crying all the way back from the GP appointment this morning....

[Icicles]

Feeling very very very ashamed because I consider myself a normally assertive person, however....

I think of myself as lucky to have found a private endo who prescribed me a trial of NDT, raising it appropriately (according to advice I have received through this site and contacts I have made through this site [for which I will be eternally grateful] ) until just recently when they added in Levo 25mcg instead of a T3 increase which might just have got me into optimal.

Feeling very frustrated I contacted them and they advise to retest in 3 months, but a more thorough consultation will cost money (who can afford to keep paying out money to be told ‘no’?) and the temptation to purchase from Thailand is enormous now.

One member said something really helpful, about the value of a prescription and a supply, which I really really appreciated, but come blood test time, my results are (hopefully) going to be so fabulous that the prescription will be the same, and I am going to run out if I take more than they prescribe aren’t I? And I find it really hard to break rules.

I realise that I keep asking for more and more encouragement, which you lovely people keep giving, and I struggle with the courage to implement it. I feel ashamed because it sounds like I don’t want to feel better, but I have been on holiday this week and have felt pretty bloody awful, not sure if it can be the extra, tiny increase of Levo, but I have also added another kilo of miserable weight and I want to start living life now. Arrived home to hear of the death of a relative who certainly didn’t address her thyroid problem herself and left it to NHS fools.

On top of it all, just had a lecture from my GP about thyroid treatment, walked out forgetting to ask for blood tests!!!!!!! I take all my supplements religiously following SeasideSusie’s advice. I am going to swap to Thorne’s for my B and folate, but forgot to ask for tests today having been on them for 3-4 months. I’ll call in and ask her to authorise them, but she is running out of patience with me.

I’d be really grateful for advice (again)

[m7-cola]

My heart goes out to you. I know how frustrating it is to be confronted by such unseeing doctors who know very little but behave with such arrogance. Don't be hard on yourself because you forgot to ask for a test during the appointment. I remember being so upset during a consultation that my blood pressure went through the roof!! The doctor kept repeating the test..saying she was surprised at my high readings!

[Icicles in reply to m7-cola]

I hope that you are feeling well, m7-cola and thank you for your support. She actually said to me ‘you might have been able to find someone to prescribe for you, but those thyroid medications are not good’ and then promptly tried to prescribe me a low dose SSRI for feeling hormonal. ‘That would be my advice’....I think that if she had been doing my blood pressure at the time there would have been a rapid increase. And I think that now she has me down as some sort of histrionic trouble maker who spends too much time on the internet! X

[HappyH81]

Hi Icicles,

I was the same yesterday. Tried so hard to be assertive, had a speech and everything prepared but it went to shit when i started talking and got upset.

I am looking at your results. Have you been diagnosed with a thyroid illness. Reason i ask is i am trying to get a diagnosis but after visit yesterday i dont feel hopefull. They have told me that maybe im depressed or have chronic fatigue syndrome. I posted my outcome on here yesterday and i was told not to accept those diagnosis and that a lot of people on here dont have much faith in the NHS.

My results seem quite similar to yours.

[Icicles in reply to HappyH81]

Thank you for your reply, HappyH81.

It doesn’t help that I feel like a charlatan, because I don’t have a straightforward high TSH, but I am treated so mine has come down, and the more thorough testing via Medichecks reveals that treatment is changing my numbers. The trouble is that going by numbers alone is only part of the picture, and if we have symptoms, they are an enormous part of the diagnostic picture.

I love to read the posts and replies from assertive self treaters, and I know that one day I will just do it.....any time now.....why wait.....but, like with my GP this morning, I don’t like to break the rules.

I was in the pharamacy afterwards and noticed a poster for viagra, it can be bought without prescription now. Men can diagnose themselves with erectile dysfunction and treat themselves, it just made me laugh. I couldn’t help thinking that if more men struggled with the dilemma I’ve got, it would be made a whole lot easier, and when I say that to anyone, I know that I sound like some paranoid conspiracy theorist, but I do really believe that, and the problem I went to the GP with this morning, well she thought that I was hormonal, rather than justifiably very very angry at something going very very wrong with me!

You may have to consider the same route as I. Get your vits and minerals to proper SeasideSusie Standard Optimal, and find an endo (maybe privately) to do you a trial, OR, do yourself a trial. People on here will really help you, as you have discovered. I hope that you are less rulesy and anal than me, though xx

[HappyH81 in reply to Icicles]

After the advice from people on my post from yesterday I have decided to see how the latest blood tests go and if I have no answers I will probably self medicate. We know our bodies and we know things are not right.

If you want to check out my post " jist back from the GP" and read some of the info regarding gp's and nhs etc. Its enlightning but worrying.

Xx

[Icicles in reply to HappyH81]

Thank you, I had a look at your posts, and I thought that they looked a bit like my first posts! We will get there with the help of thyroiduk and Healthunlocked. We both found our way here which was the start of things getting good xx

[Aurealis in reply to Icicles]

From one charlatan to another ... they made me feel like that for years and years. But things are different now with thyroid U.K. stand your ground and never doubt your own judgement. It’s the only certainty we have. Good luck x

[Icicles in reply to Aurealis]

Thank you Aurealis, I am ending the day in a much better frame of mind than I started it, I’m binning the Levo and trusting myself and what good people here have been generous enough to share xx

[Hidden]

Hi Icicles - Can understand your frustration about your prescription. Can't comment on your individual blood tests but can point you to an article written by the late john Lowe

who indicates that information is false when it claims that T3 does not pass the brain barrier. TItle The Belief that T3 does not cross the brain barrier is false Dr John Lowe.

He indicates that transthyretin is the protein that transports the T4 across the blood brain barrier - it also transports T3 across but in lesser quantities as it is lowered byt the impact of PCBs and dioxins. Polychlorinated chlorine hydrogen and dioxins are found in fat we eat and in animals and fish. They are found in industrial atmospheres and are everywhere but to a lesser degree in rural areas. It could help to filter your water with a cartridge which will remove chlorine. I filter my water every day and wash vegs and fruits in it.

Certain types of fats might be screened out of your diet as they may contain pcbs.

An article link greenfacts.org gives an insight to pcbs in the environment that can affect health. You could ask Marz on the member list where it safe to buy NDTs abroad as she is so experienced. Prescriptions have been cut of T3 due to recent legislation so you have to prove you need T3 as if you need it then you can get it on prescription. If this was a fault in prescription from usual you could phone the endos secretary to explain you normally have T3 and has there been a mistake as the prescription you had is not working. She might then let you talk to the endo on the phone, or give him a message to see if he can revise the prescription. Take care.

[Icicles in reply to Hidden]

Thank you hawii60, I will definitely look into what you say and think about how to find a reliable source for NDT. Thanks for taking the time to reply

[Hidden in reply to Icicles]

Other administrators might give you info thru private message service. Hope you get it sorted soon!

[greygoose]

I am an extremely assertive person. Sometimes. But, sometimes we just find ourselves with the wind knocked out of our sails. It can happen to the best of us. Nothing to be ashamed of. And, we all have off days, when we haven't got the strength or energy to argue.

I haven't seen a doctor for myself for a long time - it's bad for my blood pressure. But, I did see the vet for my hypo dog in July. Our vet was on holiday, and it was a stroppy little replacement who knew nothing about thyroid. She insisted my dog didn't need an increase in dose - he did - and he was just over-eating - he wasn't. She refused to believe that thyroid had anything to do with weight gain. Had it been our usual vet, I would have been able to discuss it calmly with her. But this one! I'm sitting there, getting more and more annoyed, and knowing that if I started I wouldn't be able to stop. And, I really didn't want to make a scene at the vet's because there aren't that many vets around here, and I wanted to be able to go back there. So, I bit my tongue, and fantasised about punching her on the nose and my dog ripping her thyroid out. And the longer I said nothing, the more I knew it would be terrible if I did speak. And I was torn between giving her a lecture on thyroid that she wouldn't listen to, or going back to me-treating my dog and giving him the increase that he needs with levo bought on-line. I eventually decided that silence was the better part of valour, and left with a brief nod and a scowl. God, I was angry! But, what can you do?

So, don't blame yourself, we have to chose our battles carefully. Some just aren't worth fighting.

[Icicles in reply to greygoose]

Thank you greygoose, I know that you are right. In 10 minutes I couldn’t even begin to tell her everything that’s wrong that makes the appointment with her so crucial and if we start disagreeing I don’t get what I need, which is the Vit D, iron, B and ERS blood test that she will take notice of (as opposed to the one that I pay for which she dismisses and doesn’t even look at) and I didn’t get round to requesting it. So yes, not a battle worth fighting or getting upset about. I have to focus on how she can help, rather than try to convince her of something she’ll never believe. 🙂

[greygoose in reply to Icicles]

That's very wise. Get as much as you can from her, then go home and do things your own way.

[Hidden]

Hi Icicles have been looking at a post concerning sudden vertigo written by Margo a couple of days old. In response, information is available on a new source called mourneadventurer drops made in Germany. Crabapple was responding with information

as to how to find the drops which were reviewed as better than tablets. You can find Margo's new post by typing in her membership and list of posts. This is used in addition to preparation for thyroid hormones or NDT. Shows info how to find what you want.

[Icicles in reply to Hidden]

Thank you, hawii60, I will look into this, you are very kind xx

[Hidden]

I find it really easy (to break the rules) as you put it. I have never smoked, always eaten a healthy diet, only drunk very little and kept fit. ( Never been arrested or done drugs either)

I have only become well after my thyroid was removed by joining this site and breaking the rules I now self medicate and feel well again.

[Icicles in reply to Hidden]

Thank you Bunnyjean, it’s got to that time when I am going to ‘break the rules’ and begin to feel well.

I just took an increased dose of NDT this morning, I am going to run out before the end of the 3 months so I will have to find another source.

Is it cheeky to ask if you could pm me any advice on this? My guess is that I’d have to ‘stock up’ but that must mean paying out a lot up front, and I’ve got a bit of anxiety, obviously, about that. I noticed some posts about what to say to the bank about what it’s for, western union, can’t use PayPal or MasterCard, etc. I’d be most grateful but would understand if I’ve crossed a line....crikey, this stuff is really hard for me! Xx

[HappyH81]

Just a query to everyone posting on thus page, at what point do you just trust yourself and self-medicate? And what if you need to make changes at work due to your own self-diagnosis if you dont have a gp's letter to support any requests to reduce hours or request changes in shifts. I work shifts you see and i find early shifts a struggle.

[Icicles in reply to HappyH81]

I contacted a private endo from the list at Thyroid Uk who was relatively near to me. They were willing to start a trial based on my Medichecks results and several hundred pounds and 6 months later I realise that they are using a ‘range’ for blood results that are just short of where the experts on this forum might say would be a better ‘optimal’ to aim for.

You could see whether that route would work for you, and hopefully as soon as you begin your treatment journey you will start to regain your health and strength. The point I have reached is another 5kg weight gain over the last 6 weeks, I think that hanging around the pre optimal mark has been very detrimental to me. I was just feeling as if I were ‘getting somewhere’. I know that with the help of this forum I can feel better, obtain advice, looking back on old posts is a fabulously affirming thing to do, there is so much wisdom here! I have some great contacts with people and they’re very generous with their own experiences, so I know all about testing and monitoring myself and I feel confident that I can literally put a post out which asks what to do in this situation, and someone will answer, or there will be a very similar question out there already with helpful advice already given. And what I have just recently had confirmed is that GPS are good for some things and I can get those things out of them, but, nobody should really care more about my health than I do. Your GP may still support your need for certificates, on the basis of other symptoms, but I am approaching this new phase for me, with an attitude of, ‘this is where it all starts to get much much better’

Good luck xx

[HappyH81 in reply to Icicles]

Financially im not in a position to go private. I am waiting for another round of blood tests, pernicious anemia, B12 (again) and vitamin D so its kind of just waiting to see wht they results will be. However I am still suffering but do not want to start supplimenting until i have had these tests. Ive ended up with really bad balance problems for a week now and i am unsure if its my low folate or labrynthitis brought on by a cold 🤔.

This support group is amazing though and i would be lost without it.

Good luck to you aswell xx

[holyshedballs]

HI Icicles

I'm reading your post and the helpful replies. what a great forum this is with all the support patients receive from fellow sufferers. It's funny how certain themes come in waves!!

My perspective is not on your direct management of your condition which others are better able to help with but on the phrase "I don't like to break the rules".

My view is that there are NO rules about what treatment a patient receives. I am not aware of any rules a doctor has to follow or any rules a patient has to follow.

There is guidance for both doctors and patients, but there are no rules that either a doctor or a patient has to follow them. Both can deviate from them if they have good reason to do so.

It has been made clear by the courts and the law that a person is free to decide on what treatment they would like. This does not mean that the doctor HAS to provide what the patient wants just because they demand it, but the law has said that if a doctor does not act logically s/he is negligent if a patient is harmed by that illogical act.

So what I am trying to say is that you perfectly within your rights to demand that the doctor treats you correctly. You are perfectly within your rights to treat yourself if you are not happy with your doctor.

I went down the self treatment route after numerous lengthy conversations with my Endo. I didn't have the energy then to make formal complaints about the illogical methods and conclusions the GP and Endo came to. We agreed that I would pay for T4 privately and my Endo would take regular blood tests, knowing that I would take the T4 no matter what he said. I told him that he needed to do that to ensure that I didn't give myself thyroid poisoning. He knew that I was implying that because he knew about my self medicating he would be negligent if he didn't monitor me.

I recently saw a progressive Professor, who wrote to my Endo and GP strongly advising that the GP prescribes the T4 and possibly NDT if necessary. The GP has now prescribed T4 and is taking over the monitoring. I feel OK on T4 and good NDT so sometime soon I will broach the subject of NDT on prescription.

What I am trying to say is there are no rules when it comes to your health and you must have the confidence to make yourself better.

And a final piece of advice - ALWAYS bring someone else with you to a consultation. They can take over if you are unable to continue for what ever reason. it may be useful to write down you questions and concerns and for both of you to have a copy. Your companion can write down the responses or as I said take over the questioning and responses when necessary. So depending on your companion, you can carry out a rehearsal of your visit. Some people can do it, others cant. It's up to you, but take someone with you.

[Icicles in reply to holyshedballs]

Thank you holyshedballs I like what you did there with your GP and Endo. And yes there are no rules, and while I have been limiting myself to living by some, I have been mostly not very healthy. The first people I have come across who have been interested about that have been on this forum and I cannot believe how far I have come in a few short months, I’m going to investigate Thailand today! And when I feel better it’s going to have had a lot to do with the generosity of you and others like you who have taken the time to help out. I have been thinking about what you said to yourendo and it gave me a new direction to approach the receptionist from when I rang to request that the GP write me up for some blood tests, so that has helped me with my attitude. ‘I may be taking supplements that you didn’t think were necessary and you might not think that I needed anymore VitD, but I took them and you should check that I’m not overdoing it because you are my doctor’ kind of thing! 👍🏼😄