I should have known better

[yorkshiregirl44]

Had a telephone appointment with my doctor today. Told her about increasing pain, weakness and muscle loss. I suggested that i wanted to check if my problems could be connected to inflamation of my muscles or blood vessels. I was told my symptoms did not fit these conditions or any other patucular condition and she could only suggest sending me back to the chronic fatigue clinic, which i refused as i have already been given this pointless dignosis. She said she could run lots of tests and eventually they would show something wrong but maybe not was causing my symtoms..however she wasnt going to run these tests...what aload of rubbish.

She asked me if i had any suggestions and i said thought a rheumatologist might provide some answers. Finally she agreed to this. I want to look for a understanding and knowlegable rheumatologist as often referrals i have had in the past to specialists have not been prepaired to look further than their nose.

I then started to tell her about my endo appointment which was not very productive as the endo was only going to act upon blood results. At this point the doctor said she had another patient waiting.

Why oh why do i believe that they are going to listen... surely if you have symptoms that dont fit neatly into a condition thats why we visit the doctor to explore and find some answers.

Too many times i read that doctors are scientists..if that is true surely my symptoms can be explained through science, they have just not worked out what formula to use..in other words they are not running the correct tests.

Another frustrated and tearful doctors appointment.

[Hidden]

Hi Christine, I am sorry to hear that the doctor's appointment did not go well.

I am getting confused by my own GP too - I've had one of them say that so long as the TSH is normal, testing for FT3 and FT4 is "irrelevant". He is now saying that even when I was on the Levo and stayed on it the first time I was not producing enough thyroxine back then. But because they only tested the TSH and it was normal they did not test for FT4!

Same GP also said there are lots more tests they could run so as to explain why I am still showing adrenal symptoms when the ACTH stim test was normal. But when I mentioned this to another GP I saw he was not willing to test me. I don't know what is going on.

I agree, you visit the doctor to explore and find some answers. I didn't have many at my appointment today and was given SSRIs to take. I don't know what other tests they could be thinking of running on me if they only ever go by the ACTH stim test!

I would go ahead with my adrenal home test kit if I could but since restarting my Levo I will have to wait until my levels are stabilised.

Hang in there, we will get somewhere I'm sure.

Jo xxx

[yorkshiregirl44 in reply to Hidden]

Thanks Jo..we seem to go from one nightmare to another.

Why did your gp think you werent pruducing enouth thyroid hormone.

[Hidden in reply to yorkshiregirl44]

Thanks for your reply.

When I spoke to the GP on the phone yesterday he said I was still not producing enough thyroid hormone. I don't understand why he said that as he would only have the TSH result - and that was normal.

I know usually that when the TSH result is normal they don't check for FT4 or FT3. So what he said has made me think that they did test for FT4 and have not given me the result for that.

Jo xxx

[Hidden]

Hi so sorry you are upset by your doctors attitude I would be too.She sounds about as useless as many I have come across, they just dont realise this impact they have om peoples lives. Is there no other doctor in the practice or locally who has a better reputation? Hope you het a good rheumatologist.Maybe ig you wanted to disclose where you live someone may be able to recommend one in your area or close by.Take care x

[yorkshiregirl44 in reply to Hidden]

Yes thanks i was thinking of posting that question.

[shezaroo123]

Hi Yorkshiregirl, it sounds like I am going through a similar thing to yourself, have you seen any rheumatologists? Unfortunately from my experience if you have already been diagnosed as CFS/Fibro then getting a specialist to say different to this is nion impossible. I had a course of steroids which took my joint pain away which GP said this proved I didn't have Fibro but an inflammatory problem which he believed to be sero negative RA (due to bloods being normal) and have had a bone scan which showed severe inflammation and mild and the rheumatologists that I have seen still won't acknowledge I have an inflammatory problem and basically been told that lots of people are in pain for no reason and I should just accept this!!! Even though I can't function pretty much housebound and have no quality of life and have slept on the sofa for the last 4 years as I can't get up my stairs due to the pain it causes when I bend my knees and the debilitating fatigue. But they seem to think it is ok to be left like this. I have now booked an appointment with a private rheumatologist and hoping and praying he will diagnose and get me better! Feel free to message any time you like.

[yorkshiregirl44 in reply to shezaroo123]

Yes i do sound so like you... the last words my doctor said to me i thing the rheumy will onyl confirm cfs/ffm...so a non starter there. Im trying to find a good rheumayologist who will listen..i had thought of sero negative RA and vaculitis and polymycotis... my doctor said my symtoms dont fit....which is odd because they are pretty much the same symptoms as CFS and FM which they agree to.

Iv just had some private blood tests done which have gone to America and hope they can indicate where the problem might be.

[shezaroo123]

Have they tested your pressure points? As to be diagnosed you should have at least so many of them but can't remember what that number is got a feeling it's 15 but not sure, I didn't even have these checked when I was told I had it and then when rheumatologist did check I had 0 to which he said I don't think we will ever find out what is wrong with you! Their excellent ability to not help patients just astounds me. Do you know what they are testing for? What company did you go through to do this? and was it very exspensive? I have to wait till 31st March to see this private one which feels like it's years away when each day just feels like a living nightmare! What symptoms have you got?

[yorkshiregirl44]

I was diagnosed with CFS and fatigue clinic and then my doctor just said it was fibro as well because of my pain.

Main symtoms, pain in joints and non joints, burning pain in shoulders, warmth to joints and swelling at times, stiffness, even if i lift a plate i can feel tearing at side of chest. Fatigue, brain fog, sometimes flu like feeling. One of the worst symptoms is this horrible feeling of just being unwell, dry mouth nausea, no appetite.

The blood tests i have had done are called methylation panel, they are a type of DNA testing whcih can show up hundreds of different things. A uk company does them but sends them to America for testing.

Im not sure if i can put the lab name on here but i will pm you with it.

[KLR22 in reply to yorkshiregirl44]

The big mistake doctors make is that they know nothing about ME. ME causes pain too, not just Fibro. All your symptoms sound like ME to me. Doctors seem so useless where ME is concerned. I'm sorry you're going through this but you're not the only one.

Karen

[merissa in reply to yorkshiregirl44]

Hey hunny, hold faith, your struggling at the minute ,fybromyalgia as you no just means wide spread pain, fybro and thyroid have identical symptoms, but because the tsh is normal we r diagnosed with a made up diagnoses with no cause.

Rheumatologist, sorry ain't the best specialist they will have the same conclusion as your gp. You need a Dr that will look at the whole picture

But all consultants waddle in there own canoes.

Your blood test won't be long, the wait is worse than the symptoms. You I feel have autoimmune d, and possibly another autoimmune like me.

So the rhumi, the Neuro, the cardiologist, gastrologist, gynacologist, dnt have a clue, if your symptoms don't fit into there area of specialism. As we no, we need a multidisciplinary approach as all our bodily functions are being attacked.

Finding the cause is another journey and GPS will not refer to all these specialists and believe me , we need them all. You need a natural endocrinologist. The best endo I seen was in London, cost me a bit, but was worth every penny, although not cured get, wanted to no what was causing some of my symptoms. Pm me if you like hun. X