Left to further damage

I have done research , I have been asking questions, I have seen a doctor from 'the list'. All of these to make myself to try any of the thyroid medication. I have tried levothyroxine, NDT reviews are mixed. I wasn't reassured by a doctor. I was left to try things for myself. I already suffer a lot, that includes my stomach and on psychological level I am not able to force myself to swallow armour or other NDT, I can't take levothyroxine either( tried and have stomach pain)

I am scared that whatever I take I will make myself suffer more. My gastrointestinal system is so damaged by food poisoning with campylobacter and I have developed so many allergies that even a tiny trace of an allergen can cause damage to my stomach and intestines. I don't want to risk more pain and the chances of full recovery are not great so I am really resigning from trying and I will just sit and wait till I die I suppose. It's sad but I have expierienced the worst from NHS and private medical 'professionals' that I am just giving up. I don't trust doctors and pharmaceutical companies and as sad as it is I can't go any further. I have never felt so hopeless in my life and I have been through a lot.

I wish everyone all the best.

Exxon

18 Replies

oldestnewest
  • Hi I have many serious abdomen conditions, and also had campylobactor, hepatitis ( auto immune) etc etc, It may be that you have an enzyme problem with your pancreas,it effects absorption.,,not drink related. it is a simple ,specific stool test.,Faecal Elastase. Then if positive enzymes about half an hour before food. i have these on a script but i am told that you can buy the same thing from Holland and Barratt. As they are enzymes and not drugs they are safe.The only symptoms are digestive and perhaps weight loss.As far as thyroid treatment is concerned, if you do need it ,it is more harmful to not take it (, other parts of the body,) than to take it.if needed. All my best doctors always say if problems with drugs ( as I have) to start with tiny amounts every other day and take weeks to build up to the script amount. of course, cardiac and antibiotics and other life saving drugs are different. certainly with thyroid treatment and many other things especially Statins, this makes a huge difference.

    I hope this gives you some ideas.

    Jackie

  • Jackie gives good advice. I'm sorry you are having such a rough time.

    If you were to take just a tiny crumb of Armour and it contained gluten or other allergen, would it cause you major problems with that tiny amount? How long would the effects last? I am wondering if just a tiny crumb would highlight an allergen without causing major problems, or at least give you an idea if it was safe. Armour is on the list of gluten free medications, however I can understand your concern given what you have been through in the past.

    I wish I could help but I don't know what to suggest other than perhaps purified levothyroxine :(

    I really hope you do find an answer.

    Carolyn x

  • Edysia, you don't have to swallow with all thyroid meds, some you can take sublingually. I take my NDT (Thiroyd) and T3 sublingually and it works - if not, I'd be dead as my thyroid has been destroyed by Hashi's!

    Hugs, Grey

  • Hi Edysia,

    please don't give up, you are the ONLY ONE who can help yourself at the end of the day.

    If you give up then there really is no hope......the doctors/NHS/etc are only 'accessories'.

    If the NDT is giving you allergy problems there is one brand of NDT many many americans take and swear by it as it has NO FILLERS whatsoever apart from a liquid mineral. All these people have problems like you, they react to fillers and they have no problems with this NDT.

    It is called NP Thyroid and is made by Acella Pharmaceuticals.

    I am not sure it can be obtained in the UK, however I have emailed Acella Pharmaceuticals to find out from them if they do have any UK stockists who order it from then and/or if one can buy direct from them with a prescription.

    I will let you know as soon as I receive an answer.

    Also, there are many other forums, I am in a couple of them on facebook where there is LOADS of people with your problems (shame it is so common :( ) and they have a LOT of knowledge on how to give tips/hints to each other and many are getting better, I can private message you the details of a couple if you wish.

    big hugs to you xxx

  • According to the info on the main Thyroid UK website, NP Thyroid by Acella has the following ingredients:

    ----

    Active Ingredients:

    38mcg levothyroxine (T4) and 9mcg liothyronine (T3) per one grain (60mg)

    Other Ingredients:

    Calcium Stearate, Dextrose Monohydrate, Maltodextrin, Mineral oil

    -------

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

    I don't know for sure, but I can't see any reason why a pharamcy with an account with the relevant importer would not be able to obtain this version of desiccated thyroid, providing it's on prescription.

    Importers are listed at the bottom of this page

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

  • HI RA, thanks for that.

    I called Pharmarama and they haven't even heard of NP Thyroid by Acella :D

    as Pharmarama are quite 'big' I thought it'd be quicker to ask Acella who in the UK has imported it in the past, that way I'll go straight to that importer rather than phoning round :)

    Many people do well on it as it doesn't have the cellulose/corn starch etc that other NDTs have x

  • That makes sense to contact Acella directly! Hope they respond. I shall be interested to know the outcome :)

  • Just wondering whether you've had any response from Acella yet?

  • Dear Edysia

    Very sorry to hear that you are still unwell, thankfully someone has

    Recommended sub lingual treatment? If I remember correctly you

    are a nurse? You need to go back to your Gp for further advice and

    Support. You are not dying And who has told you you have so many

    Food allergies From campylobacter, true food allergies are not very

    Common. Sorry to be blunt but you need to get yourself together

    Go back to your Gp armed with the good advice left above.

    Angie

  • Nobody told me about food allergies Angie. I just get very sick to when I eat certain food and I get better when I eliminate it( e.g. Gluten) Long period of trial.

  • Hi Edysia,

    I'm so sorry that you feel so awful. The advice you have received about taking thyroid meds sublingually is very important as you will not be absorbing your meds properly if your gut is not functioning properly Low thyroid function causes depression which makes you feel even worse so it is vitally important to get some thyroid meds into your system. It will take time to sort out the correct dosage, but some is better than nothing.

    I have been ill for nearly 40 years and have found that there seem to be improvements and then regression with my health. I have auto immune and gut problems etc and have found that starch (any) as well as gluten causes problems which I get around by taking tablets sublingually.

    The future can look bleak when you feel like this but things can and will improve. This site is very helpful and supportive but when you feel so low it's hard to find the energy/desire sometimes to do what is suggested. Take small steps, don't think too far ahead, know that you are not on your own, people out there do care. I found the emotional freedom technique very helpful. If you try Brad Yates on Youtube, there are some wonderful free videos that you can try, they really do seem to help.

    Really hope that you find this helpfu.

    Big hugs to you,

    Lyndene xxx

  • Hi Edysia. Just to say as I said a while back I would suggest you email Dr S all the details of the medication/supplements etc you are taking and ask him exactly what he thinks you should be taking.

    I sent you the email address you asked for yesterday to contact him and he will get back to you although it does take a while. The lady at his practice will almost certainly reply quickly (she has even got back to me on a Sunday and helped me sort something important) and as I said you can arrange with her a specific time to ring him and talk things over.

    Edysia getting medication right can be a long process and sometimes one feels worse before better. I myself felt great last week and have regressed a little this week. Probably I need to increase. I take NDT and it has taken 9 mths to get this far and I have/am improving. I was ill for 25yrs so it's going to take a while for my body to sort itself out. I had a quicker positive reaction with Levothyroxine but it didn't solve all the problems. Other people try both these meds and maybe find they need something else. Even Dr S told me it would take at least 18mths to get things right so not to expect a quick fix. So far I'm 14mths along that road.

    Like you I had irritable bowel and stomach problems. I was taking all sorts, but found that I can't mix NDT with anything else. That's just me, but the NDT for me is slowly resolving the stomach and bowel problems I had.

    I felt very alone like you and desperate at times. I decided I had to trust someone and the only person really was Dr S. and getting a referral had been really hard as all GPs I'd seen in three practices refused to help. Why not talk to him again. Email as we discussed and arrange to talk on the phone. If really necessary go and see him, although I appreciate only too well that this is expensive. Follow his advice even if you are not sure (if I recall he has started you on low dose NDT)including his advice re other meds and supplements and accept it will take time but its a positive step in the right direction. You have to trust someone and since you have managed to see Dr S and get medication prescribed I would start with what he has suggested, ask his advice re the other supplements etc and go from there. What have you got to lose.

    Keep talking to Dr S Edysia. It's not always easy to contact him but if you email and arrange a time to speak on the phone I know from experience he will try and help.

    X

  • Hi Edsyia. As the others progress on thyroid seems often to be a test or a challenge that we ownership of ourselves and our bodies - so don't give up. It's often the life lesson we've been set to learn.

    It eventually backs up to the realisation that we create our own experience, and that it's ultimately about learning to use mind creatively.

    This runs counter to perceived common sense, but adds another dimension to healing which from personal experience can have remarkable effects.

    The old body isn't just a machine, and the situations we encounter are not just fate determined semi random happenings - we decide what we are going to experience, how we are going feel and what our health will be to quite a degree. (there are events clearly that we don't control from the conscious level/are not reversible)

    What we imagine might happen, and how we feel about it blows through in a very real way into what happens physically in the body - it in the first instance it effects the release of hormones, how the body processes nutrients, uses energy, responds to foodstuffs and so on.

    It's not about thinking per se. The game is to think up how you would like to feel. Then very clearly picture yourself in this situation - how you would live, what you would do, how you would feel, what you eat, what you might take. Creation of the appropriate emotion is important too - gratefulness, confidence, a sense of ease and so on.

    The catch is not to get sucked into dwelling on illness or other possible negative events - even in the context of saying that this is not what you want. (thought is a very superficial level of mind) What matters is the vision you pour energy into, and if the vision is negative that's what you will tend to create.

    Put another way - mind tends to create whatever is envisions.

    It's not the easiest route to make happen for everybody, in that it runs counter to our conditioning, and we tend not to have enough mental stability to hold the required vision. Fear gets in the way - so it can take time to get there.

    Meditation is a very good means of training ourselves into the ability to hold the required mind state, it at least trains us to rest easy with a fairly still mind....

    ian

  • Like zizi I too have taken ages to reach a reaonable dose of Armour (11months) and had to start at a very small dose with many set backs and times when I had to hold a small increase 6-8 weeks before I could increase again without horrible symptoms. I am not there yet but Dr S also told me it would take a very long time to recover. I have tried taking all sorts of supplements and find they all give me gastro-intestinal symptoms so now only take the B12 Dr S recommended and try to get all others from my diet and have found my gut is much better. I also found chewing my Armour stops the nausea I used to get when taking it. I too had got to the stage where I wondered what the point was but am at last seeing improvements when I thought I never would - I recently went to my neice's wedding where a year ago I was bedbound! Please don't give up.

  • That was an amazing life lesson, vajra. I fully endorse what you say. I have meditated off and on for fifty years and I know it helps. Certainly this disease can be a great challenge for some and it is inspiring to hear how some people cope sometimes for so long and against unimaginable odds. Likewise, Edysia, you have obviously overcome many challenges and you will continue to do so, - I've always found that having little attainable goals day to day is so much easier than all or nothing. All the very best of luck.

  • Edysia, I can't better the advices given on your post but just want to tell you that I have felt similar to you.

    Had prepared my demise as the loss of income and understanding of all around me caused me to feel worthless and hopeless but Hoorah for Thyroid UK and then this Health Unlocked website.

    The internet has been a force for so much good as well as dross.

    I experienced my Mother suffer needlessly, not through lack of care, through lack of knowledge and changes in the way thyroid function was diagnosed and treated particularly in the elderly.

    Please believe you will have a better quality of life and that folk on here wish and advocate that for you. wyn

  • Edysia, you sound seriously depressed. No wonder with what you have gone through, but there is help for thyroid disasters - people on here can help and advise. the problem is when you are so depressed all the advice in the world won't reach you.

    Have you tried counselling? It won't solve problems - and I am NOT saying things are in your head, but your thinking and your exhaustion are stopping you from perservering. It's only natural to feel so low, exhausted and defeated; a good counsellor will just walk with you through this nightmare and may somehow just manage to shine a light in the darkness to help you find your next step. At my lowest times - and there have been some very serious ones, I have felt just enough understanding, compassion and support to lift my head again and try. I've even phoned Samaritans in the middle of sleepless nights more than once.

    when your thinking is so depressed it is very hard to make your thoughts become positive. In fact, it is often impossibel - just to even try to think positively - and when we can't we just blame ourselves and the whole cycle gets worse.

    I hope you can see that I mean only well and am not trying to negate or diminish your suffering. there is so much good will towards you from people who have been to the end of their tether. But sometimes you need a person who is just there for you, to listen and to advocate.

    My thoughts go to you.

  • I do think that nobodysdriving gives the most sensible advice - yes, it is down to you. Plenty of us have been failed by the NHS and we're angry that the system that's supposed to be a health service is anything but.

    You really need to take control of your situation, yes of course it will be hard but you just have to keep going.

    Would there be any point in seeing an NHS dietician? Might be worth asking on here for a recommendation.

    There's some very knowledgeable and caring people on here so do report back on what you decide to do. Support is always here.

    With best wishes.

You may also like...