In need of help

[lindsayruth482]

My consultant won't listen to me when I say I'm so fatigued I cannot look after my 9 year old son. Since having my thyroid out I'm half the person I was. I'm on 200mg of levothyroxine and I feel this is doing nothing for me. My consultant sees me every 6 months and goes off the bloods from the previous visit so getting bloods done every 6 months. Im in need of help. I'm depressed and I can't continue like this. I have swollen lymph nodes that are being watched which are causing pain. The tiredness is beyond anything I have ever felt in my life. I feel like I have no one to turn to and I'm hanging on by a thread.

[bantam12]

You need to post your latest results so people can advise.

[lindsayruth482]

The letter says my TSH is <0.05, FT4 of 22.7 and adjusted calcium of 2.32 and my U&E's were within acceptable limits

[shaws Administrator]

As you have your thyroid gland removed altogether. It's fine for men to say that levo is sufficient. It isn't for many who have a thyroid gland and it must be far worse for those that dont.

There are two alternatives to levothyroxine if your Consultant would consult with you in a meaningful manner rather than seeing you every six months and leaving patient in distress.

There is NDT - it is a natural dessicated thyroid hormone and there are several. It contains all of the thyroid hormones a healthy gland would provide. They were used since 1892 but Big Pharma persuaded Endos that levothyroixne was 'perfect' .Not for some of us.

Or you could add some T3 to your T4. T4 is levothyroxine and is inactive, it has to convert to T3 (t3 the only Active Hormone) but sometimes doesn't do so efficiently.

I shall give you a link to Lorraine Cleaver who was as desperate as you are and she is taking her case to the Scottish Parliament..

dailyrecord.co.uk/news/real...

She has now recovered and like most of us on this forum, anger is the driving force.

She is also on Facebook.

There is a non-prescription NDT and it was made by one of our Advisers who has died but his wife is running the NDT. Dr Lowe was determined to make one which didn't need a prescription, (Tammy is in the USA).

Sometimes changing thyroid hormones isn't always plain sailing and I had to try a few. Some are lucky and it works immediately.

naturalthyroidsolutions.com/

[lindsayruth482 in reply to shaws]

Thankyou so much for your reply. I've heard of NDT and I originally started on T3 only but was moved onto T4 only on a suppression dose. My consultant doesn't do all the bloods either. Only a few. Everytime I go he just won't listen to me and it's really starting to affect my day to day living. 2 years I've been speaking to a brick wall and I need to be listened to. I've seen Lorraine's story on Twitter. Would I be able to buy NDT and do it myself? I haven't a clue about blood results so I'm not really sure were to start. My mum has terminal lung cancer and trying to look after her when I'm not my best is destroying me. Thankyou for your time!

[greygoose in reply to lindsayruth482]

Probably, the reason he's not listening is because he has no solutions. They know so little about thyroid, that if you don't get well with levo, they're totally lost. He doesn't know what to do about you, so rather than show his ignorance, he's shutting you out. Most endos are diabetes specialists, and have very little idea about thyroid.

Self treating isn't that difficult, but first you need to get the correct labs done :

TSH

FT4

FT3

vit D

vit B12

folate

ferritin

You're going to need optimal nutrients if you're going to take NDT. But, nutrition is another thing doctors know nothing about! You'll find full details of private testing on the Thyroid UK main page.

Then post a new question, asking people to PM you their trusted links of where to buy NDT. You'll be able to judge how much you need to start on, by the dose of levo you're taking now, and the results of your blood tests, which will tell you how well you are converting. And, remember, we'll always be here to help you, reassure you, and may even make you laugh! You're not alone.

[humanbean in reply to lindsayruth482]

Some useful links for private testing without involving a doctor :

thyroiduk.org.uk/tuk/testin...

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bluehorizonmedicals.co.uk/t...

bluehorizonmedicals.co.uk/a...

bluehorizonmedicals.co.uk/s...

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medichecks.com/thyroid-func...

medichecks.com/how-it-works

medichecks.com/dl/Medicheck...

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If you register with Blue Horizon and Medichecks you'll receive notification of their special offers via email - both companies have these on a fairly regular basis.

[shaws Administrator in reply to lindsayruth482]

The two most important to us (hypo) are FT4 and FT3 and you will see the reason on the following link. It is a big learning curve if we are to get well but it is worth it in the end. All members are very helpful.

We are not medically qualified but the proof of the pudding is in the eating and most of us have got to a phase that our clinical symptoms are relieved. It has to be gradual increases.

thyroiduk.org.uk/tuk/testin...

[melville999 in reply to lindsayruth482]

sorry I forgot to post about your depression which is hugely understandable but I would see your GP cos they would be able to help.also samaratins very good,any local counselling you can access,eating more protein can help brain feel better,getting a walk or a bit of your own space,having 5 minutes listening to your favourite tune as a tiny bit of 'me' time.feed the word into google and you may find lots of help.its also your body trying to protect itself as you have a huge overload on your shoulders.try to find some tiny bits of time to ring fence to do something for yourself that's positive and nurturing for you.it can be a start.take care.

[lindsayruth482]

Thankyou so much for your replies! I will have a look through the links provided now. I just wish the consultants would listen to patients more about there symptoms! There's too many people living half a life because of it. I felt so alone before I come on here, but now I know there is help out there it's given me hope. Thankyou so much 😊

[Hidden]

I know exactly how you feel as I was in the same state until I abandoned all hope of getting alternative treatment from the NHS and purchased my own NDT (brand name Thyroid-S) on the internet from Ebay and Amazon. Unfortunately the "powers that be" have proclaimed that we must be prevented at all costs from getting our life-saving NDT as easily and have now forced Amazon, Ebay and Paypal to be a lot stricter on their already existing rules which forbids any sales of prescription "drugs".

It is still available through other channels.

[melville999]

hello,sounds like you are coping with a huge amount,thyroid hormones not optimal(sorry didnt catch what it was taken out for)bringing up your son,your mum terminally ill and undiagnosed painful swollen lymph nodes.starting from the lymph nodes,I didn't catch if these are in your neck or not but they need to be scanned and seen so ask your GP for a separate referral if the thyroid doc isn't interested.try general medicine or ENT.If in your neck and chronic and problematic it needs to be determined what is actually going on.They may be adding to your fatigue as you may have something in addition to your lack of thyroid going on.Caring for a terminally ill mum,can you contact the Marie curie ir MacMillan team and access support for yourself.you certainly deserve it.You cant care effectively as you get iller and iller.can any other family and friends help with your mum?.do you have anyone you can talk to about your mums cancer?,maybe a lung cancer specialist nurse has numbers of folk who can help.You are probably doing very well bringing up your son.No parent is full on perfection ever!!.if he is loved and fed that's what matters.cut some corners for a while with the cooking,(ready meal plus salad plus fruit),quit ironing,clean the basics,online shop if you can.time spent with your child is far more important than what you do as an activity.stop beating yourself up.i couldn't manage half what you do.

[lindsayruth482]

Sorry I should of explained more! I had thyroid cancer stage 3, had central neck clearance and Rai. I got told there was no evidence of disease about 2 years ago. It's really hard looking after mum. My sister in law has breast cancer so my brother is really tied up there. We have had alot happen over the last few years. I have my partner who looks after our son too so helps keep the load of a bit. I haven't a clue what I'm going to do over the summer holidays as I just have zero energy! We have been told we can go the hospice for a day to see what it's like but mum is a bit reluctant. She is 53 and sees it as the last step I think. I'm at my doctors on Thursday so will get him to refer me. They scanned my neck about a year ago and said they was reactive nodes but they have gone bigger and are painful at times. Xx

[melville999 in reply to lindsayruth482]

summer holidays and your son- ?grandparents on your partners side could have him for a while,?any school clubs,ideas from local library?(sometimes a great source of ideas)stack of suitable cds or huge box of fun second hand books for him for rainy days?.if you have a yard or garden a pile of seeds I.e herbs cress cheap pots and a watering can,keep him a bit occupied,any friends who can have him? A cheap tent for garden?,get him building a camp in garden?,9 year old quite grown up in some ways. Even if you do absolutely nothing with your son of any activities all summer all that matters is that you are there for him.even exhausted.simply being there and showing you love him is fundamentally the most important thing.

[melville999]

sorry I didn't read your second post as went to bed my apologies.If your nodes are getting bigger with your history you need urgent referral.,if it takes every scrap of your remaining energy to get this this is your priority.The nodes may have been deemed reactive a year ago but with time things can change,especially unfortunately with all that's going on.They need to really pay attention to this.Get a patient advocate to go along with you if you feel you aren't being heard.Basically reactive nodes shouldn't be getting bigger and sorer because what are they reacting to ?.if they were reacting to the radiotherapy its been and gone so they should have calmed down.I'm not trying to scare you.I care very much that you get some more medical input in what's going on for you,and support,real proper support.

[lindsayruth482 in reply to melville999]

Ahh don't worry, it was late when I posted that! I'm either not sleeping or sleeping far too much! He felt my neck and didn't even notice them until I said I have lumps in my neck and he said where? The first consultant I had was amazing. Then when I got NED they passed me onto him. I said that also. What are they reacting to? How do you go about getting a patient advocate? That would be really helpful in getting myself heard! Don't worry about scaring me haha I've been quite worried over them for some time. I have about 4 but the 2 which are painful and getting bigger is the ones I'm worried about. Thankyou for your help. I really appreciate it xxx

[melville999]

sorry I'm stupid but what does NED stand for?.I think the hospital you attend should have a list of patient advocates or social work may know it or MacMillan nurses too.As you had thyroid cancer was there any specialist nurse there who you could contact.also the first consultant who was good,write a short letter saying you have enlarging painful nodes and write to your surgeon who did the op.These docs may not know what's going on for you.just write 2 paragraphs doesn't need to be fancy. 1 st paragraph saying who you are and what they did.second paragraph saying nodes getting bigger and bigger and more painful and even bigger from last scan and say you ask they could review you urgently.post letters registered.basically you need to 'rattle the cage' if the NHS hard and by multiple routes.

[lindsayruth482]

Sorry I should of said! They told me they couldn't tell me I was in 'remission' but I was NED which stands for no evidence of disease. I got allocated a nurse when I was diagnosed but never spoke to her to be honest. I will write a letter to him thankyou. Never thought of that! He is still there but they must just have him deal with the ones with cancer and leave the survivors with the one I have or something. He just dismisses everything I say. I told him I have crippling fatigue and then he asked if I was on antidepressants. I thought what's that got to do with it. I am on antidepressants because of everything I am suffering with plus mum but the fatigue is something I have had since I had my thyroid out xxx

[melville999]

right,thanks its explaining it a bit.The consultant who is being not very helpful let's call him doc 2.Write to doc 2. A different letter.paragraph 1 same as before .paragraph 2 .'I am concerned as the patient that the nodes in my neck are getting bigger and bigger and more and more sore.You said I was not in a remission category.It is x years from my radiotherapy now so I cannot understand why the nodes are continuing to get bigger.I would ask for an urgent scan and discussion of my case at a multidisciplinary cancer meeting as is the government guidelines.Please could you write to me what the outcome of the discussion is'. Yours sincerely Ms x age . Copy to GP.

[melville999]

energy. Meantime. Beroca vitamin b quite helpful green tube fizzy drink.vitamin c fizzy drink also,haliborange tablets.also quite palatable.if you drink coffee a good one,(we drink the purple one in Aldi,ground£1.49 a pack so we never spend much out on coffee).saves us loads of money.protien(eggs a great source.loads of omelettes in this house)fish,tinned easiest in short term.I am no expert but aromatherapy oils can be helpful in tiny amounts.go and sniff a few see what you are drawn to.rosemary peppermint and a few others will be more energy promoting.allocating yourself bits of set time for you just to be or listen to music.even if its 5 minutes 3 times a day.then your body knows its getting a bit of time too.

[lindsayruth482]

Thankyou so much. I will write the letter today and send it off asap. I take a multivitamin plus I take floradix iron tablets. I've also started adding vitamin c and selenium as it was suggested on one of the group's. Would they be ok to add onto what I'm already taking? Xxz

[melville999]

maybe just add in the b vitamins only beroca.you will pee out what you don't need.and if you are already on multivit tab you don't need haliborange tho vitamin d alone could be a thought.sorry replies from this end are erratic.

[Nanaedake]

If you are taking medication in addition to Levothyroxine, it could be that the particular brand doesn't suit you or that the dose isn't right. It's not surprising you feel exhausted with everything going on in your life and your responsibilities. You probably don't find any time to look after yourself. You need to go back to your doctor to get an assessment of your medication and change it if necessary. And you must get your neck checked out. Ring the consultant's secretary at the hospital and get an urgent appointment.