Frightened about what's happening to me

Good evening everyone, these past eight months things have been getting worse and worse, no matter what I do. I always have a tight and sore chest, my pulse is always high and not really helped by propranolol, breathing often laboured. All my symptoms are much worse, in particular the fibromyalgia and my ice cold legs and thighs , they are so cold it's painful. Has everything got worse because of my very early menopause. What is happening I am frightened and don't know what else to do. I am still only getting a couple of hours light sleep a night. Best wishes

41 Replies

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  • Hi kitten whiskers, I have a diagnosis of fibromyalgia and get cold legs and feet which do get so cold they are painful too. Just something to look into, i was prescribed propranolol for Migraines but I haven't agreed to take it as I read it's contraindicated with thyroid issues, if I remember rightly it prevents the absorption of levothyroxine so if you are taking levothyroxine it may be worth looking into that. Is it pain from the fibromyalgia that keeps you awake? Are you taking any medication to help you sleep?

  • Good morning Carpa Bob,

    Thank you for your reply, I do take various things for the pain but I haven't been able to sleep for years, I just feel exhausted but wide awake. I always feel worse as the evening approaches and nights are just awful, I feel terrible and my breathing and palpitations don't help.

    To help me sleep I take Melatonine and occasionally an amitripline.

    I was given Propanolol for slowing my heart down, but I only take that when I really need to like when the pulse is around 126bpm

    Do your legs feel lumpy under the skin? my feet are always warm - it's very odd, recently started trigger point therapy - that is agony

    Best wishes

  • Yes it's horrible isn't it! it's so frustrating when you can't sleep and I worry about disturbing and waking my hubby which just makes things worse! I have given up trying to sleep and focus on resting quietly sometimes this leads to sleep!

    I have heart issues too, the Palpitations are annoying sometimes coughing helps settle them. Pulse wise mine is normally under 60 but does have episodes where it goes up to around 250 which can be scary! Have you discussed your heart issues with a doctor?

  • Hello CarpaBob,

    Oh my goodness, my pulse has never gone upto 250, that must be terrifying, do you or the doctors no what causes that?

    I have not discussed my heart with the doctors, I try to avoid them.

    Sadly can't get much quiet time, we have some very noisy and inconsiderate neighbours.

    From my Fibro book, I know it is contributing to my lack of sleep, it's just such a vicious circle, so hard to break.

    Best wishes

    Debs

  • No idea why it happens, have had one of those two minute heart traces which came back fine so docs haven't looked further. Probably would be a good idea for you to get it checked though.

    I can so relate to noisy neighbours! we had some in the last house we were in dogs Barking in the garden, shouting banging, we also weren't allowed to park in front of our house as one of them had trouble parking and insisted we left the space so they had more room to park. They got aggressive and put a brick through our car window. It was a year of hell, my inlaws offered to pay for us to move in the end. It's the worst thing to deal with isn't it, makes you stressors at a time when stress is not good for you.

    Which book have you got? I got the fatigued to fantastic by Dr teitlebaum.

  • Good morning CarpaBob,

    Oh goodness, what horrid neighbours you had, disgraceful behaviour, it can be very stressful, last year was hell for us, in the end the police had to step in, they are not as bad as they were but keep deliberately trying to wind us up - at least in the winter we get peace, so glad you got to move away.

    The book I have is Leon Chaitow - Fibromyalgia and Muscle Pain: Your Self-Treatment Guide, it's fantastic, I haven't heard of Dr Teitlebaum, I will have to read up on him.

    One thing that has been really helpful is Magnesium Malate - I have only been on it a week and it's eased my pain by about 50% already, a good quality one is required for maximum benefit.

    Typical of the doctors not to look into your very high pulse,

    I think it would be the same for me, whatever illness I go up the surgery with, I get told it's my thyroid and that's the end of that.

  • Yes I find the fibromyalgia diagnosis gets blamed for most things too! Dr teitlebaum has fibromyalgia himself and has done quite a lot of research into it. I will have a look at the book you have too, I am determined to get back to some form of normal life one day! 😀

  • Thats the spirit CaraBob, A positive attitude is so important, when I feel really low I watch the documentary about Norman Cousins - the battle he had to get well, is unbelieveable, but he never gave up and got completely well - against all the odds. Its most uplifting

  • KW,

    Having looked at your previous posts, all your symptoms (including pain, low oestrogen, breathing issues, low body temp, etc, etc ) can all be attributed to low thyroid hormone.

    What are you medicating and how much ? Do you have recent thyroid hormone //iron//nutrient test results to post (complete with ranges) ? ?

  • Morning Radd,

    Most of my symtpoms are to do with low Thyroid, but can high pulse rate be?

    Medication I take a tiny amount of liquid T4 once a week, it's all I can tolerate.

    In Jan my TSH was 12.6 and then in March it had dropped down to 5.6 but that never altered my suffering in anyway, infact if anything I felt worse.

    I haven't had my Iron checked for years, doctors only seem to like to check the TSH so I am afraid thats all the info I have got

    Best wishes

  • Well, it's time to get private labs done, isn't it! You need :

    TSH

    FT4

    FT3

    TPOab

    TgAB

    vit D

    vit B12

    folate

    ferritin

    Your TSH is still too high at 5.6, you need it at least one or under. But it's not the TSH that causes your suffering, it's low T3, and you've never had that tested!

    Seems to me, that a lot of your symptoms are caused by low nutrients, as well as low T3 - and, what's more, your T3 could be low because of low nutrients, but you won't know that until you get the tests done.

    It's time to take the control and bypass your useless GP! You have suffered long enough. Knowledge is power. And, the first step is to get your own labs done - all the above can be done with a finger prick test - and post the results on here - with the ranges. We will then give you the knowledge to fuel your power, end your suffering and brighten your future. Off you go! :)

  • Hello Greygoose,

    Thank you for your positive reply : >

    I am supplemented to the hills, that is why I am suprised I am feeling so bad, infact worse than for quite some time.

    It doesn't really matter what the tests say because of my intolerance to thyroid meds, it is like poison to me, this is why I am trying alternative routes, as thyroid medication, in any form can never been an option.

    Best wishes

    Debs

  • Well, supplementation has to be done properly to help. You need to take what you need, and the amount you need. More is not always better. Did you test your vit D etc before starting the supplements?

  • Hello Greygoose, yes I did, my Vitamin D was extremely low, I was given a two week course from the doctor which was so high, that even a few years later my Vitamin D was still very high indeed.

    I have requested another vitamin D test so should get the results next week.

    Best wishes

    Debs

  • And what about vit B12, folate and ferritin?

    If your vit D is still high, I imagine you aren't taking vit D3. So, what are you taking? You could be taking something that doesn't agree with you. How/when are you taking things? If you take them in the wrong way, you won't get any benefit from them.

  • As carpabob says propranolol blocks the conversion of T4 to T3 and is sometimes used to prevent hyperthyroidism.If you are hypo it will make you worse.

  • Hello Treepie,

    I only take the Propranolol occasionally when my pulse is really high. A high pulse isn't a normal symptom of Hypo, so why do I have it?

    Best wishes

  • Yes it is a normal symptom of hypo. As is racing heart and high blood pressure. Everything and anything can be a symptoms of hypo, don't be fobbed off by ignorant docs. :)

  • Can also be a symptom of low iron and or B12, or even full anaemia (as are breathing problems)

  • Thank you Angel_of_the_North, I will request an Iron test.

    Best wishes

  • Hi Kitten-whiskers,

    I also have a high pulse rate at times and someone told me on another forum, it is because when we are hypothyroid, our body is not producing the thyroid hormones our body needs so to compensate adrenaline is produced and it is the adrenaline that causes the high pulse rate.

    The person gave me a passage from Dr, Skinners book explaining this, I will try and find it and post it for you.

  • Good morning Lucylocks,

    Thank you so much for posting this, my pulse has been high even before thyroid medications and it has baffled everyone, this has really helped me have a better understanding and I am not worrying so much now. What is described fits in with what I experience.

    Thank you Lucy, I really appreciate this

    Best wishes

    Debs x

  • Hi Debs,

    I am so glad it has helped you understand and has stopped you worrying, as it also really ease my mind when I read it.

    Looking back even before I was diagnosed hypo. my pulse rate was high, most probably because we are hypo. along time before been diagnosed.

    In fact I know when I am under medicated now as my pulse rate rises.

    I know you cannot tolerate much levo. have you tried T3 ?

    Best wishes

  • Hello Lucy,

    It all starts to fit in to place, I really am relieved, I was thinking other things were going on. Thank you so much.

    I wasn't diagnosed til I was about 28, but looking back it looks like things were going wrong when I was a young girl and it was picked up accidentally.

    I have tried T3, Nutri Thyroid & Westhyroid pure and can not tolerate it either, All thyroid medication is like poison to me, which makes life so much harder.

    I hope you are feelng well : >

    Best wishes

  • It must be awful it you cannot tolerate any of the meds. I hope you find something soon to help you.

    I am currently taking 1.5 grains of W.P. Thyroid, I have had a bit of a rough time trying to increase the dose. With every increase I would feel O.K. for a few days then feel worse again so would have to reduce.

    I am O.Kish at the moment (touch wood) but there is room for improvement. It really is a minefield trying to find the right meds. and dose.

    Good luck and best wishes.

  • Oh no Lucy, sorry to hear that.

    Not sure if this might be useful - have you seen a homeopathic nutritionist? I saw one for the first time last week, I went through my long list of aliments and I choose starting on the fibro pain, the thyroid and helping getting some sleep - so she gave me a homeopathic salt remedy for the thyroid - it has a tiny amount of hormone in but is mainly designed to get the thyroid working on its own, also a homepathic remedy for helping to relax the muscles to stop them knotting up and also to calm the mind, along with magnesium malate - and in 6 days my pain has gone from being 10 to being about 6, so I am hopeful, she did say about 9 months to make real improvement - I would say it is paramount to find someone really knowledgable otherwise its not going to work - I was very impressed with her and she said she had got three patients completely off levo - yippeee

    Best wishes

    Debs

  • That sounds really interesting, I may have to look into it. I hope you continue to improve with her help.

  • Hi

    Here is the passage from Dr. Skinner's book. Hope it helps you understand how you can get a fast pulse rate when hypo. especially paragraph three.

    Best wishes.

    Let me quote a passage from our late Dr Skinner's book on palpitations .....

    Palpitations are a frequent source of confusion. These are sometimes associated with panic attacks and often occur when the patient is lying in bed or after alcohol, coffee, emotional upset or any combinations of these factors. The patient will describe their heart beat as going 'bump', 'thump' or 'higgledy-piggledy' and if an attack is 'fortunately' present at consultation, it is possible to discriminate extra systoles from atrial fibrillation, but of course, an ECG is reassuring, especially for the patient. It must be emphasized that hypothyroid palpitation are different from regular fast bounding full pulse which can occur in thyroxine over-dosage or in a patient who is thyrotoxic. I emphasise these points as a number of patients are considered to be 'clearly hyperthyroid' if they have tachycardia and/or palpitation and I know patients who have been given anti-thyroid medication with carbimazole with catastrophic outcome until it was stopped and the patient given appropriate thyroid replacement. Cessation, reduction or palpitations is one of the 'early responders' to the thyroid replacement which is helpful, as palpable and /or irregular heart beat is a frightening sensation particularly in patients who are already anxious, confused and often deeply fearful that there's 'something dreadful going on inside them' and they are right in a way.

    Colleagues may be surprised that low pulse rate has been given a relatively low discriminatory position. In my experience, bradycardia is more frequently present in moderate to severe hypothyroidism, but it can be difficult in the environment of the consulting room to obtain a 'resting' pulse rate; patients are often fraught and anxious and it is helpful to measure the pulse rate at both at the beginning and end of consultation when (hopefully) the patient will have settled down and be less agitated; I have found differences varying from 110 per minute to 60 per minute and the pulse rate measured when the patient has just hurried along the street and climbed the stairs to your consulting room can be quite misleading.

    An interesting and critical diagnostic point is that a number of severely hypothyroid patients can have a tachycardia and not bradycardia presumably relating to a compensatory mechanism to drive thyroid hormone to thyroid-starved body tissues or perhaps driven by the adrenal glands or even by chronic anxiety which patients reasonably experience from the manifold symptoms of hypothyroidism. It is a therapeutic delight when tachycardia is reduced by thyroid replacement and most patients are aware of their change in heart rate without actually taking their pulse. I emphasise that absence of bradycardia or presence of tachycardia should never be taken to exclude a diagnosis of hypothyroidism.

    Low blood pressure is quite common and relates to low efficiency of myocardial musculature reducing systolic thrust with poor tone of the vascular musculature reducing pressure levels which in turn decreases cardiac efficiency. I hope this is sound stuff; it's been years since I studied physiology.

    High blood pressure is equally frequent and can also be 'explained' on a similar basis to tachycardia, namely the bldy attempting to supply thyroxine through a sludged-up system; there is no end to the usefulness of homeostatic explanations.

    Interestingly, while tachycardia and moderately raised blood pressure can be resolved wit three or four weeks of thyroid replacement, low blood pressure tends to slowly resolve over a period of ten to sixteen weeks of thyroid replacement. This difference is commensurate with the proposed aetiologies where compensatory mechanisms are relatively easily reversed while dysfunction consequent or chronic muscle ill health is a slower process. (unquote)

    From a personal point of view I can agree. I am one of those hypothyroid patients who never had bradycardia.

  • I am sorry to hijack your thread KW but this is so interesting! I too have palpitations, ectopic beats and occasional racing heart. I noticed them when I was hyperthyroid and hypothyroid and to be honest, they were worse when I was very hypothyroid. I also placed some of the blame on Levothyroxine but I have now been off medication for 2+ months and I am still getting them now and again!

  • Hi

    You say you have been off levo. for 2+ months, what other medication are you taking?

  • Hi lucylocks. I am transient hyperthyroid with Hashimoto's antibodies so I was on block and replace. No medication at all now and discharged from Endo's care!

  • Sorry to hear that Chloe, it seems we have to do lots of differen't things to get well. Syptoms can be so similar it is hard to tell, a high pulse can be to do with food intolerance as can palpiations.

    There is some fab replies and lots to be learnt.

    I hope it helps you as well

    Best wishes

  • I'm not sure about the meds, fibro and levo but the tight chest and short of breath thing sounds like you might have asthma. Have you ever had it or talked to the doc? Has the air quality around you changed (Building works, pets, mould, damp, pollen, temp/humidity - whole host of things can be triggers)? Or have suffered from a bad respiratory infection in the last year?

    I've had asthma all my life and it's been really controlled (my mum made me swim a lot so that I had big lungs to compensate) but I had loads of the same symptoms last year- constantly tight chest, difficulty in breathing (or the feeling of getting enough oxygen), bad sleeping, extreme tiredness (ok that was the hypo as well but once I dealt with the asthma it was a bit better) and it turned out that because 1/2 my block was having building works all the dust plus constantly being ill (thanks, hypo) made my respiratory system really compromised. Bought an air purifier (I'm dust and mold triggered) and it all went away, asthma back to totally controlled level, no need for meds at all.

    Having said that it does sound like you're under medicated, especially since Dr. Lowe suggests that Fibro is a hypo thing? I also had seriously cold feet (but not so cold it hurts) and being optimally medicated (changed to ndt) helps (and the achiness!) One things you could try though is hot foot baths daily as this help to improve your circulation (apparently baths don't work the same way) so more blood is going to your limbs- less cold!

  • Good morning Vixcixvix,

    What a great reply, thank you. When I was a child I had asthma growing up and was on inhalers, doctor said I had grown out of it and was taken off inhalers and to be honest I never really had any problems until after I was given thyroid meds - then things spiralled out of control. I haven't spoken to the doctor, but I will make an appointment - if I could get some relief that would be fantastic - thank you everso much.

    I will also have hot foot baths every evening, see if that helps.

    I am undermedicated but I just can't tolerate the medication - any form,

    Best wishes

  • Hope you get better!

    I read a little more of your conversation here and just to add as far as I understand, palpitations *can* be a symptom of under medication.

    As to medicine tolerance, have you tried t3 or ndt? I know u mentioned that you're spending a ton on supplements already, but might be worth trying either even if it means taking the plunge and self medicating. Ndt changed my life and at only 37£ for 2.5 years worth, it's by far working out the cheapest of all the "supplements"! I understand t3 can be obtained at a reasonable price too. It might be worth looking into this avenue as sadly once the thyroid starts to chonk out it's not something we can heal and make it work optimally again :(

  • 5.6 tsh is still too high. Have you e er run a private thyroid panel to see what your t3 and t4 are?

  • Hello Aspmama,

    My FT3 & FT4 were tested about four years ago and were 'in range' I am spending a lot of money on supplements and alternative therapies that I couldn't justify paying for blood tests too, especially as the worse I feel the lower my TSH is - so they are just not reliable enough

    Best wishes

  • The FT3 is the best guide to what is happening. TSH not telling you much. "in range" doesn't tell you much either. Air hunger can apparently be a sign of thyroid deficiency as well as B12. I do sympathise with your plight.

  • Thank you Aspmama, I will keep trying differen't things until I am well.

    I don't want to be stuck like this forever

  • I suffered with a tight chest ( it would feel like I had something pressing in the centre so that I had to take a really hard deep breath just to expand my lungs) also just wearing a bra would make it feel worse even when it was worn loosely. This was before I had thyroid issues but was suffering with severe adrenal fatigue. I don't have the symptoms anymore.

  • Hello Familymatters,

    I am glad your not suffering anymore, I do have adrenal fatique.

    Best wishes

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