Lactose free levothyroxine

[Rolo36]

Please can you tell me if lactose free levothyroxine is available on NHS

[Clutter]

Rolo36,

If your GP specifies lactose-free Levothyroxine on your prescription your pharmacist can obtain it from Aliud or Henning in Germany.

thyroiduk.org.uk/tuk/treatm...

[Rolo36 in reply to Clutter]

Thank you. What if they can't. Can I get it myself?

[Clutter in reply to Rolo36]

Rolo36,

You'd have to pay for it if you use your prescription to order it yourself.

[Rolo36 in reply to Clutter]

That's fine but where do I get it from? I've been on levothyroxine 50mcg for over a year now and ever since taking it I've been extremely bloated like I'm pregnant. I only weigh 6st 4lbs so it's really noticeable. So was hoping the lactose free version would help? Unless you know of any other types?

[Clutter in reply to Rolo36]

Rolo36,

If you've been diagnosed as lactose intolerant your GP should write that lactose-free Levothyroxine is required on your prescription and your pharmacist should source it for you.

If you haven't been diagnosed you can fax or email your usual Levothyroxine prescription to Aliud or Henning and pay for lactose-free Levothyroxine. Contact details are in the link I provided above.

Have you tried gluten-free diet? Gluten intolerance can cause bloating.

[Rolo36 in reply to Clutter]

I haven't been diagnosed with lactose intolerant but these tablets clearly aren't agreeing with my stomach so I just hope that lactose free ones might be better? I've been tested gluten and it came back fine.

[Clutter in reply to Rolo36]

Rolo36,

Unless you have lactose intolerance your GP won't prescribe lactose-free Levothyroxine. If you want to try it you can use your NHS prescription to buy it yourself from Aliud or Henning.

Even if you don't have coeliac disease you may have sensitivity to gluten so it is worth trying a gluten-free diet for 2 or 3 weeks to see whether bloating improves.

[Rolo36 in reply to Clutter]

Thank you for your advice

[helvella Administrator Thyroid UK in reply to Rolo36]

I have actually used a standard UK NHS prescription to purchase Aliud and Henning levothyroxine from a pharmacy in Germany. I only had to send scans or good quality photos of the prescriptions.

Although I do not need dairy-free/gluten-free, I found the products worked well for me until there were problems with my particular supply.

Of course, in Germany it is treated as a private prescription - and you pay their price. It isn't too bad and certainly far, far less than "specials" from Martindales.

[Rolo36 in reply to helvella]

Thank you. How do I order this?

[Chippysue in reply to Rolo36]

If I ever had to pay for mine myself it would cost me £100's so I don't think that you would want to

[Chippysue in reply to Clutter]

I haven't looked at this list in a while - mine isn't referred to as compounded ??

My Endo calls mine purified levothyroxine

Sue

[Chippysue]

Martindales make it which your doctor can prescribe - the pharmacist just puts in a "special" order.

I have been having purified levothyroxine since 2009. The NHS provide them. It is levothyroxine in calcium phosphate, hand-made by Martindale's in gel capsules - the type that you can pull apart.

If you want to know any more details you can message me.

Sue

[Rolo36 in reply to Chippysue]

Thank you Sue, I will ask my doctor about this. Everytime I've asked him if there's something different I can take he always says no. I showed him photos of me bloating and he said just come off the levothyroxine?! I was like well don't I need it?! Anyways I've stayed on it as I didn't think it was wise to come off it but I'm still so bloated it's getting me so down.

[Chippysue in reply to Rolo36]

but to be fair your doctor will not know about purified levothyroxine. I could not tolerate normal levothyroxine, long story but the 4th Endo that I saw suggested the purified levothyroxine, so for many months my family used to have to drive to Sheffield (1.5 hr drive) to collect my medication until I saw my Pharmacist and got them to contact Martindales and then told my GP what he had to put on the prescription, hey presto I have a prescription for a 3 month supply each time. I moved house a year ago and the new GP had to apply to a the different PCT who agreed to supply it. Well - I did prime my new MP ready for if they said no.

Sue

[Rolo36 in reply to Chippysue]

Thank you for advice. Do you think I should talk to me pharmacist and ask if they can get it then? And then go to my doctors?

[Chippysue in reply to Rolo36]

The pharmacist just needs to have an account with Martindales, the difficult part is getting your GP to prescribe it. If your pharmacist hasn't got an account with Martindales then Boots usually do

[Rolo36 in reply to Chippysue]

Okay thank you I will give it a go

[Bellerin]

My GP rang the local hospital endo, and asked him what my options were, I have a gluten, dairy & lactose allergy, and he phoned her back and she put me on some pure liquid Levo. She just changed my prescription and I get it the same as before. I couldn't tolerate the tablets, they make me have the worse stomach pains! Hope this helps Good luck

[Rolo36 in reply to Bellerin]

Thank you did you suffer from bloating when on the tablets?

[Bellerin in reply to Rolo36]

I'm not sure, I have got some digestion problems anyways, but the tablets really didn't suit me. I am quite bloated up at the moment, but I am hoping to change over to NDT as I just think Levo doesn't suit me either! Hope you feel better soon

[Rolo36 in reply to Bellerin]

Thank you but had this constant for over a year now. What's NDT?

[Bellerin in reply to Rolo36]

Natural Desiccated Thyroid. If you have a look on the stop the thyroid madness website (American) they explain things far better than me! And if you check out the Thyroid UK website, they are great as well. Most people find Levo really good for them, and its the easiest thing to be on as the NHS uses it. But some people find it doesn't work, so they look for other things. I am actually anorexic, so I've got a lot of health problems as well as my thyroid, so Levo will probably work just fine for you, but everything is snail-pace slow I'm afraid, so its just about waiting to see what works for you, and keep having thyroid tests to monitor things