Hope & Thanks.

I guess there are a few people with our problems that must get better some how but they probably don't come back on forums like this so we never know.

So many of us are left to flounder around in ignorance and hardship for so long, resulting with many other issues, and then a road to recovery that has become harder and seemingly never ending. As our bodies work less & less well, one ailment begins to merge into another and symptoms over lap, all seemingly misunderstood by doctors and even endos.

As the list of failed meds/supplements grows, we are stuck in a cycle of raised hopes followed by a despondent realisation that exhorts yet more tears, frustration, guilt and feelings of inadequately.

Admin do such a truly wonderful job. Thank you very much for this wonderful forum that provides so much advice, support and above all hope that we WILL find that magic med & some day feel well again.

There has to be hope for a world that understands thyroid issues.

58 Replies

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  • Hope & thanks

    That statement was truly amazing, summed up our feeling in one fell swoop. Hopes of ine day feeling normal whatever it is to be normal. I feel as though I have been unwell for so long I don't even know what it would feel like to be myself true spirited self.

    Thank you 🙏🙌

  • Good morning Gill007

    I am glad to say that we have had quite a few posts recently in which the member has, if not recovered completely, feels so much better.

    I am sorry also that we are restricted by doctors who don't understand and appear not to have been taught as medical students the function of glands and particularly a failed thyroid one. They are ignorant of clinical symptoms which are ignored completely in favour of 'evidence' based medicine which Dr Skinner abhorred. His evidence was the patient not the blood test.

    It does come as a big surprise once, eventually - if ever - diagnosed that the one and only prescribed hormone doesn't improve the health for many people and, as you say, it is great to find a forum that is able to help our understand. I have recovered mine now and hope it continues and it was through Lyn Mynot of Thyroiduk who began Thyroiduk.

    Healthunlocked, of course, has given us the capacity

    to pour out our tales of woe and because we've been there - done that - it is good to have support.

    It has taken me a while to get to find a solution (and I now have two - and can fall back on either) but many can get well if only the doctors would understand that many need the TSH suppressed in order that the T3 is kept higher. There seems to be absolutely no scientific understanding in the guidelines provided and I have NOTread in the BTA guidelines that it is important for us to have a T3 towards the upper level when hypo and it is rarely checked, except for TSH and T4. The TSH which varies throughout the day is classed as the 'exquisite' test!!!

    We are also denied a trial of an alternative if not well on levo.

    Hopefully, with new scientific evidence things will change but until then, on this forum everyone contributes and information is helpful when you realise that someone else also has/is having a very similar experience to yourself.

  • Shaws. Are you saying if the T3 is kept high & TSH suppressed there is no risk of arterial fibulation or osteoporosis?

  • I am not medically qualified but Dr Lowe said so.

    Before the blood tests were introduced with levo, we were prescribed NDT until we were well. If we felt overstimulated we dropped down a dose so it was all on 'how the patient felt'. Nowadays it is all down to the TSH.

    He said it is seriously overblown. He himself took 150mcg T3 every night, so he was taking it since (I believe) his early 20's and he died accidentally in his 60's. He as well as other doctors (trained pre 60's) said that we are usually not given enough as we are kept 'within range' instead of sufficient to make us feel well. This is a link and it is about 'replacement'

    web.archive.org/web/2010073...

    This is another link and click on heart/hypothyroidism. Some links within these may not work.

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

  • Shaws, I think it is time you stop saying you are not medically qualified. It makes it appear as if actual GPs ARE medically qualified. teehee

  • Heloise, you made me laugh. None of us are 'qualified' but I suspect that being treated by 'qualified' people and not recovering makes us 'unqualified'. :) i.e. untrained but experienced in the 'what not to do and what to do''. Quotes aside, I feel I have to point it out as some may think I am trained and should something go awry, blame me/HU.

  • Yes, of course, but our training is obviously better than GPs. If they aren't being sued for maltreatment, I shouldn't think we would be.

    You put in so much time here , I just wish you were getting paid as if you were "trained".:)

  • I think the fact that we know people are going through 'hell' not understanding what the blazes is wrong when they are given medication which is not 'working' or undiagnosed, dismissed by professionals, despite horrendous symptoms that all of us contribute in one way or another.

  • Shaws, thanks for posting the video. I hadn't seen it before.

  • Wow! Thank you for posting Shaws.

    It just goes to show we can have symptoms for many years, even mild ones, and be well into poor health before we realise it.

    But how does this happen? :-(

  • It's only because the BTA insist and most other countries 'think' that the blood test is King. Before the blood tests we were treated on our clinical symptoms alone and put on natural dessicated thyroid hormones on a trial basis. If we improved we had a thyroid gland dysfuncton. Doctors knew then all about clinical symptoms and we didn't have the struggle we have today. Modern methods aren't always the best with regard to treating hormone deficiencies. Big Pharma has promoted levothyroxine as the 'perfect' treatment and it isn't for many and they tell us there is nothing else, when there is.

  • Thank you shaws. I have his book buried somewhere in the house. I shall spend today educating myself whilst sitting in the sunshine.

  • I live in Australia and have found this forum so helpful,confirming and comforting

    I am on a site on FB called hypothyroidmum and sexy thyroid which also have been supportive.

    I was finally diagnosed with Hashimotos in dec last year,so was good in some ways to be confirmed but the ride is so debilitating and full of highs and lows.

    I am struggling at work but have to keep going to support myself(live independently) and am still trying to get my head around the disorder

    thankyou to everyone for being brave enough to share in such an honest and personal way

    warmest regards onecanhope

  • Have you been given levothyroxine for your antibodies? I hope so. Always get your blood test first thing and don't take levo until afterwards. For your own records too always get a print-out with the ranges and make sure your other vitamins/minerals are above the half-way mark and not just 'in range'.

  • yes i am taking it am on 75mgs I have my levels checked regularly endocrinologist wants to do a blood test end of april to rule out any other autoimmune disorders and check my levels at same time

    regards onecanhope

  • That's good. Remember not to take levo on the morning of a blood test for your thyroid hormones, and have it as early as possible. Take it after as long as you leave 2 hours either side if you've eaten. Food can interfere with the uptake of hormones.

  • Also, never be reassured by the phrase 'your bloods are normal'. Particularly if we feel anything but 'normal'. Always get a print-out of bloods with the ranges and post for comments.

  • I have learned so much from this site and I'm so thankful for all the help and support.

  • I agree with you totally.

    also want to thank every one on this site.

    If it weren't for the helpful and knowledgeable posters here, I would still be practically bed ridden most days and getting steadily worse.

    I now feel so much better since starting to treat myself and have a source of experienced support whenever I have any questions or doubts along the way.

    So thank you!

  • Hi I haven't posted on here for a while not because I feel better, just because I really don't have the energy and have accepted that I will never feel well, it's 18 months since my tt and prescribed levo only, on various doses from 100 micro to 150 micro, still have loads of hypo and now new stomach symptoms, my endo and doctor will not listen to me and have told me that there is NO other treatment available I am not strong enough to fight them, this forum has helped me so much and I now realize I am not alone, I will post my next blood results due in 6 weeks. I was sold the promise of 1 small tablet a day will make me feel well again how gullible was I.

  • Please please don't accept you will never feel well.we must not give up ..You need to look after yourself now as doctors have not helped you ..post your results here when you get them someone will help ...I've gone down the self medicating route and although not 100% I'm much better off than on the one little pill my doctor gave me ...big hugs ...hold on ..never give up

  • You're not the only person to be made so unwell and they are not telling the truth that there are no medications for the thyroid gland. It is a fact that Big Pharma has promoted levothyroxine to such an extent and have given monetary 'in kind' rewards for using their products. Never mind that we get given umpteen different medications for the complications/symptoms of levo if it doesn't work for you but we are wiser now and do know that there has been a Natural Dessicated Thyroid Hormone, the addition of T3, or T3 alone. A woman around 1892, was given the first NDT (not obviously in the form we have today) and she recovered. I think she lived till 82. At the American Thyroid Association's 2013 meeting, it was announced by a Prominent Endocrinologist that she was cured by 'levothyroxine'. Isn't that strange as levothyroxine wasn't invented until the 60's along with the blood tests (very lucrative). It's well seen that none of these doctors have ever taken medication that has made them worse that before being diagnosed.

    Before the 60's people were diagnosed by their clinical symptoms (not by the TSH as it hadn't been invented) and given NDT till well. I don't think the records show that these people all died of heart/cancer/etc problems due to this hormone which is the rumours that now surround this very important life-saver for many people.

    I think you will identify with this link that Lorraine has taken to the Scottish Parliament - it's absolutely shocking they can whip out your thyroid gland yet give you very unsatisfactory treatment which is available.

    thyroidnation.com/fighting-...

    hormonerestoration.com/Thyr...

  • Tatty - you must have hope. You've obviously been badly let down by the NHS but they are showing their utter ignorance and disinterest by not helping you.

    Please continue to read as much as you can on here, you must take matters into your own hands. YOU are the only person who has your interests at heart and you must believe that you can improve your health.

    Sending best wishes.

  • Hi cinnamon girl thanks for your reply, I do know that I should be fighting my case, but I am banging my head against a brick wall, according to my gp and endo all my symptoms are not related to my thyroid problems because my tsh level is normal !! the only support I get is from this forum even my family don't understand and are getting fed up with me.

  • Tatty - what does your GP and Endo think is wrong with you then?

    In desperation I wrote to my GP, with a copy to the Practice Manager (very important), stating that they had done nothing to help me regain my health. That sprung them into action!!

    I was invited to a meeting (lasted 45 minutes) with GP and Deputy Practice Manager where I told my story and they were visibly shocked. I had been repeatedly misdiagnosed by 3 GPs when I lived in a different area.

    I asked the GP if he would agree to refer me to an Endo of my choosing and, give him his due, he did that.

    Remember, any written complaints are more likely to be taken seriously. Can you not ask to see an Endo on Louise's list?

    Would also strongly recommend that you view your medical records or ask for a copy of them.

  • They think I am a hypochondriac it's all in my head, but they prescribe painkillers,anti depressants, omroprozole for my stomach various creams for vitiligo and fungal skin infections, told to have a nap when I am tired wear an extra cardigan when I feel cold just a total waste of time going to see any of them.

  • Tatty10

    I feel for you so much. We have all been there before but you must take responsibility for your own health. Your doctor & endo are wrong, wrong, wrong. Thyroid disorders can make us very ill with a whole variety of symtoms and other illnesses. Just when we feel tired, vulnerable and in need of support, we have professional people giving us scathing lectures and refusing to listen. Believe you are right and do something about it because problems will not go away ? If you can't face fighting, I suggest you find a doctor or endo who is known to be sympathetic to our needs. You can get the list from Thyroiduk. I can't remember the name or email address but admin will tell you.

    I have reached this stage as on top of all the horrid physical symtoms, I am now a mental wreck too.

    I am seeing a private endocrinologist on Thursday.

  • hi Gill007 thanks for your reply i do know that i should fight for my health to be restored but its so hard when i dont feel well its just not like me at all to be so weak.

    good luck with your appointment on thursday and let us know how you get on.

  • Tatty - what helped me was being constantly reminded of happy times so I moved my favourite bike into the lounge (I know I know!!). That gave me the impetus.

    I truly believed I was heading for a coma thanks to 3 dangerous GPs who did nothing, my body started shutting down and it was terrifying.

    I made an appointment with Dr P, goodness knows how I managed to drive there, but I knew that I needed the help of someone with the right expertise and who wouldn't dismiss me.

    You clearly can't depend on the NHS and, as GILL007 states in her good post, you must take responsibility for your own health.

  • When you read this, you will realise you are definitely not alone. Lorraine has taken her case to the Scottish Parliament. There were three women, including her, but they were quite unwell and we cannot take stress the way we used to.

    thyroidnation.com/fighting-...

  • Thanks Lola for your kind words x

  • That was lovely. I have been in a similar boat and the dashed hope is the worst. I can't believe the time, fight and energy it takes to find answers. I have been taking NDT for about 2 weeks and have more energy, temperature is more normal and slowly losing weight. Just waiting for other things to improve and then I can post my story online. We had to buy NDT online and can't believe it's taken 30 yrs to find some answers thanks to this forum which is amazing. I wish you well and don't give up!!

  • A great post. Inspiring and uplifting. Well done Gill.

  • I would like to say a big thank you to everyone on this amazing forum. I naively thought that the "one little pill" would make me well. I have learned so much from the wonderful generous people here.

    Ending on a positive note, (for a change!). Doctor and endo have agreed to up my levo to 100mcg and if that doesn't work for me T3 has been mentioned. I wouldn't have got this far without you all.

  • I'd also like to say a big thanks to everyone on this forum - I've had lots of good support on my journey to self-meding. Thank you all and anytime I feel I can be of help I will add to the discussion. Love and hugs to all ((())) x

  • You need to look at my profile page if you think we don't come back.

  • You look and must feel wonderful. Well done for never giving up.

  • I read a article in the Telegraph, I think it was, maybe you can find it online.

    A women who had thyroid problem, she took the products made by Carolyn Dean, ReMag and Relyte. She is the author of the Magnesium Miracle. If you don't know, these are picometer, angstrom sized minerals, that are so small they by pass digestion, and so are fully absorbed into the body. Unlike regular tablets which may or may not be absorbed. Anyway, in this article this women who took them no longer had thyroid issues. Carolyn Dean made these products to help with her own healthy problems.

    You can find lots of info on Carolyn deans website.

    Also, I have to recommend a healer in London, called Seka Nicholic, her book is called you can heal yourself. She treats people with thyroid problems and is successful with that.

  • You can find some good information including free e books on the remag and relyte on the website mareset.com (go to the FAQs).

    I am just reading the book about the relyte, it is very interesting and mentions how the minerals and thyroid interact.

  • i have read a lot lately, so much that I forget a lot but so far- we know that TSH is considered the most prominent measure-my endos words---- so I sent him a legitimate paper on why TSH is NOT the most reliable. oooh eerr mrs!

    next iodine, we have had thi s before but- iodine is needed in every cell of the body as t4 and t3 are also needed. - liver and kidney do the converting and if liver and kidney are malfunctioning then t4 wont get converted, likewise if there is not enough iodine then again t4 wont get converted to iodine. we need iodine to enable the hormones to work. i have now started acupuncture, and he works on spleen liver and kidney, explaining that I am too cold internally and the kidneys are weak , weak liver, too cold, blood not moving, so metabolism low. so back to iodine, making it all work, I thinkiwill order an iodine loading testfrom genova and then start on the iodine, see DR Edward Group's video on iodine and hormones. and DR Brownstein. interestingly Dr Group says that hashi is literally a cyst in the thyroid caused by lack of iodine, and he says ' look anywhere a cyst grows and it is lack of iodine- including PCOS, which I have got and I have hashi but no goitre, but I have hair loss and that on dr groups blog, hairloss victims been taking iodine and regrown their hair, PLEASE NOTE this is NOT my owns words, you have to research it yourself to make your own mind up as we are not clones ( even tho the nhs think we are and treat us all the same), also there is iodine and there is iodine, and you have to be careful what you choose,- it would also be nice if those who got better , came back and had a thread on RECOVERY , so we could use it as a reference in stead of just getting better and buggering ORF!!! growyouthful.com/remedy/iod...

  • Have you had an iodine test pettals? Always a tricky one as it can make things worse & Levo already contains some. :D

  • no but I have done the patch test spare, and I fit the criteria of what I have added on the above post, and I am about to add another in a mo when I find it- I am sooooooooooooooo sick of my dry skin and lack of hair, and feeling shite... that I will prob try it Spare- as I have been unwell so many years and wasted my life indoors tha teven my friend sdo not bother to remember to ask me out. I am a forgotten wall flower. so as I may be dead soon I might as well try to get back some elife rather than spend the rest of whati have left just looking at the imagein the mirror and cringeing, and just waiting to visit the grim reaper and still be ill. :D

  • Haha, why don't you say what you really mean pettals? You have just cheered me right up. However, I would say and I am no expert but tread carefully regarding an iodine supplement. As I understand what you have said above works in synergy with a healthy thyroid but those on meds should stay clear.

  • well mrs pooh bear, I am ill anyway, I may as well be ill trying to be well.. boomboom

  • I just wanted to say that I don't post much on here any more as I am feeling better (thanks to this site), and am getting on with my life :)

    If you look at my profile you will see how ill I was and the trials and tribulations I had getting better.

    I am now on a steady dose of 2.25 grains of NDT and am pretty much back to normal. I have a new job (school accountant) and am hoping to run the bristol 10k at the end of May.

    Don't give up hope and keep posting on here, there is such great advice to be had. I am so gratefully for the amazing advice and support I received here :) xx

  • well done clarebear, you should stsrt a recovery thread and then we will allow you to bugger ORF, and get on with your life, but need details first, are your self medicating and is that all you take or do you take supps, what do yu take, ( spanish inquisition here) and who gave you ndt. thanks mrs. xxx

  • Pettals, Clare has been fortunate to consult with an Endocrinologist who appears to put the welfare of his patient first and foremost. I think he is happy with her recovery and maybe he has learned too.

  • oh wow, where is he shaws.... timbucktwo I guess,

  • Much nearer home, I believe.

  • home? not near us?

  • Home - I mean UK but Clarebear will confirm maybe by Private Message.

  • Show off xx

  • Hey is the 10k sponsored? :D

  • Oh yes I think it might be! Rosie is currently doing the £10 challenge at school in aid of TUK too :D x

  • Nice working in a school with 14 weeks holidays with the kiddies?

    (pro-rata = UNPAID) still... luckily summer salads are cheap....

    is the sponsor stuff on the TUK site? - think I may need a link...

  • Sadly my job isn't term time only :(

    Not sure about sponsor stuff! Rosie doesn't have anything official! X

  • So true and well said. I don't know what it is to feel normal anymore but thanks to all here on this site for such great support and knowledge. this site would be a great educational tool for all docs and endos. Maybe then they would listen to us.

  • I can only agree 100% with everything you say!

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