Thyroid cancer

[Margyc]

I have been forced back onto T4 because of the cost to the NHS and I need help so much. I had a total Thyroidectomy after having two tumours. I was on T3 at first and this was so much better. I feel totally I'll and just want my life back. I feel that everyone is just letting me go and I need help.

[Saggyuk]

Hi there, I am also really worried about this as rely on T3 also. You could possibly source your own but others here could give you more details on this as I have not yet been in that position. I was thinking about the possibility of trying NDT or similar worst case scenario - does anyone know if endos are still allowed to prescibe this on the NHS?

You may be interested in this post:

healthunlocked.com/thyroidu...

They are looking for people in your position.

I truly hope you find a way to resolve it

[shaws Administrator in reply to Saggyuk]

Some Endocrinologists prescribe NDT but am not sure if it is a private prescription or not.

We used to get NDT prescribed but they have slowly stopped doing so, just like T3. They have used rumours as regards NDT. Medications which made us feel recovered with relief of symptoms.

If you want to source your own T3 (and it really shouldn't be necessary) or NDT. You can put up a new post asking where to source them and answer to be sent by Private Message as we don't put them on the open forum - in accordance with our guidelines..

I'd also write to the Health Secretary and your MP to complain about not being denied an essetial life-giving hormone as you've no gland at all.

Also click on the above link and put your story on as it is ridiculous, I believe. I am on T3 only myself but have sourced my own. My GP did prescribe until company ran out of T3 altogether so I sourced my own then.

[Saggyuk in reply to shaws]

Thanks, really not sure if could afford to buy my own. I just looked up the classification for the drugs in my area and fortunately t3 is still showing as amber (initiated by specialist) although who knows how long but the only thing I can find re ndt is a listing for armour thyroid - is this the same stuff? - this says non-formulary and I'm not entirely sure what that means?

[Clutter in reply to Saggyuk]

Saggyuk,

Greek T3 is around £35 for 180 x 25mcg tablets and Tiromel around £21 for 100 x 25mcg tablets so they are affordable for most people particularly when 1/4 or 1/2 tablet is added to existing Levothyroxine dose.

NDT being 'non-formulary' means it is not in the British National Formulary ie it is not licensed for UK use so is rarely prescribed on the NHS.

[Saggyuk in reply to Clutter]

Oh really, that is cheap enough - I thought it was going to be a whole lot more for some reason - maybe I added it up wrong as seemed to be over £100? Thanks, makes me feel a lot less worried. I'm on T3 only but we have added 25mcg T4 as trial but I could still just about manage this cost if I reduce a few treats lol

Thanks a lot

[Saggyuk in reply to Clutter]

I've just put in for my prescription a little early as have a funny feeling there won't be much notice if they do withdraw, I might get some from greece etc in the meantime just in case as don't want to be caught short waiting for delivery. How long does it often take to arrive and if you could pm me a link as to where to buy the greek stuff, I would be grateful

[Clutter in reply to Saggyuk]

Saggyuk,

There is currently a shortage of Greek T3 which means people have been waiting weeks for delivery. There are other brands available.

[Margyc in reply to Clutter]

Hi how much T4 are you taking with the T3 as this would be helpful information if I can get my own T3. Also after two of my GPs were blaming the price for withdrawing the medication, the specialists told me that the cancer would come back. Is this true? Also I feel quality of life is more important.

[Clutter in reply to Margyc]

Margyc,

The cancer won't recur simply because you stop taking T3 or switch to T4. How much T3 were you taking before it was withdrawn?

I'm taking 75mcg T4 + 30mcg T3 but I am over suppressed with TSH <0.01 although FT4 and FT3 are within range.

[Margyc in reply to Clutter]

I was taking 20mcg three times a day before it was withdrawn , I stockpiled some 2years ago and so I want to take them to try to feel well again, and prove to the medical staff that they work for me. If I take my usual 100mcg Levothyroxine and 20 mcg Liothyronine three times a day, that won't harm me will it. Then if I feel improvement I can argue the case.

The GP is more for me getting back to work after 4years, but I need to feel well enough first.

Thanks Margaret

[Clutter in reply to Margyc]

Margyc,

You will be massively over dosed if you take 60mcg T3 in addition to 100mcg Levothyroxine. 60mcg T3 is equivalent to 180mcg Levothyroxine.

Do you have thyroid results and ranges to show how you are doing on 100mcg Levothyroxine?

If you are optimally dosed on 100mcg Levothyroxine it is usual to reduce Levothyroxine by 25mcg when adding 10mcg T3.

[Margyc in reply to Clutter]

Hi Clutter thanks for that. I was taking 100 one day then 125 the next. If I take 100 T4 and half the 20mcg 3times a day, to start will that be ok? I'll go and have bloods done and ask for a copy of the results. It's a nightmare but I have to do something I can't just accept this way of life.

[Clutter in reply to Margyc]

Margyc,

No, it is still too much. That is effectively doubling your dose.

How long have you been taking 100/125mcg Levothyroxine?

[Margyc in reply to Clutter]

Hi I've been taking that dose for more than 4 years,

[Clutter in reply to Margyc]

MargyC,

Perhaps you could look at your old results and see whether FT3 was tested. If it was low you will benefit from adding some T3 to Levothyroxine. Without seeing any results I wouldn't recommend adding any more than 10mcg T3 to your existing dose.

[Margyc in reply to Clutter]

So if I take 1x 100 Levothyroxine and 1 X 10mcg T3 do you think this will be ok.

[Clutter in reply to Margyc]

Margyc,

I don't think it will hurt to take that until you can find your last thyroid results and post them in a new question.

You would be dead if you had no T3 present in your system. The Levothyroxine T4 converts to T3. Perhaps they meant you had no Liothyronine medicine in your system as you had stopped taking it.

[Margyc in reply to Clutter]

Ok I'll do that thanks for your advice. Yeh that must be what they mean. It's very complicated and the GPs don't really want to talk about anything but Levothyroxine. They told me they wouldn't advise on T3 or even comment, and the Cancer Dr. Won't get involved as they wont pay for the meds either 😠 I know I get confused but it's because I'm struggling.

[Margyc in reply to Clutter]

Last year I remember they said there was no T3present in my system, as I was told not to take it. Surely the human body needs it, and I certainly feel better with it.

[shaws Administrator in reply to Saggyuk]

NDT short for Natural Thyroid Hormones were the very first to save the lives of hypothyroid people.

First introduced in 1892 and is made from the glands of pigs or cows. People then were prescribed this up until the 90's although since the 60's levothyroxine was introduced and touted as the 'perfect' replacements.

It might have been for a lot of people but not for everyone but the authorities then told doctors/endos to stop prescribing. It contains all of the hormones a healthy gland would have produced T3, T4, T3, T2, T1 and calciton.

Due to it being a 'grandfathered' product it didn't need a licence but many do get well with it.

Unfortunately the British Thyroid Association has made False Statements about this product with the result that the doctors now wont prescribe

thyroidscience.com/Criticis...

[Saggyuk in reply to shaws]

THanks for the info, I will read up on it

[Margyc in reply to shaws]

Where do I get this. It sounds logic as your body makes all these hormones for a reason, so missing some out can't be good for the body.

Thanks Margaret

[shaws Administrator in reply to Saggyuk]

My GP prescribed even if it is non-formularly. Put your story to this person who is very interested in T3 being withdrawn.

healthunlocked.com/thyroidu...

[Saggyuk in reply to shaws]

I already have

[shaws Administrator in reply to Saggyuk]

That's great.

[Shelley1954]

Surely if you have no thyroid then you will be lower on T3, isnt the thyroid a participant in the conversion? If this is the case , how can they stop your meds?

[Margyc in reply to Shelley1954]

I don't know but I was like a crazy person when they were all arguing about the cost and this went on between the GP and the hospital, it was all they talked about until the hospital came up with the excuse that the cancer will return if I stay on Liothyronine.

[jgelliss]

Margyc , Sympathy and blessing to you . Having your thyroids removed is not easy . However there is great substitutes for your thyroids except now it comes in a bottle . Our thyroids made both T3/T4 . So now you have to duplicate the same . Dosing with T4 which our brain hair nails skin needs and adding some T3 or NDT to the mix . Please check out your adrenals also if they need support . And take nutrients like Selenium , Vit ."D" , B-complex , B-12 , Vit."C" , Iron but please test first if you need it . Full Iron panel with ferritin . Please refrain from taking Iron and calcium at least four hours apart from dosing with thyroid meds. And please split any T3 2x or 3x/day .

Wishing you success as you proceed .

[Margyc in reply to jgelliss]

Hi thank you for the advice.

[Margyc in reply to jgelliss]

Hi it's been a while since I had a blood test as had another sinus and, throat and chest infection. But when I asked the GP for a blood test she told me she wouldn't do the bloods or talk about T3 as I'm self medicating. So I've come off T3 until I get a blood test and then , I'll go back on it after the results. Hopefully you can help me after that as I keep falling asleep and I feel extremely dizzy and unwell.

Thanks Margaret

[jgelliss in reply to Margyc]

Margyc I hope your health improved and continues to improve . Sinus and colds could be a sign of hypo symptoms that's physical . Thyroids meds have tremendous influence with our immune system energy ,aches and pain etc. Our adrenals work more with emotional symptoms . Thyroids when not enough doses come into our system adrenals pick up the slack . And it could wear us down .When we get enough thyroid meds our adrenals can relax .My advice to you is please check that your getting enough thyroid meds since your thyroids are from a bottle so to speak . And you need to replace because of your TT . Also I would check for adrenal insufficiency/fatigue because your adrenals picked up the slack for a while and you might need to support it .

I would very much recommend that you journal your symptoms as you make changes . And make changes slowly to give your body to acclimate to the new changes . Journal for instance blood pressure , pulse , check for dry cracked heels and elbows , basal temperature ,constipation , etc.

Wishing you Success as you journey .

[Margyc in reply to jgelliss]

Hi thanks for your reply.

I do have very high blood pressure and chronic fatigue . I will take your advice thanks and document everything from now.

Regards Margaret