I'm not on any thyroid medication yet. Hoping T3 will arrive soon. Meanwhile my heart feels weird and wrong, making it difficult to breathe and causing dreadful anxiety, my edema is hideously severe and my physical weakness is so awful I feel like I'm about to die.
I live alone and, having been so ill for 18 years, I've lost touch with my friends and family. The only person who I ever see, or speak to, is my mum (who sometimes visits). Being alone makes it more frightening to feel this ill.
I don't know if my body can stay alive much longer? Hoping someone can reassure me that, despite these scary symptoms, I'm actually alright?
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Venus77
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I just wanted to drop a little message to say you’re not alone. There is always someone listening on this forum.
Do you have anyone near - neighbour to help with the anxiety? Have you researched different methods to help lessen it?
You must not suffer alone.
I haven’t read all of your history as I wanted to offer some support first. I’m hoping you have the right information regarding T3, as most start on T4. I’ll read it now and edit this post.
Hi .venus, I've read yesterdays posts. you got a lot of good advice about what you need to do going forward. If your gp won't prescribe suitable medication for you see another in the practice. If you feel that you are more ill now than you can cope with you should phone nhs 111 they will either reassure you or check you over to make sure you are in no immediate danger. I hope things improve for you soon, you say you have been ill for a long time, a lot of us know that that can wear you down. Good luck Gb.
Thank you absolutely loads for your thoughtful and helpful reply!
During the last 18 years of severe ill-health I have seen at least 15 GPs and none of them have helped me. I showed them my long list of horrible symptoms, all of which are hypothyroid-related, and not one of them suggested testing my thyroid function. In 2015 I finally managed to persuade a GP to run thyroid tests but, of course, this excluded the crucial FT3 test. I questioned this and was told that they "can't" prescribe T3 med so never test FT3 levels.
I was sent to a psychiatrist who diagnosed me with depression and anxiety and insomnia. I was prescribed antidepressants and sleeping pills.
I continued to insist that there is something physically wrong so was eventually referred to a rheumatologist. Because of my muscle and joint pain, he claimed I have fibromyalgia and prescribed pain-killers.
Because of all this, I have given up on trying to get suitable treatment through the NHS.
Venus ~ please try not to worry too much, because the anxiety and stress will impact further on your health, easier said, I know, when you have such frightening symptoms. Please bear in mind that you are now in the right place for improvement, you have found this forum and you are part of a community that understands your plight and the knowledgable ones will work through your symptoms and help you eliminate them.
Many members have been through, or are still going through very similar health problems and have suffered the same appalling treatment from GPs ~ all the useless, incentive driven prescriptions, that only serve to make you worse! I have lost count of how many times I told my poor daughters what to do if I lose consciousness ~ making out I 'felt a bit faint', but secretly thinking I was going to die, with head and heart pounding, uncontrollable shaking, and engulfed in widespread pain. GPs and 'specialists' are, for whatever reason (the mind boggles) surprisingly dismissive of these distressing symptoms ~ I suspect because most of them can't join the dots, due to inadequate training backed up by big pharma financial incentives.
You have done all you can to recover your health in a broken system, and I'm glad you have realised that you now need to take responsibility yourself in order to recover ~ you're obviously very knowledgeable so I'm sure it won't be long before you find answers. Anyway, I just wanted you to know you're not alone, and as you can see by your replies so far, there are always understanding people to listen or advise, so it's always worth posting if you feel alone or scared ~ even during the night ~ some of us have sleep problems, and might appreciate the company! You are among friends, so take care, keep calm, and I hope you will soon feel better. :0)
Mamapea1 ~ I'm deeply touched by your message of support so thank you, massively, for all that you said! xx I'm so sorry that you have suffered with such terrifying symptoms and I hope you are regaining your health now!
Recently I have experienced episodes similar to what you described. Suddenly in horrific pain, shaking all over, drenched in sweat, heart racing, nauseous, sudden loss of hearing, nearly collapsing, convinced I was dying, unable to call ambulance as too out of it.
I agree with all that you said about the broken system, lack of proper training of doctors, dictatorial big pharma, and so on!
Strangely, even the functional medicine practitioners who I consulted did not acknowledge that I have hypothyroidism so I'm only now, finally, starting to explore thyroid issues!
Thank you, again, for your caring and encouraging message! xx
Venus, you're welcome, I think I am on a similar journey to you, desperately seeking answers, with blood results bearing no correlation to the intense symptoms, resulting in misdiagnosis and inappropriate treatment. I hope you have read the pages of the late Dr Lowe ~ shaws often links, so you probably have ~ I believe the answer is in there somewhere, and I hope it is for you too, and the T3 solves the problem for us both.
I believe the situation is complex, and although not yet fully recovered, I am much improved, and have got rid of some symptoms that have plagued me for years, thanks to advice given freely by members on this excellent forum. I have had more help from here than I have from 25 years of hospital and GP visits ~ and there have been many! I have learnt so much, and perhaps more importantly, it has given me hope that I may regain my previously good health, as I had all but given up before I found this site.
I'm sorry to learn that even your functional medicine practitioners didn't unveil your health issues ~ I was considering taking that route myself, although I'm hindered by financial constraints, and my meagre allowance is being deployed to provide expensive supplements at present, as my levels were dire ~ next step is more tests and T3, which, like you, I am banking on!
Let's hope this is the year we both find the solution. :0) Mamapea xx
Thank you HUGELY for another marvellous message! xx
I had been desperately hoping that T3 med would revive me but I've now been warned that I may have Addison's disease so might not be able to take T3 med after all. So it seems I'm back at square one, again (not knowing what's wrong with me or what to do about it).
I hope, so much, that your journey to health is going more smoothly and that you will be feeling far better in the very near future! xx
Oh dear ~ what an endocrinological minefield it all is! Did you do a saliva test? I have that on my ever lengthening list of to do's. I'm pretty sure I have some sort of adrenal dysfunction, although blood test (apparently useless) was 'in range'. I expect mine (fingers crossed) is just low ~ although I also think I have sugar imbalances! I sound like a classic hypochondriac ~ but I think that is one of the few illnesses I DON'T have lol!
I hope whatever the outcome, your treatment is effective and you have a speedy recovery. You deserve it after suffering for so long ~
I have not done any saliva testing yet but I have done the D.U.T.C.H. twice, which showed that my hormone levels are horrendously low. Most thyroid experts believe that most hypothyroid patients have some level of adrenal dysfunction / HPA axis dysregulation. I hope you're able to test your cortisol levels / adrenal function soon. Let me know which test you choose and what your results reveal!
As blood sugar imbalances are also extremely common in those with hypothyroidism, you do not sound like a hypochondriac at all!
Thank you, ENORMOUSLY, for your well wishes!
Hoping that this is the year of rejuvenation for you! xxxx
Dear Venus 77, I hear you. On a Scottish island, Gigha, they grow orchid essences and you choose the one that is made for your specific emotional trouble. Rona guides you with her knowledge of the products. its like a precursor to help with medicines that are also trying to heal us but we've lost the connection between illness and its emotional background
01583 505 385, healingorchids.com
I've just ordered one for my beloved mother who is in her final stage of life now, to help her transition, God bless her.
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xx
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