Hi to everyone. I was diagnosed with overactive thyroid 1st Oct. I am still waiting for endocrinologist appointment. Carbimazole 20mg has

[tiredlady]

wiped out my whiteblood cell count, so no medication. I feel so weak can hardly make it up and down stairs. A year ago I was property developing my little house, now I cant get the lid off a tin of tuna let alone paint. What does anyone think of alternative medicines (holistic and diet) ? your opinions much valued.

[Hidden]

Hi

I was very very seriously ill with over active thyroid. Whilst alternative medicine can alleviate some symptoms you can't treat hyper with natural stuff. Have you had your antibodies tested, what is your diagnosis? Graves, Hashimotos disease? Can they not put you on PTU instead of CBZ?

You need to see an Endo pronto .... and I'd strongly suggest learning as much as you can about your condition. Some hyper can be transient, or can burn out to hypO (like with Hashis) but Graves disease usually requires definitive treatment, remission is very rare but the treatment options are pretty drastic and you'd want to be fully informed and aware of the implications - doctors are a bit too quick to remove or knock out the thyroid in my opinion.

Thyroid is a complicated illness, and you are going to need to take control of your care and fully understand what you are being told. Joining a forum like this is a great place to start.

best wishes

Rebecca

[tiredlady in reply to Hidden]

Hi Rebecca, thank goodness someone out there is listening to me moan. I really was a happy lady and wonder where she has gone. I am at a complete loss. All that has happened is after a year of complaining of all the symptoms of which I now have the lot. Family think I have Parkinsons as I shake so much, no history of such though. The doctor just took blood tests, said I had an overactive reading of 55 (whatever that means and put me on 20mg Carbimazole, said they would refer me for hospital appointment. 2 weeks on tablets and developed sore throat. Blood test results today reveal my blood count has not returned to normal so cannot start medicine again. Hospital have no available endocrinologists with vacant appointment for me. Have asked if I can go privately for consultation and have spent the morning phoning private hospitals to find they also are booked or have no endocrinologists on there staff. As I am 61 now , the little I have found out so far suggests to me that if I take carbimazole, it may relieve all the sypmtoms to thyroid but further down the line, I may develop other illnesses related to auto immune deficiency, which I would rather avoid if possible by alternative medicine (homeopathy/vitamin/mineral and diet). I presume I first have to see the endocrinologist to establish how severe my case is? You seem to be so well informed and I am just at the start, feeling rubbish makes it hard to fight my corner, but I will.

Any suggest reading or sites I may not have come across much appreciated.

[Joy333 in reply to tiredlady]

Hi, sorry your feeling so awful. I can relate to your family mistaking the shakes to Parkinson's. When I was first diagnosed the shaking was so debilitating and my voice was a quiver. Betablockers really help with these symptoms and slow your heart rate until thyroid meds kick in. Like you I couldn't get an endo appointment for some time but my Gp and endo liaised until the appointment came through. I hope you get the care you need soon, take care x

[greenginger in reply to Joy333]

Hi I had the shakes too and I thought I had something similar. Went with carbimazole though.

[Hennerton]

I am sorry you are being treated so badly. When I was diagnosed in 2005, I was rushed straight to an endo and then my GP and I monitored treatment together. What is going on now? I know that every move you make is an effort but do try to contact your GP practice and tell them how ill you are feeling. Do you have copies of your first blood test, showing how hyper you were and any later ones too? Do hope you get the help you need quickly. Sorry, I know nothing about natural remedies but maybe someone will post here. xx

[tiredlady in reply to Hennerton]

Hi Hennerton, thanks for taking the time. Nothing is happening. It would appear there is a shortage of endocrinologists in Derbyshire, my GP has chased up hospital twice and still no appointment, I am now looking privately to find one and see how much I may have to pay. NHS going down the pan I guess.

[Hennerton in reply to tiredlady]

I am amazed that they are treating this so lightly. As others have said it is a serious disease. Maybe Rebecca's suggestion of A&E is very sensible, given how you feel. At least they will have to do something now and could try the alternative medication. I was never offered that. Had TT eventually. To put your result into perspective if the figure of 55 is your T4, mine was just short of 70. I was given beta blockers to slow my heart and Carbimazole. You are definitely high end, so do not let then fob you off. Hope you get immediate help. xx

[Hidden in reply to tiredlady]

Hi you can see someone outside of Derbyshire on NHS (through choices system, when you call the appointment centre ask where you can get an appointment within a month near you etc)- I did that as I have friends in London.

[Hidden]

Hey

Sorry meant to add that supplementing with selenium and going gluten free can help with some autoimmune thyroid diseases and tamp down antibodies, but not sure if you are autoimmune. Elaine Moore and Mary Shomon have written about this if you want to reference it.

Rebecca

[Hidden]

Oh bless you

My suggestion if you get a copy of all the blood results your GP did and post them on here along with the reference ranges. I'm guessing the 55 is your Free T4 level (the inactive thryoid hormone) as if you had a FT3 of 55 you'd be into thyroid storm. Your GP could put you on betablockers to protect your heart and slow down the conversion of T4 to T3. Also why have they not tried you on PTU (the other drug apart from Carbimazole?). The shaking and racing heart etc are dangerous and need to be treated or at least controlled.

Endocrinologists are a funny breed - some are good and some are the bane of our existence. I learned a lot from the US National Graves Disease and Thyroid Foundation gdatf.org/about/about-grave... and Elaine Moore elaine-moore.com/

But without an antibody screen you don't know what's wrong with you - your GP could do that for you without an endo.

Graves disease is extremely serious, if you get worried, go to A&E.

Rebecca

[Granitecitygirl]

Until you can take medication and sort out the inside, removing all outside stimuli is a must. So that really means de-stressing, eating cleanly, rest/nap often. And never be afraid to phone for an ambulance should you feel like your symptoms are getting worse! Its a sure fire way of being seen to quickly. I had to wait about 3 months from getting my hyper diagnosis before getting carbimazole as up here only an Endo can prescribe it - hopefully you will be able to go on the alternative to carbimazole, I can't remember what it was called.

[Hidden]

The alternative to Carbimazole is PTU.

x

[marram]

In the meantime you could eat all the brassica you can lay your hands on as it is a thyroid suppressant! It won't cure you but it might calm it down a little bit.

If you are diagnosed with Graves' they can try Propylthiouracil instead of carbimazole, I was on it for some time. If it is Hashi's in its hyper stage, it will very likely resolve itself and then you may end up hypo instead, which would mean taking some sort of thyroid hormones.

If you are shaking very much it can be really distressing, I also would advise you to keep your eyes on your temperature, and if while you are waiting to be seen, it goes up and stays up, go to the the nearest A & E and tell them you are hyper and have a high temperature, and they can help you, because the main danger with untreated hyper is thyroid storm which is very unpleasant. The first sign would be a raised temperature and very rapid heartbeat.

This website is very informative:

elaine-moore.com/

Marie XX

[tiredlady]

Hi, to all you wonderful people who replied to me. Thankyou, I have today received an appointment with endocrinologist for tues 5th Nov. At last! Read myself stupid and confused by all the variations possible . What questions and tests should I be asking for at my appointment?

[KKAJC]

Hi tiredlady There is light at the end of the tunnel. The Consultant wanted to know what symptoms I had experienced and family medical history. I was diagnosed with Graves Disease in May this year. Symptoms included tremors of my hands, uncontrollable body temperature, heart palpitations, incredible tiredness inability to think or multi task -thought I was going mad. I also had a case of thrush which didn't respond to treatment. A blood test by GP indicated abnormal antibodies, T3, T4 and TSH levels. Once referred to endocrinologist Graves Disease diagnosed and a block and replace therapy was begun. Now it's November just had a blood test and Thyroid being suppressed. Feeling almost back to normal, tremors stopped, heart normal, BP normal able to think again!! I have regular blood tests, block and replace is not an exact science!

I eat a very healthy diet and try not to have too many carbohydrates plus take a 30 min walk each day, I have made a conscious effort to lose weight and take more exercise.

I asked lots of questions and have kept asking because it is quite complicated to get your head around all of the variables. I needed to understand why we treated symptoms rather than cause, what T3, T4 and TSH were. What would happen if I did nothing- not an option! After blocking what was the percentage of normal recovery? How I could best help myself. My advice establish a good relationship with GP and endocrine specialist - I have an endocrine nurse who takes bloods and says no question is stupid so if I need clarity I keep asking. Wishing you lots of luck on 5th. P.S. I took a notebook to jot down information.

[tiredlady in reply to KKAJC]

thanks for that, your story sounds very similar to mine. How long before I can stand warm weather? Its 17 degrees in my lounge and I am hot.! Supposed to be attending son's wedding in Greece (32 degrees) next year. I really can't bear the thought of it. Is there no way this can be treated y alternative methods, diet,supplements and homeopathy?

[greenginger in reply to tiredlady]

Hi I am in remission at the moment from Graves and this is the first time in 4 years that I feel any cold at all. It is great. There is no way to treat this with alternative thingys. Many on here will suggest things but the only way is medication either carbimazole of PTU, surgery or radio iodine treatment RAI. If you do not use meds then you will most likely get very very ill and worse. It is very common for people diagnosed with hyper/Graves to ask these questions as a small amount of self denial takes place. You will probably find it hard to take things on board and your mind may be very full and fuzzy. You may suffer with anger or rage or get very upset. You may shake, sweat and have the runs. You may itch, have sore throats, joint pain and other things.

Do keep all your blood test results and get them done regularly. Write down questions for your endo and take a friend or partner with you and do not be surprised if they are rude or dismissive or do not take you seriously as this is common.

Things will improve once your meds are sorted. Do avoid stress, eat well and rest when you can. All the best

[tiredlady in reply to greenginger]

Thanks for the info. Endo today prescribed propylthiouracil 50mg twice a day. Can't wait to start picking up my health. Wish you all the best too.

[greenginger in reply to tiredlady]

I am glad you got some meds sorted and can start your recovery.

[FOX696]

Hi, ive recently been diagnosed with over active thyroid....im still waiting to go to the hospital for my first visit, I have terrible shakes, im tired all the time.. feels like my brains being nudged from the inside...scares the hell out of me, heart rate is fast and find my self listening to it, ive lost weight... but dont feel likely to say hooray!, ive felt so low and worthles, i used to be a happy go lucky woman, now! id rather be on my own, please tell me im not mad!...ty

[tiredlady in reply to FOX696]

Hi Fox696

Sorry for late reply. Not been too good last 2 months.

I trust by now you may have had your first visit and are on medication. I really believe you feel so bad with the changes in both your mind and body.

Just believe in yourself and do not be fobbed off with the only solution being Rai. It's not.

Best wishes to you