NP Thyroid 1.5 grain: Hi guys, Finally I got NHS... - Thyroid UK

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NP Thyroid 1.5 grain

ziel profile image
ziel
40 Replies

Hi guys,

Finally I got NHS prescription for NP Thyroid 1,5 grain from my Endo in hospital. I went to hospital pharmacy and they said I need to wait about 5 weeks to get it. It is my first prescription and I believe Endo gave me only a month supply, so from my counting I need to get another prescription from my GP now if I want to have a next month (or 3 months) supply because of waiting times. My local pharmacy of course told me they can't get it and the only one able to is this one from hospital, but it's quite far away from me and I don't want to wait so long (my thyroid was completely removed so I can't have a breaks from taking hormones). Are there any online pharmacies that can get it for me FAST? I'm on medical exemption as well..

Thanks :)

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ziel profile image
ziel
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40 Replies
LAHs profile image
LAHs

For what this is worth, you might find yourself traveling a long way to get the right meds. I personally have a 400mile round trip, fortunately I have friends at the far end where I usually stay, but I have done it in one day on a couple of occasions. The reason is that it is not easy to get the right meds prescribed, I did achieve it but then had to move (because of the recession). I moved 200 miles away and local docs hadn't heard of anything but Levo (because that's what the American Thyroid Assoc tell's them to use). So I had to keep my original doc. who is now 200 miles away!

Yes you can get online Pharmacies to supply, try the manufactures first (e-mail them) I had luck with the Armour manufacturer, they were very understanding. There is an online pharm. in the US but I will have to PM you the address (were not allowed to "advertise"). You will have to pay for this first batch though, while you are waiting for your regular prescription to come in (maybe the NHS will refund you because of the circumstances). It's not particularly expensive.

I too had a total thyroidectomy(TT) and I was put on T3 for about a month before I started Levo. You can buy T3 from Greece without a prescription, I will include that in my PM to you. But yes, you are right, you should not have any lack of medication after a TT. Although……..having said that, lack of all thyroid medication is done for 15 days before one of those Radioactive Iodine scans, so it will not kill you, but you had better get on something within 2 weeks.

helvella profile image
helvellaAdministratorThyroid UK in reply to LAHs

So far as I am aware, no manufacturers of prescription desiccated thyroid will supply direct to patient in the UK.

The NHS will never refund like that.

Do bear in mind that on-line pharmacy rules vary by country. The UK happens to be fairly easy-going in that specific regard.

ziel profile image
ziel in reply to helvella

If hospital can get it then any of them can, it's just matter of cost I think. What's the point for pharmacy to order one box of tablets every month? In other hand - what's the point for me to go to the doctor it I can't get a medication I was told to take? This is a vicious circle.

LAHs profile image
LAHs in reply to ziel

Ziel, I would recommend driving to the hospital and get your pills. While not convenient it is less stressful than trying to get "them" to do the sensible thing.

ziel profile image
ziel in reply to LAHs

I did - got first prescription from my endo consultant - but I have to wait 5 weeks for delivery!! That's the problem - if I finish first pack I won't have anything until they get me a new one (and again 5 weeks waiting time).

helvella profile image
helvellaAdministratorThyroid UK in reply to ziel

Is it better for them to order two (or more) boxes and find the rest end up on the shelf never to be dispensed?

At, say, £200 per box.

ziel profile image
ziel in reply to helvella

Well, I would order it anyway (on my repeat). To be honest - it's not our business how they operate, if we get a prescription it means we need a medication and they should supply, that's what they do for money. I know I don't pay to them, but NHS does, and I do pay my taxes and NI, so NHS can pay for my meds. This is just crazy.

helvella profile image
helvellaAdministratorThyroid UK in reply to ziel

Welcome to the world of crazy.

You cannot know you will get a repeat prescription. Even a medicine you could have been taking happily for years could get stopped at the drop of a hat. This is precisely what has happened to a number of people taking liothyronine. They are told it is too expensive and the cannot have a prescription any longer.

The pharmacy has no idea if you are ever going to go back to them even if you have a prescription. You could find yourself in circumstances where you need to get it elsewhere.

Can we really expect them to buy, say three packs at £600 and, quite possibly, only get reimbursed £200? (Obviously various percentages apply - these are super-simplistic figures.) If we expect that, then they will have to make very sure they get overpaid for some other medicines.

ziel profile image
ziel in reply to helvella

Actually I think health is more important than big pharmacies money, let's say £600 is not much for them. These drugs are not popular at all, they wouldn't waste money on it. If I was sympathizing with every pharmacy I would be dead already. But anyway it's not pharmacy fault that drug is not recommended and I somehow understand them, but I'd like to make sure I get what I need.

helvella profile image
helvellaAdministratorThyroid UK in reply to ziel

We are not necessarily talking about big pharmacies. There are many small pharmacies around the country, particularly in more rural areas. We also have to multiply the £600 by some unknown factor to cover all the various medicines they are ever asked to dispense so they always have them in stock.

No-one is asking you to pour out sympathy for pharmacies, just to recognise the realities of them running their businesses.

If your need for medicine is great enough, you do have the choice of buying your own, even if only to cover the first faltering steps towards establishing what you hope to be a regular prescription and dispensing regime. Maybe one sixth of the stock cost for a pharmacy, that is the £600 I put up as a possibility, would cover you for three months?

ziel profile image
ziel in reply to helvella

No I wouldn't since I have free prescriptions. If I didn't I would consider it - but probably £200/pack would be too much for me. I don't think I make more money than pharmacy. Plus I know small pharmacies are different - that's why I didn't go to small pharmacy, but big one.

helvella profile image
helvellaAdministratorThyroid UK in reply to ziel

I suggested 100 tablets for, probably, less than £100. The NHS cost is somewhere around £200 per pack - not what you would have to pay.

LAHs profile image
LAHs in reply to helvella

Yes, OK, noted.

The reason I thought of a refund is because my daughter went to school in England and returned to California one Christmas with a terrible case of varukas (sp). She could almost not walk at all - except on the side of her foot. I was so shocked I took her for emergency treatment with the nearest podiatrist. It truly clobbered me financially, but my child couldn't walk and was in pain! My daughter said that we could get a refund via the NHS, I didn't believe her, but filled out the forms she sent me when she returned to school just to show good faith. And waddyu know, it worked!

Well, it was a long time ago, and it looks as if it is different now. Sorry Ziel, forget that one.

helvella profile image
helvellaAdministratorThyroid UK in reply to LAHs

Yes - there can be some weird and wonderful reimbursements.

But refunding when the product is prescription-only and was supplied without a prescription?

ziel profile image
ziel in reply to LAHs

I feel bad enough on 150 levo, imagine being without anything lol.

PushinLimits profile image
PushinLimits

OK that's crazy cause if you don't have a thyroid at all and have to wait 5 weeks to get more meds ... you can't just drop off your meds without balance ... every time you drop off your meds it takes time for your body to a just again so need to go to your endo and have them set up a script plain with that drug place

ziel profile image
ziel in reply to PushinLimits

tell this to my gp.. I already forced him to give me stronger levo (from 125 to 150), but it doesn't make me any better, he thinks everything is ok cos I'm in range... When I hear 'everything is in range' I want to slap him. Why they don't listen when you tell them your symptomes? aaargh...

PushinLimits profile image
PushinLimits in reply to ziel

Have you tryed a over the counter estrogen ... balance is key in thyroid it's tricky cause it also matters in water you drink down to vitamins to take to much can tip the scale tip that scale to much you get all kinda of crazy ...sweaty...moody...feeling numb and even suicidal ...this is when you need to be very worried.

ziel profile image
ziel in reply to PushinLimits

these are the symptomes I have:

-hair loss,

-very dry, itchy, rashy skin,

-face swelling,

-weight gain,

-feeling cold, cold feet and hands,

-ALL THE TIME tired and sleepy,

-sweating as a pig at night,

-no libido,

-my period is late or too early, before I was on 28 days every month.

PushinLimits profile image
PushinLimits in reply to ziel

OK in usa regular Dr's have a different T3 and T4 scale chart then what an endocrinology would go by so Dr's make a difference and the side effects your telling me right now your way off on your meds :(

PushinLimits profile image
PushinLimits in reply to PushinLimits

Ppl with long hair should loose about 200 strands of hair a day ... dry itchy skin comes with the fact that you might need to drink more water cause the pills do dry your body out fast... try coconut oil and drink more water.

Face swelling... cold...hands and feet...night sweats is a big sign of meds are off ... cold hands and feet means your blood pressure is low night sweats is cause your heart beats slower at night cause your not active and your under covers.

ziel profile image
ziel in reply to PushinLimits

I've been going thru this already between my two surgeries, but I somehow manage to regulate my hormone levels before my second op and I was just super fine, everything stopped and I felt good, but after second op and thyroid removal - all came back again. Btw my hair is extended lol, at least I can pretend I still have some ;)

PushinLimits profile image
PushinLimits in reply to ziel

Try takein magnesium ...potassium and using sea salt ;) now if you take to much of them pills your body will let you know by you running to puke your head off so watch don't go nuts

Clutter profile image
Clutter

Ziel, if you have the prescription see whether Boots or Lloyds have it in stock or whether one of the specialist importers can obtain it quicker thyroiduk.org.uk/tuk/treatm...

If you don't have the prescription contact your endo or GP and ask for Levothyroxine or Liothyronine to tide you over until the hospital has NDT in stock. Your endo should have given you a pink form to give to your GP to order repeat prescriptions.

5 weeks without replacement is too long. It won't kill you but you will feel increasingly ill and unable to function well.

ziel profile image
ziel

I'm on 150 mg levo now, I just don't want to mix it with ndt, you know one month ndt then wait for next delivery and taking levo in the meantime. My health is bad now, they left me without any medication for a year after the first surgery and it just killed me. I had to go back to my country and get a private treatment. I finally changed my gp and things moved, but now problems again cos of ndt.. How crazy is that?

Clutter profile image
Clutter in reply to ziel

Ziel, did your endo give you a pink form or letter for your GP re repeat prescriptions for NDT?

ziel profile image
ziel in reply to Clutter

I have repeat for levo, didn't get the one for ndt yet, because I wait for the first box from hospital. So I thought I would go gp now and ask for ndt repeat and place the order soon so I won't have any breaks in treatment, but I can bet he will ask me why I want to order it now if I don't know how will I feel on it (since I'm still waiting for first box). And she didn't give me anything pink, just said she will send a letter to my gp.

Clutter profile image
Clutter in reply to ziel

Ziel, wait for your GP to receive the endo's letter. As soon as you have the NDT from the hospital you can ask your GP for a repeat prescription and point out it takes 4-5 weeks to import it.

ziel profile image
ziel in reply to Clutter

It's been 3 weeks now so he probably have the letter already, but if she prescribed me only month supply so I would need to ask for repeat now, so they can get it on time. I consider myself lucky anyway, my current doctors are not that bad, at least they didn't moan when I asked for ndt lol.

helvella profile image
helvellaAdministratorThyroid UK

Official list of UK internet pharmacies:

nhs.uk/Service-Search/pharm...

galathea profile image
galathea

There is a whole page on the thyroid uk website which gives you the names of the chemists you can approach..... No need to travel far, amny chemists will post you the meds these days...... Here is the link to the thyroid uk page.... thyroiduk.org.uk/tuk/treatm...

Xx G

SilverAvocado profile image
SilverAvocado

If you cant get it any quicker, an option would be to buy a month or two supply yourself, and then use those tablets to bridge any gaps in the NHS supply.

It certainly won't cost you £200 per box. I pay about £20 per bottle of 100, and recently heard of someone paying under £5, although I think it is the thai brands that are in that very cheap category.

Jazzw profile image
Jazzw in reply to SilverAvocado

That's what I'd do. I know there's a principle at stake here - why should you have to do that, etc - but health is more important than needing to prove a point. Fight the battle after you've got the meds to make you stable.

ziel profile image
ziel in reply to SilverAvocado

I just had a call from my GP and she said she needs to consult my Endo if she can give me next prescription. I'm tired of it.. I can't buy this drug without prescription, can I?

SilverAvocado profile image
SilverAvocado in reply to ziel

Most members buy it without prescription, by importing from abroad. Start a thread asking for suppliers and you should get lots of private messages.

helvella profile image
helvellaAdministratorThyroid UK in reply to SilverAvocado

SilverAvocado,

ziel has already been sent information about private purchase without prescription.

An earlier response by ziel on this thread said "No I wouldn't since I have free prescriptions."

SilverAvocado profile image
SilverAvocado in reply to helvella

Thanks!

ziel profile image
ziel in reply to helvella

they made me angry so much today that I'm willing to pay lol

helvella profile image
helvellaAdministratorThyroid UK in reply to ziel

I don't blame you being angry. Doubt anyone does.

Over 36,000 people have joined here and a large proportion of them have reasons to feel angry about thyroid treatment. (Though clearly not all of them post regularly!)

ziel profile image
ziel in reply to helvella

I really think doctors don't want to treat people, they just want us to be ill, so they can make money. Ok, I might understand when people are having strange conditions and doctors don't know what to do, but for Gods sake, something so easy to treat is a big problem?

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