FEELING VERY POORLY-----------------

Would appreciate some support. Have been on medication for just over a year. Originally I realised my symptoms - infections in ears and nose - pointed to underactive thryoid and told the doctor, he said oh no it is not, but the blood test proved me right and medication commenced. He said I was borderline but I insisted on taking medication as I was getting nasty symptoms. Was on 25 mg and then 50. Over that year it has been like a helter skelter, sometimes I feel well, other times awful. I did work out that the WOCKHARD tablets seemed to agree with me more and insisted they no longer give me the others. They made a fuss. I insisted and it turned into quite an argument, but I continued to insist and said I refused to take the others and they made me feel so awful. This now seems to be resolved. About two months ago I started to go downhill with an infection. I was soon taken into hospital with it and put on antibiotics. I felt terrible and could hardly move. It was quite scary coming home to be like that on my own - I live on my own. But the infection in my ears and nose did not clear up. The doctor gave me different antibiotics and felt even worse on these - PENICILLIN. Felt suicicidal and very nervous. These also did not work. Was put on another. This went on and on. Eventually I said to the doctor look this happened at the start. I couldnt shift infections. I am sure that my dose of medication for thyroid needs to be increased and it will help. The doctor said no. It is ear nose and throat and if we cannot shift it with the next antibiotics we will send you there. I said but if my immune system was ok all of these antibiotics would have shifted it. They did not agree. I increased my dose of medication. Within a few days my nose and ears were fine again. I continued to take the slightly higher dose and felt fine for a few weeks but then got headaches and after a bit splitting migraines. It is no good saying talk to the doctor. The doctor thinks each symptoms is separate to the thyroid thing. If I ask to see a consultant it takes months and they argue about that. So for now I am sticking to a lower dose and hoping the headaches and migraines stop.

This is all the info I can give, no good asking me for blood test results etc.

How many others struggle with your health yo yo ing with really bad days AND living with it and coping with it all alone? I often feel too low or ill to go out etc. Anyone else the same?

26 Replies

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  • What is your vitamin D level like? your B12 and iron? MaryF

  • Hi, as I said I dont have any results to post. But I DO eat a very healthy diet, a lot of fibre, make my own distilled water, take vitamins etc and have plenty of energy.

  • Your vitamin D needs to sit at 75 or above, if it is low, and most people in the UK have low Vitamin D, or even lower if ill, then your body will not fight infection properly, also gluten intolerance is common without having fully blown Coeliac DIsease and can cause malabsoption problems no matter how healthily you eat. I take vitamin D daily, 5,000 apart from height of summer, I have 8 conditions in total, serious ones. MaryF

  • I understand what you say and appreciate your reply but..

    I was perfectly well for weeks and suddenly overnight the headaches and migraines started, that cannot be due to a bad diet or malabsorption. My diet is far better than most and I take enough extra to make sure that if there is any malabsorption it makes up for it. I have loads of energy. As I said.

    I was really looking for support, not diagnosis. And as I said it is far worse when you live on your own with no family around. It would be good to hear from others who have that problem. This is for emotional support. I would go back to consultant if i wanted to discuss diagnosis, and we discussed that last week.

  • Fair enough, I hope you check your vitamin D, I do by the way have a slow thyroid, (on NDT), Systemic Lupus, Hughes Syndrome/APS, Sjogrens, Degenerative Discs, Interstitial bladder, Psoriatic Arthropathy and Steven Johnson Syndrome, I am well read, but clearly will not answer you again. Ps my diet is also excellent especially not eating gluten! I am sorry you feel bad. Hope you get better. MaryF

    ps I also run a forum on a different disease and like most we get everybody to check their vitamin D levels as a) it can make you feel very down, and b) it can make you more prone to infections etc if low

  • Hi Mary, Yes I gathered you had a thing about vitamin d the first time. if someone is on a good diet and takes a lot of vitamin d they should be ok - I do. And a deficiency would not explain my symptoms nor the fact that they suddenly came on overnight. It is best to join the dots when trying to work things out. Look at the whole picture. I don't feel down and I ve lost of energy, it is headaches and migraines. Which I have never had before. If it was due to a deficiency - which is impossible on my diet and vitamins etc. - it would not come and go like that. I can work that stuff out myself.

    Am very sorry that you have so many problems. It must be hard for you and running a forum must help you. Presumably you dont work and it helps to fill your day and give you something to focus on. I use my work for that. It can be hard to focus and work on something when you feel bad, am sure you understand that.

    Hope you get the emotional suport some of us do not get. It would be great to have family or friends to support me or even just to visit and spend time with. It makes a very difficult situation so much easier.

    Not just with practical things like someone getting your shopping but holding your hand, smiling and just chatting normally instead of trying to judge you or advise you.

  • I am a partner in a very busy business with three ill children, same disease as myself, in

    between working I run a forum, work out and generally do what I can to keep fit and well and i have 30 years medical reading under my belt. My migraines by the way are from Hughes Syndrome/APS and Lupus. People often have a thyroid problems and other relatives with either early strokes, heart attacks, other autoimmune diseases and also thyroid problems. Hope you get to the bottom of things, best wishes. MaryF

  • Thanks for the reply Mary. I have many years of studying, reading and qualifications in the medical field but tend to concentrate on the things that affect me - so I know a lot about illness I have had and still have but not much about the others. I also train volunteers on a national helpline who help people with certain health problems. None of my relatives had any auto immune diseases. But my grandmother and mother got dementia, which is just one of the reasons I researched and changed/improved my diet and lifestyle a lot a year ago. I did wonder if I have lupus too, as I have similar to the butterfly rash thing on cheeks, but do not have other pointers. It is good to keep busy and to keep the mind active when trying to get through the day. Running a business is then a blessing and a curse isnt it. Where it was a way to earn a living and to keep sparkly it becomes a mountain to climb.

    If it were not for my little dogs and my partner - the only human support I have - I wouldnt be able to cope at all.

  • Good for you, I help deliver talking therapies also! My last condition I found was Thyroid and it has improved and my others on NDT, plus LDN and all the usual obvious stuff, keep well. MaryF

  • GOD BLESS YOU AND ALL WHO USE THIS SITE AND SUFFER WITH ILLNESS.

  • Could be low magnesium - vit D uses it up. Epsom salts in the bath may help. Or you might just have a sinus infection. You need all vit levels a optimum to be good with a dose increase. Most endos and GPs don't know much about nutrition. I assume that you are taking a good quality probiotic to put back what all those antibiotics have destroyed.

  • As I said before I have a very good diet and take lots of vitamins and minerals. I also said that it suddenly changed overnight, so it wouldnt be anything to do with vitamins and minerals then. I am taking a terrific probiotic and also make my own live yoghurt which I eat daily. I know that most doctors and consultants know nothing about nutrition, this is why I spent a long time studying the subject and talk to a qualified naturopath regularly.

    A sinus infection would not suddenly come on, disappear fora few days, come back, go and come back several times in same week. And I have had lots of sinus infections before, am an expert on spotting them straight away. When I get one it is nothing like this. Have just got rid of a six week infection which started in sinuses.

    Was seeking someone to talk to and listen and support rather than someone who wants to rethink things and try to diagnose it.

  • I suffered with migraine and sinus infections for about 20 years and they used to come and go just like that. I find that getting a lot of magnesium helps and that being stressed (even by being angry or ill) can deplete vitamin levels very fast. I hardly ever get them now since I got my hormones sorted out and started T3. But my D3 and B12 levels were also rubbish and I wasn't using K2 (so it probably won't apply to someone a knowledgeable as you). I have a personality disorder which makes it impossible for me to do anything but give information, I'm afraid. At school and work everyone thought I was weird because I couldn't do chat and sympathy - some people can't.

  • Angel_of_the_North I know what you mean. Even when my kids are ill I am sympathetic for about 24 hours and then I'm done :-D I am a problem solver, even now with my own health its almost like a challenge. I can't just sit back and wait for help I have to research and try and sort it myself.

  • snap

  • Is it possible for you to order some private blood tests? Without test results members can't really advise you on what to do. Private blood tests aren't cheap but they are really important if your GP refuses. Blue Horizon is the company most people here use. If your GP is not being helpful then your only option really is to research with the help of this group (and also Stop The Thyroid Madness website is really good) and start to help yourself.we shouldn't have to but it beats staying ill!!

  • Thanks for the reply. I saw a consultant last week when I was feeling perfectly well. He said I had been right to increase my dose when the infection would not budge and as long as I feel ok to continue with it. Only a week later I DONT feel ok. Headaches and migraines. And the strange this is that my take my medication just before I go to bed yet the headaches and migraines dont come on till about twelve hours or more later.

    Am not going to get blood tests. Have had lots of them over the past year. Prefer to go by how I FEEL. What use is a blood test that tells me to stick to a dose that is making me ill? The consultant agreed with me. He said to me if you feel better on a bit more or a bit less go for it.

  • Because vit D, B12 or ferritin deficiencies can also make you ill and affect t4 conversion. I agree that the TSH test is pretty useless but others are very important.

  • Could you post results of test you have had?

  • Hi. As I said before. I DO NOT have any test results. The consultant told me I was right to increase my thyroxine when the infection wouldnt shift and I had to wait months to see him.

    And it cannot be anything to do with vitamin or mineral deficiencies when my diet is so good and I take lots of vitamins and minerals. I have plenty of energy and get plenty of sunlight. It also would not make sense for it to suddenly come on overnight when everything felt good the day before. For two days I did not take my thyroxine and felt much better and went downhill again when I went back them. So nothing to do with vitamins and minerals.

    I also said that it was emotional support I seek, I can put two and two together on the facts myself, due to struggling with this and being alone with no family nearby, I would go to consultant for diagnosis or change or medication.

  • I'm sorry, I was just trying to help x You said you had had lots of tests over this last year. Hope you feel better soon.

  • No need to say sorry, I am sorry too. You know how it is when you feel awful, you have a short fuse and get a bit snappy. Do not mean to take it out on you. But it can be exasperating when you post and people dont read it properly or go off onto tangents or say illogical things.

  • Can empathise with living on your own and coping with rubbish health. In fact I recently had a pop at my son for his lack of interest in my health especially as I now have a diagnosis of Lyme disease. I often don't go out of the house for days and my feet and ankles are so swollen that it makes walking difficult.

    Hang in there decembersignup.

  • Hi Cinammon Girl - love the name. Thank you for actually reading my post properly and responding in a way which is helpful and which I asked for! I do appreciate it and have sympathy for you too. It is so much easier when you have family living with you or nearby. Even if only for someone to talk to and spend time with. Am sorry but do not know much about Lyme disease, sometimes my ankles are swollen but do not make it hard to walk. Because I am at home a lot I got a good indoor exercise bike, same quality as one found in a gym, and try to use that every day. But when you are feeling poorly or very sad it is hard to motivate yourself to do it! Do you live near your son? The only family I have is my mother, she is of course very old and hundreds of miles away, so we can only chat on the phone. She is not a sympathetic type of person, if I am feeling bad she will say well it must be your fault telling me that if I had gone to bed earlier or something then I would not have my problems. When I first said about my thyroid and taking medication and having problems losing weight she went on and on about what rubbish I was talking and how it must be because I eat too much. She had never heard of a thyroid yet she was also an expert on it. Hope you have a good day today whatever you end up doing.

    There is a saying Cinammon. If life deals you lemons make lemonade. So I to see it as a good thing when I at home alone a lot, when I dont feel too bad I get stuck into my dvds, books, work, hobbies etc and it can be quite good. But when you feel bad it is so hard to. You know that, I realise that.

  • If you have Hashimoto's (high thyroid antibodies) need to check both TPO and TG antibodies as can be either or both, then going gluten free may well help.

    Suggest you get copies of all past blood tests and read through them. Post on here if you need advise.

    As NatChap says, many of us have had to resort to private blood tests to work out what is going on. Interaction of thyroid with B12, Vitamin D, folate and ferritin is very complex. Most Hashimoto's patients find need all four at good levels (often needing to supplement)

    Sadly on NHS you are unlikely to get TPO antibodies checked more than once, and very rare to ever get TG antibodies checked. Another reason to get private test done.

    Going gluten free can reduce symptoms, calm immune response and over time lower antibodies.

  • Not sure you read my post...It did say looking for emotional support.I only explained what was going on to explain why, not because I need others to work things out and advise me. I saw the consultant last week and felt totally fine then and would have brought up things with him otherwise, he is, after all the qualified expert. I know a fair bit about this subject and preventative health care, I know gluten free can help some people, with others it does not help at all, and many go gluten free when it would be better for them not to. I rarely eat gluten and that wouldnt cause me to go to bed feeling fine and feel awful the day after either. I appreciate you are trying to help but it does get irritating when people assume they know more or go off on separate tangents.

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