New here, no idea what is happening to me, nobody is helping

Hi all. I have been directed to this forum by a friend who has thyroid problems and thinks I do. The GP doesn't listen, they have already decided I am just neurotic. I have recently been told I may have fibromyalgia. I have been on antidepressants for anxiety, panic attacks and depression for around 20 years (15mg Escitalopram). I am 44 years old.

My symptoms are:

fatigue, heaviness in muscles, muscle and joint pain.

Difficulty remembering things, thinking about what I am doing.

Always cold

Tinnitus

Constipation (I take 2 Laxido a day, have done for 2 years now)

Irregular and painful periods

headaches

broken sleep, very vivid, weird dreams

panic attacks, palpitations, breathlessness, tingling in my hands and arms

I have had blood tests, GP just says everything is normal. I haven't asked for the full information like all the other posts have listed, I wouldn't know how to do that, I am anxious and have very low self confidence. Three weeks ago I had a seizure whilst I was asleep, now waiting for an appointment with neurology. Might be 12 months, in the meantime I have been stopped from driving. I feel like I am just shoved out of the way, nobody is really bothered. My mood is low, but I am not well and nobody is listening. That's why my friend referred me here. Thanks for reading, any advice would be gratefully received.

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25 Replies

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  • Hi Dee215, welcome to the forum.

    If you live in the UK, it is your legal right to have a print-out of your labs, under the 1998 Data Protection Act. So, first step is to call in, or ring the receptionist, and tell her you would like a print-out of your latest labs, please (big smile). She might ask you to go back some other time, to pick them up, if she's busy, but if she tries to fob you off, just remind her she's breaking the law. If that doesn't work, write to the practice manager. But, you shouldn't have any problem.

    I'm afraid that one of the symptoms of low thyroid is low self-esteem. But, if we want to get anywhere, we have to over-come that, and take charge. Doctors know very little about thyroid, and very little about interpreting blood test results, so you have to learn about it yourself. So, when you get your results, post them on here in a new question, with the ranges, and someone will explain them to you. You'll soon get the hang of it! The most important thing is to know exactly what was tested, and exactly what the results were. That's step number one in taking charge of your own health! :)

  • Thanks

  • Don't mention it.

  • You also want to know your vitamin D, folate, B12 & ferritin levels. GP may have already tested these, if so get these results too.

  • Hi Dee215 & welcome. I can't really add anything to the great advice you've received. Apart from to say id recommend you do lots of reading on here including the links that are regularly included.

    Your symptoms do sound like you are hypothyroid, but as the wise greygoose has said we can't say without seeing your blood results. It may sound a strange question but what are your eyebrows like ? Does the last 1/3 of them not seem to grow / are they shorter than most peoples ? Do you pluck them ?

    Your in very good company here as we can identify with how your feeling and have / still feel the same with the same symptoms. So please feel the embrace of our collective empathy. P!ease never hesitate to do a post whether its blood results or just because your feeling fed up and would like a bit of cheering up.

  • My friend is always looking at my eyebrows, and they are like you said, the last 1/3 doesn't grow, they just disappear

  • Classic sign of being hypo

  • Yep as SlowDragon says classic sign of hypo, that's why I asked. I just thought I'd add that even if your gp is not forth coming with treatment even with the back up of evidence you'll receive when you post your bloods. I suspect your bloods will be something like - t4 low / bottom of the range & TSH at the top of range. There is always self medicating. Its not as scary or difficult as it sounds. With the great guidance you can gain from the generous and knowledgeable people on here, I'm sure you can start to feel better soon. And hopefully dump the anti depressants as I have for the first time in years now I'm on t3 👍

  • Would love to dump the antidepressants. Is the constant hunger a symptom? Will it go away if I get properly treated? Or do it myself? That's the thing that gets me down most of all. My body aches and I get really tired so I can't do much, but I am constantly hungry. It makes no sense

  • We could do with shaws to pop up with the link to hypo symptoms. Alternatively if you search on the thyroiduk website the list is there some where. Sorry I can't do links on my tablet.

    Its not one I've heard of as a classic symptom. But when we are tired and are bodies are struggling because they are not well, it makes sense that we crave more food / fuel for our bodies to try and cope with getting through all the daily stuff we have to do. That was a long sentence ! 😂.

  • I'm not Shaws, but maybe this is the hypo symptom link you're referring to... thyroiduk.org.uk/tuk/about_...

  • I've just had a thought about your hunger symptom. Do you eat gluten ? Do you have any other stomach problems ? Tummy ache, diarrhoea, bloating ?

    The reason I ask is I'm coeliac - full on gluten allergy. Even though I'm very strict I still have the occasional problem with cross contamination. One of my symptoms is what I call my grippy empty feeling. It feels like an acheingly empty feeling, a grippy hunger.

    May the hunger be because of gluten allergy / intolerance ?

  • Hi. I don't have the other symptoms, only constipation :-( It really gets me down though. Could gluten free help?

  • Constipation is a classic symptom of hypothyroid. Most people that are hypo are hashimotos. Hashi is an auto immune disease where antibodies attack the thyroid and damage its ability to function properly. Gluten sets off this reaction. So eating gluten sets off the antibodies diminishing the thyroid quicker. So it is always recommend for hashimotos patients to go gluten free.

    Hashimotos is diagnosed with the anti body tests that humanbean & others have mentioned.

    If your not having any other symptoms then it sounds like your probably not coeliac, another auto immune condition.

    So the hunger is probably just the body needing more fuel to cope at the moment.

    Hope you get a resolution soon 👍

  • Thank you so much

  • Hi Dee

    Ive just found a couple of links you may find interesting. I appreciate theres a lot to get your head round at the moment. And to start with you need to confirm you need levothyroxine - t4 and start that journey.

    I was diagnosed hypo at 18, a scary 30 years ago now. through that Ive spent most of those years on anti depressants. I have been a bit under medicated through that. but mainly Ive been missing out on the amount of t3 I needed. this first link talks about the benefits of t3 - liothyronine.

    " Most patients who stand to benefit from t3 fall into one or more of the following categories - ........

    History of bipolar or TREATMENT RESISTANT DEPRESSION."

    This may not be the case for you but if levo doesn't fix the problem then there are other options.

    restartmed.com/t3-medication/

    This next link may be of help to you now. Theres some good general advice and probably some new insights. But personally I would approach some of the supplements with caution / do more research to see if they are for you. especially regards - Ashwagandha and Rhodiola Rosea.

    With regards other supplements. its always best to get tested first to see where your levels are to start with. Especially with things like vit D. Its unlikely but possible you don't need it. But supplementing without testing can be dangerous as it is toxic at high levels in the body.

    hypothyroidmom.com/10-ways-...

    Hope that helps & happy reading : )

  • Don't be bashful :) Doctors appear to be the least knowledgeable about anything to do with the thyroid gland or it's importance in running our whole metabolism, and the need for sufficient thyroid hormones to enable us to have optimal health without clinical symptoms.

    The first lesson is never to accept the words 'normal' 'fine' or 'ok' with regard to blood tests so always, from now on, ask for a print-out of the results with the ranges for your own records and you can post if you have a query.

    T3 is the Active Hormone and is the only hormone that drives our whole metabolism and the brain and heart need the most. We get prescribed levothyroxine (T4) which should, in theory convert to T3 but doesn't always sufficiently.

    Request a new blood test. It has to be the very earliest possible, fasting (you can drink water) and if you were taking thyriod hormones you'd allow a gap of 24 hours between last dose and test.

    You need a TSH, T4, T3, Free T4, Free T3 and thyriod antibodies. Vitamin B12, Vit D, iron, ferritin and folate.

    The ones the GP (or lab) cannot do you can get a private test from one of our recommended labs.

    thyroiduk.org.uk/tuk/about_...

  • I've never had a fasting blood test. Always at the end of the day after work. My hair falls out too, the plug hole is always bunged up with it. And I am permanently hungry. Even when I have just had a meal. Is that a sign? It gets me down.

  • Well, that's why you've never got diagnosed. TSH is highest early in the morning, and lowers throughout the day. By the time you leave work, it would be pretty low. It also lowers when you've eaten. But, you won't catch a doctor telling you that!

    Some hypos get more hungry, some lose their appetite. We're all different. But, certainly, losing your hair and depression are symptoms of low thyroid.

  • It really sounds as if it is your thyroid

  • When asking for copies of your blood tests, bear in mind that receptionists are not usually allowed to give out results without a doctor's permission. So you might have to make the request one day and pick the results up the next. It isn't the receptionist who makes the rules, it is the doctors in the surgery, so be polite to the receptionists, they are just doing what they are told. (Although I would agree that some receptionists can make it difficult to stay polite!)

    Whenever you want to discuss getting copies of your results make sure you take some form of identification with you.

    nhs.uk/NHSEngland/thenhs/re...

    nhs.uk/chq/Pages/1309.aspx?...

    nhs.uk/chq/Pages/2635.aspx

    It would actually be easier to check results if you could view them online. Some surgeries allow this, some don't. Eventually they will all have to allow it, even though they really don't like it!

    emishealth.com/media/1537/0...

    nhs.uk/NHSEngland/AboutNHSs...

    To see anything online you have to register for the service first, and identification must be shown.

  • If you get copies of blood test results, post copies of them in a new post on here. If you take a photograph of your results and post that make sure you hide your personal details.

    Ideally, we need to see the following, where possible :

    Test name/test result/units of measurement/reference range

    For example :

    TSH 4.5 mu/L (0.27 - 4.2)

    Being assumed to be neurotic and/or depressed and/or drug-seeking is very common. It happened to me for over 40 years. You have my sympathies and I can empathise completely. Many people on this forum can, because such behaviour from doctors is very common.

    One of the big issues we have is that doctors see reference ranges as being like goalposts. So, if three patients see their doctors and have their ferritin (iron stores) tested, and end up with results like this, for example, all the patients will be dismissed and told they are absolutely fine and their results are normal. Assume the reference range in each case is 15 - 150 ug/L :

    Patient A : 15

    Patient B : 85

    Patient C : 150

    All these patients will be told by their doctors that their ferritin levels are fine. But in reality the person who is most likely to feel the best is Patient B because their result is roughly mid-range.

    Patient A with a level right at the bottom of the range is likely to feel worst. They may be able to improve their well-being by supplementing with iron. But such a solution will never be mentioned by doctors and treatment won't be offered.

    For a fee, people in the UK can have testing done privately without requiring the permission of their doctors, and it isn't as expensive as you might imagine. For more info :

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

    If you want more specific help, and suggestions as to which test(s) to do, just ask.

  • Just keep talking, please. Tell me what tests I need. I am so fed up of feeling rubbish all the time. I am 44, feel like 94.I mowed the lawn this morning. Now I am shattered, just lying on the bed. Aching legs and arms, heart pumping out of my chest, deafening Tinnitus, all I have done is mow the lawn for goodness sake. It shouldn't be like this.

  • A very good first step is to do a mixture of thyroid and some basic vitamin/mineral tests.

    Blue Horizon Medicals :

    bluehorizonmedicals.co.uk/t...

    Medichecks :

    medichecks.com/thyroid-func...

    Both links above cover the same 11 tests for £99.

    TSH, FT4, FT3, TT4, Thyroid Peroxidase Antibodies, Thyroglobulin Antibodies, Ferritin, Folate, Vitamin B12 (NOT ACTIVE B12), C Reactive Protein, Vitamin D (25-OH)

    Register with both websites and you will get emailed information on any special offers they have. Both companies have special offers fairly regularly.

    The tests I've given above are often done as finger-prick (microtainer) tests. After you order the test a kit gets sent to you through the post with lancets to prick your fingers, tiny little test tubes to drip blood into, packaging for sending the test tubes back to the lab, and full instructions on what to do. Then when you have produced the necessary blood samples, you post them back to the lab and results are sent to you via email (if you use BH) or you are notified to check your account for your results (if you use MC).

    There is another option - vacutainer tests. They are the same price as the finger-prick tests but they require a full sample to be taken from a vein in the arm. People who don't cope well with finger-prick tests might prefer to do these. If you know someone who can take a blood sample for you then that's fine. You can also pay for someone to take blood for you in some circumstances.

    Once you have your results, post them in a new post on here, obscuring any personal details and ask for feedback from the members.

    Hope that helps. :)

  • Hello Dee215, have you looked at the symptoms of Lyme Disease?

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