follow on from yesterday's post - down in the dumps

Hello everyone,

Hurt by what was said and wanted to put across how I feel.

I have always found this site to be brillant but things seem to been changing, I was just looking for a bit of support because things were really bad and I was feeling dreadful, the reponse on a few of the replys was that ''It couldn't possibly be and must be in my head" wrapped up with nice words, but the meaning is still the same - you are beginning to sound like Doctors.

I have spent a majority of my life being really ill, my illness wasn't picked up for donkies years, so is it really so hard to believe that because my body was so deficient for so long that now it has a problem excepting it?

What I have ever written on this site has been true, I have bared my soul and openly talked about what was happening and how I was feeling, oddly enough now the doctors believe what I am saying, it's some of you on hear that don't.

56 Replies

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  • I do feel for you girl sorry to hear hun big hugs

  • Thank you HypoHippo

  • I am new to site, and found it ok at the moment, like you I have been ill for years with no proper diagnosis, just lots of antidepressants and therapy, I have been told I don't need therapy and I certainly don't need antidepressants, just masks whatever it is, I have been told it's all in my head, my gp is the same I have had lots with moving around, everytime I go and I only go when feeling like death, everything is normal b.p heart rate temp, even though I am burning up, heart jumping out of chest, anxious and low, jitters swollen throat, feeling like I have had 10'red Bulls then in th next breath sleeping all, so yes I believe you, I hope you get your problems sorted soon, some days I just want to give in it gets that bad.

  • From reading between the lines on doctors and suffers alike it may be that men don't get the same hormonal swings and reactions that women get, Many say their female GP is understanding more than male ones .I get the feeling from male endos that they are understanding up to a point but have no weaponry that allows them to treat patients varied symptoms with the current attitude and training. This may be worse when presented with a female patient- no way of telling, of course.

    The fact that man have a lot more testosterone than women and it is used in the thyroid conversion chain could make women more vulnerable to disregulation- which as we know makes life difficult -and treatment tricky- even with the best will in the world but sadly lacking overall in the Thyroid field.

    The GPs depression comments seem to be mostly cop outs where they have to say/do something but don't know quite what!

    Like here , sometimes..

  • PS: It's rather telling that Dr D-Peatfield gave up on general medicine in order to treat the thyroid more freely.

    His book is superbly detailed -and he's a loss to the NHS.

    We know what happened to Dr Skinner, sadly.

  • Hello Scampi1,

    Thank you for taking the time to reply and say you believe me, please don't give in, I have felt the same on many occasions, in my case the medication makes things much worse for me, unless i have a tiny amount once a week.

    Is the doctor treating you for Thyroid problems? Have Adrenals been looked into? You are obviously very poorly and something needs to be done - just because someone doesn't understand we just get pushed to one side and ignored, I have had many arguements with doctors and one of the Endro's - we deserve better treatment.

    Best wishes

  • I was diagnosed with hashimotos back in 2010, but I was also at the start of the menopause, could the two test have got mixed up somehow, I am 51 and feel about 90, I know from reading about everything I can on thyroid problems that the two can be exactly the same, I have lost over a stone in 1 week and been in bed for 4 days, with very bad dizziness and sickness, it seems if I get a virus or something i get it a whole lot worse than say my husband, I am really anxious as well and having trouble being sociable, I can't explain why, but I just have this real fear of things at the moment, have read adrenal gland can do that, if I asked my gp to test for it, she wouldn't, she doesn't test for anything, I am seriously considering going private but will have to borrow the money as out of work again, all this illness has ruined me job wise, my poor husband doesn't know what to do. It's been 4 years since I have seen an endo, gp again thinks she knows it all, I have asked and asked but no joy. I had a terrible day yesterday just wanted it all to end. Hope you to get to the bottom of your troubles.

  • Hello Scampi1,

    You are such a poorly soul, sounds more than menopause to me.

    From what happened to me i can say that Adrenal Fatigue can cause endless Issues and unhelpfully symptoms for Adrenals and Thyroid can be similar.

    I was near to being bed bound before I had treatment for the adrenals and felt a lot like you did.

    Doctors do not really acknowledge Adrenal Issues unless you have Addison's or cushing's disease, but you could have the ASI test done - this would give you a true picture of your Adrenals and DHEA levels, The cost when I had it down was £85.00 plus the Delivery and Collection Fee - but for me that was the start of improvement.

    I hope things improve for you

    Best wishes

  • Thanks I have just returned from gp, I now have Ménière's disease, that why I have been so I'll for the past couple of weeks, caused by a virus, in my ears and head, very frightening symptoms, I think my immune system is shot, I get everything that's going around, but seem to get it 20 times worse, I would love to say to my gp could I have my adrenal gland checked please, she would scowl at me. I am going to mention it to my gyni tomorrow see if she can help.

  • Poor you, no wonder you feel awful.

    Have you thought of changing GP's - maybe stay at the same surgery but see someone else?

    Doctors do not like us mentioning adrenals, I did get mine checked at docs but all came back ok, a couple of weeks later I done the ASI test (test using Saliva not blood) and then the proper picture appeared - this is sadly the case - unless your adrenals are extremely poorly.

    I really hope your doctors, Gyni help, and realise how much you are suffering.

    Best wishes

  • I was left unmedicated for 19 years after a sub-total thyroidectomy and once medicated on Goldshield Eltroxin I improved greatly in about 4 months, but since the change in medication I have not been good and am now funding my own meds, but am still having to look at further medication as I feel that Levothyroxine is now not good for me. Am waiting to see Endo at the moment, so hope he can give me some advice. Maybe you need different meds.

  • Hello J Bee,

    Sorry things aren't going to well for you - I hope the endro can help you.

    I have tried a number of different medications, don't think I have had Eltroxin - unless that is a name for Liquid T4, although mine isn't the Goldshield brand.

    Good luck

  • KW, It's clear from your posts that you aren't able to tolerate normal doses of repacement hormone without unpleasant side effects which make you ill. It may be due to long term deficiency or perhaps just that your body finds it difficult to accept and metabolise the hormone and you may have to continue taking it at a low dose for longer than most.

    I felt that members were suggesting that after several unpleasant episodes a dose increase might be triggering a panic response, which can be an unconscious learned response. That's very different to suggesting your illness is in your head.

    I hope you'll be able to increase the frequency of dosing until you can tolerate it daily for a period before increasing dose.

  • Hello Clutter,

    In one of the posts their was talk of counciling - that is saying something else, in my opinion.

    It is clear to people around me that you can see the medication causes allsorts of issues, I have had no medication for four days and I feel better for it.

    I can not help how my body reacts to the medication - and thinking about it in a differen't way (because it is in my head) isn't going to help, sadly.

    Best wishes

  • KW, the counselling suggestions were well meant and were suggested to help you cope with the other stressors you described in your post while you are struggling with your illness too. They weren't saying your illness is in your head and no-one's blaming you for how you react to the medication.

  • Clutter, I was not saying the intentions were not good, but just pointing out how it made me feel because that is how I see it and I stand by that.

    I have appologised but that won't change the way I see it, I have not been abusive - I was a bit shocked by that, i have simply said how I feel.

  • Actually, you didn't apologise. "Don't be hurt" doesn't cut it. But that hardly matters now - what's done is done, and it looks as though Hypnoteq has now left the forum - someone who got caught in the cross-fire of your reaction to something I wrote. You can probably imagine how that makes me feel - or perhaps you can't. You don't seem to understand how upsetting this has been for me, how upsetting it was to receive a PM from another forum member telling me how I couldn't possibly understand what it's like to be sleep deprived and feel so ill - someone who doesn't know me at all!! As it happens, I understand only too well.

    Still, I've learned a valuable lesson. I should have spotted that you'd already disregarded the advice offered to you by other forum members and not wasted my time and precious energy.

    I wish you well.

  • LilyMay,

    I did apologise in previous posts, although I still see what was said in that way, I can not be held responsible for what others say, it does mean however it wasn't only me that interpreted what was said in that way.

    I have never disregarded advice on this site - it has been a great help to me.

    I have also been hurt by what was said, so it is ok for you to say how you feel but I can't.

    I still feel the same, and I have not under any circumstances been abusive - things are just getting thrown into the mix.

    I do understand where you are coming from and I will apologise again, but you haven't acknowledge my point of view.

  • Hi I never saw yesterdays comments but I feel for you I havent felt wellnin years medication doesnt work for me I just want to function normally too so big hugs xxxx

  • Thank you Karen, sorry medication doesn't work for you either - It has never been as simple as take a pill and all is well - because it really isn't.

    Hope things improve

    Best wishes

  • Kitten-whiskers, I was hurt too. To be accused of being unsupportive when I felt I was being anything but was actually rather upsetting on a day that was pretty stressful already. I'm sorry that I couldn't come up with a better explanation for what I was trying to put across and that you still took away the message that I and others believe your suffering is all in your head. I know how real your symptoms are and how wretched you must feel. I hope you manage to find something that works for you soon. x

  • Hello LilyMay,

    Please don't be hurt, I am sure that what you have said had good intentions, I did put that in a previous post.

    I still however feel, that is what is thought - not only from you. I do not understand why my body reacts the way it does to this medication, it doesn't make any sense i grant you , but in my case even taking 2.5mcg actually makes a big difference to me - can be either good or bad. I completely understand what you said about thinking you are going to have a reaction - but it isn't the case in my case, I will the medication to work, I hate being this way, the best years of my life are being wasted due to this awful illness, in two weeks I will be 34 and will have spent the majority of my life being ill, and that illness got much worse after I was given Thyroid medication, and the only thing that can make me well, causes awful symptoms - it doesn't make happy reading.

    I have had no medication for four days and I feel better for it, another three days then I will have a drop.

    Best wishes

  • hi there kitten , following on to my post yesterday ....please please please don't ever think that I was in any way suggesting that my reply was in any way saying that your problem is all in your mind ----- it was meant as the exact opposite ---- but you do have a health /thyroid /adrenal problem that you do need to get sorted .....what I was trying to pass to you was that some find that meds resolve it ,some find that a combination of diet /meds/ lifestyle etc. can , and in some -- but not all -- cases works for them .......but above all else WE ARE ALL DIFFERENT and we have to be treated that way ....... I hope that you don't leave this site your experiences --- good and bad --- will be of superb help to others that are here and others that will be in the future ................alan xxx

  • Hello Alan,

    Thank you for you kind reply, I was not referring to your post - so I am sorry for not making that clear.

    I will not leave the site, I want to be a success story and then be able to help others, obviously most of the time all I can offer is support for now, but I have found that massively important when things were really bad for me.

    Since being on the liquid T4 I have been able to cut out the Hydrocortisone - so even though I have tiny doses not often - that is proof it has done something.

    The reason for writing the post was really to try and get away from people saying "you could be thinking that is happening" some of us on here are dreadfully ill and everyones genetic make up is differen't - and as you quite rightly said we are all differen't - something doctors don't take into account, but just because my situation is differen't doesn't mean I am making it up, or thinking it up because that isn't the case, and others might be really hurt by that.

    Best wishes

  • Reading back to the replies to your previous post as a newbie it did not look to me that anyone was saying it was all in your head. You clearly have many other difficulties : partners health,neighbours etc . All of which must create considerable stress on top of your own health problems.

  • Hello Treepie,

    I am sure not everyone would see it how I do, but that is how I see it.

    Yoga, meditation and occasional massages - help me with my stress

    Best wishes

  • Hello kitten- whiskers,

    All good for stress .My wife has just started meditation via Mindfulness programme to see if it helps reduce her stress. She has a TSH of 3.1 so is obviously normal! I was 102 back in May so I get treated.

  • Hello Treepie,

    TSH of 102 - my goodness, you must have felt awful.

    I have only just started meditation but my dad has done it for years - said it makes the world of difference.

    I have always been a stress head and worrier so I find meditation hard, but It proves the need for me to do it. Yoga is much easier - thankfully.

    Best wishes

  • Your head is the most powerful influencer on everything else; it either stops the production of, or it produces, the most powerful chemicals of all - your own. If you are so bombarded by external things as well as being so very ill, you are more disadvantaged than someone who is ill but in a peaceful environment, If you are constantly bombarded by dreadful circumstances it is going to make finding the right type of medication and doses much more difficult.

    It seems you can't change any of your external circumstances, so maybe you can recognise that it is going to be much more tricky for you than for others to find the right meds and the right doses - expect it is going to be more tough and cut yourself some slack. You'll get there, but you have a real battle.

    I do genuinely wish you strength, hope and light.

  • Hello Schenks

    Thank you for your advice # : >

    Best wishes

  • Kitten whiskers, I too, am hurt by your response and accusation that I was unsupportive and disbelieving of your medical condition. I don't believe that what I wrote to you was anything other than supportive, and was definitely intended positively. I was offering the view that when we are physically ill other stuff can also be going on, which can benefit from being addressed, because every problem can have knock on effects. The mind is a very powerful organ of the body, it isn't something separate from it, and it can enable us to feel wonderful highs, and empower us; as well as dreadful lows which disable us. However, I reached out to you initially because your post indicated you are unwell and unhappy, and I wanted to offer something that might have helped - at a time when my own situation is likewise the worst it has been in my whole life. For myself, I have received suggestions for help from well wishers on occasions, that have ranged from the brilliant to the weird and wacky, but I have thanked each kindhearted person for their concern and suggestions, because I recognised and acknowledged their intention. Perhaps age and maturity is a factor here because I am appreciative of all imput from kindhearted wellwishers even if it didn't achieve a resolution of my problem. However, this experience has sadly taught me a valuable lesson, and as I don't wish to be subjected to gratuitous unpleasantness on this forum I am removing myself from it. Life is too short to subject oneself to such unpleasantness.

    I hope you find what you need.

  • How sad that you should do that. We all perceive things differently at different times in our lives. Do not leave the site you would lose out on what is at least 99% of the time is wonderful help on this site.

  • Thank you marmaris. It is appreciated. I'm just making copies of the useful information people have offered me in private messages, so it isn't lost, and then I'm deleting my account, because it really isn't worth being upset here. But thank you for your kind post.

  • Why is believing in yourself important? If you believe in yourself, why should the opinion of someone else matter to you or your self-value? Yes, it’s nice to have the approval of certain people in your life, but if you don’t get it, you have to decide if you believe in yourself, or if they (and their opinion of you) is more important.

    Now I don’t want you to think that I feel that believing in yourself means you ignore anything unflattering that others say. It just means that if an idiot is talking, take the source into consideration when evaluating what they say. If someone you trust has some constructive criticism, it doesn’t mean you stop believing in yourself, but it might be time to reevaluate and perhaps tweak some aspect of yourself.

    Believe in your worth as a human being. Believe that you can do things, and use the evidence of the things you have done to bolster that belief. We might not be able to do everything right now, but given time and effort and some help, there is little we cannot accomplish, eventually. Really, you can do it, if you can believe in yourself.

    From: philosiblog.com/2012/10/11/...

    You could choose the ignore the remarks which you do not feel fit what was your intention, and move on... Just because the other member has reacted doesn't mean you have to react too... Why miss out on a valuable resource? Take the higher road.

    Love n light to you xx

  • Mabes, thank you for your words and good wishes, and for taking the time to write. I have saved the link you gave me, and shall read it later. I'm sure it will provide some useful reminders.

    I'm not feeling in anyway diminished, as a result of recent events, just frustrated by the absence of graciousness about the whole thing. I've been reminded today, of The Desiderata by Max Ehrmann, and in particular the phrase "take kindly the counsel of the years" which seems very apt. I have no problem with any view I hold or share, being considered unhelpful or inappropriate, but to have is thrown back and criticised is insensitive and rude.

    Having recently received the results of my adrenal stress test, I think it's wise to take Genova's advice that I should identify and reduce the causes of stress, and this seems to be one of them.

    But thank you again Mabes, best wishes.

  • I have had to take a break from certain online forums in the past. Funnily enough hormone forums seem to be the worst health ones I've encountered for these upsets!

    Adrenally taking a time out to focus on your self and healing is invaluable. I hope that you feel the benefit ASAP from avoiding any obvious stressors.

    Xx

  • Hypnoteq, Please don't leave the forum because your well meant post has been misconstrued. It's upsetting but we can't guarantee our support will be received in the way we intended when we posted.

    You have given excellent advice and support to other members and hopefully have received the same. I hope you'll reconsider. xx

  • Thank you Clutter. I've always appreciated your input, both here and privately, and thank you to for your kindness recently.

    I hope things go well for you.

  • I hope things go well for you too, Hypnoteq xx

  • oh dear hypnotek, I really do hope that you have a rethink on leaving this site because I for 1 have read replies from you to me that have been informative & supportive and you do reply to many others in the same way . I feel that you and the rest of us would be the poorer if you do go down that way .... please rethink before you do anything ......alan xxx

  • Please don't anyone leave the forum because we have had a misunderstanding. Most of the time we work in amazing harmony on here. Occasionally misunderstandings happen. It's because we don't meet face to face and some of the physical clues that would get us through potential conflict aren't there.

    I may have contributed to the upset too - for which I apologise. Like everyone else involved, it was not my intention to cause upset. But solely to offer support and suggestions that might possibly be helpful.

    Please, do nothing in haste Hypnoteq and KittenWhiskers. Or, if you really feel you need a break from the forum, come back soon.

  • Thank you for your considered post Humphrey.

  • Hello Humphrey,

    You make alot of sense but I can live without the stress to be honest.

    I was not in anyway cristising anyone and I have all along said the intentions were good, I was just saying how It made me feel - that is how I saw it - we all see things differently and not everyone will agree, but then they are not in my shoes, but on no occasion have I been abusive - not sure where that came from.

  • I know - this thyroid thing leaves us all feeling ragged. And all too often feeling very alone. The medicos don't help. Often family and friends just don't understand how poorly we are. It's very easy to feel that retreat is easiest. But don't go far. And come back soon. :-)

  • Hypnotea,

    Please do not leave, their is no unpleasantness - I was just saying how what was said made me feel, because that is how I saw what was being said.

    As i said in a previous post - I thought you all meant well.

    I am very sorry you are very poorly, please bare in mind when all is wrong and you feel shocking it is very easy to look at things in the wrong way - and maybe that is what I have done but

    I still standby what I have said, because that is how I felt.

    I am not in anyway critising your motives - I am certain they were good and I am very sorry if what I have said has hurt - that was not my intention.

    You are a valued member hear, please stay.

    I am very sorry

    Best wishes

  • A friend of mine in the States has other health problems outside hypothyroidism - anyway she was extremely reactive/ thyroid medication even in tiny amounts. If a person can react to under 20 ppm of gluten or a whiff of a peanut or a banana (to the point where people are not allowed to have these things in the same room/office/airplane) then it's possible to react to minute things (in my humble opinion).

    Anyway, my reason for posting was to ask if you've looked into Mast Cell Activation? If not, take a look on Google. It could be that this is an issue for you and by treating the Mast Cell disorder you would eventually be able to tolerate thyroid medication.

  • Hypnoteq, surely you can gain as a member and give your experience as a member. The response of someone who is clearly under great stress and perhaps not seeing straight should not determine your membership.

  • Thank you for your response Treepie, it's appreciated.c

  • Hypnoteq, not sure if you are leaving or not (hope not )but just incase you do I wanted to thank you for all the help you gave me when I was undergoing hypnotherapy ( not from you I hasten to add but another therapist !)...kim x

  • Please Please don't anyone leave this site. Its been a godsend to so many. We all get so fustrated by this awful disease but I have found that the best thing to ever happen to me was to have found such a good place to talk to people who really understand what we all go through. I really hope no one leaves. I'm sorry things are so awful for kitten whiskers but please rethink and stay.

  • Hello Mauds,

    Thank you for your reply, I will sleep on it tonight, but after this mornings unpleasant response I am not so sure. I few months ago I would have agreed with you but things have changed here, it was only a matter of weeks ago their was a post of someone being upset because someone had been nasty over her spelling.

    We are very ill and could live without all that unpleasantness.

    Best wishes

  • I really hope you stay. I've been through hell since April and without all of you on this site I don't think I would have got through it. I hope you will feel better soon. If we don't have each other to rely on then we have no one. People cant see what we go through as most of the time we look ok on the outside but they don't see the havoc that is going on inside our bodies. To be told it's all in the mind is not very nice I was told this only in Sept by my endo but thankfully I'm proving him wrong. Please try to keep strong I know how hard it is when you feel so awful. I really feel for you.

  • Thank you Mauds - hope you feel better soon x

  • I really hope we both get better soon. Take care

  • Sorry to hear about this. I haven't replied to any of your posts but since being here for a not very long time I've felt better despite no one in my social network understanding how I feel. Best wishes x

  • Thank you Starla - I am glad you are feeling better : >

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