What to do next: I am allergic to the liquid... - Thyroid UK

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What to do next

spinela7 profile image
52 Replies

I am allergic to the liquid Levothyroxin had a bad reaction heart racing and shaking top to toe it was the methyl benzoate. So I cant take my accord anymore because I m lactose intolerant and the problems I am having with milk they now feel I may be allergic to milk as well with my symptoms. I was given Teva lactose free great but it had Mannitol and I am fructose intolerant so this also causes me issues. I have been through what is available on the NHS with the pharmacist for me but there was nothing else he said. The GPS can’t help me they have said.

Iam allergic to milk I need my levothyroxin and they all contain lactose. Do you think going private to an Endo will help? Thank you for your advice. Spinela

52 Replies
Litatamon profile image
Litatamon

Hi spinela,

How incredibly frustrating for you. I suppose this would be out of pocket but what about compounding? We have no lactose-free levothyroxine in Canada but a compound pharmacy has told me that can do lactose-free NDT. for me. I can't afford it, but that most definitely exists.

I also read on another site about a Canadian who was inquiring about lactose-free options and came back on with a follow-up about getting compounded lactose-free levothyroxine, when she realized that there were no options here.

Hope you find something that works for you.

spinela7 profile image
spinela7 in reply to Litatamon

Thank you for replying. I have heard of NDT but that’s all I feel a visit to an Endocrinologist is warranted maybe he can help with NDT information thats interesting about compounding but that would be costly. I know that there is a clean capsule Tirosint but it is not registered here. My GP has given me lactose free anti histamine to help when I accidentally ingest milk as nothing is safe to purchase to eat even with the lactose free stamped on the packaging. I do not feel well on this Teva for sure. I thank you so much for replying to my call for help. Spinela

Witchinghour profile image
Witchinghour

It's not good enough that they have just left you to it.

Personally, I think it's negligent. "We know you have a problem but we can't help"?

If you can go private try it. My endo prescribes T3 and NDT. If you're not tolerating T4 there are other avenues you could try.

spinela7 profile image
spinela7 in reply to Witchinghour

Thank you for replying Witchinghour

Yes ,when told only Teva was lactose free and there was nothing else did concern me a lot. I would not use Teva again.

So yes I will ask for an appointment with Endo in preparation that Aristo may have issues let’s hope not.

Thank you for replying very much appreciated

Spinela

tattybogle profile image
tattybogle

my memory is a bit vague here ,but i think there is one other brand that doesn't contain lactose ... Aristo ? ~ it only comes in 100mcg tablets so can be fiddly to get right dose .

(There was recently another lactose free one introduced by Glenmark , but it was withdrawn again pretty quickly .)

i'm not sure if Aristo has any of the other ingredients you have issues with though ..eg mannitol / fructose ......  helvella will be able to be more accurate, as he's made a brilliant list of 'what's what' .... it's here in 'pinned posts' helvella's Vade Mecum for thyroid

healthunlocked.com/thyroidu...

spinela7 profile image
spinela7 in reply to tattybogle

Thank you for contacting me much appreciated.

If you read my reply to SlowDragon it explains my dilemma and what happened next. I have read Helvella comments just what I needed to hear the thread was very long and I intend to read it all.I shall also read Helvella post you gave me as well.

I am in awe of all you people on Healthunlocked so helpful kind and caring it comes through in your return responses and sooo full of knowledge you are amazing people.

Thank you tattybogle I have placed an order for Aristo it looks perfect for me. I have been on thyroxin for years that’s the only issue I have.

Take care and and thank you again

Spinela

SlowDragon profile image
SlowDragonAdministrator

Aristo is mannitol free and lactose free

There are different brands of liquid levothyroxine too

Many people find they need to try different brands liquid levothyroxine too

Alternatively you might try NDT

Not sure if Armour or Erfa are lactose free

spinela7 profile image
spinela7 in reply to SlowDragon

What would we do without you people !!

spinela7 profile image
spinela7 in reply to SlowDragon

what would we do without you people.!

spinela7 profile image
spinela7 in reply to SlowDragon

Hi SlowDragon my opening line says it all. This morning I was looking on goggle put in Scotland and lactose free mannitol free thyroxin to see the Scots had a different thyroxin . What I saw was Healthunlocked muddled up in there so I looked. I could have cried there was a huge response from a lady wanting thyroxin lactose free mannitol free it was a huge number of people involved but Aristo was mentioned I couldn’t believe it wow and the chemist to get it through. Unbelievable, I had stopped my thyroxin for 8 days but I had been Tevo such an unpleasant thyroxin made me very I’ll on the 3rd day I took it which is today. My pharmacist said yesterday only thing on the market was Teva for lactose intolerant.

I am so impressed with you all, you are all backstops supporting us when in need.

An order has gone through for the Aristo I should have it in 5 days it being in stock in Germany. I have no thyroxin in the mean time to take but I did eight days before but my heart was not happy.

Thank you if I hadnt caught you guys looking through Scotland you would have caught me today wow. Can’t say enough you are special people.

SlowDragon profile image
SlowDragonAdministrator in reply to spinela7

I would ring around different pharmacies

or try these online pharmacies

Plenty of members get Aristo on prescription

It should be in stock in U.K. wholesalers, if not in actual pharmacy

thyroiduk.org/if-you-are-hy...

spinela7 profile image
spinela7 in reply to SlowDragon

Thank you again SlowDragon. I will ring around Pharmacy in the am I will also contact GP again for a further open prescription. It was being told may not be in stock was scaring me. I cannot take my accord milk allergy and I cannot and will not pop a Tevo in my mouth it reacted so badly on the 3rd day. My husband said my breathing looked laboured and my speech slurred this went on for hours, I had a bad headache with it and all the other list of horrendous symptoms, it didn’t agree with me for sure. My husband has started a list of phone numbers for the am search. I felt in such a bad place a few hours ago now I see hope something will turn up I will get this thyroxin. I have no alternative but to stop taking it again.

Thank you soooo much for your help . xxxxx

Spinela

helvella profile image
helvellaAdministrator in reply to SlowDragon

So long as I have correctly assembled the information, all UK levothyroxine oral solutions contain either E219 or E217 - or both.

Sodium propyl p-hydroxybenzoate, the sodium salt of propylparaben, a compound with formula Na(C3H7(C6H4COO)O), is also used similarly as a food additive and as an anti-fungal preservation agent. Its E number is E217.

Sodium methylparaben (sodium methyl para-hydroxybenzoate) is a compound with formula Na(CH3(C6H4COO)O). It is the sodium salt of methylparaben.

It is a food additive with the E number E219 which is used as a preservative.

UK levothyroxine oral solutions matrix
spinela7 profile image
spinela7 in reply to helvella

Thank you for replying Helvella

Yes it is the methyl benzoate that I am allergic to it affected my heart made it race and I shook all over. I had about 8 episodes in a half hour.

You are a wealth of knowledge Helvella and I thank you for that. It is amazing sometimes how people you need just pop into your lap just like that. Thank you

Spinela

Jaydee1507 profile image
Jaydee1507

Low vitamin levels can cause Levo intolerance. When did you last have levels of ferritin, folate, b12 and D3 checked and what were they? Going to a private Endo won't help if you can't tolerate the replacement hormones.

spinela7 profile image
spinela7 in reply to Jaydee1507

Thank you for replying much appreciated

All my vitamins are fine I take daily. What I had noticed on my blood test was my platelet count of 449.000 a few weeks ago this was 9.000 over the labs limit. I was having another blood test in 6 weeks so no dairy bingo my platelet count back to normal. I had no issue with accord brand of Levothyroxin but I became lactose intolerant then the milk allergy came into focus.

Thank you again.

Spinela

SlowDragon profile image
SlowDragonAdministrator in reply to spinela7

extremely common to develop dairy intolerance and gluten intolerance with hashimoto’s

spinela7 profile image
spinela7 in reply to SlowDragon

yes, I have noticed that myself many times. My gluten sensitivity and then fructose malabsorption for one, my breath test was high.

After 3 years I can now eat 2 mandarins a day spaced out I cannot eat even a small piece of banana I will try other fruits but for now I can eat a mandarin and I am happy with that.

Thank you SlowDragon for taking the time to help me. xxx

SlowDragon profile image
SlowDragonAdministrator in reply to spinela7

The longer we are on just levothyroxine, the more likely it is Ft3 is inadequate

Inadequate Ft3 leads to poor gut function, leaky gut and food intolerances

You may need T3 prescribed alongside levothyroxine once you get back on steady dose

Bloods should be retested 6-8 weeks after changing dose or brand of levothyroxine

spinela7 profile image
spinela7 in reply to SlowDragon

That’s interesting I hadn’t realised low t3 could lead to food intolerances.My T3 has been always been on the low side it has never been high. I will have to organise my own blood test as even GPS requesting t4 the lab don’t always do it.My next test will be very inaccurate as I have had many days thyroxin free. I will let you know how I get on with Aristo. Thank you for the reminder for thyroid blood test it is now on the calendar.

Thank you again

Spinela

Jaydee1507 profile image
Jaydee1507

In particular it would be interesting to know your iron/ferritin level. Which vitamins are you taking?

spinela7 profile image
spinela7 in reply to Jaydee1507

Thank you for helping me Jaydee. I did have a bad blood test on ferritin about a year ago my ferritin was 10. I did eventually get it up to 28 then 38 I don’t eat red meat or chicken or turkey but I do eat fish. However I had to eat red meat which was very challenging, and then after a while it dropped down again. I couldn’t eat the meat again so I started looking for food that would raise my levels, I started eating NZ or Chilean mussels in a soup puréed and my next blood test 3 months later my ferritin level was over 90. I have never had a good ferritin level so I now aim to eat soup with 2 mussels every fortnight ( they are not good for cholesterol levels) and I treat the mussels like an iron tablet. I take Vit D I inject B12 Vit E Vit C Selenium Folic acid was over 20. I do take a few drops of zinc in water. I also spray on magnesium when I remember also Vit D 120.

Thank you for taking the time to answer my call for help very much appreciated.

Spinela

SlowDragon profile image
SlowDragonAdministrator in reply to spinela7

That’s really interesting that mussels are good source of iron 😃

spinela7 profile image
spinela7 in reply to SlowDragon

Hi, yes for me absolutely but be warned they can affect cholesterol levels. I was having soup daily with no more than 5 mussels and a small handful of prawns. I did initially only use prawns but I saw no improvement really in my iron levels.. I can’t eat mussels as they are so it had to be puréed it worked for me iron levels sorted.

Spinela

Eeyore100 profile image
Eeyore100

Hello, I have been using Aristo for a few months with no issues, but I had to go to an independent pharmacy (Badhams) to access it, all they needed was to put in a call to Alliance to place the order, which seemingly was too much effort for my surgery dispensary 🙄 no extra cost to them, ideally when you request the prescription it needs to mention Aristo first so that it shows on the top line, though again this wasn't an issue with Badhams but it caused a rejection at another pharmacy 😕

Had my first Endo appointment yesterday and they had not heard of Aristo! Or any other lactose free brand? 😳

SlowDragon profile image
SlowDragonAdministrator in reply to Eeyore100

Had my first Endo appointment yesterday and they had not heard of Aristo! Or any other lactose free brand? 😳

Quite unbelievable isn’t it!

Eeyore100 profile image
Eeyore100 in reply to SlowDragon

Yep! I had to bite my tongue 🙄

spinela7 profile image
spinela7 in reply to Eeyore100

Thanking you for getting in touch very much appreciated. I am so very glad that Aristo works for you it has given me more hope that I will have thyroxin to swallow. Thank you for [ Badhams] I will duly contact them this am. My Surgery said no to Tirosint it’s not registered here. My Pharmacist assured me only Teva is lactose free there is nothing else. I walked out his door a bit concerned and scared. My husband went back to the Pharmacy next day and asked the Pharmacist can you get this thyroxin (Aristo) he said yes then, how did she find it &£@?!@&£? he had no clues about this thyroxin either. Thank you so much for talking to me you have given me a burst of energy for today. xxx

Spinela

Eeyore100 profile image
Eeyore100 in reply to spinela7

🤗 sometimes you just have to know how to push their buttons, I only found all this out from this forum and a bit of tooing and frowing between pharmacists 🙄.

It really does help if you know who supplies the item you want so that you can point them in the right direction... like I said with Aristo it's Alliance (who Boots and Lloyds don't deal with I seem to remember) they simply require a call rather than most things that they order through the system...

Thankfully I found a fabulous pharmacists assistant who knows how it all works and ordered me a years supply (before even seeing the script, which only had Aristo written on the top line and initialled by the GP!!? ) and I have a little basket with my name on it! So when I do go in and the pharmacist looks troubled I just point at my little basket 😉💃 small independent pharmacists all the way, as they treat you like human beings are often family run and are so knowledgeable.

I did a quick check Badham's are only quite local to me, but I'm sure you have someone similar in your area?

spinela7 profile image
spinela7 in reply to Eeyore100

Hi, the lady I spoke to was the Pharmacist no trouble putting the packets on the shelf for me.

Did your GP send in a scrip for a year or did the pharmacist put away packets for you knowing a scrip would come in. You have a good Pharmacy they are caring.

My Pharmacy sometimes have problems getting Accord in so maybe a wise move would be to use this Independent Pharmacy that has kindly put aside packets of Aristo for me.I don’t want issues with Aristo not arriving.I like the set up you have.

Thank you for getting in touch with me I so appreciate the communication.

Spinela

Eeyore100 profile image
Eeyore100 in reply to spinela7

Script was initially for 1 box at a time which I have insisted they upped to 2 as I now have to travel 5 miles to collect rather than walk the 1/4 mile to the surgery/dispensary. I struck gold with this assistant she said she'd find out the procedure and give me a call back... 5 minutes later, all sorted "I've ordered in a years worth, they'll be here tomorrow drop in whenever suit you, they are in a basket with your name on!"

The surgery still don't give me a correctly filled out script even though I forwarded a rather brilliant snipit from  helvella or maybe  SlowDragon instructing the correct way to fill out a script to receive branded goods, bit like SD's thumbs up/down but more damning 🙂.... wish I could find it, it gave me such joy to pass this on having been told it absolutely wasn't possible and they'd never heard of such a demand from pharmacists until recently!

Anyway, super happy you are sorted 🤗

p.s. I did take her a bunch of flowers next visit... she gave me a flu jab 😏 she was good at that too!

helvella profile image
helvellaAdministrator in reply to Eeyore100

My Vade Mecum document has that information on how to write prescriptions:

helvella - Vade Mecum for Thyroid

The term vade mecum means:

1. A referential book such as a handbook or manual.

2. A useful object, constantly carried on one’s person.

Please don't get put off by the number of pages!

Nor by the fact it is targeted at people interested in thyroid issues. Much of its contents could be of use to many involved in health issues. Things like abbreviations, lists, general reference information, an Appendix of links to many useful websites.

And do keep up to date. I edit it frequently- sometimes trivially, sometimes extensively. If your copy is more than a few weeks old, please download it again. (You must download - not just view in a browser- for the Table of Contents to work.)

In particular, it is not intended that you sit and read the document. Just that you download it and know you can look things up.

If there is anything you'd like me to add, let me know.

From Dropbox:

dropbox.com/s/vp5ct1cwc03bl...

From Google Drive:

drive.google.com/file/d/1P9...

Eeyore100 profile image
Eeyore100 in reply to helvella

Darn it.... you are going to make me find it aren't you 😕 alright here I go... see you in a couple of hours 🙄

helvella profile image
helvellaAdministrator in reply to Eeyore100

It does have a table of contents!

Depending on how you are viewing it, you can display the table of contents down the side. Makes it easy to jump around.

It is around page 153: Prescribing Levothyroxine by Brand

Or you can search within it!

Eeyore100 profile image
Eeyore100 in reply to helvella

Not there... it was a lovely snippy bit about the incompetence of GP's when filling out prescriptions incorrectly and giving them the guidance they needed to achieve the desired results

Honestly I have fully interrogated "Fred"

helvella profile image
helvellaAdministrator in reply to Eeyore100

Sorry - I misled you there.

If you find it here, please let me know! I'll add it if appropriate.

Eeyore100 profile image
Eeyore100 in reply to helvella

Think it was one in my early days that I saved only to get wiped when some creep put some weird comments up and my account got wiped by accident 😕

Sent to the surgery via instant message so no copy, had hoped they would have added it to my file 🤣

Eeyore100 profile image
Eeyore100 in reply to helvella

Found!!

helvella profile imagehelvellaAdministrator

3 months ago

There is a bit in my Vade Mecum about writing prescriptions for specific brands/makes.

Yes, the manufacturer/brand must be on the first line in order for the pharmacy to claim whatever extra cost they incur. (Reading between the lines, this is because the system they use only looks at that first line and treats the rest pretty much as comments!)

The prescriber needs to go on a course in order to learn how to use their system for writing prescriptions! It could well be that they do not have this already set up as an option. (I assume they only see the available dosages without any manufacturer/brand.) But they (or the practice manager, or their technical support people) must be able to add products!

😏

Eeyore100 profile image
Eeyore100 in reply to helvella

Not really "Fred" worthy..... Perhaps a little off shoot manual on Health care personnel training and management? 🙃

Or how about "Yet another awkward conversation with your surgery"

Eeyore100 profile image
Eeyore100 in reply to helvella

That isn't the issue... I get sucked into all the other interesting bits... happens every time 😆

I think it is actually a sneaky wellness test...if you can get in and out without being snared you must be optimised 👏

spinela7 profile image
spinela7 in reply to Eeyore100

Well I wonder what reaction I will get when explaining the predicament I was left ( very nicely of course) and would like a script sent to my NEW independent pharmacy for a year up front, we shall see on Monday.

I am very thankful for your help

SlowDragon profile image
SlowDragonAdministrator in reply to spinela7

My GP sends my prescriptions electronically, a year’s worth of prescriptions at a time …..to small independent (incredibly helpful) pharmacy 10 miles away from my house

I just pop in every couple of months and collect my levothyroxine (always Mercury Pharma) and T3 (always Morningside)

Before I found this pharmacy……every prescription would involve trawling around 6-12 pharmacies to get required brand

spinela7 profile image
spinela7 in reply to SlowDragon

Hi SlowDragon I will be putting my request to the Surgery on Monday by letter brilliant no worries all done and sorted.

Thank you

helvella profile image
helvellaAdministrator in reply to spinela7

Show the pharmacist the matrix from my medicines document?

Or show them the whole document if they want!

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. It is sectioned by UK - rest of the world, and by T4, T3, desiccated thyroid, etc.

And do keep up to date. I edit it frequently - sometimes trivially, sometimes extensively. If your copy is more than a few weeks old, please download it again. (You must download - not just view in a browser - for the Table of Contents to work.)

From Dropbox:

dropbox.com/s/wfhrlmb5983co...

From Google Drive:

drive.google.com/file/d/11z...

UK levothyroxine matrix
SlowDragon profile image
SlowDragonAdministrator

How prescription should be written for a specific brand levothyroxine

How prescription should be written for a specific brand levothyroxine
spinela7 profile image
spinela7 in reply to SlowDragon

Thank you will do. x

spinela7 profile image
spinela7 in reply to SlowDragon

Thank you will do. x

Eeyore100 profile image
Eeyore100 in reply to SlowDragon

I seem to remember the shirty pharmacist (who didn't supply it) telling me it had to say the brand name first to be sure you got it... presumably they don't read beyond Levo?!.... and to insure they could claim back any extra cost.... which there isn't with Aristo

SlowDragon profile image
SlowDragonAdministrator in reply to Eeyore100

I think how it works is pharmacy looks to buy the cheapest from wholesaler to maximise profits and the price paid by NHS across all brands is fixed

spinela7 profile image
spinela7 in reply to SlowDragon

Guess what SlowDragon I have 3 months supply put aside for me wow wow wow over the moon. I have to speak to the Surgery’s pharmacist first and he will send script to them. He had also assured me there was no other lactose free thyroxin to get.

I would have preferred to collect the prescription from him. I will elaborate on the fact that he can pass this on to other patients who are in my predicament.

It is funny SlowDragon but the lady pharmacist said we do stock it but haven’t had it for awhile but our stock of it came in today.xx talk soon

Eeyore100 profile image
Eeyore100 in reply to spinela7

Brilliant 🤸‍♀️💃🤗

spinela7 profile image
spinela7 in reply to SlowDragon

Yes, it comes down to profits and the patient comes way down the pecking order.

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