Thyroid UK
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Crumbling can't cope

Hi

I've been putting off posting because I'm trying not to brood on my health but the problems are getting too much and interfering more often with day to day living. I might not even be able to post the right words here or not in the right order because it's so hard to concentrate. But I will endeavour because this is my go to place as so many of you have helped before.

Mainly I am looking for reassurance that I'm not slowly dying. It really feels like I am and I'm not sure if it's the physical or mental problems which are the worst. I could cope if I knew there was a cute, if I knew what to do or if anyone around me family and boyfriend even cared. It's so difficult being the care giver when you actually feel like you need looking after yourself.

Latest update on what could be causing me to feel worse lately...

* Had test and scan for early dementia... Called in 9am on the Monday following the scan on the Friday afternoon told yes some frontal lobe atrophy and you need to go to the memory clinic.

More than a week later no appointment for memory clinic sent, so I spoke to Dr receptionist who out me through to patient liason service, who out me through to the actual memory clinic who said they hadn't received the referral and put me back through to PALS who said the referral had been sent and to phone memory clinic again which I did and they said they had received the referral and to phone them back of I hadn't heard by the end of the week. Couldn't get through. Boyfriend getting irritated wanted to go to Dr with me to find out why. See another locum Dr with him who goes through my results and low and decking behold it's as if I was making it up. Our the initial gp who was another locum had implied I had early dementia had only read the first line or two of the report and told me frontal lobal dementia... But this go I hadn't seen before told my boyfriend and me about frontal lobal atrophy but read further and went on to say also generalised atrophy of the rest of the brain normal, no action b required and put my memory problems and organisation problems down to my hypothyroid result which had gone up to 76 TSH. They wouldn't give me any other results. Assist from cholesterol high. Liver problems ALT significantly high band ASP 2 numbers out said have I been drinking alcohol and answer to that is no as I don't drink and in follow a healthy nutrition plan, which makes me quite annoyed that I get the health problems I do, when people I know who eat up unhealthy and drunk and they don't get I'll. I'm pleased for then but think it's unfair that I struggle even surviving and put so much effort in to doing things right.

Also, I'm still getting kidney pain. I'm drinking lots of water and able to get my itinerary clear by mid afternoon. Anyway since I've lag posted I've had the appointment with the consultant really my chronic back pain. I've got fit do and numbness and tingling, literally my nerves are on edge. I'm booked in for an MRI scan of the full spine as consultant thinks something is pressing on my nerves and he thinks there is cervical damage and let back damage.

I can't take it anymore, in to uncomfortable to sleep in up 48 hours at a time at least before I pass out our sometimes fall asleep naturally with total exhaustion.

I'm feeling so alone as my adult children who live at home stay awake all night but in their own rooms on internet. I sit alone must of the time watching TV, going on my mobile or starting into space. Even can't hold my mobile or anything in my left hand for long as it shakes and I drop things. I try making means for myself and my children or try wouldn't get it as they don't eat anything other than snacks of I don't do all the cooking and waking up and shopping. Sometimes I just can't do it so we all go hungry and then get even more fatigued.

I've taken action after having it out with then and telling them I can't cope and registered us all with the local health club. I would cancel the internet and TV subscriptions but I'm on a fixed contract.

Right now in getting tired young this. I don't know if anyone has got this far but I'm tingling all down the left side even in the face this is an almost daily occurrence. Also get tendon sick like pains and Spasm's. I don't want to wait in casualty in a seat which by the way my feet don't touch the ground when I'm sat in a chair with my back on the back rest and my legs she. It's a long wait in hospital and fifty percent of the time my symptoms are out down to scurry even though tests and and have down physical medical reasons for my symptoms. Just how much if these I presume side effects of t4 do we or can we take before we die. I feel I'm crumbling apart more physically than mentally but I'm on the edge, just feel no place to go. I've already tried to end it all unsuccessfully with the result of just making people feel angry with me and saying it's study. Isn't it selfish of people expecting me to stay when I'm useless to everyone and am struggling even to get up in the morning. Why isn't my medication working? Yes I've asked the dress but they said there's nothing else they can do. I've heard of t3 but none of the drs in Britain that I know if will test for it. I've just had my t4 due put up and I'm having the scan and have to have repeat blood tests but it's all such a long wait. I know I'm not alone. But wonder if anyone can help who had been through the same or knows what I'm talking about. I've got no choice but to carry on, I have children and grandchildren, but I think I will naturally pass away or have an accident soon. I would advise someone in my position to seek medical help but I've done that and it's not helping. What else can I do?

113 Replies
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I feel so sad for you i really do, i wish i could wave a magic wand for you and take your pain away, i am sure others will respond and offer you some sound comforting advice. Stay strong.xxx🌟🌟

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Thank you. I appreciate the thought. Yes this site is very good.

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LaurieRose

It has made me very sad to read your post, and it just seems to confirm that we really don't get the care we need from our doctors. I honestly don't know what the answer is, other than of course pay to see a ruddy good doctor privately but then there is the problem of finding one!

Is this right?

"hypothyroid result which had gone up to 76 TSH"

Is your TSH 76???

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Thanks yes we are told we are allocated a ten minute appointment but often only get five after waiting five times as long. Sorry I'm moody and having a vent. I guess I could go privately, I hadn't thought of that. Thank you.

Yes TSH 76, that was a shock, it says online it can cause dementia. But latest Dr said not to worry about dementia. I know my oxygen level goes up and down but proving it is difficult. When the brain is starved of oxygen even a little regularly it can damage the brain. I think this had happened. I'm fighting it with exercise. I'm having a health check and gym induction today. I've got to push myself to go, actually really wiped out at the moment.

My dose of levo has been put up because of the TSH but I find the side effects worse than the cause. Also the major brain fog had only gone a little. Maybe I need to be more patient.

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LaurieRose,

How long ago was TSH 76 and what dose Levothyroxine are you taking?

The only exercise you should be doing is gentle walking and swimming. You are not fit enough for gym exercise with TSH 76. You should wait until TSH is between 1-2 and even then pace and build up to exercise very quickly.

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It was ten days ago now. Dr said I should be feeling more normal in two weeks. Give up from 50mcg to 75mcg. So, not much. But they do know I am intolerant to many meds. Don't know if this is why. Yes the spinal specialist had recommended just yoga and swimming. He said swimming will be especially good and has referred me to a physio for hydrotherapy. I'm looking forward to that, a little ready of light as before being hypo I regularly enjoyed exercise, not so much the gym but attic classes, Zumba and yoga. I'm going to take it stay though. The health club said they will work me out a gentle programme after my health assessment which is today in an hour.

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LaurieRose,

Thyroid hormone has to be increased gradually especially in >60s so that's why it was only 25mcg. You should have 4 weekly thyroid blood tests and 25mcg dose increases until TSH is 1-2.

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It is likely to take longer than that to feel better. It took me 4 months for symptoms to start subsiding so don’t get despondent if you don’t feel better more quickly. Please don’t try to exercise too much it will make you feel worse. Have you been properly checked for b12 deficiency/Pernicious Anaemia? Ie serum b12, active b12, MMA, homocysteine, antibodies? Perhaps go over to the PA forum for some advice?

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Thanks. I haven my been checked lately it for b12 as far as I know. I've had many videos tests for left and thyroid, don't think b12 is routinely checked Wii urgggghh then as last time I know it was done Dr said we will check your b12 and antibodies too. I'm having blood tests next week so I will ask the nurse to add it on. But at my appointment after my initial post Dr said no when I asked about is it b12 deficiency perhaps. I've been getting pain in my big toes and loose motions and terrible wind. Blinking falling apart. But my head feels clearer today. Hope you're not suffering at the moment. It's a lovely sunny day here through the window. I'm going out for a walk in a minute after a browse. Hope you have a good day. X

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B12 deficiency/PA can be complex to diagnose. With your symptoms it’s worth pursuing. Go onto PA forum for some advice. There are no absolute definitive tests for PA I believe if you have symptoms then they should treat you but please go into the PA forum for more advice on this.

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Yes TSH 76,

Then what are the doctors f*rting about at??? That TSH level is shocking to say the least. You are severely hypothyroid despite being on Levo.

When was your dose increased?

If it has been 6 weeks since then you need retesting now. You very likely need another increase.

My dose of levo has been put up because of the TSH but I find the side effects worse than the cause.

What brand of Levo are you taking? Has it been changed or is it the one you usually take? If you are having side effects you must ask for a different brand. Try them all until you find one that suits. If all brands of tablets cause side effects, there is liquid Levo or imported Levo which they can prescribe for you.

I know my oxygen level goes up and down but proving it is difficult

Do you have a pulseoximeter? If not then buy one, a decent brand maybe recommended by your pharmacist. Take readings several times a day for a week, take them resting (sitting down for 10 minutes before using the pulseoximeter), record them and show to your GP if your level fluctuates.

I have a lung disease and I check my oxygen levels periodically. Mine is normally about 94. It can go down to 92 without worrying, if it gets as low as 88 then that's when it starts getting difficult for oxygen to reach our organs.

I'm having a health check and gym induction today. I've got to push myself to go, actually really wiped out at the moment.

Why? You're in no fit state to be exercising, push yourself and you'll probably feel worse. If your FT3 is low, which it very well could be, then exercising is going to use up the little T3 you have and there's nothing to replace it, ergo you will feel worse.

Thanks yes we are told we are allocated a ten minute appointment but often only get five after waiting five times as long.

Insist on your 10 minutes. It's not your fault if they are running late. If you need your 10 minutes then push for it. Get your watch out and put it on the desk. If they try to end the consultation and you feel you haven't covered everything and your 10 minutes isn't up, then tell them exactly that.

**

If you want FT3 tested and can't get it done at the GPs, then Medichecks has Thyroid Monitoring on offer today, £10 off, £29 today only. It tests TSH, FT4 and FT3 - you need all 3 done together.

medichecks.com/thyroid-func...

Or if you want vitamins and minerals plus full thyroid panel then their Ultravit is on offer today, £20 off, £79 - a good test if you haven't had antibodies and vitamins/minerals tested already

medichecks.com/thyroid-func...

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I'm feeling so alone as my adult children who live at home stay awake all night but in their own rooms on internet.

I try making means for myself and my children or try wouldn't get it as they don't eat anything other than snacks of I don't do all the cooking and waking up and shopping.

Your adult children are selfish and inconsiderate. Don't they care about their mother? Chuck 'em out, tell them they need to find other accommodation. Don't cook their meals. Tell them they have to do their own or starve, and it would be nice if occasionally they made a meal for their mother!

My son doesn't live with me, he lives round the corner with his GF and her 2 children. Every Sunday he cooks a roast chicken dinner with all the trimmings, roast potatoes, 3 veg, yorkshire pudding. He brings me round 2 plated dinners, so much on them I can make a 3rd one. So I have 3 cooked dinners a week I don't have to do myself. Adult children can be considerate and helpful - point this out to yours or tell them to push off.

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Thanks this was a very good reply and I have taken note. I will go to the drs tomorrow and get it sorted. I think I need to speak up for myself more instead of being fobbed off.

I have a pulse oximeter, when I changed the batteries it ceased to work so I need a new one.

I've had a health assessment that and I'm ok to do some light exercise although the way I'm feeling at the moment I was shaky and light headed afterwards. So must take a test till I know my thyroid levels are within range. The only good news I got from the test was that my glucose level us within the good range.

Yes, I've had words with the children unfortunately it did get to the stage where I said if they don't help more the will have to move out.

It's good your son still helps.

My oxygen level goes between 98 down to 92, have the occasional 86 blips but am in hospital then. My asthma has not been so bad since been on levo that's one plus. I will check the brand and ask Dr if I can try a different one. That's a good idea and worth a try. Ideally I'd like to go all natural but needs must I suppose. I have thought about the liquid form as I have difficulty getting the tablet down as it's small and sticks despite drinking a full glass of water.

Ohhhh is all trial and error isn't it. With persevering though.

Thanks for all the advice.

Best wishes

Laurie

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Just a small point but I find taking a gulp of water BEFORE putting the pill in my mouth and then swallowing the pill with more water helps considerably. I had the same problem of the pill sticking but the first mouthful of water seems to smooth the way. Doing it this way I have no problem at all. Hope it works for you too!

Hope things improve for you soon.

Caroline

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Thanks I will try that. X

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Laurie Rose, show them this response and how many likes it got.

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Brilliant answer from seaside suzie :) i know how ill you feel i was the same but its time to get angry, angry with your dr, angry with your kids and angry at the system that keeps you ill. It is exhausting.

2015 i thought i was dying i was in so much pain, couldnt talk properly, couldnt stay awake, shuffled not walked, chronic tummy problems, fibroids, i couldnt think, i couldnt read omg the list was endless. I knew i had to do something or die.

My honest opinion get some NDT drop the levo, levo was like poison to me. NDT only worked for 4 months for me but i got well enough to start shouting and getting things done. I self treated to begin with and when dr saw the change in me he couldnt believe it. I got new dr on 3rd endo. I am not 100% yet and have crashes but i now have a life.

My husband was a pig for few years he thought i was lazy and addicted to pain killers!!i was determined to get well and divorce him. Once i started feeling better i gave him both barrels of my anger and he changed completely and is now my biggest supporter and goes on all appts with me.

My biggest anger was that under my dr i was getting worse not better, any dr who is not interested in our health should be ashamed but the truth is most dont care and are fairly useless. My dr just said i was depressed, obese, menopausal etc he gave me so many drugs i could have opened my own pharmacy!! every drug except the one i needed....arrrrrrrrrrrrrrrrrrrrrrrrgh.

This is a self help illness and the hard truth is we need to do it ourselves. You need all your test results to know where to start, many on here self treat, this may be your only option to begin with. 50% of my symptoms went within 2 weeks i could actually walk, i cried because i walked 30 steps to the kitchen, lol im crying just remembering it!!!!! better health is there but you have to take a leap of faith, lets face it, you cant get much worse.

When your feeling a bit better, tell you lazy children to get the hell out and grow up! do a full list of symptoms now because you will forget half of them when you start getting better :) I had given up thinking i would ever have a life again and am angry at the loss of 6 years to being in chronic pain and bed ridden. I went from competitive sports woman to unable to walk and no one seemed to care.

I am sending you a huge hug xx

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Wow this is inspiring. I'm so glad you got your life back. It gives me hope. I won't be telling the kids where to go but I will be looking to self year as treatment so far is less than satisfactory.

I think we can conquer more when we have the energy levels. My biggest bugbear is the mess surrounding me and lack of storage we just don't have enough space. Mind you we are lucky but to be homeless, so I'm grateful for that.

In your last paragraph I know exactly how you feel and why, same here. I used to dance well and can barely move my hips now I've lost my seed speak which was very important to me, now I don't care what I look like so much and I used to look pretty, never had a fantastic body but I want overweight until hypo and steroids for asthma. Now I'm almost in the severe obese on BMI and it's embarrassing seeing friends I knew years ago in town who all talking to me with sympathy before I say anything. I don't go round exposing to then why I've put on 5 stone since we hung out, but they think I've been munching pies or something. As it happens in that time I've only eaten or a very few times literally. All that time wasted on it I know, but all we can do is be in the here and now and make the most of each day. Obviously nothing dramatic. I mean people have said to me what would you do if you were going to die tomorrow and other than tell everyone I live how much I love them which I do everyday anyway theres nothing I could do that I could afford to do. Hey ho I think I'm going of on a tangent here catch up later in having a blip again. Xx

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If your TSH is 76, you had better see your doctor as an emergency as he/she has been very negligent or go to the A&E - don't say you have hypothyroid inititally just say you feel very very unwell you dont know what's wrong with you.

No wonder you feel so absolutely awful and I know as mine was 100, and you cannot figure out why doctors are telling us there's nothing wrong (no one tested my TSH).

Anyway I am fine now but I've had to do step-by-step myself with the help of others and seeing both Dr Peatfield (who is very unwell at present)and Dr Skinner (RIP). We don't have doctors who think and were trained like these two and those who can think outside the box are prevented from using their skills.

Tell your doctor that he has to be 'a doctor' and give you the appropriate blood tests. I really think they believe we complain too much but with a TSH so high you need to complain. The blood test has to be at the earliest, fasting (you can drink water) and allow a gap of 24hours between last dose and test.

Please see your doctor immediately - immediately. Request TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

Post your results with the ranges.

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The blood test has to be at the earliest, fasting (you can drink water) and allow a gap of 24hours between last dose and test.

I've never been told this?

My tests have never been fasting or first thing...as with all info on this site, they will be from now on!! Thank you

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Thanks. I will go and get another blood test. They insist they won't do t3 I may have to pay for that and then take the result to them.

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I wish all doctors were like the following one on this link:-

youtube.com/watch?time_cont...

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Agreed. He is knowledgeable, that's what we need. It's surprising how many people have thyroid problems. I've read that is mostly over 65 age group, but I think it goes with menopause. When I worked on a care home nearly all the female patients were in levothyroxine along with other medications. We need more specialists or at least good drs who listen and don't treat the patient like just another one with thyroid disorders as if it's commonplace and giving us levo will make us better. Surely there must have been enough patients now that don't feel better on it. Anyway I think I'm going to have to go to a and e one day soon if I can't get the help from the Dr. It's really helped having the support from you guys here. Means a lot as it's not coming from the ones you would expect.

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So sorry to hear of your plight. My GP told me to go to a n e, she said they will do all tests and scans or referrals you need. NO THEY DONT!! It’s an emergency dept and all they will do is send back to GP saying that THEY need to do everything!!! That’s what I was told, which I knew anyway, but when in pain and told to go.....!

All the very best to you!!!!

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Befor you take your Free T3 level to GP post your results here. Doctors really don't know anything beyond TSH and T4.

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LaurieRose,

Don't waste your money on a private FT3 test until TSH is 1-2. TSH is so high because your FT4 and FT3 are low.

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AHH right ok thanks for the info. I don't really understand it all but that makes it more clear.

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Ok I will it could be a while before I can afford the private tests but when I do I will share here. Hopefully by then they will have improved with the higher dose.

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Hi LaurieRose,

I’m sorry I’ve no answers either, but sense your desperation from your post. You sound like you are a strong person & are battling on, but that’s exhausting. I hope there is at least one person around you who can give you little nurturing, even a hug & a listening ear💓I wish you all the very best & hope you make progress with getting the right tests & a effective GP soon! Xxx

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Hi Peetzil thanks that's encouraging. I think if IV ask for a hug I will get one haha. My son died the best ones somehow they feel healing, my daughter's too. I should look at the positive. I think in just had a panic attack with it all. When I posted. But now feel calmer from you lively people posting. Hope you're feeling well.

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I'm so sorry you are having such a dreadful time. Is there someone you could take in with you when you see your doctor? Someone assertive and articulate, who can push for the tests you need? When you're feeling as rough as you are, it can be very difficult to stand your ground.

What dose of levothyroxine are you on?

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So sorry... sending support and good wishes.

Thyroid advice I must leave to the amazing knowledgeable members here who have helped me greatly. However, if I might, can I suggest seeing a good chiropractor about your back problems... I'm currently being treated with dry needling and it is helping greatly.

Sadly, as I was told here, there is no quick fix but you need to act soon to find help. Once you feel that you are doing something positive to improve things then you will start to cope well... even if it takes a long time. You sound like a strong person but feeling helpless is draining. Progress will be by tiny steps but it will happen.

Try and be more assertive and tell your family that they must help or go...not easy but your health is at risk here and that is your priority. They may surprise you!

Be guided by the folks here.

Best of luck

DD

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Thanks so much for your kind words. I'm glad you found help here too. Really had been so beneficial for me before too. I feel quite humbled. Yes I have real difficulty not doing it all for my children. I know it's better for them to be more responsible and I make effort but with one of them I get lots of back chat as soon as arrive mum comes in. The other will respond and do things to help eventually but both are lazy blighters.

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How old are your children? Maybe you should let them read this thread, it might shake them into realising how ill and trapped you feel. You clearly need medical help but you also need domestic help and emotional support, not "back chat"...time they grew up, acknowledged the state you are in and stopped being so self centred.

I know it's presumptuous of me to sit here and criticise your children...but frankly someone needs to! You will not recover well whatever meds you take unless you eliminate the stress factors in your life, and clearly they can help you do that.

Try again to have a rational adult conversation with them and appeal to their apparently self centred nature...they may surprise you...particulaty if your poor health is likely to affect them!! They may just be scared!

If all else fails then vent on here....somebody will listen!

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Have you had vitamin b12 tested? If not I would try and get go to do that too or get it done by medichecks as part of full thyroid panel. Obviously your thyroid needs addressing as that TSH is shockingly high but b12 is important too, and we are often deficient, as deficiency can affect memory, nerves etc... Hope things start to improve soon and once you're up to it I'd put in a complaint about your crap doctor xxx

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Hi yes had b12 and antibodies tested six months ago was ok I've had severe bit d deficiency which they tested for November 2016. I take fultium d for that as my bone density is low and I'm post menopausal now. I think I may need the b12 tested again. I will ask tomorrow. I'm due a full blood count anyway as lfts were out of range and they said to come back for that in March.

Thanks for your post it has reminded me that b12 needs testing I think that's an add on to the FBC.

Best wishes

Laurie

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I agree with NatChap. A lot of your symptoms sound like low B12, to me. If you haven't done so already, you really ought to get that checked. :)

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Yes me too, I will get it tested thanks.

Best wishes

Laurie

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Good. :)

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Get the full panel of bloods done (does everything) privately on line company think they're about £560, my sister had TSH of 115 with her Hashimotos and tried to drive like that 100 miles she couldn't even walk her ankles had seized up. We are both on thyroid S and doing much better. I had really bad brain fog and mood swings, got private cortisol test done and it was high in the day, fixed that now, i also have bulging discs in neck. And my twin has also developed type 1 diabetes too, there's always gonna be something wrong just try and fix one problem at a time xx

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Joanneconnor it isn't necessary to spend £560 on all those blood tests, the surgery can do many of them.

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I have had atleast half of them my doc is great! Laurie Rose just said her doc won't do any or very little

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Lucky you to have a great doc 😀 I think in my case it's because most are locums sound just the for the day and only see me once. It's a very rushed surgery. They are pleasant enough and the pharmacist and receptionists are excellent except for not giving blood test results. I would change drs but have been advised but to at present with so baby tests going on. MRI next month, referral to physio etc

Best wishes

Laurie

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Thanks. Aw yes I know what you mean. Difficult to get a balance, always something. Sorry to hear of your health problems and your twins. I think the disc problems can be from softening of the vibes with vitamin d deficiency. Common in post menopause but also can be a damn side effect of levo.

Best wishes

Laurie

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My docs are ok but I do badger them, they wouldn't do half the tests unless I went in with a list, this time my vit d was low again and my folate, I always ask for a printout of my results, they can't refuse! I also have recently had an MRI done on my right calf which gives me a lot of pain it's almost like a DVT but it's not awaiting results for that, I went to Chiropracter 3 years ago as I had fused discs in my neck and about 6 months ago I had all the pain now I go to physio, put heat pads on and massage, apart from all the foods I have to stay away from it's a whole different way of trYing to live, your not on your own X

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Yes that's the way to go. Last time I asked the Dr rather than the receptionist for the printout and he said no you don't need it in telling you what it says...rude. but no doubt I will see a different one next time. I have seen about twenty different ones at that surgery. I know so many of us have multiple complaints it's amazing how much we are effected by hormones. I'm still amazed at how one tiny little tablet a day effects us so much. With the pain in your calls dies it feel like it is twisting? I know what you mean about a whole different way of living. It's also an invisible illness but can be as disabling as a visible one. I guess there's different levels and we can hope one day we get the balance right and find out what is best for us. Good luck with the results.

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You have to ask the receptionist for results they can do it 😄

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Mine won't, they just say the Dr will discuss with you. 🤔

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They can't refuse you a print out!!

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LaurieRose

Your surgery has to give you your results, we are legally entitled to them under the Data Protection Act. Point this out to them and say you're sure no-one wants to break the law.

If they still refuse, see the Practice Manager and discuss it with him/her.

thyroiduk.org/tuk/NHS_Infor...

If still no joy you can make a Subject Access Request

ico.org.uk/for-the-public/p...

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I said this to the receptionist and she said I would have to pay and it would be a long process.

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She's wrong and being obstructive.

I go into my surgery, ask the receptionist for a print out of my latest test results and she prints them out there and then, no charge.

They can charge, but only enough to cover paper and ink.

They may want notice, but a couple of days is enough.

If you want more than your latest results then they can charge £10 for records kept on the computer. For records on computer plus a other form £50. Read the first link I gave you. Then speak to the Practice Manager.

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Yes I keep thinking my balance must be right now, I've tried so hard for so long, I just can't find the optimal levels it's so frustrating, I'm on NDT and doing much better than on Levo or T3, maybe you will do better too x

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That's good, sounds like you do all you can.

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Thanks, I went on auto immune paleo diet and found I had triggers, yeast, cows milk, gluten and tap water, I was constantly bloating and having gall bladder attacks, which don't happen anymore if I don't eat or drink these, it's a daily battle to stay healthy, but j will not give in to it!! 😀 and you mustn't either..... Research is the key, and also looking on here helps a lot too

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That sounds good. I have found good makes a difference. Caffeine makes me jumpy. What year or glen makes me body. I did try the lchf plan that helped me lose half a done in a week but was unable to move. The paleontology diet is mostly natural food isn't it? If so that's got to be beneficial. Yes keep going sounds your doing well and being strong not letting it beat you. X

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I had to have my heart checked in various ways because I was so jumpy/out of breath/couldn't breath etc. Found nothing! Said it was all in my head!

I found this site at Christmas, changed how I take my med, was given The Four Pillars book and most importantly cut out coffee, so much better!

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What's the Lchf plan, yes the auto immune diet you take everything out and eat meat and vegetables then after 3 weeks start to add things back in and see if there's any reactions with them, yes I'm doing much better now thanks x

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I read your post and it really amazed me how strong you are lady I admire your strengths !!!you are going through something very horrible at the moment but I tell you what-there is always a light in the end of the tunnel and u will get there!just make simple small steps at a time! Have u asked ur gp to refer u to nhs endocrinologist? Myself iam in a very hard situation (of course yes is much harder) I was diagnosed tsh 44 where I nearly lost my mind and didn’t know what’s happening to me I lost a plot -cried a lot was hopeless even now I feel horrible still trying to find the right medication ! this site has given me some really great feedback and please talk to someone or even here with people don’t feel alone we are here to help you!it breaks my heart that u are down there on your own like me I want to give u a big huge hug and say to you that don’t ever ever give up.Also I been taking antidepressants in my past and had a full blown panic attacks and anxiety!!! And I know how it feels.... now u need to just pull up yourself and everyday make some little progress some little steps to help yourself ! Take some advices from people here keep eating healthy you will be better ! Maybe u need to increase the dose or add t3? I will experiment myself with Thiroyd from thailand iam desperately waiting as I can’t handle Levothyroxine too many side effects.I will dig deeper to this I won’t stop and fight for my health so I want you to be like that too!!!

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Thank you. Yes I'm going to ask about an endocrinologist again last time I was only borderline hypo, maybe as it has got worse I may be able to be referred now. Thanks.i appreciate your help and wish you well too (((hugs)))

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Hi there,

Im very sorry you are feeling so unwell.

In regards to your liver issues please check out info on NAC. Appearently it aids in the production of glutathione which is an antioxidant that helps repair the liver.

I take Jarrows sustained release 600 mg tablets 3X daily from amazon.

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Try and join chat rooms for each of your problems..a..its always nice to speak to somebody in the same boat..and b..u always pick up some snippet of valuable information.. I know how rotten it is when u don't get support from the family

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Hi hang on in there...reading your symptoms is like reading about my self when i was in my forties...i feel your pain and frustration i eventually got diagnosed with hypothyroid and given levothyroxine, and a lot of how i felt slowly decreased or went away....have to admit i sill have some symptoms.

Good luck hope you get better soon. xx

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Aw yes I've come to realize how common it is. I'm glad you're on the other side and hope those other symptoms go away too. Nice to know I'm not on my own.

Thank you x

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So glad you have found us! But so sorry how badly you are being treated. We are all here for you and you are now among friends. Knowing what can be done to help I gained a lot of courage to ask for help. It was t easy but I was slowly able to nibble away at the problem but st the time it feels for ever. Everything in the Thyroid world works slowly as well be keep telling yourself you WILL get there with help from your friends. Keep in touch and tell us how you are doing and we can nibble away together and give our support and encouragement. Thinking of you.

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So sorry to hear you are so unwell LaurieRose this is just a thought as a lot of your symptoms are mirroring mine, I had a bad relapse since last year, have they checked your B12 levels? the two can go hand in hand. My thyroid took down my B12 and my cortisol, and other relating hormones. Worth asking to get them checked. xX

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Dear LaurieRose, I wish I could give you a hug. I can relate to much of your story, including family. Maybe if you asked the forum for reccomendatiions for an endocrinologist local to you? And then request a referral from your GP? You are entitled! Xxx

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Laurie Rose I’m sorry to read you are having such a hard time. I can empathise my TSH following a hemi thyroidectomy went up to 81 six weeks post op and my FT4 and 3 were low. My Levothyroxine was increased from 50mcg to 125mcg by my Endocrinologist. That was a big jump but I had no side effects from that. Six week later my TSH has reduced to 27 and FT4 and 3 had improved and Levo was increased to 150mcg. Six week later my TSH is 25 so Levo has been increased to 175mcg Each time I’ve started to feel better and I’ve been on this dose for three weeks with another blood test due in three weeks time. I am now managed by my GP who is very knowledgable about the thyroid.

I’ve seen some replies about going to A&E. Unless you are Myxodematous your symptoms are not a medical emergency. You first port of call is with your GP. If you can’t get an appt in a timely manner then ring 111. They can give advice and even get you an appt with your GP if they feel necessary or direct you to your nearest walk in centre.

However all that said blood serum TSH will not change until you have been on your increased dose 4-6 weeks. It’s a long process but there is light at the end of the tunnel.

As for your teenaged talk to them and tell them how you are feeling and that you need some help. I hope this helps

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My Dear LaurieRose,

My heart goes out to you. I understand everything you say, wright down to your family's indifference. you have so many issues here that you are battling to survive because I also call Thyroid "The creeping disease".

Please forgive the lack of punctuation because right now I am dictating as I can't type as I'm in agony due to a rotated rib. I can hardly breathe but I feel I must communicate with you.

Much of what you describe sounds very similar to what I have been through in the past. I forget what my TSH levels were exactly but it's your symptoms that interest me.

Current more enlightened thinking believes that hashimoto's is probably caused as a result of leaky gut the leaky gut itself is caused frequently by use of antibiotics because of the devastating effect antibiotics have on the gut biome when the bacteria are killed the the this allows candida albicans to come back with a Vengeance and become dominant it is a fungus which grows tentacles and Pearce is the gut which in some places is only one cell thick so it's not difficult to achieve as you can imagine with the leaky gut particles of what we eat pass straight through into the bloodstream this creates and autoimmune response and generates inflammation apart from a lot of other things as the gut becomes leaky and that's damaged it's stops being able to perform one of it's major functions which is to actually Feed Us and give us the nutrition from the food we eat this inevitable III will decrease not to say reduce to negligible levels any or all of the vitamins that we need to function low vitamin D in particular will seriously impact thyroid health it all becomes a vicious circle because everything depends upon everything else and a bit like a House of Cards once you pull one out in all Tumbles down if we can just assume for the sake of argument that you do not have adequate or correct gut function with an impaired gut biome we can start by helping this situation immediately.

Buy immediately I mean that you should try to follow an exclusion diet by this I mean excluding the main aggressive agents to a leaky gut these are any wheat and gluten food such as bread pastries pasta etc you will need to start reading labels to make sure you avoid these at all costs secondly avoid cow dairy completely this is obviously included in things like butter however margarine is no good either and must be avoided for other reasons keep a diary of what you eat and your response how you feel at the end of the day thirdly you must avoid soya often if not pretty much always soya is used as a dairy substitute and it will be just as bad avoid soya completely you will find that fire is even used in salads in restaurants when I discovered this I was amazed because there is absolutely no nutritional benefit whatsoever in adding soil to a salmon when olive oil will do if you want further advice on possible allergic food groups that could possibly affect you I will be happy to give you a full list and what causes me a problem because from my experience I'm living it I can see that hashimoto's thyroid is such a complex issue there is no single pronged attack to combat it because it develops on many different subtle levels.

My point about the nutritional angle is pivotal once you can exclude from your diet anything that may continue to harm your immune system buy provoking it will benefit you immensely once you have achieved this this is the first step this is what I have done and continue to do on a daily basis.

Secondly,

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Oh bless you thank you so much for the effort to post to me. It sounds painful having a rotated rib. Hope you're reviving the goods treatment.

Yes it's interesting and makes total sense about the nutritional aspects of the disease. I know someone who has a leaky gut and they mentioned the candidate from the yeast. Also, with antibiotic use. It feels swings and roundabouts for me with nutrition.... If I exclude all the foods which I seem to be intolerant to, I become very weak with lie blood sugar. I have the random day where I feel allergy free and quite wonderful for a few hours.

Do you get to feel like this with all the effort you or in towards your health? I hope so. You're definitely rocky about no single pronged attacki feel like HU is a health army of brave soldiers battling the crap out of hashimotos. Hehe. We can do it. X

Best wishes get well soon. Let me know how you get on re you're rib. X

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Dear LaurieRose, you are such a darling to worry about me! At the moment I am like a gasping fish because I can't breathe deeply enough due to the rib pain, but it's getting better but by bit.

Some people mistakenly think that if they avoid gluten they are suffering some nutritional loss in their diet. Not so. Soya is not good for us anyway either... and we don't really have the capacity to deal, particularly with cow dairy, much beyond childhood. Try Goats milk instead of cow dairy. For butter I find that along with skimmed milk in France, Italy and Spain that causes me no problems... I can't drink British Cow dairy, or butter, but I can eat French butter "Le President"!! It due different pasteurization methods abroad- ours here are too rigourous which kills even the beneficial bacteria.

We need to go back to the beginning, or at least this is what I am doing.

Take live Probiotic Kefir.

You will probably feel wobbly because you are not benefiting from what you eat due to a compromised gut biome regardless of all the other issues involved.

We also have to take into consideration our genetics and ethnic origins. I am deceptive in appearance, being fair skinned like my mother who is Welsh. My father is Latin as he is Catalan from Barcelona. I think I have a high potential for having the Neanderthal genetic, given the fact that Northern Spain was one of the last places that Neanderthals managed to cling on before they died out. Another clue is that my father could never cope with British cow dairy either...

Personally I am beginning to wonder whether even our gut biome has its own genetic element to it... Maybe we struggle when we are not fed from the soil that we genetically emanate from?? I have put this theory forward to a stool testing laboratory in the US and they have replied in the affermative, saying that this might just be so!

Look at what you eat. I try not to let my blood sugar drop by making sure I have a few nuts to eat, so that I do not go too long without eating. I find this helps.

Persist. Don't lose hope.

Stay calm and look at the root cause- the gut. Take baby steps to help your gut and everything else will follow.

Poppy the 🐈 xx

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Hi Laurie. It may not be the complete answer to your problems, but please give it a go. Try a vegan diet - better still a raw vegan diet. Juice fruits and veg in the morning and have it for breakfast. Don't eat fried food. Cut out all dairy and meat. Try to avoid gluten. Don't eat eggs. Stick to fruit, veg, pulses, grains, seeds and tofu. Take vitamin B12 supplement. Try this for a month and see if you improve. It won't be easy at first, and you may have cravings for cheese and meat, but be strong and do it. If it doesn't work, you won't have lost anything.

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I'd be careful with the tofu as it's soya, which is not thyroid-friendly!

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Noted. Yes. Thanks. X

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Ooh yes I could easily do this. O basically am apart from reading chicken and occasional spag bol, also I one have b12 except when I have oily fish but it's definitely coming up as probably being something I need.

Thank you muchly x

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My pleasure. It's helping me. and I have 3 autoimmune diseases :) x

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Good grief you've got more than your fair share. All the best. X

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Hi my heart goes out to you and do understand your emotions for sure, just want to send big hug that it WILL change for the better, you are in the right place........last year I could hardly get upstairs breathless. With Weak muscles, I was ill and I felt so alone, no hope, I live alone and in a new area. I had just discovered I was hypo and b12 low and vit D very low, and had leaky gut, the worst symptoms soon improved once got these two things, And Nutri Sustain to heal gut, And I took the vitamins by spray in mouth as with leaky gut they may not absorb well, I'm sure many of us have leaky gut undiagnosed, wheats aren't the best, It isn't hard to take out gluten as I imagined, made so much difference for me anyway

doc can give you vitamin results I'm sure but post them on here with ranges, as docs say you are fine and in range but often too low in range, Sorry if repeating above

yes, me too, I started to be more assertive with doctors I had to, and finally found one who will get my tsh down to a one. One doctor criticised that I was quite informed, so I just said that sadly I had to be and had joined Thyroid Uk. (Honestly you would think you were asking for gold lol). I was refused endocrenist a few times then managed to get a different doctor to refer, I went last week, maybe a good point to say is you are stressed more easily and would like adrenals checking out, The endo I finally saw is checking adrenals and pituatory, Thyroid, fingers crossed for you

it's a work in progress but it DOES get better and I can see how strong you are, even though you don't feel it right now 🌺 Xx

have a soak, wrap yourself up in love and cotton wool, and follow the advice here, I find it hard to share it with others and children so here is such a wonderful place to offload, yes as said, other stresses needing to go if possible, but we probably make more of them when feeling so low, so that will improve too, I understand about children, they do seem selfish and in their own bubbles, it does t help with all the unsociable tech!

To give heart, Im not in the same place of no hope now and it will be the same, ok I'm still muddling a bit but Rome wasn't built in a day, compared to a year ago much better place and actually did a sprint down the rd the other day, 😊 Onwards and up. 🌸🦋Xxx

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Thank you yes I agree. It's good that things are improving for you. Onward and up. 🤣Xx

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.....👍 Ps I had awful chest pain and had it on and off a long time but ecg fine. Another fine symptom, not. Lol.

Told and read that bone broth excellent for gut too, It starts to come together it's just getting on Track x

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Ooh that's not good so you know why? Yes I've heard that. Have you watched the Hensley sisters program they made it on the send to be a staple in a healthy diet. I can't remember how they did it but I'm going to look it up. My dad always made bone broth and my gran. Dad was British champion weightlifter featherweights in early 1960's. So had to eat healthy. He said bone broth very good. X

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.....yes me too!!! Yes the older ones often did the right stuff, my mum did wonderful soups with ham bones, hardy folk!, it makes me smile as I know a few in their 90s who always fried egg and bacon had real butter etc. Not heated spreads, not daddy diets or ideas,

I expect if you keep to what nature grows and intended, it has to be good, ooh and porridge. 😊

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....fast even hahaha

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F A D D Y. Lol

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Haha fast faddy. 😄

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Haha yup.x

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Oh the porridge haha, guaranteed to be on almost every nutrition book. Must mean it's good. I prefer readybrek easier to digest. I wonder if it is as good. X

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The more natural the better (check ingredients ) 🤓

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Some say protein for breakfast, I don't know, but vary it

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Oh dear I hate getting it wrong and tapping the wrong button as I have sent my reply un-finished I shall continue...

Secondly you need to try and re-seed your gut biome in other words the population of good bacteria that live in your gut this will benefit you immensely. the ultimate aim is to repair your gut so that it no longer leaks. this is what I myself am trying to achieve.

You can help to do this by taking live probiotics such as coconut water kefir to begin, with just in case you are cow dairy intolerant. this is the most gentle and innocuous form of probiotic as I have found for my own experience.

Then there is something else that struck me from your post. II myself experienced thyroid toxicity as my response to thyroid medication just did not work for me. my GP at the time just kept increasing my dose and I actually felt like the medication itself was killing me. I got to feel so bad but he just kept up in it constantly because he just did not understand remotely how the whole thing works for us.

You are under many stresses and your family are one of the worst. I can personally sympathize with that totally as I too have two particular sources of stress in my family that for the time being will not go away, so for now I have to distance myself as much as possible....

This huge part of your life, this huge stress cannot be underestimated it's effect is extremely negative up on you. we all know how poisonous stress is because it pushes up our cortisol levels

When we are in the middle of our own family nightmare it is very difficult to give advice with the best of intentions. outsiders looking In will give excellent advice because they can give it from an objective viewpoint . we ourselves in contrast are mired within it and would love to be able to do what is suggested to us however sometimes the finer details only we are aware of, can make that very difficult with all the best of intentions.

The intensely selfish attitude of your children is no reflection upon you whatsoever. I have seen a wonderful parent who is loving and giving beyond all measure, sadly produce a child who is the most selfish and self-centered obnoxious creature I have ever met; which is heartbreaking but nevertheless remains a fact; when we are as ill as we are , we only have time left for dealing with facts. therefore the advice that everybody has given you so far, at the end of the day holds true.

For the sake of your own survival you must put yourself first and find the strength and the courage to lay down new house rules; you are not being selfish for doing this, for you are in the right and they are in the wrong. very often dealing with the source of stress in our lives particularly our personal lives is almost as difficult as dealing with this disease but you must try your best to address it.

The topic of stress brings me to the next point which is most important.

The back pain that I have experienced has been so crippling at times then I have virtually become bed bound and felt even too painful to move and turn in bed. this is the effect of stress. if we do not support our adrenal function which is an integral part of our endocrine system I believe it gives us a propensity to become thyroid toxic. because all the medication for thyroid that we take, we cannot make use of because our adrenal glands are not functioning and playing their role. therefore not only must you attempt to reduce the stress in your life but you must also address the possibility that you have depleted adrenals there are plenty of very very clever people on this site who will help you with this.

High cortisol levels will disrupt your sleep pattern without sleep your body will not self repair and make your situation worse without sleep you will have no energy and quite frankly going to the gym will feel like scaling Everest. I sympathise with you totally because I understand your level of exhaustion but then you also are not benefiting from a properly functioning gut therefore you are not receiving the nutrients the vitamins and the trace elements that you desperately need to be a well person, so really forcing yourself do you exercise on an empty tank is not really the answer. the answers to start with the gut; takeaway what may be making it worse by removing wheat gluten soya and cow dairy as a start, then deal with reducing the stress in your family life by asserting yourself; and making it known that you also have your own needs and the others have to abide by what you say. This will help you to take back control as well as diminish the the source of stress; also addressing your adrenal situation will help your thyroid medication to be available to your body to be used; as you also reduce the sources of inflammation by following this exclusion diet that I've mentioned it will help to decrease your general inflammation because inflammation will pass the blood brain barrier and affect your brain. Decreasing inflammation will also help your mental faculties. At my worst I found really strange things were happening to me it's too complicated to explain here but just take it as read that I had to begun to start losing my mind but I realised it was all to do with thyroid and nothing else.

As I have started to improve my gut biome by taking live probiotic kefir everyday I have felt improvement in many areas including gut absorption which means for the first time I am beginning to benefit from all the supplements that I've always taken. I have also noticed my memory has improved and my general awareness has begun to sharpen and I feel more like I used to feel.

Don't despair there are many wonderful people on this forum who will help you to improve because sadly current medical thinking is totally inadequate towards treating our condition. because they just don't think straight or maybe it's precisely because they think in a linear fashion that they cannot grasp the highly complex multifaceted issue that is the endocrine system . use your GP for the best that you can , obtain your blood test results printed out on paper for free any questions at the receptionist and just inform them that your consultant requires them this way I always get mine for free when I asked for them because as everybody else has said you are legally entitled to them.

Take heart And Take Control, take probiotic kefir as is the first step hand in hand together with putting your children straight. Do not be afraid to make demands of them because you have to put yourself first. If they don't like it it's their problem because they should have acted differently to begin with they have a lot of growing up to do. you must look after yourself and there are people here who will help you to do so I for one would be happy to help you with advice on kefir.

Big hugs

Poppy the 🐈

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Thank you poppy the 🐈 🤣 very thoughtful and kind of you to post all this. I've read every word I'm like a done soaking up advice. It's what I need drs don't have a lot of time. Today was ok at the appointment. Dr doesn't think b12 is affected but thinks I have engine I have to have an ECG. We also discussed the neurological symptoms and I have been referred to a

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Oops Poppy same thing happened to me with the unfinished post. Touch screen phone is sensitive. Anyway yes I've been referred to a neuropsychologist. My daughter is a member of health unlocked and has been reading the posts. Just thought I'd would skip that in. She gave me a lovely big hug but want too happy I had a little moan, oops. All resolved now. This probiotic kefir sounds though it could be good. Is it like silken tofu or am I barking up the wrong tree? In think I've heard of it in Indian meals. I'm going to go vegetarian. Looking back I never had any guy issues when I used to be. Even at 18 I used health food stores. Now 49 and 19 years of non vegetarian hasn't helped. I seriously think GPS think menopause... Hypothyroid... Hormone replacement sorted. It's not as linear as that. We are all individuals and medicines affect us differently. Even my vitamin d replacement is a hormone. Thanks for your post got me thinking a bit differently. Would welcome advice on the kefir, yes please x

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Ooppps, it's easily done!

Of course I will explain. The live cultures that allow us to make kefir look like little jellies. When you wash them after the first ferment and you rinse them you can see how jelly like they are. They get called 'grains' . They pretty much double in volume every time you use them.

The 'dairy live gains' are a little different. They are frilly and look somewhat like cauliflower! They are very darling really!

I will happily send you my instructions which include photos, but you will need to private message me as I cannot add them here as it is not possible.

To Private Message me directly, go the the picture of my lovely Cat Poppy and click on it...then you will see green block with message written on it.

Happy to help and share the gift that is Kefir! 😉

Poppy the 🐈

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Thanks Poppy the 🐈🤣

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I second Poppy’s kefir advice. I’ve been making it from her instructions for the last week, it’s all experimenting at moment but hoping for good gut health. It’s good bacterial cultures used to ferment sugar water/ coconut water or fruit juice. 😀

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Sounds good. I know my mum used to take a supplement for fit health after finding from a test something to do with gut bacteria. Something else she tried that helped was the acid watchers diet. She doesn't need to take levo she chose not to as within the first three months of taking it she had numerous negative side effects. So I'm thinking you ladies are doing well identifying the gut issue. I carry so much weight there, I think it's a precursor to the other health problems. I'm going to look kefir up now you know haha. X

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I had a range of private blood tests. They did not include vit D. From this site I learned vit D is very important so asked my GP. It came back very low. I have been taking vit D3 for a month now and physically feel much better.

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Excellent news. I've been taking it about 18 months I think the dose needs increasing from the initial loading dose as they call it. They will probably monitor your levels. I must remind my lively nurses to check bit d when in have try and left next time. Booked the appointment today. Best wishes enjoy your sunshine vitamin glad it's working. X

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I take 5000IU D3 and due for another blood test in 2 months.

Previously I had low vit E but did not notice any improvement when normal.

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Your post made me sad though you are not alone with the things you are going through.

We all have a story to tell and as you read others stories, a recurring pattern begins to emerge. I too was in a state in the beginning as I hadn't been treated by Drs. They just wanted me on anti depressants! That was not the problem, the problem was physical. However, so many things can go wrong in the body when the thyroid is hypo. There is not one function in the body that is not affected. Most hypo people including me have vitamin deficiencies. They need to be corrected and bought to optimum levels ( not just in NHS range!) and in my experience GP's do not take this seriously and tell you to get supplements from Boots chemist. If you are deficient, this is not good enough and you will need more information from reputable groups to learn how to correct your levels. When I corrected my vitamin d deficiency, and before it was optimum, my pain levels began to improve and so did my sleep along with bone pain, muscle pain and fatigue. Don't underestimate the power of optimal vitamins. If your Dr won't test you, it is worth paying privately to give you an accurate picture of your own body and a starting point.

Your TSH shows you are under medicated and you are likely to be very ill indeed with that number so it must come down before you feel better. If you are lucky enough to be amongst the people who can get better on Levo montherapy, you can improve with time. However, there are a growing number of people who have conversion problems with T4 to T3. These people need T3 or NDT before they can feel any relief. Every person varies.

It gets easier when you are able to be pro active with your health and have a plan. This is what I found! Knowledge is power, read as much as you can (I know it is difficult with brain fog and all the other symptoms), join groups and reach out and ask questions, it's how we all learn in the beginning.

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Thank you yes I believe in research sometimes my mind feels totally boggled though. But I do have a bizarre sense of humour and I'm a fighter. Also I find this site the best for support. I've appreciate everyone's contents and it's good to know we are not alone best wishes

Laurie x

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I really admire your tenacity against all the odds. I felt as proud of my mum when my dad had terminal cancer and she concealed her own health problems from him to make sure he didn't pass away worried about her. I took time out (and missed out on promotions) to help my parents and it was worth it. My mum has been a widow for oh, so many years now, is still hanging in there, but like you, has a lot of coronary and neuropathy issues (N.B. B12 - so neglected by the majority of GPs and neurological symptoms can start with blood levels of 500 - hers were about 150), she's had pneumonia and she now insists on always seeing the same doctor each time as locums have a habit of messing up on her meds as she has so many and there's a lot of interactions. If there's an emergency she'll go to A&E (she has frequent falls and getting to the GP is logistically harder for her).

One thing that helped her is to drop eating any processed breakfast foods. It's quite an effort for her, but she manages to make herself an omelette every morning with some fish or fruit and she feels a lot better on it. Routine is very important too .. just doing little bits here and there and if something difficult comes up she'll ask us for help. She stays so upbeat though - she's very stubborn which I think helps!!

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Good old mumma aww that's good a role model. Hi yes I've just started eating cereal again used to but Sindh breakfast as so tired in the mornings but an omelette would be a better choice. Thanks for your post.

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Sorry you are battling so much. The most important factor, in my experience, is taking control of our own health and wellbeing.

In your place I think I’d consider changing to another GP practice.

I find mindfulness/ meditation very helpful. You could try this:

I also use EFT, which I find very powerful:

thetappingsolution.com/

Sending you love and healing thoughts xxx

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Thank you yes I will do more mindfulness I've downloaded some apps and watch you tube. My mum is a counselor and has been doing mindfulness from a long time ago so she had many books I usually get something related for birthdays or Christmas haha all good. Best wishes x

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I trained in EFT myself. I'm finding meditation useful, without it I think it would be letting my anger out more. I just try to be thankful for the positive aspects. Every now and then it's just too much though. Still looking to the future after a few more tests it will probably get back to optimal. Best wishes, love and light. X

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Just wanted to say you will get over this. And can you change doctors?

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Thanks. At the moment I haven't slept all night again despite feeling exhausted. I have very itchy calves on the front. The is little scratches and little bumps dosing and bone pain in the same area. It's being keeping me awake 48 hours at a time till I have about 4 hours of sleep or posing out till the next 48 hours. I've used aqueous cream to no avail and almost in years of frustration now. So it's nice to read your message just now 6.19am. if I stay awake till 8am I will be able to phone the go at the time we have to for an appointment. I will change drs once I've had the consultant appointments lubed up. Thanks for your post.

Best wishes

Laurie

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Others on here are more knowledgeable than me but TSH of 46!!

I would not take any more nonsense from this surgery. You are entitled to print outs apply under the access to Medical Records Act making a Subject Access Request.

Explain to the reception staff that you need the copies of blood results as if you are forced into waiting for then they will be out of date. Whoever told you they would be a 'long time' is irresponsible and possibly lazy. Ask to speak to the dr explain your distress and ask for vitamin D, B12 , calcium, parathyroid hormone testing. I would ring round anonymously asking different surgeries what the score is with regard to blood tests and time scale in getting a print out. Good luck. xxx

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Hi LaurieRose. I am sorry you are having to go thru all that, especially having more stress than you need from your b.f. For me the hardest part about needing ongoing medical care is the loss of trust I used to have toward most doctors' advice. Now I have to add to my evaluation of their recommendations for treatment the thought "Do they have my best interest at heart or is their agenda taking precedence?" Mainly is this treatmemt/surgical/procedure recommendation enhancing their bottom line? Often it's hard for me to know what to do. It doesn't always help when we come from families and friends who have the philosophy" Do what the doctor says. He/she knows best." Not always! Often I know best because it's my body and my quality of life. I am usually assertive but often it's like swimming upstream. Take care. irina1975

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Thanks Irina. Yes patients can know quite a lot nowadays about their conditions. I think we need to because of the lack of information and support available. I think this may have been highlighted and finding given to my surgery because I can see an initiative had been started with more customer/patient information stands and the pharmacy had also been increased in physical size. However this had decreased the patient waiting area, so that we are almost sitting on the knees of other patients... Many of them non hand over the mouth when they are coughing and sneezing.

Going of track a bit here sit. But yes I know some come from family's where they say Dr knows best but not mine out my other loved ones. It's more a case of avoid the drs. Which isn't really helpful Jorge of I hadn't had levothyroxine in the first place I wonder if I would have been alright like my mum. We were both only borderline hypo thyroid, after reacting badly to her first few doors she didn't continue levo and she dies very well with vitamins, minerals and and a healthy lifestyle.

I think if you see the same Dr all the time and build a rapport, then you are probably getting the best treatment. It s not their fault that people reactions to the same medication are different. I think some need to be more well informed our if it's not their area of interest then refer patient to another Dr. With thyroid problems there are so many effects. I think some trainee drs are only interested in the biggies like cancer and heart attack. Once we've got our Thyroid meds it's off you go mother, just got to cope with it like everyone else. ... Actually had that said to me. Anyway not so much expecting sympathy off then that won't make the biological facts go away but it might help a little haha. I have been seeing the same Dr now since the original post and she has the right kind of attitude for me... Concern but not over sympathy and poor you, rather here's what we think it is and here's what we are going to do... Accountability at last.

Still think like it sounds you do that safe care is the way forward. There a bit of a grass roots attitude in this climate. Didn't considering moving to an area with better gp surgeries with more funding or going private.

Best of health to you, keep on keeping on. 😊

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Having read your story, I was really moved. The advice & support has touched me too. LaurieRose this forum is the best thing to ever happen to you in terms of your health, you WILL get better, just stick with this forum.

This community is truly life saving. But of course you come to realise this as you start your journey to getting better.

Start with the testing as advised by Seaside Susie & many others.

I'm rooting for you girl👍🏻😀❤️️

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Hi Paula :-) I hunk my post showed the situation which resonates with a lot of us. This is such a great community. I'm so. Thankful, you have all actually saved my life. It's still tremendously difficult and soul defeating bit whenever I feel desperate and alone I come here. In Assad people also have the troubles but like the old saying a trouble shared is a trouble halfed. I haven't got the energy to apply for PIP or a tidy enough home to ask a social worker for help. If I did I might be able to afford the alternative treatments or some help with daily living. At the moment I just have to wait for the blood test, ecg and whole done scan... My nerves are shoot and bone pain too. Thanks for being there. I'm here for you guys too 💛 best wishes

Laurie

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Laurie

You sound more upbeat & that's good to hear.

It's certainly a very lonely place when things take a turn for the worst with our health. Funnily enough I cried only the other night explaining too my husband that very feeling of loneliness with having thyroid troubles. He's understands but he's fit & well & there's the difference.

This forum helps me no end as I'm certainly not on my own here!

With regards world problems, don't feel guilty. Self preservation is a must when it gets tough for us. I turn the telly & radio off at times. When certain things are heard & images seen it can leave an imprint, not good for our mental health when trying to recover. With relentless 24 hr news coverage to boot , b@gger that! 😂 I helpout locally if I feel I have a good day.

I'm with you the cleaning front, my house resembles that of Charles Dickens character Miss Haversham! & I look like her sometimes!

Good luck with your tests & scans. Forgive my 'tome' of a post 😐

All the very best to you

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