Armour here today - but gone tomorrow!! Consultants have taken it from me. What now?

[mainam]

Help please....

Please see my post from yesterday - I had recently had good blood results, infact the best in years, after I was put on Armour over eighteen months ago by an Endo at my local hospital.

The difference it has made to me has been incredible in every way and I just can't envisage going back to feeling so rotten on Levo. The thought terrifies me.

BUT at my appointment with a new Endocrinologist today ( the previous Endo has left), I was told that the three consultants in the department have had a meeting and decided that they will no longer allow me, nor the other four patients taking Armour, to continue with it.

I am totally devastated.

I feel 200% better on Armour in a multitude of ways and my bloods prove why.

As its unlicensed they just won't accept responsibility. The ICB haven't said I can't have it.

The Endo has suggested I either buy it privately or they will try me on Levo combined with Liothyronine.

The Endo agreed my bloods were good - in fact better than they'd ever been!

But she said they don't know what's in Armour and therefore will not prescribe it - but says she would support me if I got it privately from somewhere.

Now I'm retired buying privately is rather more difficult.

What would changing to Levo with Liothyronine be like?

Would it be like taking Armour?

Has anyone here ever had to do this?

(I live in SE Essex - and if any of the others who have had this bad news are reading this - please pm me.)

I'm so gutted.

[GlowCoach Administrator]

I'm really sorry you have had this experience. How did you leave it with the Endo?

I would recommend accepting the Levo + T3 option if you have never tried that. Its the T3 thats missing for many on Levo alone if they have poor conversion.

Are you keeping on top of your vitamin levels?

What supplements are you taking?

[mainam in reply to GlowCoach]

The Endo told me to have think about what I wanted to do and let her know.

I do have poor conversion. I take an iron supplement and my results from GP are;

folate 5 (2.5-999) ? B12 13.8% vitD 22% Ferritin 28.8%

Possibly not great? Although no one has voiced any medical opinion

[GlowCoach Administrator in reply to mainam]

Your vitamins are terrible and you won’t be getting the best out of any thyroid hormone.

Can you give me the numbers rather than percentages please?

Are you vegan or vegetarian?

[mainam in reply to GlowCoach]

Sorry Jaydee - I missed your reply. Can you tell me your opinion on my numbers. I'm not vegan nor veggie. Many thanks.

Folate 5ug/L (2.5-9999) , B12 228nmol/L (1220-900)

VitD 72 mol/L (950-150) Ferritin 97 ug/L (15-300)

[GlowCoach Administrator in reply to mainam]

Your B12 is terrible. I think you made a mistake with the reference range and it should be 220-900, so its only 8 points above the bottom of the range and the range cut off is too low.

B12 - do you have symptoms of B12 deficiency? The reference range for B12 is very wide and cut off point too low. theb12society.com/signs-and...

If you do then you should discuss this with your doctor for further tests for Pernicious Anaemia.

If not, then start with a methyl B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.

cytoplan.co.uk/vitamin-b12-...

amazon.co.uk/Better-You-Boo...

This B complex has all the right vitamins at a not unreasonable cost for 90 days supply(also contains folate). Once B12 is good you can stop the stand alone B12 and just continue with the B complex.

amazon.co.uk/Liposomal-Soft...

The B complex contains folate which will help your low level.

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...

Your ferritin is good.

[mainam in reply to GlowCoach]

Thank you so much. i am very, very grateful for this info.

[pennyannie]

Hey there Mainam :

You must be so upset and it's so illogical but I'm not surprised.

Has she honoured your Armour prescription for another couple of months while you think about this corner you hve been backed into ?

With a private prescription - hopefully this endo will not charge you for writing one -

you can buy from several pharmacies that are listed on the Thyroid UK website - thyroiduk.org

I believe you need to shop around for the best price :

Sent you a further PM :

[pennyannie in reply to pennyannie]

What dose of Novothyral were you on 3 years ago :

Novothyral is a combination of T3 - Liothyronine + T4 - Levothyroxine ?

Did it work for you?

[mainam in reply to pennyannie]

I knew it helped my T3 but didn't really know what it was.

The Armour seems even better. But I took novathyral only twice a week as I tried it seven days but had palpitations.

[pennyannie in reply to mainam]

OK - well this medication needs to be taken every day - and could well be why you experienced the palpitations :

It is just another form of thyroid hormone replacement which, I understand, contains a T3/T4 combo - Liothyronine + Levothyroxine - at around a 1/4 or 1/5 ratio T3/T4 :

I think NDT the most complete treatment option which is a 1/4.22 ratio T3/T4 :

Just my experience and in all honesty I probably didn't trial T3 + T4 long enough :

[mainam in reply to pennyannie]

She won't write me a prescription. Says to find someone who will. More money.....

[pennyannie in reply to mainam]

Who is this - your NHS doctor ?

Well, yes, it's virtually impossible to get NDT on the NHS - though meant to be available on a named patient only basis - prescriptions are being written but likely not New Prescriptions.

You might find it easier getting a NHS prescription for T3 - Liothyronine - which you could take alongside your T4 - Levothyroxine - but again your primary care doctor can't sanction this herself and you need to be referred to an NHS endocrinologist who will assess your need for anything other than T4 monotherapy.

You next option would be to will be go private but make sure , in advance, by checking out of here, that whoever you go to is sympathetic and supportive to your needs.

The last option is to Do I for Yourself - which is what most forum members end up doing when push comes to shove.

Thyroid UK - the charity who support this forum - thyroiduk.org - hold a patient to patient list of specialists and thyroid friendly endos - both NHS and private - maybe email Admin for a copy of the list and remember face to face are sometimes not necessary and video consults are available so distance doesn't have to be a problem.

[jimh111]

Before accepting the private prescription I would write a very polite letter to the hospital PALS explaining the effect it has on you. Normally I would suggest making a formal complaint but this endo. seems helpful. "As its unlicensed they just won't accept responsibility" - if they give a private prescription they are accepting responsibility! Also, the fact they are willing to prescribe means they do feel it is appropriate treatment. I would consider saying to the hospital that all the evidence points to this being a cost cutting exercise at your expense. You could also contact your MP (in person not letter) and ask for their help. Let the hospital know you are contacting them.

[mainam in reply to jimh111]

She is quite helpful and she seemed to recognise what I was saying but didn't budge.

I want to keep a reasonable relationship with her but so much want the Armour too.

I know nothing about Lio stuff.

[Alanna012]

Sorry to hear this.

Levo + Lio can be brilliant for some people, so don't be afraid to try it.

But like as with everything else, some people say they don't do as well on Levo + Lio as on NDT.

Personally? My advice is if they are willing to give you lio, try it.

If it doesn't work out, then you will have to self-source

However I am not sure if accepting it would compromise any attempts to get Armour reinstated.

[Litatamon]

This is exactly what a pharmacist said to me the other day about NDT, after my explanation why people source it from abroad -

It seems to me that too many doctors are prioritizing their own professional safety these days over the well-being & health of their patients.

------

I am so very sorry this has happened to you. I would be writing a letter that will go into your file, whether that makes zero difference or not on getting NDT. It can be written fairly, without impacting your relationship with your doctor. If it does, the endocrinologist is not worth it anyway.

[arTistapple]

It’s hard to get one’s head around this total insanity from the medical establishment. It’s about everything except the patient. It’s about fear. It’s about rules. It’s about pig headedness. It’s about money. First do no harm. Just the unnecessary anxiety of the prospective change is harming; even if it turns out the patient is fine on the new regime. However this is inconsequential to people who should be supportive.

[grumpyold]

Not surprised you are gutted and angry.

If it were me, I would try and buy NDT privately, as they have offered to support you. I self sourced and self funded Armour for a year (buying from abroad) and felt the best I have felt, since hypothyroidism became a problem.

Being back on a combination of levo and T3, has returned me to the "twilight zone".

To be able to go back onto Armour, I'd sell them a kidney if asked.😂😂😩

[765nottyash]

Excuses and even more excuses from the docs, I really feel your pain, unfortunately I have been through pretty much the same.It's nothing like Amour I took levo for 18 months and felt awful. I looked into going private but thd script alone was 1.5 times what I could buy on line.

I am retired and finding money tight but I would never go back to levo, the difference is like night and day.

[RedApple]

mainam 'she said they don't know what's in Armour and therefore will not prescribe it'

I can't make sense of that. Do you not have a PIL listing the ingredients with your current bottle of Armour?

[helvella in reply to RedApple]

The PIL is readily available, online, from the manufacturer's own website:

rxabbvie.com/pdf/armour_thy...

And much more detailed information on the FDA's own website:

dailymed.nlm.nih.gov/dailym...

You need to click on VIEW ALL SECTIONS or the orange "plus in a circle" icon to see it all.

That is, the official information about dosages, potencies, ingredients, actually more details than accessible UK medicine information in many areas.

Screenshot of a the expand button on FDA website

[mainam in reply to RedApple]

Yes - there is a list and as it came via the hospital pharmacy it must be accurate. But the Endo wouldn't budge.

[RedApple in reply to mainam]

So sorry this is happening to you. As jimh111 has said, this is obviously a cost cutting exercise and has zero to do with the quality of the medication or the patient QOL.

[mainam in reply to RedApple]

Yes I do. It comes from the hospital pharmacy - so they can get it ok.

[Locky1971]

Hi,I've been on various forms on NDT and did really well on them.

However my hubby has been off work for over a year with long covid so I could no longer afford the private prescription and private endo.

My new nhs endo put me on T4 /T3 combo and to be honest I'm doing really well on it.

I've recently been a bit stressed so not feeling as good as I was but probably due to forgetting my pm T3. I'm normally on 100MG T4 and 10mg T3 twice a day. It's quite a high dose but it's working.

I have also bought my NDT from abroad in the past so it can be done.

But personally I'd give the combo a try first.

It is so frustrating when they change your meds. You want to scream it's ly body I'll decide what I put in it. Not you.

Good luck.

[mainam in reply to Locky1971]

Is that levo/lio combo?

I feel it is my body and it needs what's best for it. Ive worked all my life so paid in to the NHS. A year ago due to a three year waiting list I eventually paid privately to have a hip replacement - it gave me my mobility back. So I feel Ive not exactly taken a great deal out of the NHS system - but my savings reduced dramatically and so paying for Armour is not really within my means..

[arTistapple in reply to mainam]

I know that feeling. I like to think I have made diligent use of the NHS. It’s they who have wasted my time, their time, and ‘our’ resources etc etc. It’s like everything else government run, it’s just not efficient enough. In our particular case GPs and endos are totally unable to think for themselves in consult with the patient. Really what are they being trained so expensively and so highly for, if ticking a box is all that is required? Normally I am not in favour of ‘dumbing down’ but this second tier, less highly trained level of ‘doctor’ being proposed, is becoming more attractive to me. In hypothyroidism either straight to it if or via surgery, if the patient was listened to properly it just might work better - if only ‘proper’ doctors are not left to continue to make the ‘guidelines’ without patient participation and according to their own masochistic tendencies.

[Locky1971 in reply to mainam]

Yes it is a levothyroxine /liothyronine combo.I know where you're coming from. It is expensive and Armour is dearer than the other natural dessicated thyroid medications. That's partly why I had to stop. Hubby's wages are down by half and bills so expensive so unfortunately our health has to suffer. It sucks. If these Endo's were properly educated we wouldn't have to make these choices. Mine told me the TSH is the best to dose me as it picks up the slightest change in medication.

I read out every blood test from 2018 onwards. My TSH rarely changes from 0.01. No matter what amount of meds I'm on. She understands that now and has put on my notes 'dose by how patient feels not TSH'. Next blood test GP was trying to reduce meds as TSH was 0.01. Lucky it's in my notes so I ignored him.

It's just a continuous fight to feel well. Hampered by the people who are supposed to support us. 😢

[RedApple in reply to Locky1971]

Locky1971 'I have also bought my NDT from abroad in the past so it can be done.'

In case anyone else reading here is considering sourcing their own medication, please read this post first healthunlocked.com/thyroidu...

[KarmaMaya]

Hi, I feel frustrated for you! If you finally feel good on Armour I would NOT try something else. It can take years to get balanced again. It's strange because my Endo took me off the T4/T3 compounded presecription I had of levothyroxine and liothironine because of consistency concerns. Now I am trying Armour. I feel like if you are good on Armour, it is more consistent than a compound. I tried to take Tirosint and then dose myself multiple times a day with Cytomel T3 and that just caused anxiety and palipitations. Somehow I do better with the T3 in the Armour. I think It is worth extra money to stay healthy and happy. I would find another doctor first that would prescribe you Armour if that is possible! If not, I would try to find the best deal possible for your Armour. I pay retail price for it. It's my happiness. It's worth it. You are the best person to make this decision for yourself.