I have tried so hard to get information on doctors, medications, blood tests....the time is passing by and I am only getting more weak and confused.
It is too much for one person to handle.
Hostile GP's, ambiguous approaches to treatment, unknown cause of my hypothyroidism... money worries, getting worse, not know who is right who is wrong. constant fear of making myself worse if I try to make changes myself
I cannot take it any more... I spend all days on trying to get somewhere with all of these and I cannot any more.
I am very sorry that you are feeling very, very down tonight. It is not surprising that depression can set in because of the lack of assistance by the NHS.
It is difficult enough to research when you are well, but I would never in my life have thought I would have to do so much reading etc etc in order to fathom out why I wasn't getting better.
Please make an appointment with your GP and tell him you are feeling more unwell on levothyroxine. He may not believe you but I can perfectly understand as I felt terrible.
Ask him if you can trial Evotrox which is a liquid form of levothyroxine and this is a link
Thank you Shaws. I have seen GP today again. She says that she is not allowed to prescribe anything else.. I can't go there again. They think that there is nothing else there apart from levothyroxine tablets and even if I say that there are other alternatives they get hostile towards me.
Hi edysia - sorry you are feeling so bad but I think you have made a wise decision to see Dr P and I think you have an appointment with him quite soon? I think you need to trust him as he is a wonderful doctor who will know how to help you, and he tackles things in a systematic way. I was in a similar situation to you 18 months ago and I am now feeling pretty well. Please don't give up hope - hopefully you will start to feel a little but better soon too xx
Hi Edysia, I agree with Clarebear, you will see Dr P soon, he will help you a lot, it's ok, you come here and share your frustration, it's normal to feel so low and like it's never going to get better but it can get better and now you are getting to know more and meeting Dr P it will get better.
Please don't forget that you have the support and help from the wonderful people on this site who are the experts on this subject as everyone of us lives with this disorder every day
There are better days ahead, it is just that you are unable to see them just now, so please be assured that they will come. Xxxx
I hear you. I am hyper and feel WORSE on meds than off. What's the point of that?
But chin up and rah-rah.
You are where I was around a year ago and no one would treat me at all. It is a slow business getting better but Dr P does understand the disease, even if most doctors don't. Hang in there. You will be alright. It is normal to feel like you do, the disease is hell.
Don't give up, it will get better. I am one of those who felt dreadful for ages and discovered (through this site) that it wasn't the medication ( I am one of the many who are fine on the dreaded levothroxine) but the way I was being medicated was all wrong. Ignorance of the doctors can cause so much distress. Once I had changed practices, found a doctor I could talk to, read up on what I should and shouldn't be doing, asked questions on this list and realised just how much I could help myself, then it all started to come together. It was a long old road but I am so finely tuned now I can't believe how well I feel. I still stay on the list though as there is always something more to learn and also I can give a bit back to people such as yourself and give encouragement.
One day, hopefully, we won't have to go through all this but at the moment it seems the only way. Stay strong and keep learning! There is light at the end of the tunnel
Have just had the results of a YorkTest and discovered I have intolerances to:
Egg White, gluten, hazelnut,sunflower seeds, wheat and yeast! That is going to be very tough. I have my first consultation with the nutritionist tomorrow so that will be interesting! Looking at what I can't eat seems to point me towards a Paleo diet? Could be worse I suppose.
Edysia, I was in the same position as you and worked my way through the different thyroid medications and many specialists.
It was down to ME to sort it, I was the one who pushed and pushed and to cut a long story short (my story is in a few parts in my first blogs) I found that purified levothyroxine and naturethroid were the answer for me.
My GP prescribes the levothyroxine and I buy the naturethroid and after 5 years finally got there.
The reason why it took 5 years - one year to be diagnosed, then I saw Dr P, spent a fortune on adrenals supplements and T3 which wasn't for me, then Dr Skinner where I spent one year trying armour and t3 - not for me.
We are all different and Dr P has helped many people but there is no certainty.
It took me 14 months to increase the purified levothyroxine up to my dose.
You CAN get better - if I can then anybody can! Please don't give up. We are all here for you, this is why we are here!
Hi Sue - I have just read your response to poor Edysia and noticed you take purified levothyroxine. Could I ask what that is, please? I've never heard of it. And what is naturethroid? Sorry to bother you,
Steph, it is no bother, this is what I and the other Admins and Trustees of Thyroid UK are here for.
Purified levothyroxine is simply levothyroxine with one filler, in my case calcium phosphate. The capsules are hand made by Martindales. My Endocrinologist prescribed them and when I could see that I could tolerate them (as I couldn't tolerate normal levothyroxine) then I asked my GP to prescribe them. I have a repeat prescription every 3 months, they are very expensive, £110 for a tub of 100 100mcgs capsules! and I take 225mcgs per day.
I tried normal levothyroxine on three occasions, just 25mcgs and after a few days my hypo symptoms were much worse and I felt totally stiff all over.
Naturethroid is like armour thyroid, it is desiccated pigs thyroid so it contains a little t3 as well as t4.
Totally empathise Edysia. Just been to my GP and my TSH is 14 - that's bad is it? My GP said it wasnt too bad but then said its the reason I feel so unwell at the moment. I feel like a car that is running on empty and can hardly get out of bed in the morning. I'm very new on this site and there's so much to learn. I did ask for a B12 test along with the thyroid next time - 4 weeks - but didnt have the nerve to ask for a Vitamin D (she seemed in a hurry and anxious to get me out!)
She has now put me on 25 mg levothyroxine daily, as I have had ill effects from too much (makes me hyper) and also with Armour that I took whilst with a private doctor - what do you mean by purified levothyroxine Sue? Now, why is the NHS not taking thyroid illness more seriously, especially if it is the cause of a lot of depression, tiredness and many other problems, it would save them a lot of money. And seeing from this forum, SO many people are affected by it.
If my TSH was 14 I wouldn't be able to get out of bed!!
Please try not to feel rushed by your GP - your health is so important! Ideally you need your thyroid antibodies tested too to see if you have autoimmune hypothyroidism, your B12, vitamin D, ferritin and folate.
When you have your thyroid blood re-tested then your GP will increase your dose of levothyroxine until (ideally) your TSH is under 1, your Free T4 is at the top of the lab range (do ask what your local lab range is).
How true is your last paragraph! sadly, this is why we are all here, thank heavens for Thyroid UK!
The more I read the more I realise how much I have to learn! I can barely get out of bed. Even if I've had 9 hours sleep. But because my GP doesnt seem to be taking it too seriously, I tell myself I must just carry on but I've just driven a distance and had to stop half way because of exhaustion. I do actually have Hashimotos, that was diagnosed some years ago. Is there no theory on why GPs dont take it more seriously? Thank you anyway Sue.
Many reasons I suppose, I think GP's only spend a small amount of time learning about the thyroid, it is easily treated for some but don't know why.
When diagnosed hypo we are entitled to free prescriptions and many more people are being diagnosed so there is the cost implication (I guess).
Then there is the TSH blood test which they heavily rely on instead of listening to the patient sitting before them they are looking at their screen to see what your TSH is.
Doctors are under pressure to follow guidelines rather than their common sense
How true Suze, my GP WAS indeed just staring at my blood results on her screen and hardly looked at me. I put my glasses on and stood up to have a better look too, and she seemed a bit annoyed! but they're my results arent they? But by treating us "Hypos" properly! they could actually save the money they spend on the anti-depressants etc etc they dish out ad nauseum! Grrrr! Thank you anyway.
I am dreading every GP visit. My TH is 13, I have also problem with sex hormones which is linked to thyroid ( sex hormone globulin low 15) My TPO are within NHS range <20 but I know it can changed quickly
I was deficient in D, B12 but I am taking supplements now.
I cannot even write much, I have seen my GP today and that was awful. I begged for repeating blood test , change of medication.... just nothing... I am exhausted and I really do not know what is going to happen with me.
Hi, I can appreciate how you are feeling, been there recently myself, you will be amazed if you get the right treatment how different you will feel, I have felt unwell for nearly 20 years, `been told it was depression given every tablet available nothing worked got into a spiral had cluster migraines wondered how I ever was going too improve, keep going to the doctors, change too different ones if necessary, you will be lucky like me and get somebody who cares and is willing too try something and you never know, my only regret is that I didn't find this website earlier and kept going too the doctors I just stayed at home, my medication isn't right yet but I have the best two weeks of my life, and I am sure when my doctor gets the level correct I will be completely better, I wish you luck karen :>)
Thank you hattiehound. I kept going to doctors for years, I am now more exhausted than ever.
I do not even know any more where I can find a good doctor.. People's opinion in regards to dr P and Dr S are divided... I am stuck and I haven't got a clue where to turn for decent medical care.
Dr P is a wonderful doctor - he will help you at least get on the road to recovery, if he doesn't sort you out, which he often does. don't give up - but be kind to yourself. Give yourself little treats, whatever they are. And there are lovely, lovely people on this site who will help you to sort out what you need to do. I have found this site to be a lifeline - please use it.
With love - and will be keeping you in my prayers,
Dr Shirine Boardman is in Leamington Spa and she is supposed to be utterly brilliant, either private or NHS. So I am told, if you see her either way she is so well-respected that she can get GPs to do good things and works to her uttermost to get the help required. She is my next choice if the Bolton chap was not so good - but so far he seems to be. I believe that she might be not too far from you.
I do not live far from Leamington Spa. I might try. She is controversial figure too. She had problems with GMC too. Also from what I have read she is mostly interested in Diabetes...
Is it OK for me to PM you about Dr S. B. in confidence?
I'd like to know if she can or could deal with a patient like myself (diagnosed with M.E. a few years ago) and this needs to be communicated only via PM as far as I understand to be discreet.
Many thanks,
x
Edysia
Your situation sounds dreadful and I believe you are not alone in this. Over the years, I have had doctors who prescribed me harmful drugs (prescriptions) and caused so much damage in so many levels. Yes, someone else said, you probably need someone who can be with you when seeing a doctor. If necessary, complain. (I know it's never easy to complain when you hardly have any energy for anything else)
No, not Dr P - although he started the saving-my-life process big style and I continue to see him. This is an endo who prescribes T3 - if you want his name, just pm me.
Edysia, allow me to be infuriated for you. I don't know if the doctors are heartless or trapped in a corner themselves but reading what is happening to so many hypothyroid patients is very upsetting. It's not as if you need a treatment that would cost thousands and thousands. Is there anyone who can speak in your behalf and accompany you to your appointment? I know it is difficult on your own.
They prescribed my tons of antidepressants and tranquilizers over the years, instead of checking me out for hypothyroidism properly.
I am harmed by drugs they prescribed me. They addicted me to Klonopin, and gave the strongest possible doses of Mianserin and other very strong tricyclic antidepressants. they prefer to do that than help.
Even more... now they jus want me to come of antidepressant and Klonopin because it is not good for me!! Not it never was good for me, but now I have trouble of coming off ... its been 10 years... on them
I could write a book of what NHS did to me. And I am classified as very vulnerable adult, single with no support, no family, on ESA in support group...an immigrant too, I came here 6 years ago.. my life has been ruined/ lost my job/ my studies/ my art .... Its appalling.
My sympathies Edysia, so much of what you say is my story too. I saw on my notes I was called "this middle aged woman with a long history of depression" this horrified me and I now know if I'd been treated properly by GPs I wouldnt have this "long history of depression", I feel so angry for us all now and totally mystified. x
Now they always use this excuse with me : ''it is all psychological'', ''do not investigate'', ''it will only make you worse if you do more tests'', ''it is all because you are so unhappy with your life''....
Oh wow, isnt this site a comfort?! To be able to share our experiences. My GP said yesterday I will be made worse by stress about money, feeling lonely etc - I said most emphatically, I didnt feel lonely and stressed about money, I was just frustrated that I cant do everything I would like because I'm so exhausted - and low because of "this"
I hope all new ones are heeding the warning and do whatever it takes to avoid what happened to you. It makes no sense whatsoever. It would be better to hock all valuables to get private treatment and private drugs if at all possible and end up broke, rather than to end up both SICK AND broke. I hope Dr. Peat does help you, it seems his heart is in the right place. I do hope you let us know
Edysia, having been where you are I can both empathise and sympathise. You will get better, life will get sweeter, if we can't be with you in person then please remember that we are all here wishing you all the best, Dr P will help. Come back and tell us all how you are soon. God Bless, Liz xxx
I wish I could be helped but I have lost on my hope.
I know that dr P help some people but doing my research and talking to others I have found that DrP doesn't always help... I just do not know whom to pay to get myself on the way to recovery( I have limited financial resources due to being on benefits/ I lost well paid job and study because of this)
I have lost my life.. my illness and lack of help just destroyed all I had.
Where do you live Edysia? There will certainly be someone involved with Thyroid UK who will be local and can therefore help and direct. It all seems insummountable right now, I should think most of us recognise that but you can get through it all, one small step at a time. I have found a brilliant Endo - NHS, and he has helped so much that I feel I have really turned the corner. Your time/day will come, I just know it xxx
I was pleased when I first found this site and encouraged that there were others having the same problems as me, however, I and beginning to feel rather discouraged now as there are so many intelligent and seemingly confident people who are STILL having trouble finding a doctor with compassion. I have searched my brain for some explanation of WHY doctor should be either so daft or so lacking in compassion. I am inclined to believe that they get more perks from treating depression and "fibromyalgia" CFS and ME than they do from prescribing thyroid supplements, which are, lets face it, quite cheap compared to the medecines which are substituted for them. I think it is possible that the drug companies do not want to lose the profit they make from a huge variety of mild altering drugs and be left with only the "cheap" thyroid extracts and generic drugs instead!
Unfortunately I do not have the luxury of changing my GP as there is only one huge practice in my area and I believe even the newly qualified doctors are discourged from taking seriously and prescribing for the hypothyroid patients. There comes a time when one has been knocked back so many times that going to the doctor is a last resort, if you can understand, that one holds on to but does nothing about because I can delude myself into believing there just might be someone out there who might help.
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Newbie - do I give up?
I feel like giving up
Feel like I wanna give up
Should I give up taking levothyroxine at night?
Giving up NDT
