lactose free levothyroxine: I have just been on a... - Thyroid UK

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lactose free levothyroxine

lollipop3 profile image
29 Replies

I have just been on a course of 25microgrames of levothyroxine for 3 weeks with the worst side effects ever extremely high blood pressure, inflammation ,anxiety ,like my eyes bulging out head pain jitters everything you could name ,and now my doctor has said that im not on enough , but I have just read the label that the levothyroxine has lactose in it and im very sensitiive to lactose I am gluten and dairy free , I now feel as though I was being poisoned , my doctor has told me to stay off them for a week and has re done blood tests to get the readings , but what are the alternative tablets to take beside the levothyroxine , because I feel if I have to take them again I will be seriously ill ,only just starting to feel better and my old self after not taking for 3 days ....help!!

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lollipop3 profile image
lollipop3
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29 Replies
lollipop3 profile image
lollipop3

also did not mention have lost nearly 2 stone in 2 weeks ,and was near point to having to be put on a tracheostomy for the breathlessness all due to within taking this tablet in 2 days

Clutter profile image
Clutter in reply to lollipop3

Lollipop, do you have lactose intolerance to other medication? There two European brands of lactose-free Levothyroxine which can be prescribed and liquid thyroxine in this link thyroiduk.org.uk/tuk/treatm...

lollipop3 profile image
lollipop3 in reply to Clutter

not that I know of , I have never felt like his with any other types of medication , can I get these European lactose free prescribed in the uk ,also which do you think is best the liquid or tab form

Clutter profile image
Clutter in reply to lollipop3

Lollipop, You can if your GP agrees you have lactose intolerance and will agree to prescribe them. Otherwise, as Helvella suggests, use your NHS prescription to buy from Alliud or Henning. Website details are in the link below thyroiduk.org.uk/tuk/treatm...

lolajone profile image
lolajone in reply to Clutter

I have been prescribed aliud lactose free t4, however have just been told by the pharmacist at the gp surgery that it has been discontinued.

Clutter profile image
Clutter in reply to lolajone

Lolajone, there is a link to Henning who also do Lactose free Levothyroxine in my response to Lollipop3.

lolajone profile image
lolajone in reply to Clutter

Thanks Clutter. I posted more as a warning for others really

helvella profile image
helvellaAdministratorThyroid UK in reply to lolajone

Funny how I can see it available for sale right now in 50 and 100 microgram tablets.

lolajone profile image
lolajone in reply to helvella

Funny how easily I can believe that Helvella. Whether they are incompetent or obstructive the jury is out. They are apparently getting me some other lactose free t4 also manufactured by Aliud, it will be interesting to see what turns up

helvella profile image
helvellaAdministratorThyroid UK

If you want to get some lactose-free levothyroxine, and you are willing and able to pay, you can buy your own quite readily. It is best of you have a standard NHS prescription which you can scan or photograph.

Even if you do not intend to carry on paying like that, it represents a fairly quick and simple way of getting the product without going through the hoops that you might have to with GP and pharmacy.

lollipop3 profile image
lollipop3

where can I buy these from I don't mind paying as long as I don't have to go through what I have just been through I felt as though I was dying , I was also put on ramipiril 2.5 mg blood pressure tablets to try and reduce my 212/114 blood pressure which I add is still high at the moment but not as high its 170/112 so not sure if those where making the levothyroxine 25 micrograms any worse

shaws profile image
shawsAdministrator

Don't worry - I am very sorry you were so unwell. There is lactose-free levo on special prescription. Details:

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

shaws profile image
shawsAdministrator

P.S. also a very low dose of levothyroxine can give us worse symptoms. Cursor down to the date November 20, 2002 on the following link to see the effect of too low a dose.

web.archive.org/web/2010103...

Lollipop3,

Levothyroxine can cause all the symptoms you mention whether you are intolerant to lactose or not.

I experienced horrendous side effects when starting Levothyroxine 4 years ago, then felt slightly better for a while but am now regressing with other symptoms. Therefore be aware that you may experience a degree of side effects even with a lactose free medication.

lollipop3 profile image
lollipop3

i cannot understand why I have to go on them when I feel fine no symptoms just that doctor says that the bloods have come back that I have low thyroid ,its getting me down because they have done more bloods and im sure he would want to put me on a higher dose of them than the 25mcg that I was on .I have never had chest pains palpatations ,anxiety, headaches , my head was actually sore if someone had pulled my hair hard ,breathlessness , diarrheoa, very very high blood pressure ,all have come back down now off tablets and on amlodipine 5mg for blood pressure , im wondering if its just a iron deficiency I may have instead , as I felt I was overdosing on the levothyroxine, do you mind me asking what your symptoms where of side effects .

Vickyanne61 profile image
Vickyanne61

Martindales make the lactose free capsules. The lactose is in the make up of the capsules. Look them up on Google, Martindales.

Good luck.

helvella profile image
helvellaAdministratorThyroid UK in reply to Vickyanne61

Given that the reformulated Teva Levothyroxine recently launched is lactose-free, and is (so we hear) the same price as the other levothyroxine products on the UK market, there seems little reason to spend a vast fortune on Martindales' services and products. Whether that is money out of our own pockets or from NHS funds.

Tanya-B profile image
Tanya-B in reply to helvella

Is Treva the brand and can my GP get it.

Thank you

Tanya-B profile image
Tanya-B in reply to Tanya-B

I mean Teva?

Vickyanne61 profile image
Vickyanne61

Martindales can be prescribed by your GP. It will not cost you a penny. My Daughter's was prescribed by her GP once I told him about it.

Vickyanne61 profile image
Vickyanne61 in reply to Vickyanne61

Hope this helps

Tanya-B profile image
Tanya-B

My Dr just informed me it is nearly impossible to get lactose free levothyroxine and I would have to pay for it. He said it would cost hundreds per month when I said i would pay for it.

Any advise greatly appreciated..

helvella profile image
helvellaAdministratorThyroid UK in reply to Tanya-B

Your doctor would appear to have most of the makings of an idiot.

NOT that he doesn't know about Teva being lactose-free. BUT that he said what he did without actually knowing and checking.

Teva is readily available in pharmacists up and down the country. In some places, it seems to be the only make being offered! For dosages which are the same as existing products, the price is (apparently) exactly the same.

Take your prescription round as many pharmacies as you need - you will get it eventually, if not at the very first one.

Tanya-B profile image
Tanya-B

Thank you. This is the same Dr who told me the thyroid can't grow back and refused me an ultra sound.

It took Dr in France less than an hour looking at my bloods to determine that I was Thyrotoxic . I had flown to France and had respiratory failure on the plane.

My Dr would not believe them and I had to scream at him to get a scan. I had sub total thyroid removed 30 years ago and was never told I had graves. 30 years of ill health and the last ten being poisoned by thyroxine.

The Dr was shocked when the scan showed my thyroid has grown back to nearly its full size. Still need to take 50mcg of thyroxine but I am lactose intolerant so hoping lactose free won't give me side affects.

It's all so very confusing 😓

helvella profile image
helvellaAdministratorThyroid UK in reply to Tanya-B

A doctor who understood might at least have offered a prescription for Aliud or Henning from Germany. Wouldn't cost a vast amount. Why, you could use a UK prescription to get it yourself from a German source and only pay a few tens of pounds!

A doctor who understood could have spent a few seconds searching PubMed for thyroid regrowth reports.

Note that it isn't his not knowing things but his lack of realisation that you can find out and not rely on assumptions or out of date "knowledge".

If I criticised on the basis not not knowing things, I'd have to admit to being a prime member of the "Don't know" set.

Tanya-B profile image
Tanya-B

Thank you

helvella profile image
helvellaAdministratorThyroid UK in reply to Tanya-B

Tanya-B,

If you reply by clicking on the GREEN Reply button, your reply gets threaded and the person you are replying to gets an alert! :-)

Only just noticed your response.

foxonthetrot1 profile image
foxonthetrot1

Does anyone know where I can buy lactose free levo privately?

poorplanteater profile image
poorplanteater

Wow! That happened to me in the first five days of .25. Anxiety and shakes and head ache and I never get headaches. I quit and all symptoms went away. I was doing just fine on herbs but herbalist added iodine and Tsh went from 2.08 to 3.71. Can’t afford herbalist do treating myself with herbs and no iodine plus a couple of other supplements she had me on. Didn’t know of lactose in levo. Won’t be using it. I am vegan so will be sticking with herbs from now on.

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