So I am over it...BUT PLEASE REALISE THAT IS MY PERSONAL EXPERIENCE, SO I BELIEVE THAT OTHER PEOPLE MIGHT HAVE HAD A BETTER OUTCOME.
I am quite upset. I ended up crying during the appt. It was so draining for me to try to ask questions and to be ignored... I was upset that I could not discuss diet or supplements Vit B12, D3 etc...)
Dry sense of humour- maybe??? (I am not used to it, so it felt more like a sarcasm to me, but that's my subjective experience, everyone is different)
I did not go for diagnosis, I knew from my symptoms and blood test result that I am hypothyroid. I wanted to get some general advice how to handle it all, also I had a hope to talk about my gastrointestinal and menstrual issues which I thought are thyroid related.
I have to pay to see gynaecologist and gastroenterologist separately because Dr S is focused only on thyroid despite the fact that co-existing conditions I suffer from could be thyroid related.
I also had a hope for private NDT prescription, so I got that (NDT starting from 1/4 grain for first two weeks, then increasing to 1/2 for another 2 weeks)
I expected more advice to be honest... I ended up feeling more hopeless and lost than before the appointment.
I got the book from the office (£12 instead of £80 on Amazon). I had a quick look through and it feels like it was written by a different person (the tone is kinder, and there is more description of other health related issues than was discussed in person).
I am not sure what to do next? I will try NDT of course but there are so many things that had been left with not comments..
Don't give up hope. I've heard he does have a dry sense of humour, which is not necessarily what you want or need when you are feeling so bad. Also, don't forget he is under a lot of pressure at the moment which I know doesn't help you, but it does go some way to perhaps explaining why he may have been a little "off".
Hopefully he is just waiting to see how the NDT improves things. If your symptoms are thyroid relate (and they probably are) the only way to deal with them is to get your thyroid treated properly which the NDT will hopefully do.
I know you are feeling very bad and desperate at the moment with all you are going through and perhaps you could have done with a more sympathetic ear but, from everything I have heard, Dr S is brilliant and hopefully he will be able to help you.
I hope you feel better on the NDT. I am feeling better than I did but I still have a way to go. Remember we are here if you need support or just to "talk" about how things are for you.
Take care
Carolyn x
Thank you so much Carolyn <3 <3
It was all way too harsh for me
I do not even know if I still should take iodine supplements, and what shall I do if I cannot tolerate iron.... with very depleted diet I am going to be deficient of some of the vit, and minerals, especially iron which I just cannot tolerate at all ( stomach upset)
I just could not get any advice on that.
I will keep taking my B complex and B12 ( additionally as I was deficient in the past), plus D3. I also will continue with, vit A, E, Magnesium, Calcium, Selenium but I do not know what to do with iodine and iron at all....
Have you tried one of the liquid iron supplements such as spatone? I don't do well at all with iron tablets but I'm fine with spatone. The only thing is you will probably need at least 3 sachets a day to start with if you are actually iron deficient and that can work out expensive, but Boots often do a 3 for 2 offer on supplements so that helps. If even that causes you problems, you could try splitting it throughout the day with/after meals, so one sachet at each mealtime. Seafood and liver are also good sources of fairly easily absorbed iron. A combination of Spatone and liver and onion casserole got my iron up pretty quickly
I'm not sure about the iodine. This is quite a controversial subject. Do you know if your hypothyroidism is autoimmune (hashimoto's)? If it is, it is probably best to avoid iodine unless you know you are deficient. If you are not sure, you might be better trying to increase your intake of seafood (also good for the iron) and sea fish in general. With iodine it's best to start off slowly and increase slowly to avoid your body compensating for the extra iodine. I know that some people find iodine makes them much worse but it works wonders for others.
Just one other point, always take your iron (in whatever form) with or after food, otherwise it will almost certainly cause you stomach problems.
Hi - I am so sorry to hear of all your problems. I wish I could help you more, but here is one little thing: I have real difficulty with taking supplements too because of stomach problems, and have found that transdermal iron works rather well, which I was very surprised at.
You can get this online, or phone and ask to speak to David, who is very kind and knowledgable. He works closely with Dr Myhill in developing the transdermal sprays. They do have others, but I found the iron worked best.
I spray 5 - 10 squirts into my palm and rub it into my upper thighs and it has raised my ferritin levels. You can spray it directly onto yourself but I found it easier to contain it by putting in my palm first. Worth a try if it's one less thing to worry about?
I hope this helps and that the NDT will start to make you feel a lot better. I'm afraid it's a long road, but you are not alone.
Kanga xx
Thank you Carolyn. I will try spatone. Unfortunately I cannot eat any of the food you have mentioned, that's due to bad stomach problems. I can eat only boiled chicken, rice, gluten free bread, yellow cheese, natural yoghurts and bananas.
Dr S didn't say if it is Hashimoto's or not. My TPO are below 20. I don't really know..
The things you can eat seem to be quite bland, and I wonder if you have a very sensitive stomach that cannot handle certain naturally occuring "food chemicals", such as salicylates, and artificial additives.
Sorry you are having such a difficult time - just like so many people on this forum. Do try to be positive ....say positive things to match the positive things you have done and achieved. Your anti-bodies seem quite low so don't think at this point you would receive a diagnosis of Hashimotos.
Am sure you will soon feel much better and be better able to cope with all types of humour. Being poorly with Hypothyroidism does make one very sensitive.....it's the fatigue that slows down the processes within the brain.
As you have had so much stress - have you checked out Dr Rinds website for Adrenals - he has a page where you can check your thyroid blood results against various conditions. eg if your TSH FT3 and FT4 are all in the lower end of the range you may just need some Adrenal support. Just an idea.
I am one of Dr S's patients and indeed he does have a very 'quirky' sense of humour.His heart is in the right place and i do think he has a great understanding of the illness.I remember being very distraught before proper treatment from him and feeling very alone and misunderstood. This illness is awful, but believe me you will get improvement with the armour-but it will take time.The gynaecological and intestinal problems should improve too.
Do keep us posted on here about your symptoms and how you feel.You have come to the right place. x
Thank you janjan. Maybe dr S was different in the past... I do not know, I just can say what I how experienced recently.
I wish you a very good health.
Exx
I just know that my health will be deteriorating, and I cannot do anything about it.
Hi Edysia. I see Dr S too and like you I find his sense of humour different to mine. It can take some getting used to. However, he is the only person in the medical profession to have tried to help me and for that I can live with his sense of humour.
Dr S prescribes my meds and checks my blood test when I visit every four months, but even with his help I have had to take time to learn about my meds for myself, about how to increase the NDT and what works and does not work for me. Learning to listen to my body. It's been a long road of trial and error supported with advice and encouragement by people on this site. ( See my reply to Clarebear's blog this eve.)
Taking NDT has alleviated a lot of my hypothyroid symptoms such as stomach problems, IBS, and menopausal problems. I had tried all sorts of things to try and find solutions but in the end the solution was that my thyroid needed help and that help has turned out to be NDT.
Dr S originally suggested I try levothyroxine which was good but did not tackle all the symptoms. He then suggested a little NDT. This didn't work well with the Levo. I then found this website and decided to try NDT only and although it has taken since last August to get to the right dose I am well on the road to feeling well after 25yrs. I owe this to Dr S simply because no one else would help. Even now my GPs won't support me.
If I was you I would either contact him by phone or email (let me know if you need a contact email) and ask again if you should continue with all the supplements and vitamins you are currently taking. Just tell him you need straight answers to your questions and then try to follow his advice. It might also be a good idea to have your iron and Vit B/B12 blood tests done again to see if supplements are still needed. It may be the supplements are causing some of the symptoms. Too much of anything can cause a problem just as too little can.
Hopefully the NDT will help you although like me you may have to increase doses very slowly. Your stomach symptoms etc just might improve in time. I am still surprised at how much NDT has improved/alleviated completely so many symptoms for me - some very horrible ones too.
Do try and stay with Dr S. There are few in the medical profession willing to help. He is one of the good guys and as you get better you will feel more inclined to laugh rather than cry at all sorts of things, even his sense of humour.
But what's the point of fighting if I will never have a life again...
My all life was a torture, I have been through the most traumatic things that people can imagine. If you knew you would understand what I mean. I do not have anybody to rely on. I never had, It was always up to me to survive and I have worked so hard to make my life to happen, doing my first degree, starting another, building up a career.. against everything. On my own in a foreign country, losing my all family.. just everything I loved and now permanent disability, and necessity to deal with crap doctors.... ending up with no money, living on benefits and that's what is going to be like... ill and locked in a flat with destroyed dreams....
Dear friend, I must write to say that I am so sorry for what you have been through. To have the courage to come to a foreign country to make a better life and then to have the dream shattered must be so hard. I have sent you a private message hoping to encourage you.
Edysia, how do you know you will 'never' have a life again?
you had a very rough time by the sounds of it but please try and turn this round and look at it POSITIVELY, I mean: how many people go through everything that you have been through and then STILL stand up and fight and try to get better with hypothyroidism?
You are HERE right? why are you on the thyroid UK forum?? to seek help and answers, why did you go and see a private doctor? for the same reason: because you are 'fighting' for a better life and you are fighting ONLY because you are a special person who has got back up on her feet time and time again after each blow life has thrown at you.
So please stop saying these things, deep down you probably do not believe it either as otherwise you would have not done such a good job of carrying on and being here, you are a tower of strength.
I know, ever the strongest people feel like they are crumbling at times and all they want to do is cry, that is good, it is a release valve, my goodness I've done it so many times myself and I have also had a very hard life, I am also from a different country by the way and I was homeless twice here in the UK, I picked myself up again and carried on, I now have a professional job with a university qualification, I think of these things when it gets tough. I cried too believe me, but telling yourself you never have life again does you NO good.
A friend of mine has seen Dr S and has had a very similar response to yours when she first came out of her appointment, actually she thought she would never go back to see him, however she is still under his care and 6 months after she first saw him she has become a new person. She still is taken aback by his humour and that but he's turned her round totally ad he's the only one who is still helping her.
If I had some better times in my life maybe I would took what is happening now better...but I didn't.
Hi Dr. S is exceptional but he sees patients for thyroid conditions only, so, unlike an endo does not look into wider issues, this is just the difference between a private doctor and an endo.It does not mean Dr. S is not brilliant at thyroid just that he is not a highly qualified endo. I hope this helps.
Hi Edysia - I'm sorry to hear that the appointment didn't go exactly as you would have liked it to. As the others have said, you sound like such a strong person and I am sure you can come through this too.
This time last year, and for the preceding 9 months I felt utterly awful. I really felt like my husband and children would be better off without me. I had gone from being a very sociable, happy and outgoing person with a happy family life and an interesting career, to feeling like I could barely leave the house due to my horrible symptoms (vertigo, anxiety, insomnia, severe headaches etc etc).
A year on and I am so much better on NDT. I can't say it has been an easy ride because it hasn't, but I have carried on and it has been so worth while The help that I have had here on this forum has been the main reason that I persevered and have got better. You are lucky because you have Dr S to guide you too. Even if you feel that you didn't hit it off with him yesterday, he really does understand thyroid problems and has got so many people well. Please don't give up - you can get through this too. xx
technology arg, as I was saying I really hope that you get the results that I have seen with armour, I started on 1 grain though and now increased too 1.25 retesting in 6 weeks, my heavy periods have stopped and the cluster migraines, so within time I will see an improvement especially the stress of migraines, I am hoping that this will be the same for you, wishing you abit of good luck, I saw results quite quickly so try and keep positive, my thoughts are with you, k xx
Hi Edysia,
You will find with this disease that no doctor, however good, is going sort you out, just like. It's a very complicated disease and everyone's journey to get better is different. You have to help yourself in the end. As others have said, you seem to be doing that and you are good at getting for the medical help you need. I believe you were going to see Dr P. He is a very experienced thryoid doctor and also knows a lot about nutrition. He treats with adrenal and sometimes thyroid glandulars first so that the body is able to process the stronger versions of thryoid hormone and he recommends various supplements that you seem to be taking. His disadvantage is that he cannot prescribe and that he is not able to give you personal supervision in the same way a normal private doctor can, although you can book in follow-up phone calls and go see him for a follow-up appointment, but this can take time. Some people like Dr S's sense of irony, but I can see how others wouldn't. His treatment is more like an endocrinologist's in that he won't give you advice about nutrition and he only treats the adrenals if he thinks there is a real problem with cortisone. He thinks that by giving thyroid hormone the other systems correct themselves, which is probably what will happen with your gynaecological problems. Lack of thyroid hormone affects everything. However, what Dr S will do is to treat you so that your symptoms go away rather than relying on a blood test that has a range that is far too wide and he will also prescribe NDT and T3 if necessary.
I would stick with Dr S for the time being and be patient. It can take time to see changes, but you will. I would also read Dr P's book. In November 2011 I began to wonder why I was alive. My life had disappeared. I just existed and I dreaded the night times and kept ending up in A and E. My doctors were entirely unhelpful. I didn't know what was wrong with me and I was freezing cold, I couldn't swallow, I had IBS, attacks of raging anxiety that seemed to come on every evening. felt tired all the time but could never sleep, had a terribly dry mouth, terrible aches and pains all over my body, especially in the shoulder area, so I could no longer carry a bag, no muscle tone, heart palpitations, dizziness, etc. ctc. By sticking to a treatment protocol, these symptoms have mostly disappeared. You have to take it day by day. Easier said than done I know, but it's the only way. You will get better and there are a lot of people here who will listen to you because they have been in the same boat.
I would check to see whether you still need some of the supplements you are taking. I can't remember your history? Has your vitamin D level been checked?
I too see Dr Skinner and must admit I was very unsure after my first appointment. I think like you I was desperate as I had been so ill since my thyoridectomywith many visits to A&E with stridor and several hospital admissions. I also burst into tears when I saw him because I was so relieved to have somebody acknowledge my symptoms and explain what they were. My first appointment was a little surreal and my friend who came with me for moral support said the same (we are both nurses). However subsequent appointment was fine I think because I was feeling so much better and not so defensive. I am on Armour and it has taken me 11 months to reach a reasonable dose. Things are beginning to improve and some symptoms disappeared within a few weeks of taking a very small dose. I agree about checking regarding the supplements and some of them eg calcium should not be taken with or close to the Armour (I have hypoparathyroidism too and have noticed a difference by leaving 3-4 hours between). There were many times when I thought that it was pointless because I just didnt seem to be improving but changes are subtle so its worth keeping a diary. I hope you decide to give it a shot and not be discouraged as its a slow process and sometimes it seems you take two steps forward and then one back again.
I guess he wasn't as nurturing as you had hoped Edysia, but as others have stated, once you start on NDT many of the other problems he dismissed may disappear and he realizes that. I think iodine possibly is not a good idea when you go on NDT, just to be on the safe side as it is still questionable how it may affect your T4 and T3. I shouldn't make promises but I think better days are ahead for you.
I was so sorry to read your of disappointment with your visit to Dr S. and your sense of frustration and impatience - very understandable. I am pleased to see that you have had so many reassuring comments, and lots of encouragement, from people who have felt just like you do now, but are getting better. Perhaps I can also offer you a little comfort, as you are clearly at a low ebb and in need of some well-deserved tlc
I have lived in Scotland for nearly 40 years, and one of the things I love is the craic - quick-witted, off-beat, quirky, droll humour. It can verge on the black, never mind dry. I understand it, it is not a problem for me, I enjoy it and expect it, it's just part of normal life here. But, if you are not from the UK, let alone the north, I can see that it might become a problem - of perception, of cultural difference, of language, and misunderstandings might arise.
Add into that, tension and apprehension, a sense of isolation, of being unsupported, nerves, expectations, unfamiliarity - and then, to top it off, feeling very unwell. A recipe for an awkward, edgy experience?
Dr S is not a GP, he is a specialist in Thyroid Disorders - not in Brain surgery, or GI, not in Gynae, so I would never expect him to give medical opinions on these subjects - in fact he needs to be very careful about observing clinical proprieties. It is certainly not the case that he chooses not to discuss these things, but rather that he must not step into areas outside his terms of reference. I would not expect him to offer opinions on anything other than his field of expertise, I would expect to go elsewhere fo find out anything else.
I saw Dr S for the first time just over 2 weeks ago (in Glasgow). I knew I would be strung-up before going, and was very jittery, not sleeping well, tense - because he was my last chance, so a lot riding on it. Everyone on here was so supportive, just like they were to you. I had prepared a list because I knew I would forget what to say in the panic of the meeting.
I found him straightforward and plain spoken, direct - not patronising, paternalistic, over-familiar or condescending. Professional. He accepted my list. He was encouraging and gave me information on various treatment choices - but it was my decision as to which direction to go. Quite unlike a GP or NHS consultant. The nurse on reception said to get in touch about anything if I needed - perhaps you could do that, and simply explain that you were a bit out of it all in the consultation - I would lay a bet that this happens often with first appointments. Most of the people who go to see him will be at the end of their tethers, having run out of other stock options, and will be as calm as a bag of cats!
The most important thing seems to be that you have started your journey to recovery, you have the NDT you wanted, and you do have support - lots of it - on here. Much to be cheerful about, although I can understand that you are feeling a bit low just now. Have you tried to find a local support group in your area? When I am well enough, I have had to take responsibilty to educate myself about this - and all my other health problems.I can only do it bit by bit, but I am doing it - and so will you. As others have already said, you are stronger than you know, and you will get better.
Believe in yourself and build on this positive start.
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Back from 1st endo appointment😨
Dr. just emailed and I am finally optimal!!
