Hypothyroidism is ruining my life

So my blood test results for my thyroid and my iron levels came back borderline and normal. Still feel so rubbish. I'm actually at the point in my life now where I just want to give up and end it all. Haven't had any real energy since I was 15. Never had my thyroid levels tested until 2014 but by then it was too late to really salvage my thyroid, just have to stick to medication for the rest of my days which isn't an issue. My major concern is that I'm 22 years old, I get accused of being lazy all the time which I'm not.!

I started working from the age of 16-20. But it all got too much for me ,I ended up falling asleep a lot in work and I got the sack because my job was working around fork lift trucks. I get no support from my parents whatsoever they just tell me to get over it and stop faking it all the time. I can barely breathe some days, my weight is up and down like a yoyo. Levothyroxine makes me physically sick, I can't keep food down, I'm barely hungry these days but when I do eat I instantly regret it because I can barely keep food down, I'm always getting the urge to have a nap during the day, sometimes I can just about resist the urge but other days I can't help myself. There will be some days where I'll be so exhausted but unable to rest, when I do finally fall asleep I'm having a lot of nightmares. I was recently put back on propranolol 10mg to take as and when I need them to control my anxiety. I had a really tough time with anxiety and depression when I was 17/18 had some help from a friend to try get through it. But now I'm falling back into this slump. I was also diagnosed with psychosis aged 21 and had to see an occupational therapist every week and take different tablets. I had an episode which made me feel like everyone was out to kill me, I stopped seeing my therapist, I was slowly starving myself because I thought people had poisoned my food, during these episodes they were using a lot of energy that I just didn't have. I'd be too weak to walk, I still am some days if truth be told.

My stomach constantly hurts so I'm having to take one lansoprazole a day (minimum) I don't know what to do. I've tried speaking to several different Dr's at my local practice and they all just fob me off with one excuse or another. I had an MRI done a few weeks ago due to mysterious swelling in my throat, the hospital never sent my GP the results she just said I shall be sent back to the hospital for an ultrasound to find out what's wrong.

The NHS have failed me and many people over the years. How do you cope with living in a world where people think you're a liar when you tell them you're genuinely too ill to think of returning back to work right now. I don't want to look back in the next 10 years and still be in this rotten situation. I have plans for my future, I want to go into university, do something with my life that I can be proud of. Not wake up every day look at myself in the mirror and say "Oh, so I'm still alive then" :/ constant body aches, feeling cold all the time even in the summer time I'm having to burn wood on the fire because it feels so unbelievably cold 97% of the time. I'm experiencing chronic itching (especially on a night). It's like someone is constantly stabbing me with a needle. It gets so bad that I want to get a knife and just peel away all my skin (very graphic I know, I'm sorry but that's how it genuinely feels) I've tried antihistamines but they just masked the problem they didn't eradicate the issue so I'm at a loss with that one as well, I'm convinced it's interlinked with my hypothyroidism but nobody ever seems to listen.

My throat feels sore all the time, I'm having to constantly clear my throat so I can actually speak without sounding like a monster that just climbed out of the sewers.

I'm trying loads of crazy diets to help myself. I've cut off the drink and I don't really have a cigarette anymore but it just seems that no matter what I do life always kicks me back down and leaves me with even more health issues. If I can't get these issues resolved I really do think I'm going to throw in the towel. Call it a day with life. I don't find this selfish, I can't live a life that is slowly killing me and to force myself to go through it any longer would just be madness. I'm not looking for judgement from people, I've always tried to be a placid person just let people get on with their lives and offer advice when I'm asked for it. It just seems that the somewhat nice/decent people end up with some form of health issue. I'm in desperate need of help... The Drs never listen and don't know where to begin with the NHS anymore. I feel like I'm slowly descending back into madness.

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  • I can fully understand why you feel so helpless and so hopeless, but there are lots of things you can do to help yourself. It may seem like you have a mountain to climb though, and it may take a while to improve things - but it can be done. And just about everyone who contributes to this forum can empathise and sympathise with you - we end up here because our experiences of the treatment of hypothyroidism are often just as bad as yours, although the details may be different.

    1) So my blood test results for my thyroid and my iron levels came back borderline and normal.

    The very first thing you need to do is to find out what those results are. You need the actual numbers and the reference ranges, and you are legally entitled to copies of your results.

    There are various ways of doing this, but it does depend on your surgery.

    Taking proof of identity with you, go to your surgery and ask for online access for getting appointments and repeat prescriptions, and also ask for access to your blood test results. All surgeries should be allowing this access, but so far very few do. You get given some codes which you need to register online to view the things I've suggested. If you can access blood test results, then great. Copy the results and reference ranges into a new post and ask for feedback.

    If you can't access your blood test results online then you need to ask for printed copies of your results. There may be a small charge (check what it is first) - they aren't supposed to charge for more than the cost of the paper and the ink.

    But if they ask for silly amounts of money, just say that you can't afford that and would like to view your records so that you can take your own notes. Don't be rushed, and ask for access to be given in private. You will have to be chaperoned when you take these notes.

    They can't insist on knowing why you want access to your records, but you will almost certainly get asked. Just say that you would like to keep copies of your own blood tests for your own reference.

    ----------------

    2) Levothyroxine makes me physically sick

    I'm experiencing chronic itching (especially on a night)

    There are three makes of Levo available in the UK - Wockhardt, Teva, and Actavis. You should take notes of which brand you are taking which makes you itch and whether or not it makes you sick. The next time you get a prescription phone round the pharmacies in your area and ask which brands of Levo they have available. If they have brand 1 available, and you want to try that one, then ask if they can fill the prescription you have - tell them what dose and quantity it is for.

    If they don't have a brand you haven't tried then phone a different pharmacy.

    You may find that one brand works better for you than another. If that happens, ask your doctor to specify that brand on your prescription. Keep good records.

    3) Levothyroxine makes me physically sick

    My stomach constantly hurts so I'm having to take one lansoprazole a day (minimum)

    The reason for the stomach problems you have might be a problem with brand as I mentioned above. But it is also possible that you are getting problems from low stomach acid which is a hypothyroid symptom. Lansoprazole is a Proton Pump Inhibitor (PPI). It cuts stomach acid. The symptoms of low stomach acid and high stomach acid have a lot of crossover, and doctors treat all such symptoms as if the person has high stomach acid. It might be true. But in the majority of cases of hypothyroidism people actually have too little stomach acid. So PPIs are the worst thing you can be taking. They also massively decrease your absorption of nutrients from your food and make you sicker.

    I know it sounds counter-intuitive, but you need to ADD acid to your stomach, not reduce it. What you should try to begin with is to buy some organic apple cider vinegar "with the mother". For an explanation of that phrase, see this link :

    en.wikipedia.org/wiki/Mothe...

    Don't throw the mother away, it's good for you! Start off with a teaspoon of vinegar diluted in a small glass of water. You can disguise the flavour of it with honey or anything else that takes your fancy. Sip this mixture starting about 10 minutes before you eat and continue sipping it throughout your meal. If it helps you can increase the amount of vinegar. I think people sometimes end up on 1 or 2 tablespoons of vinegar.

    There are other more palatable ways of increasing the acidity of the stomach, but they are more difficult to dose. Using vinegar as an experiment is easy, and you can quickly work out whether it helps. If it does you can investigate other solutions later.

    3) I was also diagnosed with psychosis aged 21 and had to see an occupational therapist every week and take different tablets. I had an episode which made me feel like everyone was out to kill me, I stopped seeing my therapist, I was slowly starving myself because I thought people had poisoned my food, during these episodes they were using a lot of energy that I just didn't have. I'd be too weak to walk, I still am some days if truth be told.

    Psychosis is a known effect in some people of too low a dose of medication for hypothyroidism. Levo supplies patients with artificial thyroxine, otherwise known as T4. T4 is a storage hormone. It has little activity of its own, and for it to have an effect on the patient it has to convert, in the body, into T3. T3 is the active hormone. It is low T3 that makes people ill and makes them suffer the symptoms of hypothyroidism. Levo is fine for many people. But if the patient can't convert T4 to T3 then no amount of Levo will make them better. But the usual cause of too little T3 is simply being under-medicated.

    You may not be aware of this but it is possible for people to get blood testing done privately without the involvement of a doctor. But obviously it costs money. A full thyroid function test including thyroid antibodies and the low essential nutrients that hypothyroid patients suffer from costs £99 with a finger-prick test that is all arranged and done via post and email.

    There are other test bundles that can be done for less money e.g. just TSH, Free T4 and Free T3 is £39. See :

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

    bluehorizonmedicals.co.uk/e...

    medichecks.com/thyroid-health/

    If you need more help with private testing and how it works, just ask.

    -----------------------------

    I think that is more than enough information to throw at you for one night.

    Hypothyroidism is difficult to live with but many of us have improved our lives. We've learned that the health service won't help us so we have to help ourselves.

  • Wow - what a fantastically helpful and informative response to TiredAllTheTime94. Reading the post you responded to actually had me near to tears, such was my empathy and sympathy for the sufferer. and I can completely understand those feelings of wanting to give it all up. Reading the advice and the helpful knowledge you provided was truly wonderful. I hope TiredAllThe Time gains some relief and comfort from your words. Thanks for all your helpful advice together with your experience and research which applies to me also.

  • shond2015 You're welcome. :)

  • my dr told me to make sure I used non processed apple cidar vinegar LIKE BRAGGS APPLE CIDAR VINEGAR 1-2 tbsp. in a small amt of water, drink with a straw to avoid tooth enamel erosion, and I could add a little lemon juice if I wanted...to take b4 meals especially ones with protein....if you have bad digestion or low stomach acid you wont absorb nutrients and you can be very l low or low normal in d3, iron,b12 , zinc etc and they can make you feel tired....and you need nutrients to help thyroid meds work...

  • Well said Humanbean very good advice indeed ⭐️

  • It is really horrible to live with - as humanbean says everyone on this forum has really suffered with this too and shares your anguish and helplessness. We've also all suffered the frustration of being dismissed by GPs, irrespective of how we present ourselves to them and our medical histories. I don't know what to say really except keep plodding on, day at a time, making small changes where you can to diet, sleep, exercise and stress. At the moment I am getting into breathing, yoga and meditation. And very gentle walks outside. These things don't cost anything but if you can summon up the determination to get started they do make you feel better and calm the stress that is at the root of so much illness. Good luck and big hugs.

  • I have been using solfeggio meditation and deep hypnosis for a while now, and it has helped a lot. After a long period of being well, I know I had adrenal issues during and after a spell of extreme and prolonged stress and illness. I felt myself going hypo. The meditation and deep hypnosis have reduced my stress levels, and I am now seeing a reduction in adrenal symptoms, though still have some hypo ones.

  • Firstly get hold of all your results because clearly something is wrong

    and your GPs are doing you a great disservice

  • Yes it's crap but lots you can do!

    Like you've already been advised get your results and post on here. Lots of people will help.

    Have you had your thyroid antibodies tested? You're sounding very Hashimotos to me.

    Anything boarderline isn't optimal so supplement until at optimal.

    Gluten/casein(in milk) free will make a massive difference I'm sure. Try it, so not as hard as it sounds. So many places doing GF now. Have a look at the paleo diet.

    Cutdown on alcohol, sorry about that one😩

    The itching, I'm guessing you're sensitive to some of the fillers in your tablets. Could be the lansoporoze. Could be Levo. I'm exactly the same.

    Talk to GP about allergies to Levo straight away. Ask to be referred to an endocrinologist.

    Talk to endocrinologist about NDT natural Dessicated thyroid or adding T3 to your Levothyroxine.

    You need a good probiotic to help your gut.

    Phinaturals 10/30 is good (from amazon)

    Look up bone broth, very good.

    80 % of your immune system is in the gut so gut health very important.

    The apple cider vinegar advice is very good.

    What's your Vit D, B12 like? Get tested. You need optimal.

    Do you have anyone that will help with private testing?

    Medicheck through here is good and bluehorizonmedicals have good tests.

    Thyroid plus 11,12 and 15 are all comprehensive tests.

    Don't give up we can help and you've caught it young so there's lots of hope. I had from your age but not discovered until late 30's so I was in a very bad way but I'm so much better now. X

    Research leaky gut.

    Chris Kresser website

    Dr Datis Khazzarian has easy to understand books.

    Any help we can be just ask. X

  • hello TiredAllTheTime94

    I was so sorry to hear your tale. Unfortunately some of us do feel pretty much as you've described when we have a thyroid problem but you have to learn to sift out what is real and what is illusional. I wouldn't try to diet, as such, as this will make you more tired and miserable. I always keep fruit juice and a stash of apples in my fridge. Apples have a chemical that make you feel good, a bit like the way that chocolate does. I also keep cheap plain chocolate in the fridge but rarely eat it. It really is a constant battle but sunshine and being in water are a great boost to me so whether it be a bath, shower or a swim or just sitting out in the garden a park or under cover in the rainy season you just need to find what works for you. Music and dance used to do it for me but sadly my body doesn't respond too well to that now I'm in my sixties.

    I also keep a large diary and pack my week with chores and things to do and tick them as I go because if I don't there is just one oversized brain fog.

    Don't be convinced that going up or down in 25 micro grammes is the only way as I've found a wonderful pill cutter so I can now regulate in 12.5 sized doses. I'm happy to talk any time.

  • You sound as if you are having a really tough time, but hopefully the advice you are getting on this site will help. Unfortunately our most debilitating thyroid symptoms are invisible, so sometimes people don't believe just how awful we are feeling.

    I found GPs to be simply out of their depth when faced with my thyroid symptoms. In the end an excellent endocrinologist has finally managed to improve my health so that life is managable again. I would suggest that you consider doing what I did and refer yourself, along with a print out of all your blood tests so far, to a good endocrinologist as soon as possible. It was some time before I realised that you can ring up and make an appointment to see an endocrinologist of your choice privately without being refered by your GP. This site may be able to point you in the direction of an understanding endocrinologist in your area.

    Thyroid problems are by their nature often complex and require very specialised treatment that GPs just don't have the training for. Unfortunately just when we are feeling so low with this illness we have to become our own advocates and bang on doors to get solutions.

    I hope this advice is of some help. Very best wishes to you. I really do sympathise.

  • I should add that my bloodtest results were coming back "normal" according to my GPs for many years when I felt dreadfully ill. I was not offered thyroxine or any treatment at all throughout this time. However, when I refered myself to an endocrinologist he reviewed these same blood results again and said I had been misdiagnosed for at least 10 years! My consultant the began to medicate me based on my symptoms rather than just test results alone. It was life changing.

    My GPs had not understood how to intereperate the full combination of results properly. My GPs had been overly focusing on my TSH results. Throughout my long period of illness I was told that my blood test results were "normal". I suspect that there are many people out there, including yourself, who need to see a consultant to get this illness under control.

  • I used to know someone who was absolutely exhausted for years with gut troubles as they also were a celiac but then diagnosed with Mitochondrial disease..it took a long time to diagnose.. and I believe is another ongoing condition difficult to manage.....I don't know anymore than that about as I personally have no medical knowledge at all,but wish you luck on feeling better .. I had to ask my dr to up my Levo as mine was a low dose and she said it was within the range, but I said I would like you to consider that didn't seem the best dosage and she doubled it..still dosage but another blood test in 8 weeks, last time she said wait 6 months ..

    HAther

  • Lots of excellent advice. I should start by checking for allergies in your medication. It's easy to do. Take an anti histamine an hour before your thyroid meds and then see if you feel any better after taking them. Have a read on the Thyroid Uk site as loads of information on how to take you medication and does and don'ts as well. Also remember that things in the Thyroid world work very slowly so it's going to take time. You sound. Dry undermedicated but a lots going on so let's make sure the medication is agreeing with you first then work back from there. It's generally suggested that you don't just stop PPI's but wean yourself off them as they are addictive. Change things slowly so you can tell what's working and what isn't and hopefully you will start feeling better.

    There is a Spoon theory which helps show others why you feel 'lazy' and that you only have a certain amount of energy in the day that you have to share around many tasks others find no problem. These aren't tiring tasks but the day to day tasks of just getting dressed and washing your hair for example.

    Please post your results and then we can be sure where the problem lies but it's usually that GP's thinking that if you are in range you are fine but it's where in the range that is important. Get the ranges as well as these differ from lab to lab

  • It's important to get hold of your results and check that all relevant tests have been done. If not, write down this list and hand it to your GP, saying these are the tests recommended by Thyroid UK:

    Full thyroid panel including antibodies, B12, iron, ferritin, folate, vitamin D.

    Nutrient deficiencies are very common and can cause many of the symptoms you describe. Post your results in a new message and members will help you. There is a lot you can do with regards to lifestyle changes, e.g. Gluten free, low sugar diet. Hang in there, you will find a lot of great support and ideas here x

  • I've had most of these symptoms, been placed on antidepressant, propanolol, an had to switch to synthroid. As my thyroid was remove due to cancer.

  • Sorry to hear that you're feeling so bad, its so depressing when people think that you're just imagining it. When I was a teenager I was always frozen/depressed the family took it as a joke, and even though my mother was hypo it took the docs years to diagnose me. I used to get the itching a lot, then I went on a GF diet and took probiotics (BioCult 14 strains Boots chemist, also Immunace vitamins to help immune system), also gave up sugar and most fruit, think my itching problem was caused by candida,(loves sugar), overgrowth in my gut. Lately only get it occasionally, outbreaks seem to be caused by diet, and I take an antihistamine then. I also had stomach aches and lots of gas and muscle aches, this disappeared gradually with the GF diet. I now eat GF and moderate carb(mostly veggies), and only real food nothing processed.

    When I was diagnosed with Hashi,(2009), the doctor said I had had it some time, by then I was so tired and lacking in energy I couldn't turn over in bed without hanging onto the mattress! I'm so much better now do a full time job and manage to get through the housework so there is light at the end of the tunnel. Make sure you check your B1 and B12 levels and also D3 these are really important mine were very low. I hope you have found some help with all the very useful replies posted, please get back and let us know how you are getting on.

  • Wow thank you so much to everyone who has given so much useful information. I am very grateful that you took the time to help. I'm going to get straight onto the pharmacies in the area and slowly work my way through each issue.

    I will update you all as soon as I can. I'm very happy with the responses.

    Again thank you all so much 😊 X

  • Hi TiredAllTheTime94

    Sorry to hear you have been feeling so bad... you will get better slowly and will be able to get good support here in the forum.. Humanbean and other people have given you lots of good advice... I recently came off a ppi (Omeprazole) for last 20 years .. eek!! .... using the Apple Cider Vinegar and at other times HCL with pepsin tablets , still do.... before meals and I've not looked back!! I bought the book "stop The Thyroid Madness" which i can recommend. It's not fair that doctors are not helping us, but their guidelines are awful. Keep posting and take good care Jane xxx

  • "It's not fair that doctors are not helping us, but their guidelines are awful."

    It is the choice of the doctors to have written and accepted these guidelines. Though maybe, to some extent, less of a choice to have to be seen to follow them.

    Perhaps, if there were at least some patient representation on any body writing such guidelines, they would be at least a bit better?

  • Not that I am advocating for GPs in any way as I have been treated very badly like others on here

  • How are you feeling? Any advice you think will be helpful?

    Really concerned about the dark place you're in. I've been there, you can get better.

    What part of UK are you in?

    If you need to talk I'm always here.x

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