New to Graves, no idea what's happening, help!!

[Tibs]

Been diagnosed with Graves Disease, having a hard time with it at the moment and can’t seem to get answers anywhere else. Sorry if I’ve posted in the wrong place or anything, I’ve only just discovered this site.

I should say that I have had really really bad experiences with doctors in the past and I don’t trust them, I’m scared of them and I thoroughly research anything they tell me to do. Until recently, I hadn’t been to a doctor in c.12 years. I’d been suffering with what I now know are hyperthyroid symptoms throughout that time, but I just put it down to being stressed/tired/getting older.

Specifically, I’d always been underweight, despite having a huge appetite, and I mean huge. I’m a size 6, ate 5-6 huge meals a day, loads of chocolate every day and never put on a pound, I was always hungry, this stems back to my teenage years. In the year or so prior to diagnosis I had put on weight and couldn’t seem to shift it. I’ve had diarrhoea for about 6-7 years, insomnia for about 10 years, muscles have been getting gradually weaker over past 10 years, unexplained muscle aches, joint pain, all of which I ignored. I’ve always been cold, colder than anyone else, that hasn’t changed in all this time. In the 2-3 months prior to my ‘breakdown’, my hair started falling out, my skin became so disgustingly dry that it was peeling, flakes of skin falling off everywhere, my eyes hurt, my head hurt constantly, I felt sick and anxious all the time, palpitations etc, but I did have a lot to worry about and I put it down to stress. I had noticed a lump in my neck getting bigger, but it seemed to come and go depending on how stressed I was, so I thought it was a gland fighting infection (I had no idea what or where my thyroid was until 2 months ago!).

Mid-September 2012 – had what I thought was a breakdown over excessive stress levels, I was dealing with too much and one day I just couldn’t cope anymore, couldn’t get out of bed, couldn’t stop crying, I seriously thought my head was going to explode. I couldn’t follow a conversation properly anymore, couldn’t learn or retain new information, couldn’t think of even simple words. Went to GP as I was incapable of working, signed off with stress.

End-September 2012 – returned to GP, signed off with stress for further 2 weeks.

Mid-October 2012 – returned to GP, all symptoms had gotten a lot worse, I was shaking uncontrollably, (to her great credit) she noticed my neck was swollen, checked my blood pressure and pulse, which were wayyyy too high and advised me that she suspected hyperthyroid and referred me for blood test.

This came back a few days later and confirmed hyperthyroid. Treated with Carbimazole (5mg, 3 times a day) and Propranolol (40mg, 3 times a day).

Referred for ultrasound which showed severely enlarged thyroid, but smooth. I was told it was Graves Disease. Referred to endo, who didn’t listen to me, he kept asking me the same questions over and over, clearly not listening to my responses. I wasn’t sure if this was some type of test for Graves Rage, but I was on the verge of shouting at him and walking out during the appointment. He didn’t tell me anything, I had to ask questions and got brief answers, if that, but he did confirm Graves Disease. He recommended I reduce Carbimazole to 5mg, twice a day. He asked why I hadn’t seen a doctor about my symptoms earlier, I explained fear of doctors, he just laughed! He recommended surgery, I rejected this.

Mid October – mid November 2012 - I began feeling a lot worse, I’d always had mild palpitations, but these became almost constant, resting pulse rate even with the Propranolol was 122bpm, muscle aches, hardcore insomnia (sleeping maybe 1-2 hours a night). My TSH level remained the same, but my Free T3 was dropping rapidly. I believed the Carbimazole was giving me unwanted side effects, GP disputed that, eventually she looked it up and agreed they are rare side effects of the Carbimazole.

Mid November – early December 2012 - I started feeling better, so started reducing my Propranolol, which started helping me sleep a bit better. Heart rate had also reduced back down to normal.

Beginning December 2012 – I started getting muscle cramps, pain in my neck, extreme tiredness, sleeping all the time. From not sleeping at all at night, to sleeping 10-12 hours a night and needing a 2-3 hour nap during the day. I got a cold/sore throat, but due to my fear of doctors/hospitals, I didn’t report it, I stopped taking the Carbimazole. I then resumed on a reduced dose of 5mg, once a day, as I suspected I was going hypo.

Mid-December – GP telephoned me to advise my latest blood test had come back ‘bad’. I asked how bad, she just repeated ‘bad’ and to reduce my Carbimazole immediately (which I’d already done). This is why I’m getting so frustrated, no one is telling me anything, I have to keep asking questions and I don’t get any answers. I had to ask for a copy of my lab results to compare levels, I got my TSH and Free T3 sent to me, but nothing about T4. I went to see GP re these ‘bad’ results and she said I’d gone underactive and Free T4 had changed, but according to my previous lab results these hadn’t been tested!?? It doesn’t make sense to me. I asked how underactive I’d gone and she just said underactive, I asked whether it was borderline or bad, and she just repeated bad. Getting so frustrated it’s unreal!! Told me to come off the Carbimazole completely and they did more regular blood tests to check levels. Currently exhibiting symptoms of being both under and over active! The palpitations are back also.

End-December – Thyroid continuing to go more underactive, she wouldn’t tell me my TSH result, only that if it reaches 10 they will need to put me on thyroxine.

4/1/12 – GP called and said TSH has reduced to 4.6 which is good, but the Free T4 is a bit up at 5. I don’t know what the lab range is for any of these tests.

Seeing endo again in 2 weeks, seeing GP again in a week, but I’ve lost faith in them now. I know my GP is the best in the area, and there’s only one endo in the area, but I have totally lost trust in them. They said it’s rare for my levels to have dropped (risen?) so much in that time and they weren’t really sure what to do. I’m sick of this now, I’ve been off work for 4 months, I feel worse than when this started, they are pushing me to have my thyroid removed which I really don’t want to do. On top of this, I am vegan, I was told Levothyroxin contains animal derivatives, something I don’t want to take, GP said there are no alternatives in the UK and wasn’t interested in my beliefs about this. Can anyone confirm if this is true? If I really do have to have my thyroid removed eventually, I can’t bear the thought of having to take pills containing bits of dead animal for the rest of my life!!

I’ve also since found things on internet sites that suggest soya products could contribute to hypothyroidism, as I’m vegan and eat a lot of soya, I’m concerned about this. Can I insist on a referral to a dietician, would they be able to help me work out what to eat?

Has anyone got any experience with natural alternatives to all these drugs and treatments?

I am sick of the doctors not answering/not being able to answer my questions, my levels are now going up and down on their own without any medication at the moment and I have no idea how to fix it! All the information I get on this has come from the internet, no doctor has explained any of this to me! This frustration coupled with my fear/distrust of doctors is making this really hard for me to deal with. I just want to feel better!!!

Currently, main concerns are – can’t think properly still, can’t make decisions, can’t think of the right words or follow conversations properly. Immense mood swings, flying off the handle at minor things, I’ve dumped most of my friends, others have dumped me, so I’m alone now and no one to help me. I am SO tired, all the time, some nights I sleep, some I don’t, I’m still just as tired either way. I had started walking 30 minutes a day once thyroid level dropped towards normal, almost overnight I found I couldn’t even walk 5 minutes anymore, that remains the case. Minimal appetite, hair has started falling out again, my skin has started flaking off again. I’m trying my best to learn about thyroid disease and work out how to treat myself, but it’s such a struggle reading and remembering things! I’m only 30 but I can’t walk very far, do normal social things and can barely even look after myself/keep the house running most days. I really feel like I’m right back where I started from 4 months ago!!

Lab results:

10/10/12 – Free T3 – 14.80 pmol/L

- TSH - 0.03 mu/L

19/10/12 – Free T3 – 8 pmol/L

- TSH - 0.03 mu/L

1/11/12 – Free T3 – 5.8 pmol/L

- TSH – 0.03 mu/L

15/11/12 – Free T3 – 4.10 pmol/L

- TSH – 0.03 mu/L

19/12/12 – Results not given to me – just told I was underactive and TSH has increased.

28/12/12 – Results not given to me, but told it is worsening and if TSH reaches 10 they will put me on thyroxine.

31/12/12 – Free T4 – 5 (don’t know previous result so can’t compare)

- TSH 4.6 (told this has reduced, but I don’t know previous result)

Free T3 result no longer being given to me.

Free T4 is new, they haven’t been giving me this in lab results.

My next blood test is in a week’s time, seeing GP in 10 days time and next appointment with endo is in 2 week’s time. I’d really like to know more about what my options are and what I should be saying to them at these appointments if anyone can help me at all please I would be so so grateful. I’m totally lost and all of this is way over my head now and no one is explaining it to me and I can’t find anyone else who has been through it! I’m really sorry if any of this doesn’t make sense, I used to be such a beautiful writer, now all my thoughts are all over the place and I can’t say what I mean to say anymore!!

[Hidden]

Oh bless you Tibs, what a rollercoaster! I don't know how much help I can give you, it sounds like you really need to see a different endo, insist on it as it's your right to have a second opinion and choose outside your area if you wish. I would find someone to go with you, to help remember whats said if possible.

I was hyper, Graves too and very similar symptoms to you. After a year on carbimazole/betablockers I had thyroid removed. It wasn't the greatest decision I ever made but I didn't want my eye disease to worsen and this stopped it. Your endo could have had you on block and replace, where they give you carbimazole to stop thyroid production and thyroxine to act as a thyroid. That's the theory though lots of us don't cope well with thyroxine alone. I had to stop it and take natural dessicated thyroid after six years but some do well enough on it.

First things first, I would get a referral to different endo. Have you had your heart checked out? The years of being hyper can take a toll on it and you should have it checked by a cardiologist. Demand this. Also get your ferritin, Vit D, follates, b12 checked and here's the kicker, DEMAND the reference ranges for ALL blood results, it's your right, they are your blood tests. Being hyper/hypo depletes us of essestial minerals/vitamins and these need to be optimal to help you feel well on any meds.

When you were on carbimazole, did they warn you to go straight to doc/a&e if you took a sore throat? It's imperative you do as this can be low white cells and dangerous. I know you are not on them now but a full blood count is needed frequently whilst on it. Did they do one recently? As an immediate, I would try some magnesium supplements to calm your heart/palpitations, I suffered them when hyper and hypo. Magnesium and D-Ribose supplements seemed to work wonders.

[Tibs in reply to Hidden]

Thanks so much for replying. Does having the thyroid removed stop the risk of the eye problems then? I have lid lag and eyes get sore and I'm terrified they're gonna get worse or pop out!

I've not had heart checked, I kept mentioning it to GP and endo and both kept saying it was nothing to worry about, I will ask again about getting it checked properly.

No I've not had my vitamin levels checked, it was something I wrote down to ask them to do but I keep forgetting to ask for it. I'd been taking Vit C, B complex and calcium tablets for ages but I stopped taking them in case they interfered with any results. I just feel so rushed in the GP appointments that I forget to ask everything I mean to.

I knew I should go to hospital when I got a sore throat, but I get them a lot anyway and thought I'd be ok. They tested my white blood cells before I went on it but not since then, as far as I know. I did later tell the GP I had a cold but she didn't seemed concerned about it.

Thanks for the tip re Magnesium and D-Ribose, I'll definitely look into that. I started taking valerium to help me sleep and it worked wonders, or maybe I was just going hypo already by then, lol.

[Hidden]

I'm not sure that levothyroxine does contain animal fillers but you certainly wouldn't want to take NDT which is made from pig thyroid. There is a purified levothyroxine available. If you are vegan, it's possible you are already B12 deficient which gives terrible symptoms. Do you have this tested?

[Tibs in reply to Hidden]

Thank you, GP didn't know but what I found on internet indicated it did. I've since found on this site a drug company in Holland which produces a vegan levothyroxine so I'll find out how to get that if needed, thanks. I'd take something which contained lactose if I had to, but I certainly wouldn't want the whole pig thyroid thing, talk about making things more complicated for myself lol!

[helvella in reply to Hidden]

If you care about animal origins you will probably have to communicate with the manufacturer. If it says, for example, magnesium stearate that could have animal or vegetable origin.

[Hidden]

Hi Tibs, yes the antibodies that cause the eye disease stop circulating when the thyroid is removed/become hypo apparantly. Was mostly my left eye, dry, bulgy and droopy and it stopped it in it's tracks and it's improved loads since then so on balance, I am glad I had surgery with regards that. However, I wish I'd done my research and chosen a surgeon more wisely. I ended up losing my parathyroid glands during the two ops (first op was disaster) and the truth is, the risks are far fewer with a surgeon who does this day in day out. My surgeon was too general.

But don't worry about that for now. You need to get your levels stable. Lacrilube at night helped my eyes, have you got some from doc?

[Tibs in reply to Hidden]

Thanks so much laladrew, this is all really helpful. I'm so sorry you had such a bad time with the surgery, that sounds horrific! I hope you are ok now?

I've never heard of that, they didn't seem concerned about my eyes, just warned me to keep an eye on it, as it were. I'm due an eye test anyway so must get around to making an appointment and getting them checked out properly.

[editfmrt]

Hello and welcome Tibs - you have found a good place.

I was staggered when I read your post because your journey has been almost identical to mine and all at the same age too. I had the same dislike and mistrust of the medical profession and it has remained and been confirmed as justified. Like you (and unlike typical symptoms of hyper) I was freezing cold all the time but I have now put that down to the weight loss and muscle wastage. There is no point in me repeating the rest of my symptoms, I could just copy and paste most of yours!

One difference for me was that the internet was in its infancy so no information to go by except a couple of library books. No way could I get blood test results. That said, it did not occur to me to ask. Things are different now.

You have done an absolutely fantastic job researching so far and well done for getting the test results. You have learned quickly that no-one is more interested in your health then you. You can be dammed sure it will be luck if they bother to read your results properly let alone analyse them against your symptoms and medication dose.

Keep working on getting the ranges and if you have access to spreadsheets can I suggest you start recording them now with a column for medication and symptoms alongside the results. You will be amazed at the picture it will give and save you the effort of remembering how you were at the time.

I went hypo after Radio Active Iodine treatment. However, I too had spells of hypo during my Graves treatment from over medication with Carbimazole and beta blockers. I didn't have the benefit of being told my results, so all the symptoms merged into one sorry mess. I just wanted to die and even after the thyroid storm which hospitalised me, the continued treatment actually made me feel even worse than I did before diagnosis. I could barely walk too and I had excruciating cramps all over my body.

So the big question for you is WHY have you gone from hyperthyroid to hypothyroid? If you have true Graves, then I would strongly suspect you have been overdosed with Carbimazole. Of course they are not going to own up to that voluntarily are they? I would ask them to tell you why. If you can establish it has been caused by too much Carbimazole, then, are they giving you thyroxine to correct that and will they put you back on Ccarbimazole with thyroxine? This is known as block and replace. These are some questions you may like to ask.

Some people do have success with managing Graves this way. Occasionally, it goes into remission and they can stop medication. It could come back. However, it seems you have had Graves for a long time and so remission may not happen for you. If Carbimazole or block and replace do not work, the other alternatives are Radio Active Iodine treatment or surgery. Can I suggest you might like to put that on the back burner for now and concentrate on getting immediate answers to see if your treatment can be improved.

I still remember one piece of advice I was given by another thyroid patient in the hospital waiting room that kept going round in my head. This guy said to me, 'you will never get to grips with this until you take control yourself'. He went on to describe how he made his own decisions about what dose he needed. I thought he was crackers - I was just too ill. Decision making was impossible.

The support from my GP and the hospital was appalling - eventually I realised they didn't know what they were doing, the gaps between appointments were too long, the blood tests too intermittent or taken at the wrong time, the doses they told me to take were pure guess work. I would see one consultant at one visit who told me to up the dose, then another at the next appointment would tell me to put it back down to the same does as before. How the hell was that going to help? In between time I felt my life was ebbing away.

I believe mismanagement of Graves was the reason that Carbimazole treatment did not work for me. I accepted RAI treatment. I won't go into the nightmare of that, but in one way it helped, because at least I knew for certain I was definitely hypothyroid. Then came the journey with thyroxine - no other choices.

Very slowly, I started to recognise what was happening to me and those words from that other patient still went round in my head. I went like a good girl to all my appointments. I used to sit on my hands as if it was a way to stop me from thumping someone. I had visions of killing someone and my anger was overwhelming, so much that I could barely even talk to them. I listened to the rubbish they were sprouting - and then decided to adjust my own dose of thyroxine to what I thought I needed. Eureka!

At my last hospital appointment, I told the registrar he was wrong when he told me my thyroxine needed to be reduced and I was not going to do it. He was gobsmacked and told me he was going to report me to the Professor. 'Do what you like', I said, 'I'm not listening'.

He left the room and got THE Professor to come in and talk to me. He asked me to tell him what I had been doing, so I explained I had been adjusting my dose very slightly, every other day. 'Good' he said, "Now I know you are on the road to recovery. Some people are very sensitive to even small changes and you will know your body best. Just don't over do it and don't make drastic changes. You don't need us any more". And I was discharged.

It took a long time to repair the damage from missed diagnosis and such poor treatment, but very gradually things started to improve.

Knowing what I now know, I think I could have increased the speed of my recovery by supplementing with vitamins and minerals. What I have learned from this site is that many of my symptoms were explained by deficiencies. Not surprising, given the level of malnutrition I suffered, despite stuffing my face day and night like you did. Laladrew has given excellent advice on that but don't expect them to take it seriously even if they will test. They are even more ignorant about the correlation between deficiencies and thyroid illness and have no idea about the correct treatment.

I hope my story gives you something to go on and encourages you that you can get well - you can do it but you are the one that needs to be in control and you can use them for your tests and prescriptions.

All the very best and with warm regards - please keep posting.

[Tibs in reply to editfmrt]

Thank you editfmrt, although I’m sorry you’ve had to go through all this too, I’m also really pleased I’m not the only one that’s been in this position, if that makes sense, especially that you didn’t have the ‘classic textbook’ symptoms like me.

I can’t imagine what it would be like going through this without the internet, I’ve got myself a couple of textbooks on it, but I can’t ask a book questions, lol. In a previous life I used to be clever, so I get frustrated that I can’t get to grips with this very quickly. But then, the endos don’t seem to entirely understand thyroids and I’ve only been researching it for 2 months so maybe I should give myself a break!

That’s a really good idea re the spreadsheets, thank you. I have spreadsheets for everything normally so I will definitely do that.

I’m glad that I felt something was wrong and reduced my own medication a couple of weeks before they told me I’d gone hypo, I’d have gone a lot more hypo if I hadn’t. Hopefully that means I can spot the signs of going too hyper/hypo in future and do what you did and adjust any meds accordingly.

Can beta blockers cause hypo as well then? I was told to stay away from iodine, then the pharmacy switched my beta blocker brand to a different one which contained iodine, so I stopped taking them, but I took one last week to see if it boosted my thyroid, and that was the week my levels improved and I was wondering what sort of effect they might have on my levels overall.

I have never heard of block and replace until you and laladrew mentioned it. I think that’s a good idea, I questioned whether I should still be on carbimazole once my thyroid had returned to a ‘normal’ level and was told I still needed it for another 6-12 months but in hindsight, I think I needed to come off it or maybe try adding thyroxine as well.

I asked why I’d gone underactive, GP said she didn’t know, she had discussed it with the endo and apparently it’s very rare for someone’s levels to drop so much in a few weeks, they’d expect to see that happen over the course of several months. They weren’t sure what to do, but have said I can try thyroxine if I want to, it’s up to me. I’ve opted to remain off medication for another week to see what happens. I will definitely ask those questions, but this is why I have lost faith in them now, too many ‘I don’t knows’.

I really don’t like the idea of RAI or surgery, but accept it may need to be done one day. In my own ideal little world, I have it in my head that once my levels are under control, I will go into remission, then I can use alternative therapies to manage my health and either stop it coming back, or at least make the attacks less frequent. I asked my GP if there was anything I could do to improve my health and she said no. I since found that things like yoga, meditation and acupuncture really helped some people and feel that she could perhaps have mentioned stress reduction techniques at the very least.

That made me really laugh about sitting on your hands, I had to do that at the endo too because I was scared I might thump him!!! Lol. It’s disgusting what you’ve had to go through, at least the professor sounds like he had half a brain!

I think that’s going to be the key thing, re vitamins and minerals. I have read that so many times, but it looks so complicated, ie if you take copper then you have to take something else with it to balance it out, that I keep trying to take it in but then give up. I will definitely insist on a full vitamin/mineral test next time, then concentrate on sorting out any deficiencies. I suspect that will be a big part of the problem because despite stuffing my face all the time, I don’t eat a proper balanced diet. And now I hardly eat at all, I’ve just eaten for the first time today, at 6.30pm, usually I’d have eaten 4-5 meals by now but I’m just not hungry anymore and that can’t be healthy either!

Thank you for going through everything so thoroughly, that really has helped and it’s encouraging that people do get through this. I don’t normally post on forums but think this is going to have to be my lifeline through this, thank you.

[Hidden]

Tibs, edit said what I couldn't say. I sometimes think I've blocked out the sorry journey I had, it's too much to relive it. It's true though what she says, this is now down to you to decide on the way forward, disgraceful though that is.

When I found this site just over a year ago, I'd been hypo (post thyroidectomy) for over six years. I'd been so ill they diagnosed fibromyalgia and the usual anxiety label. I was on such a cocktail of drugs, all just to mop of the symptoms of their shocking unwillingness to medicate my thyroid properly. Like edit, I listened to the endo and did what I was told until finally I knew I would surely die if I continued like this. I am petitioning the Scottish Parlilament about the way we are treated. Vital tests are not done, like adrenal fatigue and vitamin deficiencies and the over reliance on levothyroxine and TSh tests is keeping us ill. After years of doing badly on levothyroxine I was suffering badly from adrenal fatigue and low cortisol. You can hopefully avoid all that by doing things differently. Lots of us have had to pay privately for tests, like Vit D and adrenal stress but if you arm yourself with as much knowledge as you can, present it to your doctor and try to get them to work with you. If your GP is unwilling to listen, move to a new one. We have to become pro-active and learn not to trust what they say. It's a crazy state of affairs but the treatment of this illness remains so patchy and is some ways, is worse than it was in the old days.

[Tibs in reply to Hidden]

I've been trying to keep a sort of journal, so I can hopefully maybe help someone else one day, but it is too hard to write in it some days. Probably the way to go is to block it out like you, it's too much to try and remember anyway, I think you just survive on autopilot sometimes.

Are some tests not available on the NHS then, or did the doctor just to refuse to do them? I'm in England, but assumed you had the same system in Scotland? That is absolutely disgusting if you're having to do much of the work yourself!

When I was first diagnosed I was seriously happy that it wasn't just mental, that i hadn't gone mad (I did think it was something that was easily cured at the time though). But now I feel like that would have been an easier disease to treat and probably taken more seriously by doctors as well!

[Hidden]

Beta Blockers will affect how much levothyroxine is absorbed too Tibs. The docs and endos don't seem to care of tell us but you must take them a few hours away from thyroxine. x

[Hidden]

Most of the tests you need should technically be available to you on the NHS, it's just that some GPs or endos don't place enough importance on them. Many on here have asked for Vt D or B12 tests and been denied, only to find on payiing privately that they were very deficient. It's something to bare in mind. My own GP is pretty good at doing tests I request as I've shown her that, by taking my health into my own hands I have recovered and now actually cost the NHS very little. When I was doing things their way I was costing a damn site more on diganostics and meds that kept me ill.

[JemBron]

Thank you for posting your story.

Another sad story of somebody hoping for help from the medical profession when they are so vulnerable and not, in my opinion, being given the regular and proper support. It is sad that you have had to go through this.

The support I can offer is as follows....

Have you checked your adrenal status? With the amount of stress and thyroid problems you probably need help in this area.

These sites (American) are geared to Graves as well as thyroid disorders in general. Both give help re alternative (herbal) treatments which might be of interest to you.

naturalendocrinesolutions.com (Dr Eric was diagnosed Graves and decided to research/treat himself with a natural apporach).

elaine-moore.com (A (Graves) clinician who has a good website and answers questions very promptly.

women-to-women.com (A helpful site re adrenals problems).

GreenLife is a Chinese herbal combination that you might want to look at. Also useful site concerning goitres (inflammed/enlarged goitres). Yes, you are correct, soya not good for goitre-related problems. I think there is some references still on this site, especially in connection with the high incidence of Oriental women with goitres and high soya diets.

Dr Peatfield has been very helpful to me...especially addressing the adrenal problems. You might like to look at Nutri's Adrenal support AD206. (Some fillers I'm afraid but not the bovine adrenal support).

ccjm.org/content/77/11/803.... - this gives explanations of blood test results in relation to TSH values and how to interpret them.

You must insist on having copies of all the tests you do (and lab ranges) so you can monitor your progress yourself. Keep asking for any/and all tests...if you ask for specific tests then the Endo will at least know you are taking control of your well being. Have you had antibody tests - is this the Graves diagnosis?

Always take somebody with you when you visit the doctors/specialists. You need to be strong when you are at your most vulnerable and having somebody with you does help.

I hope you are able to put together a good plan that will help you get better as quickly as possible.

All the best and lots of hugs.

xCarole

[Tibs in reply to JemBron]

Thanks so much Carole, this is exactly the sort of info I was after. I've had a good look through those websites and there's a lot of interesting stuff on there, thanks. I'd never heard of adrenal glands before you guys mentioned them either, I've had pain in my kidneys for about 14 years which gets worse when I'm stressed, I had kidney problems when I was younger and put it down to that, I wonder now if its the adrenal causing me pain..! I've mentioned my kidney pain to them before and they haven't said anything but I'll make sure I get that checked out now, thank you.

Thank you to all for responding, I feel a lot more prepared now and have learnt so much from you already! :0)