Hyper and really fed up

[elayneg]

Hi

I have been Hyper for nearly two years and it doesn't seem to be settling down. I have a wonderful Endo who will only treat the thyroid my GP didn't ask her to check anything else.

I see her for 5 minutes every 4 months and have completely lost faith.

I had to give up work because I was feeling so ill, high blood pressure sickness aches and pains. The Endo wants me to have the operation to remove my thyroid but I am really wary of this.

The original Endo I seen was brilliant he said my TPO antibodies were positive and that I had a bilateral thyroid nodule, that was 3 years ago.

I have lost all my confidence not only in doctors but also myself. I need to go back to work but at 59 I am struggling to get a job. I don't get any benefits and am struggling to get by, I live with someone.

Anybody got any ideas, the Endo will not even tell me my blood results and believe me we have tried even the GP is not getting them

Sorry to drag on I am just at the end of my tether

Thanks

[PinkNinja]

You are entitled to your blood test results although they may charge a nominal "admin" fee.

As your Endo is being less than helpful and even your GP isn't getting your results, can you ask for a referral to a different Endo, maybe at a different hospital? Your GP should be getting your thyroid test results as s/he is ultimately responsible for your health. If this is not happening, your GP needs to get onto that.

Your GP can also order a thyroid function test herself, in which case she would get the results.

Are you on any medication for your thyroid? If so, what and how much?

Hopefully someone will be along with some more information about hyperthyroidism treatment. I'm afraid it is not something I have experience of and know only a limited amount.

I hope I have at least been able to help regarding your blood tests. Sorry I couldn't be more help.

Carolyn x

[Moggie]

This is disgraceful behaviour by the endo - don't loose faith, please have a look at this link and request your blood/test result officially.

ico.org.uk/for_the_public/p...

It gives you a step by step guide as to how to request them and a letter that just needs the blanks filling in. The hosp CANNOT refuse this request by law. Stay positive, send the letter and once you have your results you will have a clearer picture as to what is going on.

Good luck

Moggie x

[elayneg]

Thank you,

It is just such an uphill battle although not as bad as some. I am on 20mg Carbimazole she took me of PTU because she doesn't approve of them in fact she told my partner I would need a liver transplant if I stayed on them although I was doing so well on them.

She has just upped my medication again from 10 to 20mg and we asked her three times what the blood tests were.

My GP has said I have to have my blood tests done at the surgery so they know what they are dealing with. I had to go for high blood pressure and because the Endo said my blood pressure had nothing to do with my thyroid and my GP should treat. My GP was loathe to put me on medication for anything because she did not have my blood results. The surgery has always given me a print out of my blood tests to pass on to the Endo.

I am usually very positive but the constant pain in my throat and the exhaustion is finally getting me down.

I feel guilty moaning because so many people on this site are worse than me.

I do want to thank you though for your answers. This site has been a life saver for me so thank you all

Elayne

[Glynisrose]

You do not 'have' to have any tests that have not been explained to you. If I were you I would write to the PCT to complain about this GP and endo!! You must not compare yourself to others, there are people who are better and worse but the most important thing is YOU!!

[elayneg in reply to Glynisrose]

Thanks I just feel guilty to be moaning. To be quite honest at the moment I feel guilty about everything. The tiredness the feeling sick the sore throats and all the other aches and pains and the fact that although I know my own body no one listens to me. Same old story isn't it.

Thank you for your reply I do feel better Just to have got it out of my system

[Apolloartemis]

I have Graves Disease and am also struggling to get my hyper symptoms under control. I was on 10mg of Carbimazole, now on 15. My FT4 has increased again but they can't up my dose of Carb as my neutrophil has dropped well below the range and if I were to get an infection I wouldn't be able to fight it. Do you have Graves Disease? I have been advised bu other people with Graves not to have surgery...the thyroid is not the problem, the Graves antibodies are the problem. So far no doctor has suggested surgery, I am just sticking with the meds and hoping for an improvement in time. Have you lost weight? Long term that is one of my main concerns as I haven't much more weight to lose. I hope you feel better soon and send my best wishes.

[Nathalie70 in reply to Apolloartemis]

Hello Apolloartemis,

I have Graves too but Carbi is very efficient at a very low dose. I'm sorry to hear you're struggling.

I'm surprised by your sentence "I have been advised by other peope with Graves not to have surgery". I'm very interested in this. Do you have any reference or links explaining why surgery is not an option for Gravesters? Thanks a lot and I hope you feel better soon. Best wishes. Nathalie.

[elayneg]

Hi Apolloartemis

Well one Endo said I had Hashimotos another said graves so now I haven't got a clue.

I wish I could lose weight I just keep piling it on I have put on nearly 2 stone and that is not helping me. Seemingly that is very common and not important. Of course if the endo spent a day in my shoes it might make a bit of difference.

I spend 5 minutes every 4 months with someone who just doesn't listen.

Ah well that is a common enough story.

I am so grateful for this site because you never feel alone and everyone is so helpful.

Thank you for your reply

[greenginger]

Hi

I have Graves and have been on carb for 2 years.

You have high blood pressure due to your thyroid as do I. They will probably not treat it whilst on carb though. They ignore mine. You can sign a form at your endos so that the GP and yourself can receive your results. Or you can request them in writing.

I have put weight on and this is common once on meds. If you are still losing then this suggests that you are still hyper as does the sadness and guilt and other problems.

If you have a nodule then this may be causing the hyper and will probably need surgery. You need to confirm if you have Graves, Hashis or a nodule.

Take a friend or partner to the endos next time and a list of questions. Refuse to leave before they answer them all. Throw a strop and you will get better service, sad to say.

All the best.

[elayneg in reply to greenginger]

Hi

I never lost weight, all my life I was between 7st 8 and 8 stone even when I was pregnant. I started to put on weight and that was when I was diagnosed Hyper. I asked my Endo if I had Graves or Hashis she told me it didn't matter which I had.

I never go to her alone and have asked all sorts of questions. I queried the constant sore throat and she said it had nothing to do with thyroid and yet my GP referred me back to her.

I constantly feel like a tennis ball being batted back and forwards. My GP has told me to ask if I can go back under my GP and they will keep an eye on my bloods etc and phone her if there is a problem.

The GP isn't happy with the Endo but they are getting fed up writing to her and getting no response. It takes her 3 months to update the GP after I have seen her.

I have thrown several strops and she has told me if I am not prepared to have RAI or operation I will never be well. My problem with her is she contradicts books I have read, didn't know who Dr Toft was and told me not to read books they were rubbish.

I think it is time to change Endos or stick with my Gp who is not that bad and will listen.

Thanks for your reply, hope you are feeling ok and doing well

[greenginger]

Hi

Firstly complain to your hospital about your endo's attitude and lazy reporting (3 months is not good enough). If you feel she is not interested then get your friendly GP to refer you elsewhere. It does matter if you have Graves or Hashis and she should be able to tell you with an antibodies test. Plus a scan of your neck would help to determine if you have nodules and a simple exam should confirm a goitre.

If you have a constant sore throat and the endo denies the thyroid being the cause then ask your GP to send you to a throat specialist to clarify.

I have experienced this bouncing between GPs and endos. Both of mine are rubbish and it has been 8 months since my last visit probably because I told her she new nothing!!

Ah well I hope you feel better soon. All the best.

[elayneg in reply to greenginger]

Hi

I have got a bilateral thyroid nodule that was discovered in 2010 I don't know if they are supposed to keep an eye on this but she hasn't. I am not even sure what I am supposed to expect. I walk in she asks how I feel I tell her and she says none of that is to do with your thyroid she then tells me what amount of carb to take and thats it.

Five minutes maximum.

I think I am going to take a leaf out of your book and give her hell, well I am going to try. I hate upsetting anyone but since she doesn't seem to care about my feelings and me feeling well then I don't owe her any consideration. Maybe what everybody needs is someone like you to go with them. The trouble is I have done so much research and do know what I am talking about she just says it is rubbish.

So much for doctors working with you and treating you with dignity this woman doesn't know the meaning of working with the patient.

Thank you I have now got it in me to give her a rough time and if she doesn't like it she can go and jump.

Thank you again I feel so much better now. Hope you do too

[greenginger in reply to elayneg]

Yes I am the same, I hate upsetting people and I am too polite but needs must. I get the same from my endo. She asks how I am and then tells me it has nothing to do with my thyroid and thats it.

That is why I told her she was useless on my last visit.

I hope I have helped. Go get em tiger.