Is there really no hope for me?: Hello everyone... - Thyroid UK

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Is there really no hope for me?

Kitten-whiskers profile image
87 Replies

Hello everyone,

The nutritionist that I saw last week, seems to think their is no hope of me ever getting better.

I am so upset, I am crying while I type this. I am trying not to believe that but deep down I feel he maybe right.

I don't know what to do, or how to cope anymore, My life seems so pointless, and I feel I am nothing more than a burdern. I have reached rock bottom now, I got my hopes up with this chap, who made empty promises to do everything he could to help and he has given up at the first hurdle.

What is the point anymore?????????

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Kitten-whiskers profile image
Kitten-whiskers
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87 Replies
missdove profile image
missdove

I am really sorry to hear that you are so upset....But please do not ever give up hope, its one persons opinion. What has this person tried to do for you health wise apart from cause you stress with his negative attitude?

What is your diagnosis and what meds are you on? D

Kitten-whiskers profile image
Kitten-whiskers in reply to missdove

Hello Miss Dove,

I have an underactive thyroid gland, Adrenal fatique, Candida & Stomach problems, I have tried Levo, T3, Nutri Thyroid and all have a terrible effect on me, so I don't take the Thyroid medicines until I absolutely have to. The Nutritionist said he thought that the medication seems to cause the immune system to flare up - he suggested Taurine to try and calm it down but know he is saying properly nothing will work.

Best wishes

fiona profile image
fiona in reply to Kitten-whiskers

I swear I need my nutri adrenal extra on an on going basis, and I'm sure it's important to treat the adrenals in order for the thyroid meds not to make you worse. Also if we have hypothyroidism, I'm pretty sure it's life long in most cases, so we need our meds all the time, not on certain bad days, or for a bit until we pick up.

Without any thyroid or adrenal supplements I felt like I was dying. I can empathise. You need o a way to get to the bottom of it.

Have you heard of low dose naltrexone (LDN)? It's on private prescriptions £18.50 a month. It works by boosting your endorphins overnight, which modulates the immune system. It may be useful for those with autoimmune and neurological conditions. I had to build this up, but I got some results for some of my symptoms. There is another of out there about advice groups and info. I mention it because it helps me and you mentioned your immune system.

Has your GP tested for vitamin D? That relates to the immune system. I was proven deficient take supplements. When there are colds going round, I may have slight awareness of a very slight sore throat for a day, but that's it. I'm not actually coming down with colds. GP said I'm still getting the colds, but they don't take hold, and don't affect my functioning. Vitamin D is inexpensive solution to some of my issues, as I found catching a cold set my ME/CFS back.

I don't want think of your morale and hope having been taken away. Without hope and morale we have nothing!

I've suffered a lot with weekly migraines and have medication. I happened load a kindle book, and ended up taking butterbur with feverfew supplement which actually helps reduce the intensity of my migraines.

I've have d-ribose and l-carnitine to support he mitochondria and it helps.

I have hemp CBD oil as a recent thing, which is good for keeping my anger down, gives me more energy and resilience and stops my energy crashes being so bas, and helps my muscle pain. That's a whole topic again, and another world out there.

So you've had bad experiences at this nutritionist, go to somebody who knows how to help and how to advise you.

Nothing is a failed treatment. If you improve somewhat or something fixes certain symptoms only, then it's a success in that way.

Kitten-whiskers profile image
Kitten-whiskers in reply to fiona

Hello Fiona,

I haven't heard of naltrexone but I will certainly speak with my GP. My Vit D was very low last year but I was given a dose that made it a bit on the higher side, Iron is also on the higher side and so is B12.

I couldn't take Nutri Adrenal or Nutri Thyroid as it gave me Diarrhea, So I am currently taking Hydrocortisone and Vitamin C for the adrenals.

Thank you for all the information

Best wishes

fiona profile image
fiona in reply to Kitten-whiskers

In this instance I'm referring to low dose naltrexone, not naltrexone, as the two are different topics. It creates very different effects at low doses of the same naltrexone. 50mg naltrexone is for addiction, it's 4.5mg I'm talking about. Do research it, as you'll find useful advice. I think most people have to pay. I asked my GP if I could get it prescribed but the answer was no because it's unlicensed at these low doses.

If you want to know more about LDN feel free to message me as I don't want to take the forum off topic.

I just take a vitamin d supplement that I buy.

As for the iron, do you need expert advice on that?

Kitten-whiskers profile image
Kitten-whiskers in reply to fiona

Hello Fiona,

Thank you for the info, I would be very interested in low doses of Naltrexone. I was told that the Iron being higher than the reference range wouldn't be a problem - it's to do with how the body absorbs the Iron (apparently) but I don't take Iron supplements so why should it be like that, maybe a clue - not really sure in all honesty.

Best wishes

missdove profile image
missdove in reply to Kitten-whiskers

Have you tried doing anything regarding your actual diet? Quite a few of us go G/F as it can calm the gut. I have been very unwell with Hashi's and went gluten free around 8 months ago and it has helped me quite a lot, less aches and pains, increase in energy and calm stomach, it really has been worth while. Dairy can be another culprit, sugar also...I have just started on the Harcombe diet which is a really user friendly way of helping, it also tackles Candida which is fed by sugar and yeast...Could be worth having a look at it. I am on T3 as T4 did not agree with me...D :-)

Kitten-whiskers profile image
Kitten-whiskers in reply to missdove

I am happy to give anything a try, I take coconut milk & Coconut water to help inflammation, I do try to keep dairy to a minimum and always stay away from Sugar, Juices etc. I have recently started taking Taurine as it calms the immune system down (I am told) obviously I need to do more and will certainly need to look at my diet.

Best wishes

linnet2014 profile image
linnet2014 in reply to Kitten-whiskers

The low dose naltroxene seems to offer help with autoimmune disease. Also I have read some very positive stuff re Ashwanagar. I am going to try it as it seems to have a lot of potential. Its an adaptogenic herb so helps with a variety of symptoms. Several sources on eBay.

Kitten-whiskers profile image
Kitten-whiskers in reply to linnet2014

Great, I have heard of Ashwanagar but never tried that either, it is certainly worth a trial

Everdean profile image
Everdean in reply to Kitten-whiskers

Sorry I got that wrong. Ashwagandah is good for thyroid and adrenal probs.

linnet2014 profile image
linnet2014 in reply to Kitten-whiskers

Just try to stay positive. I too was in a very bad place - getting only hassle and conflict from NHS. A few months ago it all seemed hopeless. I decided I either had to give up or find answers for myself. 3 months on and I have my life back, not 100% but improving all the time. I am self medicating and can't believe how good I feel. On the 28 the January I was in total despair !!! Ditch the nutritionist - negative thinkers are not the way to go !

Kitten-whiskers profile image
Kitten-whiskers in reply to linnet2014

That is great news, I am so pleased for you.

Well done - you must be over the moon

sky00 profile image
sky00 in reply to Kitten-whiskers

may i recommend coconut OIL rather then the milk or water --as it is the beneficial for our health...

Kitten-whiskers profile image
Kitten-whiskers in reply to sky00

Absolutely, I will get coconut oil instead.

Best wishes

sky00 profile image
sky00 in reply to Kitten-whiskers

same to you kitten

Blake profile image
Blake in reply to Kitten-whiskers

This guy is an idiot. Those meds you listed are all synthetic and are the wrong ones. First you need to get off any meds that you are on. If you have adrenal fatigue and its serious, HC (hydrocortisone) is the proper treatment.There is a synthetic reproduction, but it is exactly the same as your body produces. Then you will want NDT (natural desiccated thyroid) All this stuff is a a bit complicated, but its not rocket science so you will need a good doctor. (Not an Endo) Find a doctor on your plan..Just call around and ask 2 simple questions. 1. Do you have any patients on up to 4 graing Armour Thyroid? (That's not the best brand, but just ask them anyway because that is NDT. 2, Do you have any parients that you treat for adrenal fatigue using HC? If the answerer to both

questions is "yes", then that is probably a good doctor. If (the secretary's) answers are "no", then that means the doctor doesn't understand the stuff and you don't need him. BTW, nutritionists are pretty much indoctrinated in the same failed medical system. When I was sick with cancer, and couldn't eat by mouth, mine told me to use 6 cans of Ensure a day. I just laughed, ignored her, and blended up whole grain cereal and organic soups and injected them into my feeding tube. They are idiots, don't let them bring you down.

stopthethyroidmadness.com/n...

Kitten-whiskers profile image
Kitten-whiskers in reply to Blake

Hello Blake,

Sorry to hear you have been so poorly, hope things have improved,must admit when I saw this nutritionist - he didn't look particularly well to me and was taking endless vitamins/supplements all the time and was only promoting one of the dearest on the market. Unfortunately I am not popular with GP's or Endros - since I have tended to argue my case and voice my unflattering opinion. I have managed to source Hydrocortisone and still waiting for some west thyroid to turn up - I am praying that is going to make a difference.

Thank you for the link and your advice - It is good to know that it isn't just me

Best wishes

sky00 profile image
sky00 in reply to Kitten-whiskers

"was taking endless vitamins/supplements all the time and was only promoting one of the dearest on the market." am curious which expensive vitamins and supplements was he promoting, ?? ta

Kitten-whiskers profile image
Kitten-whiskers in reply to sky00

Hello Sky,

It was Jarrows Formula, could get them a bit cheaper on Amazon, but the ones he was recommended were really rather price, I think some of the other supplements Jarrows make are not so pricey.

Blake profile image
Blake in reply to Kitten-whiskers

Oh, youre welcome! Ya, supplements are just a small part of being healthy. I am a big Gary Null fan, he talks all about it. You can find his podcast on Itunes. Longest running radio show in American history. He does it all for free, great guy. He has been curing AIDS since before it was called AIDS. Thanks again, and all the best

Hello Kitten-whiskers. I am so sorry that you feel so upset and disheartened. Firstly, ask yourself, does this man know you? Does he know everything about you? Does he know everything there is to know about your condition? Is he qualified to make that statement/prediction? I suspect the answer to all questions is a resounding NO he doesn't. And if he was unfeeling and insensitive enough to make those predictions then it's likely he isn't someone to whom you should give the power to hurt you in this way. I suspect you most certainly aren't a burden, in the same way that none of us here is a burden, irrespective of our illnesses and conditions. We are all MUCH more than a failure of our bodies to work optimally. Step away from your recent experience, and take time to reflect that he is one person with a perspective, and even an agenda, of his own, which is nothing to do with you. I suspect that what he was implicitly saying was "I haven't got the skills to help you" and not "you can't be helped". And that's very very different. Can you post anything specific here, so that those with the relevant knowledge, might help you?

Kitten-whiskers profile image
Kitten-whiskers in reply to

Thank you Hypnoteq,

Thank you for your advice, you are thinking more clearly than I am. I can't tolerate Thyroid Medication, it causes endless problems, even if it does some good at the same time. The Thyroid medication even flares the Candida up. I am stuck in a vicious circle and can't break it. That's why I went to see the Nutritionist, I have seen docs, endro's and a private doctor as well but none of them help, I just get sent out the door with Levo and beta blockers. I take endless supplements and have a good, healthy diet, I do Yoga & exercise when I can but still i am going down hill to the way I used to be and I don't know what to do to stop it.

Best wishes

sky00 profile image
sky00 in reply to Kitten-whiskers

have you had any iodine insufficiency tests done?

Kitten-whiskers profile image
Kitten-whiskers in reply to sky00

Hello Sky,

I haven't been tested for Iodine, but I do take Sea Kelp every day. I will ask the Endro about that.

Best wishes

sky00 profile image
sky00 in reply to Kitten-whiskers

again may i say kelp is a good thing ok -as long as it's not from near japan waters--for obvious reasons, however the dose is no-where near the amount one needs for tyhroid, brest health prostate health etc. etc. see dr. david brownstein the authority on iodine-- along with some other good medical men-- we take iodine in milligrams doses not micrograms, as in kelp--the japanese consume on average 12.5 mg daily which keeps them more able to endure the fuc disaster, and they have the lowest breast cancer rates, dr. brownsteins book and others explain all about iodine etc. note this is not the iodine that one puts on open cuts etc. bought from the chemist, that is not too be consumed.. also good to have a iodine 24 hour urine test with a loading element-- if you can get it--or even the plain old iodine urine 24 test, which gives a result over a few days--better tehn nothing--and if your diet doesn't change much it is a fairly good indication... hopr thei helps--you might want to look up-- Iodoral -- iodine/potassium iodide supplement..

Kitten-whiskers profile image
Kitten-whiskers in reply to sky00

Hello Sky,

Thank you so much for the info - I do take sea kelp every day and it has certainly helped with my multinodular goitre but I may well still need more. When I see the Endro next month I will ask him about Iodine

Thank you Sky

fiona profile image
fiona in reply to Kitten-whiskers

I'm guessing it's an urgency to treat that candida. You say the thyroid meds flare it up, I bet you'll need the thyroid tablets to feel better. I mentioned LDN before, as an example, I heard of discussions where they Candida stopped it working. Is the Candida at the centre of your vicious cycle of things not working and you going worse? Personally I've not had to treat it, but there must be members who can advise about Candida.

Kitten-whiskers profile image
Kitten-whiskers in reply to fiona

Thank you Fiona, ~ I have had Candida for Fourteen Years and whatever I take doesn't get it under control, things ease, then flare up. I am working my way though a book all about Candida and also one for the Adrenals. Hopefully that will make a difference.

Best wishes

fiona profile image
fiona in reply to Kitten-whiskers

Is there such a thing as a specialist in candida and treating it? I wasn't aware you've had a tiresome 14 yeArs trying to resolve the Candida.

Kitten-whiskers profile image
Kitten-whiskers in reply to fiona

I know, it is ridiculous, even the better medications do help but as soon as I have the Thyroid Medication it flares up. My diet is healthy and has been for many years.

I am hoping this book can help, I am so worn out by it all.

Best wishes

in reply to Kitten-whiskers

stopthethyroidmadness.com/t...

You may have already seen this personal account.

"The Yeast Connection and the Woman", by William G. Crook, Professional Books, May 1995, is a book mentioned by Mary Shoman, is it the one you are reading?

Kitten-whiskers profile image
Kitten-whiskers in reply to

Hello Hypnoteq,

The book I am reading is called Candida Albicans by Leon Chaitow.

I haven't heard of the one you mentioned but I will certainly have a read of it.

sazzyb profile image
sazzyb

Hi kitten - well the point is - to prove him wrong! Who the hell is he to make such a sweeping statement?! Please, do not waste anymore of your precious energy crying over a bunch of words, because that's all they are. Just because those words tumbled out of his mouth - it doesn't make them true. Do not get upset over a stranger's comments, please! Chin up lass, everybody here is your friend, let us help. xx

Kitten-whiskers profile image
Kitten-whiskers in reply to sazzyb

Thank you Sazzyb - I know you are right and I should just move on to explore a different avenue, hopefully one that wont be a dead end x

fiona profile image
fiona in reply to Kitten-whiskers

I know how disheartening it is. I moved GP surgeries, I put a lot of hope into an endocrinologist who said he couldn't help.... you just have to decide not to go to that clinic again and go to somewhere who will help. It sounds like you need goo advice and a recommendation.

lucylocks profile image
lucylocks

Hi

I would not let this nutritionist upset you, they do not know everything. I have been seeing one and she arranged some tests, when I questioned her about the result of one test and what I should do about it she said to see my G.P.

I thought, well you said I had to have this test but now you cannot advise me what I should do about it, plus I am paying to see you. I think if they don't have the knowledge to fully help then they are not worth seeing. I shall not be going back to see her again.

Please try not to get too upset, your nutritionist obviously does not have enough knowledge to help you, and he has no right saying what he said.

Please ask for more help on this forum, members are more than happy to try and help.

Best wishes browny

Kitten-whiskers profile image
Kitten-whiskers in reply to lucylocks

Thank you Browny, I shouldn't have taken what he said to heart. Sorry you have trouble as well, I won't be going back either - all that money for nothing, when I could spend it on something that may help.

Thank you & Good luck

Clutter profile image
Clutter

Kitten-Whiskers,

I agree with the others, he can't help you is not the same as you can't be helped. That's a form of victim blaming when the fault lies with his lack of knowledge and skill.

A good nutritionist isn't likely to be able to sort your endocrine/thyroid problems, you need a good thyroid specialist/endocrinologist for that, but a good nutritionist ought to be capable of advising you how to optimise your nutrition and supplements in order for healing to commence with the right specialist guidance.

Please don't despair and don't give up on yourself.

Kitten-whiskers profile image
Kitten-whiskers in reply to Clutter

Thank you Clutter, I wasn't thinking clearly and was so very ill when he said what he said. He was diplomatic about it but it still hurt. The though of spending my life like this fills me with despair and misery.

Best wishes

silverfox7 profile image
silverfox7

I can fully understand where you are coming from. A few years ago I was referred to a pain clinic as I had a failing hip joint. The first meeting was packed as partners were encouraged to come along and hear what it was all about but I was alone which didn't help my confidence. It was run by a nursing sister and a physio and the opening statement was 'you are here because no one can help you!' I was mortified. I'd tried so hard to remain positive etc. I went back next week and said sorry not for me and explained why. We had been given a list of all the meetings contents so they said to come along to ones that might be of interest and I went to most but in the meantime had an injection-very short lived but reminded me what it felt like to be well. Despite being petrified it gave me the courage to have a new hip and I got my life back again.

Just remember its your body and keep striving for wellness. Lots of people can have well meaning ideas but I think first of all you have to be happy with it and if not look for alternatives, ask questions and on here a good place to start, and follow what your head is telling you. Clutter has given you excellent advice and I'm sure there is someone out there who will be able to help you. Because doctors are often so negative it can be demoralising but hang in there.

Kitten-whiskers profile image
Kitten-whiskers in reply to silverfox7

Hello Silverfox7,

Thank you for your advice, it means a lot to have some support when things are hard. If it wasn't for this site and the amazing people with their kind words and great advice i don't know where I would be.

I am sorry you have had such a tough time, I guess we all have. So glad to hear you have your life back

Best wishes

helenbones profile image
helenbones

oh sweetie please don't give up - have been rock bottom too and it breaks my heart you are in such a bad place at the moment. There is light at the end of the tunnel!

Totally agree with others - change your nutritionist (I assume nutritionist rather than dietician?) as he is saying he can't help you. We will all be different but for me the Nutri T-convert, natural thyroid, Gluten- free and then eventually HRT (which I swore I would never use) were the trick. I am me again.

Look up Sean Croxton (US doctor) - gluten sensitivity and thyroid problems go hand in hand.

rooting for you!

Kitten-whiskers profile image
Kitten-whiskers in reply to helenbones

Thank you so much Helen,

It always cheers me up to hear that people have got better.

I agree it is an individual thing, we are all different and what works for one wont work for another.

Lots of Issues that all need resolving, not just the Thyroid. I will look up Sean Croxton.

It's time for me to go down a different path.

Best wishes

helenbones profile image
helenbones in reply to Kitten-whiskers

You will find your path - it just seems obstructed at the moment - but so difficult to keep going sometimes. My sister has had a much harder and longer journey with gut & thyroid issues than me, but is really getting there now too - she has very strict diet of no gluten / wheat, no soy, no corn, no sugar (except some fruit), no dairy (although now has re-introduced and is ok with it), plus vit D , Probiotics and selenium . I may have not have included everything but pretty much paleo I think.

sending healing thoughts and support!

Kitten-whiskers profile image
Kitten-whiskers in reply to helenbones

Thank you Helen - I really appreciate ti

denvajade profile image
denvajade

Hi there sorry you feel its hopeless, do you mind telling me why you saw a nutritionist? was it to do with your thyroid condition. Are you on any anti depressants? please take care

Kitten-whiskers profile image
Kitten-whiskers in reply to denvajade

Hello Denvajade,

I went to see the nutritionist to help with the Candida and stomach problems. I am aware that if I don't get the candida under control then the Thyroid and Adrenals will never be well. I have had Candida and stomach problems since I was 19 (now 33) and I can not get it under control. The Thyroid medication when I do take it flares everything up including the Candida, but he seems very reluctant to try to help with that.

Best wishes

denvajade profile image
denvajade in reply to Kitten-whiskers

Thanks for your reply, I recently treated myself for candida in my gut, and I have terrible stomach issues ( on methotrexate for 71/2 years, a mild chemo) so know where you are coming from ,I have not read all the replys to you so don't know if anyone has suggested what I am going to say, first of all I went on a good quality probiotic along with garlic and parsley tablets, absolutely no sugar, no fruit or fruit juices or wine. Does your thyroid medication only come in pill form ie cant be injected to bypass your stomach? I get a burning mouth with candida and use teatree oil, a few drops in 1/4 glass of water and swish it around, it helps the mouth. I wish you well and keep us informed.

Kitten-whiskers profile image
Kitten-whiskers in reply to denvajade

Hello Denvajade,

Thank you for the information, I will keep you updated.

Best wishes

denvajade profile image
denvajade in reply to Kitten-whiskers

Just another thought going gluten free would probably help and maybe you are lactose intolerant, I am both, coping much better with my stomach by removing these.

Rhiannon5 profile image
Rhiannon5

Hello, I'm currently training to be a nutritionist therefore I know that he had no right to say those things to you.

A nutritionists role is to help a person to achieve optimal wellness through food and supplements if necessary. Individuals are treated according to their personal needs, one size

does not fit all.

Please don't rule out good nutrition, it is so important when an individual is on their path to wellness.

I have Hashimotos and every step of the way has been a learning curve. I've realised how important the food I consume is and some things just don't work for me, I've found that out recently.

Please don't be disheartened, you WILL feel better, I'm sure of it and if I can help in any way by sharing my journey with you, please let me know :) xx

Kitten-whiskers profile image
Kitten-whiskers in reply to Rhiannon5

Hello Rhiannon5,

Thank you so much for this, I haven't ruled out Nutritionists just doctors and endros.

I do feel that I am eating things that are aggravating the stomach but I do not know what it is, I know I have an intolerance to cream as the reaction to that is straight away and very unpleasant.

Do Hashimoto's sufferers have trouble taking Thyroid medication? I have not been Diagnosed with Hashimoto's but everytime I take a Thyroid medication things flare up and I feel shocking? Is their a test for Hashimoto's?

Thank you

Rhiannon5 profile image
Rhiannon5 in reply to Kitten-whiskers

Hi,

It sounds like you have gut integrity issues, ie leaky gut. I have spent quite a long time healing my gut which has helped immensely.

The test for Hashimoto's is a thyroid peroxidase antibody test which your GP can do for you. If it is positive then you will have autoimmune thyroiditis (another name for it).

Levothyroxine hasn't suited me either, I've been on it for ten weeks and have decided to come off it and pursue a different course of treatment with a private doctor. Admin can provide you with a list of private doctors if you choose to go down that route.

The side effects that I am getting are dry mucus membranes (eyes, mouth, nose, internal areas). This was identified when I went to the optician with contact lens problems that has only occurred since being on the medication (I've worn lenses for over 20 years with no issues). As soon as I said that I was on thyroxine, he said that is what is causing the problems. I've also had excessive thirst due to a dry mouth and also been suffering from internal irritation. All other conditions have been ruled out.

Not all people suffer whilst they are on thyroxine, what suits one doesn't necessarily mean it suits another as we are all bio chemically different.

I've made huge changes to my life since my diagnosis and its made a great difference. I study with the College of Naturopathic Medicine of which there are satellite colleges throughout the UK, if you look one up near you then maybe they could put you in contact with a good nutritionist in your area.

I hope this helps :)

Kitten-whiskers profile image
Kitten-whiskers in reply to Rhiannon5

Thank you Rhiannon5,

Much appreciated.

Best wishes

Clutter profile image
Clutter in reply to Rhiannon5

My surgeon has recommended Bioxtra moisturising gel for dry mouth I get at night post RAI.

boltbag profile image
boltbag

Hi kitten plz don't loose hope it will get better . 1 year ago I was diagnosed with graves thyrotoxicosis .coeliac disease proximal myopathy .chronic obstructive pulmonary disease .I was at the stage I would just cry when I woke up just for waking up the way my life turned upside down and inside out in the space of 3 months was horrendous even my own Dr sat me down and told me if I got an infection I would be lucky to survive it . my nutritionist put me on comlpan twice a day and what ever food I could eat which isn't much but she is great my suggestion is you write to your dietary service and change your dietission as your problem is to much for him and his knowledge. it's your body hun and nobody knows it better than you . But take heart it really really does get better just takes time xxxx

Kitten-whiskers profile image
Kitten-whiskers in reply to boltbag

Hello Boltbag,

I am so sorry to hear how poorly you are, that's terrible what you must have gone through.

That is good you are improving. Thank you for taking the time to reply to me, your all so wonderful -

much more knowledgeable and compassionate than any doc/endro.

Take care and I hope things continue to improve for you.

Best wishes

dontkeepmeindark profile image
dontkeepmeindark

Hi Kitten-whiskers,

I can only imagine how you feel after what you've been told and the various things you've tried. If you've tried NDT already without any luck, there could be a number of other things (adrenal fatigue, low iron, etc..) that are causing you to not respond well to it. There's a great site here - stopthethyroidmadness.com/ which explains all that in detail, as well as giving you a list of tests you should be doing and explaining what has worked for other people when your numbers havn't been ideal. Definitely worth a look!

Goodluck to you!

Kitten-whiskers profile image
Kitten-whiskers in reply to dontkeepmeindark

Thank you, I will have a good look at the info on the link. It is hard enough living with this dreadful illness, without having to deal with docs/endros and even people you have paid to help. I have spent so much money on endless different things but not really any success. The long journey continues

Best wishes

Bagpuss profile image
Bagpuss

Just reaching out to offer support as I ve been in this situation myself. I was told I would have to learn to live with the pain I have. I was devastated like you. I am a few years on and still working hard but I am slowly getting better and this is with the help of an expert. I truly believe the body wants to heal and can heal.

I have had severe problems tolerating thyroid meds too.

It is soo frustrating - I know this as I ve felt totally awful for ages and desperately want to feel better. I ve been working for a while on gut healing and for the first time in 6 years am tolerating t3. You said that u thought the candida was flared up so maybe working hard on this and the gut wud help u tolerate in time. ? I know it's all so slow and difficult but that doesn't mean it can't change :)

Seems like the gut and thyroid are heavily interlinked. Gut healing and reduction of candida may light the way to thyroid meds ?

I know how hopeless it can seem but please keep looking and trying and don't let someone tell you that this is the best you can be.

Best wishes

Kitten-whiskers profile image
Kitten-whiskers in reply to Bagpuss

Thank you Bagpuss, I have felt that the gut is causing many more problems than it appears.

I will start dedicating my time to sorting this out.

A horrible situation, I must admit I thought a nutritionist could have helped in that area - but I quess I was wrong.

Best wishes

dylandolly profile image
dylandolly

Hi kitten-whiskers,so sorry to hear you feel so bad,there is a web site called Gut Doctor which really helped me when I had stomach problems,I had H pylori and felt so ill,I was constantly being sick every day I could not keep food down,I was in hospital for a week,no one was able to help,as a last resort I tried Gut Doctor,the first thing I was given was colostrum,and within days I felt better I couldn't believe it,they dont do the hard sell,you can speak to a doctor on there for advice,they treat all stomach ailments including candida,have a look on there web site,hope this helps.

best wishes

Sheila

Kitten-whiskers profile image
Kitten-whiskers in reply to dylandolly

Hello Sheila,

Thank you for this, I will look that up.

Best wishes

fiona profile image
fiona

I'm still astonished he was blunt enough to say you won't get better. I bet your case is beyond his professional remit, and it would have been more tactful and professional for him to admit that.

At my worst I was in bed all day, out of bed to do just two ten minute tasks, split up am and pm, and to eat. I felt like I was dying. I never thought I'd be here today never mind be in a position to explain things that help.

OK I bet most members are on liothyronine or NDT, as Levothyroxine didn't do the job. It could well be that this candida holds you back. Same with adrenal fatigue, which I found treatable with supplements. If all you've ever been sent away with is levothyroxone, that means there is hope for trying the alternatives.

I too astonish people by the amount of supplements I take. A couple have come and gone over the years though.

I thought I had to live with the deep ache in my legs until an experimental antibiotics protocol fixed it.

Sometimes help can come from surprising sources. All it needs is somebody's comment about certain treatment or specialist.

Kitten-whiskers profile image
Kitten-whiskers in reply to fiona

Hello Fiona,

That was actually how I used to feel and sometimes I still do. I have to put up with shocking symptoms - either because of the medication or because I have gone so long without it. I have ordered one of the Hypo allergic forms of Natural Thyroid Medication in the hope that I can tolerate that a bit easier.

Best wishes

tilly83 profile image
tilly83

Before you tackle anything else you need to deal with your depression which is really making you suffer..... counselling long-term but anti-depressants to lift the fog enough to feel you aren't worthless. Keep your friends close even if it is a struggle. x

Kitten-whiskers profile image
Kitten-whiskers in reply to tilly83

Hello Tilly,

I tend not to suffer with depression, only get like that when I feel as ill as I have been recently and to be told nothing can help - is not what I want to hear.

Life is certainly a struggle but I am hoping things will improve.

Best wishes

tilly83 profile image
tilly83

It's not about depression I agree but getting emotional support when you feel unwell is vital xx

Kitten-whiskers profile image
Kitten-whiskers in reply to tilly83

I do agree but where do get that, apart from this site,their is very little support. I get hassle at home, saying I have to find a solution, but I have tried so much and nothing has really made a difference and I am now running out of money - The response to that is 'you have to find the money'

I do feel depressed at the minute but who wouldn't - I am burning up and I do not know why and I am having trouble breathing. I rang my GP and all I got was I am not an expert you have wait til you see the endro - As if the endro is going to be any help.

Everdean profile image
Everdean

If you mean Ashwagandha. I read that this is not good for people with Autoimmune problems.

Kitten-whiskers profile image
Kitten-whiskers in reply to Everdean

Oh, I will have to check that further, because I am sure I read it was helpful

but i don't want to take anything that will make me worse.

Best wishes

Everdean profile image
Everdean in reply to Kitten-whiskers

So sorry kitten whiskers I got that wrong about Ashwagandha You best check it out for yourself. I do hope you find some relief to your health problems quickly.

Kitten-whiskers profile image
Kitten-whiskers in reply to Everdean

Thank you Everdean

penny profile image
penny

I have just been researching LDN for an MS client - if you look at this link for MS ms-uk.org/choicesldn you will see that it is availble in the UK for £15/month. There are links to suppliers and advice lines.

There is a lot of information on the ldn uk site.

There is always hope and I get really upset when a health 'professional' or anyone else says that there is no hope for a medical condition. I would argue that even if that were the case it should not be said as it can be self-fulfilling.

I happen to have been lucky in that I treated a friend who was finding it difficult to walk. The consultant said that there was no hope - she had to have some of her toes amputated - after 30 mins of treatment from me her toes straightened. Amputation indeed!

Good luck.

Kitten-whiskers profile image
Kitten-whiskers in reply to penny

Hello Penny,

That's amazing, saving a friend from having an Amputation - fantastic, that proves that looking at things differently and trying new things can make all the difference. Thank you for the link - looks very promising.

Best wishes

Clutter profile image
Clutter

Kitten-whiskers,

You sound more upbeat tonight. hopefully the great support here has helped you.

Do you think you can you find the money for a consultation with Dr.Peatfield? I think his protocol on addressing adrenal issues prior to taking thyroid replacement could be beneficial to you.

There are some amazing suggestions and I was particularly struck by Denjavade's suggestion that an injection might bypass the gut while helping your thyroid. I'd certainly mention this to your endo for consideration.

Have you ever been referred to a gastroenterologist to investigate your recurrent Candida? It does look as if candida might be the triggering your autoimmune sensitivies.

Make sure you make any dietary/supplement/LDN changes one at a time so you and note effects so you can relate improvement or worsening condition to specific changes.

Kitten-whiskers profile image
Kitten-whiskers in reply to Clutter

Hello Clutter,

I have seen the wonderful Dr Peatfield but he has been very honest and said he doesn't know why I react so badly to the Thyroid Medications. I have just increased my Hydrocortisone but I have been on t and off for a couple of years.

As regards to the Candida - the Doctors are not interested in solving that either - I am going to start being more assertive over this now, I am sure it is causing lots of issues.

I have just started keeping a detailed Diary of medicines/food/supplements and symptoms - at least that way I maybe able to work out what causes what.

Clutter profile image
Clutter in reply to Kitten-whiskers

The diary is a great idea and can really help with tracking stuff.

I'm sorry Dr.P wasn't able to help you, that's very disappointing.

I think you should push hard for a referral to sort the candida.

Kitten-whiskers profile image
Kitten-whiskers in reply to Clutter

Hello Clutter,

I will do, I have suffered enough. I have an appointment with the nurse on Tuesday.

Thank you for all your advice, the West Thyroid you recommended turned up today and I am looking forward to trying that.

Best wishes

Blimey! - sorry not read everyone's comments properly but I'm confident everyone's helping, that's what kind folk do here :D

Don't ever ever give up on yourself, but by all means give up that idiot of a "nutritionist"! - good way to lose custom - please email Louise with his name. J :D

Kitten-whiskers profile image
Kitten-whiskers in reply to

Hello Spareribs,

I have had such a wonderful response, it has really perked me up. The last thing anyone wants to hear when they are feeling so ill and in so much pain - is to here the words he said, he was diplomatic about it but even so it totally devastated me. This is an amazing site that we all rely on and lots of brilliant people with fantastic advice, I don't know were I would be without it. I will email Louise his details as it really was a waste of money - money that could have gone to some proper medication/herbal remedies that would help, I wouldn't have minded quite so much if he hadn't have made all those promises.

Best wishes

lindanoelle profile image
lindanoelle

Hi Kitten, I have read most of the answer, nobody is suggesting Reiki, look it up. Good Luck

Kitten-whiskers profile image
Kitten-whiskers in reply to lindanoelle

Thank you Lindanoelle,

I will look that up.

Best wishes

Debbie

Diana profile image
Diana

I know I may get slated for being different, blood type diet, helps with so much, lots of forums, you need to change your diet, I don't have the answers to your probs, I guess someone on the site does, it is well known for sorting folk out health wise.

I can't speak from experience apart from hormones and menopause, have tried accupunture which does help and chinese medicine.

I wish you well, the answers are not always as they seem, take care xx

Kitten-whiskers profile image
Kitten-whiskers

Hello Diana,

Thank you for your reply.

I did try the blood group diet - it didn't do anything benefical in my case.

I am all in favour of different opinions/alternatives, my elderly cat has accupunture for arthitis and it works wonders for her, I also used chinese medicine which has help me.

The Thyroid medication in any form is no good for me, so I must try alternative things.

Best wishes

Jackiesic profile image
Jackiesic

I didn't read every comment but have you been allergies tested? Im goingto try Naet treatment.

Google it.

Good luck

Jackie

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