Really don't know what to think - Fibromyalgia Acti...

Fibromyalgia Action UK

59,454 members β€’ 66,500 posts

Really don't know what to think

Jan101 profile image
Jan101
β€’48 Replies

Three weeks ago I woke up at 6.30 with pain in the left hand side of my stomach and running to the toilet.

I phoned my gp and she said I don't think it's your diverticulitis, I think you have a stomach virus let it run for about 3 day and it should be ok then.

So by the weekend I was really bad and was taken into hospital 3 times. They said the first 2 times that they thought it was a stomach virus, then on the 3rd time they said it was my diverticulitis and discharged with some steroids.

On the following Monday I phoned the IBS nurse and she asked me to come and see her on the Tuesday. She took blood and stool test and said to call her on the Thursday and she would be able to prescribe some medication at that point.

I called on the Thursday and another IBS nurse spoke to her and she said to tell me that I would have to call next week when my specialist returned.

So by the Monday I was really very poorly and upset because I had been left with no medication to help me for a further week. I spoke to the nurse that said that she would prescribe something for me and she was putting words into my mouth. At that point I got very upset and stood up to her. She said that she would speak to my specialist in the afternoon and call me back.

She called me back and my specialist asked how I was and she said that I was a little upset and his reply to her was that is not like Jan.

The point of all this is he said that he thinks I have a over active thyroid and for the nurse to call my GP so she call the GPS and left a message for the GP to call back and she would send a urgent letter also. The next day came and still no call from my GP to which I thought was very unusual, so I call the IBS nurse as she told me to do if I had not heard from the GP.

I spoke to another IBS nurse and she said I will get her to give you a call and for me to call my GP so I did and they had nothing on the screen to say the IBS had called and no letter. I could not believe this. Also the IBS nurse never called back.

My question to everyone is do I need to worry as I know nothing about a over active thyroid? Also when they told me that they THINK I have a over active thyroid. Surely they have to be sure as I don't want to take more medication if I don't have it.

How can I be sure that the diagnosis is correct? Please if anyone can help me I would be really grateful. Also if anyone has a over active thyroid could you please tell me the symptoms.

I have so many other things going on that I need to be sure.

I am really sorry for the long post but I thought it is better that I explained all of it so you could see the full picture.

I truly hope that you are all feeling as well as you can be. Take good care of yourselfs. Jan πŸ€—πŸ€—πŸ€—πŸŒΉπŸŒ·πŸŒΊπŸŒΈxxxxx

Written by
Jan101 profile image
Jan101
To view profiles and participate in discussions please or .
Read more about...
48 Replies
β€’

Morning Jan101 . I don't know anything about thyroid, so I just looked it up, and it does say your motions can get very severe and watery. Also losing weight, hair skin, have you noticed any of these other than your Bowel. I have been tested myself, with blood tests, so your blood will show if you do have overactive thyroid. As an IBS-D sufferer, I can feel for you, it can get very distressing. . I hope the results come back soon, and you can get treated. In the mean time, can you take some Colpamin to relieve your bowel spasms and running to the toilet. I take them, they help a little. So sorry you are going through all this Hun. Take care. Lots of hugs and luv. πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—β€οΈβ€οΈβ€οΈβ€οΈβ€οΈβ€οΈ Xx

Jan101 profile image
Jan101 in reply to

Hi love yes I have lost about 2 stones waking up in the morning soaking wet my hair and PJ's are soaking right through. Running to the toilet has been Horrendous with stomach cramps and pain. All this is getting me really down after what I went through all last year nearly in bed for a hole year with all the things that happened to me. I really thought that this year might be better for me. 😘😘😘 Jan

in reply to Jan101

Let's hope it all gets sorted very quickly this time, and you can start having some sort of life, πŸ™. And get you on the right medication. You have had it hard Hun . Lots of πŸ€—πŸ€—πŸ€—πŸ€— and ❀️❀️❀️❀️. Take it easy xxxx

Jan101 profile image
Jan101 in reply to

Thank you love. I will let you know how I get on. Keep smiling πŸ˜„πŸ˜„πŸ˜„ xxxxxxx

in reply to Jan101

πŸ˜‰πŸ˜‰. Thanks Hun xx

Jan101 profile image
Jan101 in reply to

Morning love spoke to gp and she is running all her own tests. She is also testing for a few other things. I think that she is being quite thorough. So fingers crossed will see her when results come back in just over a week. Hope all is not to bad with you. Take care love. πŸ€—πŸ€—πŸ€—πŸŒΊπŸŒΈπŸŒ·πŸŒΉπŸ’πŸ’πŸ’ Jan

in reply to Jan101

πŸ™ πŸ€—πŸ€—πŸ€—πŸ˜˜πŸ˜˜πŸ˜˜πŸ€— xx

Jan101 profile image
Jan101 in reply to

Thank you love. πŸ€—πŸ€—πŸ€—πŸŒΈπŸŒΉπŸŒ·πŸŒΊπŸ’πŸ’πŸ’xxxxx

Jan101 profile image
Jan101 in reply to

Morning love just a update. Thyroid tests came back clear. Thank goodness. So sorry to hear that you are having so much pain. I truly wish that you can get it sorted soon. Take good care of yourself my friend. πŸ€—πŸ€—πŸ€—πŸŒΉπŸŒ·πŸŒΊπŸŒΈπŸ’πŸ’πŸ’ Jan xxx

avocadopeardrops profile image
avocadopeardrops in reply to Jan101

Hi Jan This happened to me. I would suggest getting a print out of all your blood results and then posting them on a thyroid forum for comments.

It certainly does sound as if you have an overactive thyroid and something should be done about it.

Keep strong. Are u taking any meds at all?

Jan101 profile image
Jan101 in reply to avocadopeardrops

Hi avocadopeardrops

I am hoping to see my gp this week as she ran her own tests. I am on medication but not for a over active thyroid. One thing that keeps happening is I wake up every morning soaking wet my hair and nightclothes are soaked through and my pillow. Now my legs are really hurting and I don't know why I have the pain in my legs. I also don't know of a over active thyroid forum. Thank you so much for your reply. What do you take and what is your symptoms ? I truly hope that you are feeling as well as you can be. Take good care of yourself. Jan πŸ€—πŸ€—πŸŒ·πŸŒΊπŸŒΈπŸŒΉ

Jan101 profile image
Jan101 in reply to avocadopeardrops

Morning just a update got my results not got thyroid problem all is clear. Thank goodness. I truly hope that you are feeling as well as you can be. Take good care of yourself. πŸ€—πŸ€—πŸ€—πŸŒΉπŸŒ·πŸŒΊπŸŒΈ Jan xxx

in reply to Jan101

Excellent Hun, I am trying to catch up on all the posts sooo many , trolling through. πŸ˜˜πŸ˜˜πŸ€—πŸ€— xx

Ramjets profile image
Ramjets

Hi Jan, I'm sorry you have been so poorly lately but to be honest it sounds to me like you've been given a bit of a runaround either by the IBS nurse or GP over this "urgent letter"/phone call. From reading your post, it seems this letter is the key and will hopefully have the information you need and either the nurse hasn't sent it or GP hasn't looked properly for it. I assume when the nurse took blood tests, they tested for an over-active thyroid which is how it is normally diagnosed. It is possible the nurse may have just said "thinks you have an overactive thyroid" over the phone because the official letter has not yet been sent or you may require further tests. However you are only going to continue to worry and you need to know for sure. Therefore if I was you I would make an appointment with your GP as soon as possible to discuss the matter and if they still haven't received a letter or call from the nurse, ask them to call them there and then whilst you are present (make sure you have the number handy so they have no excuses). Good luck lovely and take care xxx

Jan101 profile image
Jan101 in reply to Ramjets

Hi Ramjets

Thank you so much for your reply. You have a very good point someone is not doing what they say.

I am getting a phone call from my GP today and she is normally very upfront and she would tell me if they have sent a letter or not.

I don't know but maybe she could also do the tests to see for sure if I do or not have a over active thyroid. ( I really don't know.) I just don't want to take anymore medication if this is not the right diagnosis.

How can they say they THINK I have never ever been told that before.

Do I have to worry about a over active thyroid only I am a cancer survivor and I don't want to worry that this could come back. I am probably over reacting but I have been thought so much the last couple off years. Feeling very upset this morning so sorry for long reply.

I truly hope that you are feeling as well as you can be. Take good care of yourself. πŸ€—πŸ€—πŸŒ·πŸŒΊπŸŒΈπŸŒΉ Jan xxx

Ramjets profile image
Ramjets in reply to Jan101

I'm glad your GP is calling you so let's hope they don't let you down. If they confirm they still haven't received anything ask if could she call the nurse as you have done so a few times but are getting no joy. I would explain that it is stressing you out not knowing what is going on. I am no medical expert but I'm pretty sure there are blood tests that can be done to determine whether you have an overactive thyroid and it is not done by guesswork. I can't say if your GP has the ability to do this particular test but ask her when she calls. I wouldn't like to say whether I think you have an overactive thyroid hun as I don't have the expertise to confirm this. However I would push your doctor for some answers or action today as it is obvious this uncertainty is making you anxious which is no good for you. xxx

Jan101 profile image
Jan101 in reply to Ramjets

Hi Ramjets thank you for the advice I will push today for the right diagnosis. You are right it does worry me. But I won't let it make me ill as I know worrying is not good for us. Thank you so much. Take good care of yourself. Jan xxx

Jan101 profile image
Jan101 in reply to Ramjets

Hi Ramjets spoke to gp and had blood taken she is running all her own tests and also looking at other things as well. So should have results back in just over a week fingers crossed. I truly hope that you are feeling as well as you can be. Take good care of yourself. Jan xxx

Ramjets profile image
Ramjets in reply to Jan101

Morning Jan, well that's good at least things are getting done and hopefully your results don't take too long to come back and are clear. Let us know how you get on. Hope you aren't feeling too bad, take care lovely xxx

Jan101 profile image
Jan101 in reply to Ramjets

Than you Ramjets yes fingers crossed. I will let you know the outcome. Thank you so much for your reply s. Take good care of yourself. πŸ€—πŸ€—πŸ€—πŸŒΈπŸŒΉπŸŒ·πŸŒΊ xxxx

Jan101 profile image
Jan101 in reply to Jan101

Morning just a update not got thyroid it came back clear. Thank heavens. I truly hope that you are feeling as well as you can be. Take good care of yourself. Jan πŸ€—πŸ€—πŸ€—πŸŒΉπŸŒ·πŸŒΊπŸŒΈxxx

panda60 profile image
panda60

Communication in the NHS is not what it should be.

PALS are very helpful (they sorted me out recently)

Speak to your GP if you haven't already to see if they can prescribe anything and to let them know what is going on.

Good luck.x

Jan101 profile image
Jan101 in reply to panda60

Thank you. What is the PALS? All being well my GP is calling me today. I truly hope that you are feeling as well as you can be. xxx Jan

panda60 profile image
panda60 in reply to Jan101

PALS is patient liaison at hospitals. Too hot for me today! xx

Jan101 profile image
Jan101 in reply to panda60

Morning just a update not got thyroid tests came back all clear. Thank goodness. I truly hope that you are feeling as well as you can be. Take good care of yourself. Jan πŸ€—πŸ€—πŸ€—πŸŒΈπŸŒΉπŸŒ·πŸŒΊ xxx

Jan101 profile image
Jan101 in reply to panda60

Hi panda60 spoke to gp and she is running all her own tests so hopefully I will have the results in just over a week and I will know what is going on. I truly hope that you are feeling as well as you can be. Take good care of yourself. Jan πŸ€—πŸ€—πŸŒΊπŸŒΈπŸŒΉπŸŒ·xxx

Creativeness1 profile image
Creativeness1

Hi jan101

I don't have an over active thyroid have you managed to look at the sight fmauk.org hopefully it will have some information there.

I can see that you must feel very frustrated I have IBS but have had a lot of problems with my stomach I have been referred to gastroenterology for camera. your symptoms sound similar but that would have to go through GP sorry I cant be of any more help.

Contact your GP ask for emergency appointment.

Good luck my friend

Jan101 profile image
Jan101 in reply to Creativeness1

Morning Creativeness1 thank you so much for your reply. Spoke to gp yesterday she is running all her own tests and also testing for other things. So fingers crossed I should have results back in just over a week.

I truly feel for you having IBS it's not a nice thing to live with. I got the short straw I have ulcerated colitis diverticulitis now this whatever it is.πŸ€”

I will have a look at the link that you sent to me thank you so much for doing that.

I truly hope that you are feeling as well as you can be. Take good care of yourself. πŸ€—πŸ€—πŸ€—πŸŒΊπŸŒΈπŸŒΉπŸŒ· xxx Jan

Jan101 profile image
Jan101 in reply to Creativeness1

Morning just a update thyroid tests came back all clear. Thank goodness. I truly hope that you are feeling as well as you can be. Take good care of yourself. Jan πŸ€—πŸ€—πŸ€—πŸŒΉπŸŒ·πŸŒΊπŸŒΈ xxx

Crusee profile image
Crusee

O Jan101

How awful for you being given the runaround like this .

Its not good when you ate feeling ok but when you are feeling poorly on top its really not acceptable.

Unfortunately,thyroid problems are not something I have encountered,so I dont feel qualified to pass comment there

I just wanted to say I Hope someone takes responsibility soon and gets to see/ speak to you ASAP and gets,you back on the the road to recovery soon.

Its gone on long enough.

Take care

Crusee

XX

Jan101 profile image
Jan101 in reply to Crusee

Hi Crusee thank you so much for your reply. Spoke to gp yesterday and she is running all her own tests and also testing for other things. So fingers crossed I will have results back in just over a week and hopefully find out what it really is.

I truly hope that you are feeling as well as you can be. Take good care of yourself. πŸ€—πŸ€—πŸŒΊπŸŒΈπŸŒΉπŸŒ· xxx Jan

Crusee profile image
Crusee in reply to Jan101

Fingers are crossed for you @jan101 that all goes well.

I had a bit of good news myself yesterday (well I thought it was good-- ish)My kidney function has been very unstable over last 12 mths or so.As low as 14 % on two occassions,18%,19 % but mostly hovering around the 20-21 mark..Well yesterday it was 26 % so it has improved somewhat.I will keep,on taking the tablets -- hey ho.

Take care jan.

Crusee

XX

Jan101 profile image
Jan101 in reply to Crusee

Hi Crusee I feel really pleased for you that your kidney is improving. You must of felt over the moon with your results. πŸ˜„ Saw another gp today very young he was. Done an examination and said to see how it was in a couple of weeks. I told him that all being well I will see my own gp next week if my results are back, so I will see what she thinks. He said yes that's ok.

I am having a better day today thank god not before time. πŸ˜„

You take good care of yourself. Jan πŸ€—πŸ€—πŸ€—πŸŒΊπŸŒΈπŸŒΉπŸŒ· xxx Jan

Crusee profile image
Crusee in reply to Jan101

All this certainly makes you appreciate a good day,when you have one doesn't it Jan101

Crusee

XX

Jan101 profile image
Jan101 in reply to Crusee

Hi Crusee you certainly hit the nail on the head. Take good care of yourself. Jan πŸ€—πŸ€—πŸŒΊπŸŒΈπŸŒΉπŸŒ· xxx

Jan101 profile image
Jan101 in reply to Crusee

Morning just a update thyroid test came back all clear. Thank goodness. I truly hope that you are feeling as well as you can be. Take good care of yourself. Jan πŸ€—πŸ€—πŸ€—πŸŒΉπŸŒ·πŸŒΊπŸŒΈ xxx

rosewine profile image
rosewine

My friend had exactly the same with an over active Thyroid and they can do blood tests to find out if this is the case with you. It is horrible when you are feeling so poorly and they start messing you about. The communications between different sectors of the NHS are terrible. My husband was asked to go in after a phone call for tests for his cancer and they said a letter would follow. Of course it didn't so he had to ring up Monday morning to find out exactly where he had to go and what to do. He then has to have an injection and the hospital are supposed to write a letter to his GP which triggers them getting the drug in so of course that hasn't happened and they are having to sort it out. We could all do without the added stress.x

Jan101 profile image
Jan101 in reply to rosewine

Morning rosewine

I am really sorry to hear what your husband is having to go through. That is absolutely dreadful. In his case you would think that they would really make sure that they did things correctly. I can't believe that is what they have done to him. Absolutely disgusting. Please give him my very best wishes and sending him all the luck in the world.

I spoke to gp yesterday and she is running all her own tests so hopefully I will have the results in about a week fingers crossed. Then I should know what is going on hopefully.

I truly hope that you are feeling as well as you can be. Take good care of yourself. πŸ€—πŸ€—πŸ€—πŸŒΈπŸŒΉπŸŒΊπŸŒ·xxxx Jan

rosewine profile image
rosewine in reply to Jan101

Do let us know when you get your results hope all goes well.x

Jan101 profile image
Jan101 in reply to rosewine

Will do love. You take good care of yourself. πŸ€—πŸ€—πŸ€—πŸŒΊπŸŒΉπŸŒ·xxx Jan

Jan101 profile image
Jan101 in reply to rosewine

Morning just a update as promised. Thyroid tests came back all clear. Thank goodness. I truly wish that you are feeling as well as you can be. Take good care of yourself. Jan πŸ€—πŸ€—πŸ€—πŸŒΉπŸŒ·πŸŒΊπŸŒΈ xxxx

rosewine profile image
rosewine in reply to Jan101

That's marvelous news you didn't want to add anything else to your list.xxxx

Jan101 profile image
Jan101 in reply to rosewine

Thank you rosewine. No I really don't need anything else. I truly hope that you are feeling as well as you can be. Take good care of yourself my friend. πŸ€—πŸ€—πŸŒΉπŸŒ·πŸŒΊπŸŒΈxxx Jan

panda60 profile image
panda60

Sorry you've had to put up with this. Both of you. It's bad enough having to worry about diagnosis and treatment without the added stress of hopeless communication and inefficient staff.

PALS are a godsend. They sorted out my appointment at St Georges in February, but even they were given the wrong information!!! Anyone who has ever visited said hospital will tell you never to go without a letter saying which department, otherwise you can have a walk of up to a mile or more ! Fortunately I got my letter at the last minute and ended up in the right place-not my referral letter though which was eventually found.....

And I won"t even start on the ENT nurse in charge of my pre-op appointment last year - I thought my husband was going to have a heart attack over the stress of it all.

I don't know how some people manage especially the elderly. My 95 yr old dad has just gone into a nursing home after hospital visits as in and outpatients. But he has had my sisters, brother and niece and nephew to sort him out. But so many don't.

Jan101 profile image
Jan101 in reply to panda60

Morning panda60

I agree with you it is really bad and very upsetting when people have to go through this sort off things especially when they are so poorly. I am glad that you had some information when you went to see PALS. They really sound very helpful and it terrible that they found it difficult to get all the information. I hope that your dad is as well as he can be and it's lovely to hear he has a very lovely family around him. But it's true some poor people don't have that support. That sort of thing always upsets me when I hear how some of these poor people get treated. I would love to be a fly on the wall and be able to report these people. They absolutely disgust me.

Spoke to gp yesterday and she is running all her own tests and she is testing also for other things as well. So fingers crossed I will have my results in about a week. Then hopefully I will find out what is really wrong with me.

I truly hope that you are feeling as well as you can be. Take good care of yourself. πŸ€—πŸ€—πŸ€—πŸŒΉπŸŒ·πŸŒΊπŸŒΈ xxxJan

Jan101 profile image
Jan101 in reply to panda60

Morning just a update thyroid tests came back all clear. Thank goodness. I truly hope that you are feeling as well as you can be. Take good care of yourself. Jan πŸ€—πŸ€—πŸ€—πŸŒΉπŸŒ·πŸŒΊπŸŒΈ xxx

TheAuthor profile image
TheAuthor

Hi Jan101

I really am so genuinely sorry to read this my friend, and the poor communication is awful. There are different levels of thyroid dysfunction so it is impossible to say really how yours is my friend? I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken x

Jan101 profile image
Jan101 in reply to TheAuthor

Morning Ken thank you so so much for your reply. Spoke to gp yesterday and she is running all her own tests and she is also testing for other things as well. So fingers crossed I will have my results in about a week. Then I should find out what is really been the problem.

I truly hope that you are both feeling as well as you can be. Take good care of yourself my friend. πŸ€—πŸ€—πŸ€—πŸŒΈπŸŒΉπŸŒΊπŸŒ·xxx Jan

You may also like...

Don't know what to do !!!!!

am so tired I cannot think straight I really don't know what to do now. I called the Care Home...

I don't know what to do!

year although like many of you, I had it for a while before that. (I also have endometriosis which...

Don't know what to do with my self

Other wise it hurts . do you work through the pain and get on with it . or do you rest up? The doc...

Don't know what to do!

do slight exercise and it's just done me over... I don't think I have come to terms with how my...

I've been placed in the ESA wrag and don't know what to expect.

phone call last week from Benefits Office telling me I was changing over to ESA and my money would...