will i ever feel alive and well again

had underactive diagnosed four months ago and i am just getting more ill as each day goes by, monday had camera inside me looking for bowel cancer, tuesday was so ill with sickness and diahorea, thursday ecg test as bp gone through the roof, friday dislocated shoulder pulling myself up from bed today cant stop crying , so sick of being in pain every day, so cold basel temp never above 34, so tierd , cant think clearly ,so fat 3 stone gone on in months yet have no appetite, how can that be? the doctors cannot see how ill we are or how different our lives have become, i am grateful to this site as here i feel not so alone, but we are all struggling to get help and that scares me so much, i live alone and feel like my batteries have ran down and that life is all over , my good job has gone the same road as my health, i dont want to communicate with anyone as i have nothing to say , sorry

61 Replies

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  • Hi Lola

    I'm so sorry to hear your story, I wish I could give you a hug and have a bloody good chat/cry with you, I feel your pain (apart from the dislocated shoulder, ouch!) I was only diagnosed this year in May and I'm still trying to fight my corner with the medical profession and explore this illness myself. There are many helpful, kind, caring people on this site and I hope they can help you in so way. I just wanted to let you know I understand and felt so sad for you when I read your post. Lots of love and hugs xx

  • thank you for taking time to reply to me hope your well soon too, love and hugs x

  • Can I just make sure that you are doing, and have done, all the basic things so that your levo is working to its full potential. Sorry if you are already aware of this but its well worth a try.

    Do you leave, at least, two hours before and after eating and drinking (apart from water) when taking your levo.

    If you have had all the vital vitamins tested are they all at optimum levels for thyroid patients, so is your:

    B12 over 700 (usual range approx 190 - 900)

    VitD over 75 (anything below is either deficient or only sufficient not optimal)

    Ferritin levels over 70 (preferrable nearer 90)

    Iron levels healthy

    Folates also healthy

    If your levels look nothing like the above then your body may be unable to use your levo properly.

    Are you under a gasto and if so has she looked at autoimmune gut issues.

    Sorry for all the questions but you sound so desperate that I wanted to try and help. Try to stay strong as people on this site will do their best to help and advise. If you have any blood results you can share with us then this would be helpful.

    Sending big hugs

    Moggie x

  • hi moggie, sorry for delay in reply but shoulder pain not good for typing, thank you for your kind reply and questions, my b12 is 203 ,been slowly coming dow last 3 months , ferritin at 30 both the doctors say are fine, i have questioned it but have been told by 3 doctors that its fine the other blood tests you mention have never been done , i try to stay strong but its getting harder big hugs to you x

  • I'm not a great believer in supplementing until you know you are low in range but if I was getting a no from my GP and had a ferritin level of 30 I would supplement as iron is really important for the body to be able to use your medication correctly and needs to be nearer 90.

    If your B12 is falling the again I would supplement this as well - if your GP does not want to help, or just doesn't understand the importance of these vitamins and thyroid medication, then I'm afraid you need to take matters into your own hands and supplement yourself or your thyroid medication will continue to struggle and so will you.

    Always remember to take iron supplements on a full stomach and with VitC.

    Moggie x

  • oour gps do understand but for some reason , probably money, they do not want to run tests or treat low vitamin levels

  • Lola I think you need to fight for this, I will never for the life of me understand how your doctors can think that a B12 of 203 is OK, it is not OK, it is many millions of miles from OK.

    The symptoms of Pernicious Anaemia (PA) are wide and varied, I really think it's a strong possibility for you. Why bother doing all the expensive tests and investigations on you when they haven't even done the basics, and that's screening you for anti-parietal cells and anti-intrinsic factor. They could be doing active B12, MMA or homocysteine.

    I know you're feeling awful, and I know that you could supplement with sublinguals, but injections would be better in the first instance to get your levels up. And you would also need your folate near the top of the range and your ferritin at least 80.

    Stomach issues are part and parcel of PA, this is what they should be testing you for. This link leads you to lots more information:

    b12deficiency.info/

    And there is a fantastic Facebook Group where you will see that you are not alone. There are many people on there with multiple medical conditions and multiple autoimmunes, I know I go on about B12 a lot but it really is a key element in a lot of different conditions. This is a link to the Facebook Group:

    facebook.com/groups/1749289...

    If you don't have a Facebook account lots of the same people are on the PAS forum (the website is down at the moment, hopefully back later today):

    pernicious-anaemia-society....

    And there is also Dr Chandy that you could contact as he can provide info for your GPs, such as his treatment protocol which I have attached here:

    b12d.org/sites/default/file...

    You would most certainly be getting treatment if your GPs followed this protocol. A trial of B12 injections is a cheap and safe option, some more info here:

    b12d.org/book/export/html/1762

    Dr Chandy's email contact address can be found on the B12d.org homepage here:

    b12d.org/

    I really hope you can get some help with this Lola, if you want any more information please let me know. I'm out today but will be around later.

    Hampster x

  • lola1956 - just want to tell you to hang in there and don't let go. Strive to feel better and I am sure you will. take care.

  • thank you x

  • I can sympathesise with you as i have had one hell of a journey,have had gluten free diet which assisted gut settling down,I was taking generic brand thyroxine caused bp to rise,nightly episodes tremor,pain in left arm & elbow,chest pain.Finally I have found holistic GP treats with vitamins magnesium,B12,co10 enzyme.salmon oil.Vitc.Its hard but do your own research,stay focused &try to find understanding GP.

  • Proper diet and reducing stress are two key elements in managing thyroid probs.

    The NHS mindset is about keeping people going in work as cheaply as possible and if we fall outside the lines by needing more they don't want to look very hard into why this is.

    They don't want to micromanage good health, just patch the rough edges.

    We seem to be in a period of change when money is getting tighter, people more aware -and something's got to give. Thyroid probs are slow builders over time and suffered longterm neglect.

    The number of thyroid sufferers on this one site alone shows the problem.

    We could probably be multiplied.50X in UK as many don't go public about their case.

    I would like to see a push to take the Gov't on like at the Lewisham Hospital where they were stopped in tracks by legal action about closure. [by 38 Degrees].

  • Yes, Tegz, the Government were stopped in their tracks.

  • then please why dont we fight too

  • hi tegz, thank you for your reply,my shoulderis not condusive with typing at the minute, i know we were all just dealt these cards in life but what hurts is that nhs knows what to do to try and help us but doesnt do it, why do we have to scour the internet whilst ill to seek answers, my doctor watches me walk out the door and he knows i am getting worse and that he has not done his best in treating me, i thought the hypocratic oath prevented that ? i too feel i have to step up and be counted, because if i dont get angry i will go under, i feel myself going , thanks for reply

  • hi marylyn yes my journey is hard but i suspect most of of our journeys on hear have been harder than they need to be thanks to medical profession , thanks for kind reply

  • Lola

    I am sorry you are feeling so awful with horrible symptoms. I felt more unwell when on levothyroxine than before I was diagnosed.

    This is some advice from Dr Lowe which may be helpful and cursor down to the date/question/answer. This is an excerpt:-

    September 6, 2001

    Question: My wife has been diagnosed with hypothyroidism following a TSH test of 12.6. Her doctor prescribed 50 mcg of thyroxine, but she has had very adverse effects—severe nausea and dizziness. She experiences these an hour and a half after she takes even on a dose as small as 12.5 mcg. I know the drugs in America are different from those here in England, but I wonder if you've come across any reactions like this and can offer any advice. The doctors here don't even acknowledge such side effects exist!

    Dr. Lowe: Your wife may be having an allergic reaction to some constituent of the thyroxine tablets she is taking. It is extremely unlikely that thyroxine molecules themselves are causing the reaction. Thyroxine is what we call an "orthomolecular" substance. This means that thyroxine is natural to the human body and necessary for health. Allergic reactions to orthomolecular substances are incompatible with health and extremely rare.

    web.archive.org/web/2010103...

    Please email louise.warvill@thyroiduk.org and ask for a copy of NHS Endocrinologist and private doctors, one of whom may be near you. Ask to be referred as it is just terrible leaving you to 'get on with it'.

    We can get better but we need sympathetic medical professionals and alternative medication if necessary. We shouldn't have to search the internet for help but thank God for it otherwise who knows where we would be if levothyroxine doesn't make us feel better (which it does for many).

    Finally, get a print-out of your most recently blood test results complete with the ranges and post on a new question for members to comment upon.

    Best wishes

  • thank you shaws , i too feel very sick all the time yet weight going on , feel worse since taking levo on 75 now

  • I know it's easy to say but don't worry about your weight. The important thing at present is to feel well, and your medication is at the optimum level for you. Your weight should then be easier to lose as your metabolism will have increased.

  • shaws sorry but this week i was told after bp went through roof and had ecg that i should worry about the weight that has gone on in recent times due to thyroid problem,, maybe eat more salad i was told , or veg , haha i am vegetarian

  • It's funny how they always point to some other cause for symptoms, although, as known, excess weight can also interfere:-

    This is an extract:-

    Hypothyroidism is associated with:

    Mild high blood pressure. Hypothyroidism may slow the heart rate to less than 60 beats per minute, reduce the heart's pumping capacity, and increase the stiffness of blood vessel walls. All of these effects may lead to high blood pressure. Indeed, patients with hypothyroidism have triple the risk of developing hypertension. All patients with chronic hypothyroidism, especially pregnant women, should have their blood pressure checked regularly.

    *******

    Another link for your GP.

    web.archive.org/web/2010103...

    Excerpt of a study by Dr Toft and Dr Becket (Toft ex President of the British Thyroid Association):

    Beckett and Toft also wrote, ". . . our findings are supportive of growing evidence that the current policy for treatment of hypothyroidism with T4 alone and in a dose that restores serum TSH concentrations to the reference range may be flawed, at least in some patients."[11]

    web.archive.org/web/2010103...

    So, ask your GP if he can reduce your levo by 50mcg and add 10mcg of T3 on a trial basis. If he needs proof we can give him a copy of the Pulse Online article. T3 should also raise your metabolism and by reading the above quote it would appear that keeping the TSH within reference range can cause problems.

  • From Lowe - "Thyroxine is what we call an "orthomolecular" ...

    In my reading travels recently I came across an interesting post on synthetic T4 production.

    I'm not sure if all methods are the same between producers for sure, but this article said that Levo was made using E.coli bacteria [no doubt 'inactivated'] and actully contained left-handed DNA contrary to human types, which are opposite handed.

    This is noteworthy info.

    I see this as a good reason to steer clear, if Levo doesn't agree. Many meds work for some patients and nearly knock others of their perch at minor doses. [Deaths are not that uncommon].

    We suffer not just from neglect symptom wise from the NHS but fron Pharmas tendency to push drugs out for profit [recovering major investments] before they know the full story.

    The Yellow card system shouldn't be a get out clause for producers learning at patients expense.

    GPs treat all meds as forgone solutions to many varied co-conditions. Meds are NOT fully tested on combinations that can happen up front- but only withdrawn when people have suffered or even died.

    A very bad model which runs alongside outright neglect of UAT, in particular, where the 'magic' med Levothyroxin has been blessed by RCP by holy water sprinkling and application of the street wise 3 card trick.Drs should not be pushed into ignoring traditional treatments if effective.

    Welcome to the 21st Century!

    Lola - I will be fighting back.

    I want to get subscriptions of £10 from all who can afford to get a fighting fund to get a QC to take on the GMC and their buck passing on thyroid treatment.

    If admin can manage this- I'll be glad to know.

  • i agree with a fighting fund, i was going to try doing this alone as this non treatment of my illness is killing me .... i too am fighting back tegz

  • Great idea tegz and count me in! Do you have a link to the Lewisham case please? Can't believe I missed that but my memory is shocking. Thanks.

  • Hi Lola. I'm also so sorry to read your post and feel very bad for you. I've sat where you are and it feels an extremely dark and lonely place. You are not alone. It's a wretched disease and follow the advise of those that understand it well on here. Take care, Wired :)

  • thank you wired for your support , its much appreciated x

  • Hello Lola,

    I am sorry ot hear of your story, I can relate to every word you have said. We must keep strong,stick together and fight for better treatment. Along with taking the normal supplements, have you had the ASI test done (not available on the NHS) that will test your adrenal function and DHEA levels - this is very important. I really feel for you and I am also in a simillar situation so lots of hugs - It will get better. Thankfully their are some fantastic books out their to help, I am afraid that it is up to us to get well, the doctors are clueless and in my case made my situation much worse. Take care xx

  • thanks kitten whiskers i cannot afford now to go private, i feel the need to take on the nhs as your line that "its up to us to get well" and forgive me i am not having a go at you , is not actually true , the doctors should be helping us get better and if gp does not know, then he should be referring us on to someone that does, take care x

  • I think the problem is that the guidelines laid down by the British Thyroid Association:-

    british-thyroid-association...

    makes the treatment of thyroid gland problems seem so simple. They also have false statements on their site which means patients who do not do well on levothyroxine are denied a trial of alternatives which they say are 'unsafe' despite them being in use for around 100 years.

    The fact that many of us have felt so much better than on levo and, in desperation, some are forced to self-medicate. If a doctor should prescribe may be threatened with losing their licence.

    Also in their guidelines it says we have to be kept 'within the reference range' but some of us need a low or suppressed TSH.

    They believe our clinical symptoms are not connected to the dysfunction thyroid gland and are treated as 'separate' conditions".

    Despite our pleas - they go unheard.

  • the nhs has false statements on there site too shaws

  • Hello Lola,

    I agree with you that the Docs should be doing something but the sad truth is they do not - I have stood up and argued with my GP's, the Endro and had evidence to back up what I was saying but It falls on deaf ears every single time. Hopefully you will be one of the lucky ones that gets a good GP or Endro. I wish you luck in finding that. The library has useful books in it that may help you find the answer to make you well. Take care

  • hi i have not got a good gp, have tried 4 in my practise and have no hope in seeing an endo unless i can afford to go private, why do we have to go find the information out there , why ,with the vast amount my doctor is being paid does he not find out what i need to help me, am i the only one to ask why after all i have paid in to the nhs is my doctor not treating me in the correct manner x

  • I couldn't agree more. I am so annoyed with what is going on. I am now 32 and have been suffering for years, when I say suffereing I mean going through hell, I hobble into my docs, shaking because I am so cold, struggling to breath, my heart racing away, blood pressure low, white & pastey looking with hugh black circles (makes me look like I've been in a fight) every time they just look at me and say all thats wrong is your TSH is slighly high and send me away, I can't remember the amount of times I have come from the surgery in tears. My life is slowly but surely disappearing and not one of those over paid so called professionals want to give me the time of day let alone treat me. I want to be well again - but is that ever going to happen????

  • oh bless you kitten, if we all shout together then they will hear us , tegz is trying to get together something , if you check his question you will see , if we all stand united maybe then we will get proper treatment xx

  • scroll down to bottom of this page , we will not give up yet xx

  • Thats great - we need to fight xx

  • Kitten, the videos I have been posting addresses this issue of the limited treatment of Hashimoto patients by doctors who are stuck in a paradigm which can never really heal. I hope you will watch some of the short videos in a series of Hidden Causes of Low Thyroid. It may answer some questions we have asked ourselves. It is posted below.

  • Hello Heloise,

    I will certainly have a look, Thank you very much. I have never been tested (as far as I know) for Hashimoto's but people have suggested thats what I have. The latest thing i was told was that 2% of people have an Intolerance to Thyroid Hormone & maybe thats what is wrong with me. Do you really think that is possible? If so then wouldn't it be best to have natural thyroid?

  • Video #10 talks about your body attacking your own T4 T3.

    Video #9, about Graves.

    I think a functional medical doctor is the type of doctor you have to see for treatment.

    All he can do in the videos is explain the diagnosis but of course cannot treat.

  • Hello,

    These video's are really excellent, thank you very much. I will be changing my doctor and I am now sure I have Hashimoto's. That has been a great help

  • I hope you get good treatment, let us know how you do.

  • Will do. Thank you for your advice - extremely helpful

  • Hi Lola,

    When I read what you wrote you sounded exactly like me. I am going through exactly what you are going through (except the shoulder - sounds very painful). I had two biopsies carried out in my stomach to rule out cancer. The second time, the following day I could hardly stand and had to take the strongest painkiller as the samples taken had been many. Waiting twice to have cancer ruled out was the hardest two weeks of my life, something I wish never to experience again. Your stomach is central to so much. When your stomach is ill and not functioning as it should it can have a domino effect on others parts of you until healed. And can effect the absorption of levothyroxine.

    What you and I are going through is alot! But take heart that you are going through the process of investigations.

    If you have not had the following tests done by you gastro, you may wish to mention them:

    Gut Hormone - I had this test taken by my gastro. Was told its a very expensive test, but for you it can be justified. Please ask for this test to be done.

    Bile salts malabsorption (SeHCAT) - I was told I have IBS. Sometimes diahorrea can actually be caused by bile salt malabsorption. Thyroid problems can make parts of your body function much more slowly i.e your metabolism and parts of your body such as the liver and kidney.

    ACTH - tests adrenal insufficiency. I understand the NHS does not undertake the adrenal fatigue saliva test. But the ACTH is still an essential test and a good starting point.

    These are just some for starters.

    Yesterday I felt exactly like you are feeling. Exactly! I just spent the day in a darkened room. So I am not sure why I am responding. I hope I can help a little.

    Please try not to make this overwhelm you. Take it day by day. Everyones suggestions made are exactly right. Please follow the guidance and ensure you get the tests suggested done to make sure you are clear what your levels are. I will assume that as you have stomach issues you might be low in some areas. But it is better to know what areas.

    I am in complete agreement with Tegz. Yesterday I wondered exactly that - why has no thyroid organisation made a legal challenge? I know money and resources is tight but someone needs to seek some legal advice and see if a judicial review can be mounted. Otherwise we will forever be improperly treated by Medics who are keeping us ill. Who do not join up the dots and continue to treat every illness which invariably springs from the thyroid condition individually. We will continue to be treated by an outdated "gold standard" TSH reference range. We should not have to self medicate. We should not have to go private in order to be prescribed NDT. When will thyroid organisations take the bull by the horn - join forces - get legal advice - and if the advice is strong mount a legal challenge? I would willingly contribute to a legal fund. Enough is enough!

    I am sending big hugs to you Lola.

  • hi peacefullbliss, thanks for your reply yes its been horrible time having barium meal on stomach shortly, i know its all my thyroid but they all refuse to believe and then put us through these painful test, i too believe we should challenge nhs or goverment as to why we dont get proper treatment big hugs xx

  • lola, I've been posting some very enlightening videos regarding Hashimoto, explaining why even with optimal hormone replacement, there are still problems. There are good suggestions for self help and other areas to explore. I've posted it below to tegz.

  • Dear Peace, I hope you will view some of the video I have been posting. There is more to Hashimoto than the thyroid and why hormone replacement often is not enough even though lab tests may say so. I posted it below to tegz.

  • Dear Lola I can completely empathaise with the way you are feeling. I too was fairly recently diagnosed with Hypothyrodism and although I have been taking increasing doses of Levo I have felt very little improvement in my Health . Most days I feel as if I am running on empty . I also have gained several stones in weight

    with no real change in my Diet and I constantly feel in pain. I also live alone and I feel many of my Friends are becoming quite frustrated with my lack of energy and tiredness . I have gained some comfort reading people's stories and the information provided here and I do believe we are not alone in the way we feel. I also believe with time and patience we will begin to feel better and I think it's great that we can gain support from other people in the same situation as ourselves by reading there posts. Stay strong .. I am sure we will beat this condition .

  • thank you elephant 12 for your reply this is a horrible time for both of us, we get treated like hypochondriacs , i feel on my stronger days that we have to take on the goverment for not treating us properly, have you read about our illness on nhs website, no wonder my friends and family think i am being a drama queen and have all but gone from my life big hugs x

  • Please see my answer to Shaws [above]

  • to every one on this site , i dont mean this in a rude way its not in our interests to self medicate and seek out answers we should be getting help from doctors, we need to fight to be treated effectively not fight our way through books , meds and internet, we need as tegz said stand together and fight for our rights ,,,,, if doctors hands tied then fight to un tie them x

  • Agree Lola and in an ideal world that's what would happen,but we all know not in an ideal world! Unfortunately it happens in all walks of life,illnesses etc personally I don't think we are singled out for poor treatment most patients with other types of illnessess have to fight too I believe.not an easy road!

  • why can we not fight , doctors know we are not being treated properly , only 5o% are ok on levo what about other half???which other illness is treated so badly , if you do not want to fight its your choice but i am fighting , we only have one life cupi

  • i agree some ill people have to fight for funding but we are fighting to acknowledge that we are ill and not making up all these aches and pains , i have been more ill since diagnosis because the medication is wrong so i am not being treated and continually fobbed off with pills to make me feel happy

  • I have put up a new post suggesting a legal fighting fund in Thyroid UK.

    £100K should make a lot of waves! The guy who did the Lewisham case recently seems good.

    Update:

    I mailed Thyroid UK admin as Shaws suggested and await their reply.

    I think even discussion alone is a good thing -but do hope the site supports the idea, as it is so aware of the problem and had a good standing in the medical world , from what I have read about GPs using it.

  • thank you tegz, i too await there reply keep us posted

  • Here's the story..

    blog.38degrees.org.uk/tag/s...

    Thyroid UK can't support this idea of mine unfortunately.

  • you tried tegz so thank you , i will try another route

  • Great Tegz - I look forward to the update

  • tegz, when you have time, I'd like your thoughts about this series of videos. I think this man has it correctly. We don't have a thyroid problem. We have these problems:

    It's a series of 24 videos.

  • Yes, I've seen some of him already.

    This section does highlight why women could be more prone to thyroid issues then men - to the tune of 10:1.[Progesterone is low?]

    From my figures, a Prolactin level of anything much over half 'normal' scale [50-500] is noteworthy, which effectively means it will be missed by 99% of GPs!

    The actual prolactin level considered 'high' is not mentioned in the video, though.

  • Yes, more types of hormones, more problems. I am going to study these in more detail but am excited that there are other avenues to follow.

    He mentions dopamine, cytokines, serotonin in #1, #2, and #3 which, again, about ordinary GPs probably won't be of use. I wonder if we can control any of that.

  • I doubt the average GP has the inclination or energy to get into too many things hormonal- and that goes for many Endos by the looks of comments on here! [Barring Insulin]

    We can't control the equation as we're on the wrong end of the stick [though technically customers] but by self education and improved lifestyles can mitigate some of the deficiencies.

    The internet is invaluable for this -as high level info makes good earth for 'idea planting' as.GPs/GMC aren't going to change any time soon, are they?

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