range. The Endo has given me a very wide range of blood tests because he said the symptoms and the TSH could mean thyroid or something else. I guess the acid test will be whether, when I get the test results at next app on Oct 5 th something shows up and/or I actually get treatment.

My life has come to a halt because of my symptoms:I spent most of last week on the settee too exhausted to do anything........cook bath housework and my disabled hubby has had to do everything for me recently. I also have an Appt with the DWP tomorrow about support for my return to work...because for the first time ever I am on benefits at 54. the way I feel I cat even imagine working again....

I think some of us with these symptoms and people in other areas will need to put the Patients Charter to the test by demanding what we have been promised...before some Gps will change.

[rosee]

Hi Maggie,

You're right, there should be more available for us. It's becoming more apparent to me that a lot of GPs don't know a great deal about thyroid problems, if they did a whole lot more of us would feel a gret deal better than we do.

Dr Skinner has set up a World Thyroid Register if anyone is interested the address is worldthyroidregister.com/de....

Rose x

[binky]

Call me a cynic but there VERY few illnesses that entitle the sufferer to free prescription for life. When I was diagnoses many year ago, I was told how lucky I was to be getting this dubious putty medal.

I have found about ten and all of them are related to glands

The Daily Mail might be firing the first salvo across the boughs to stop us poor scroungers getting free medicine for life. After all, if you are too tired and in pain, it MUST be your fault.

[trw99]

the government knows all this and issuse guidelines to mimimis its costs and so many people are denied help

[helvella Administrator Thyroid UK]

Maggie,

You might be interested in my earlier blog post:

thyroiduk.healthunlocked.co...

Although the free prescriptions issue is important, we shouldn't get too carried away. It is only "worth" just over a hundred pounds a year - significant to many of us but not unachievable for most.

"If you will have to pay for four or more prescription items in three months, or more than 14 items in 12 months, you may find it cheaper to buy a PPC. The charge for a single prescription item is £7.20, whereas a three month PPC will cost you £28.25 and a 12 month PPC £104.00."

<nhsbsa.nhs.uk/1127.aspx>

If (or when?) the government starts to look at that as well, of course the impact could be much greater.

Seems to me that the numbers alone dictate that it must be GP-managed as a rule. There simply are not enough specialists in the country to allow all of us access to specialist care. Some countries (e.g. Japan) have specialist thyroid institutes or hospitals. Maybe something like that would provide a way of allowing specialist access in an efficient format?

You could keep the GP out of the loop as well for many by allowing patients to have direct access to blood tests. After all, many know considerably more about the subject the most GPs. (Or at least, no less. ) So how about dishing out a few blood test "vouchers" redeemable as needed?

Rod

[Maggiet]

It might be me being naive, but I didn't feel that the headline was the number of FREE prescriptions being issued, just that we are the 3rd biggest group of prescription receivers. The biggest number was for statins and I guess that a lot of those people pay for their tablets as high cholesterol is not a life threatening illness in the sense of free prescriptions. I just feel that we need more specialist help and sooner!

[waveylines]

Oh wow -I had not idea there was so many issued -but am not surprised. As for the cost I'm afraid it costs me far more than £100 per year to purchase the medication I use -Armour thyroid -more like over £400 now I have to pay VAT + RM charges ontop of the import delivery charge. I'm feelingthe pinch and would really like mine on a free prescription (and I do have a free prescription card as I have formally been diagnosed with Hypothyroidism by my GP!) frankly it's all a mess -fingers crossed Dr Skinner's new world challange has an impact.

[helvella Administrator Thyroid UK]

Maggie,

From memory, the statistics are based on active ingredients. So each Brand of statin, being chemically distinct, is separately counted. Whereas all 'brands' of levothyroxine are added together.

Many would suggest that life-saving medications like asthma inhalers should also be free.

Rod

[helvella Administrator Thyroid UK]

Waveylines,

But that has nothing to do wither whether NHS prescriptions are free or not. Rather whether the NHS prescribes desiccated thyroid or not. ANd yes, I also scream at the RM & HMCR impositions.

Rod

[thyriodpest]

thyroidpest.

Hi my name is actually Margaret but the name I choose is thyroidpest...because since I have been diagnosed with Hypothyroidism it has been a 'total pest' for me. I am a nurse but am now on pension so I have finally been able to study a little more about the thyroid. To be very honest I find it very difficult and have not been able to find a good Doctor who knows enough about the thyroid...too many just look at the TSH blood result and that's it!Would love to hear and talk about the drug called ARMOUR which I am now taking and find it a great help....Levothyroxine has never worked for me and the worse part of being hypo th. has been the weight gain....the pain in the articulations, sleeping even standing up in a shop waiting for bread, I could sleep at anytime! Anyway sorry for all this comment..have patience with me but its the first time I do anything like this....before just suffered in silence!Thank you to anyone who will read this and if you have any tips, then I'm all ears.

[Maggiet]

I totally agree with you there. My husband is a mild asthmatic and has to pay for his prescriptions even though his condition is defo life threatening should he have a bad attack. Our only saving grace is that we live in Scotland so only pay £3 per script and even less next year.

[maureenlesley]

I've only been on the site about 3 weeks, and believe me I have found out soooo much about the Thyroid and it's various ailments. I believe I have the same problem with Levothyroxine as you. The site has given me the confidence to do some research, and I'm finally trying to understand what is really wrong with me. I was able to go to the Doctor armed to the teeth with information. If you read previous blogs from everyone on this helpsite, you will learn an awful lot, plus pointers to where to look for further info.

Never say sorry for anything that is beyond your control. It's not your fault. It's that horrible little gland in your throat that makes you feel ****

[David]

Hi , I had the same responce from my doctor, I was having a really bad time and going through every side effect you can imagine, I was very anxious, my heart was banging in my chest, I was breathless, every muscle in my body ached, I had no strength in my arms and legs, my voice went husky and still he would not refare me, all he would say was what do I write down on the referal ? And he even said I was depressed and wanted me to go and see a shrink, before having my problem with my thyroid, I never went to the doctors, it had been that long since I went they could not even find my medical records. Finally when I got to see the specialist within days I had a brain scan, heart tests, chest X rays the works all on Chrismas eve. I am changing my Doctor. So please dont ever give up, the symtoms you are having are real, Doctors either dont understand the thyroid, or if they do they dont do as much as they could because of costs. My Doctor actually said " there are that many people with thyroid problems, that if we were to send every one to see the specialists, they could not cope"

[shaws Administrator]

If the BTA and the Royal College of Physicians changed their attitude to the the use of generic levothyroxine as the only method of treatment, and let the GP's use their initiative on the best way to treat their patients, we know the NHS would save vast amounts of money. Initially, I had no idea that different generic brands could vary, but when I did I gave a few months to each. I have now been given a trial of T3/T4. We are prescribed the cheapest ( which may work for some) medication supposed to make us well with maybe a few adjustments, but we end up suffering with the side effects which are then treated as separate medical problems and make our lives a misery. The Endocrinologists also have to follow the guidelines laid down.