blah blah blah. another dead end. a slightly low moment for me.

[Guest guest]

Hello,

This doesn't happen very often, but I am turning to the forum for a bit of

support today. I am feeling a bit flat today after being given a letter that

was sent to my GP by a specialist I saw last month. On the upside, the

specialist does not doubt that I am fatigued and have unexplained pains, but on

the downside, I'm a bit deflated by his lack of investigation into where we

should go from here. I also have a family related thing happening at the

moment, so that might be adding to my slightly sad mood right now.

As mentioned above, last month I went and saw a rheumatologist who works with

people who have unexplained pain and fatigue. He diagnosed me with fibromyalgia

and chronic fatigue. I think both of those conditions are questionable. To his

credit, he DID say that chronic fatigue is fatigue that is caused by one or more

unknown reasons and not an 'illness' per se. I take that to mean I am fatigued

and they don't know why.

Today I was given a copy of the letter that the specialist wrote to my doctor.

The specialist agrees that my treatment for hypothyroidism has done little to

resolve my symptoms. My doc sent me to him because he wanted to know if there

was anything we had missed. The specialist said that because I had remained

relatively stable since 2007, he doesn't think that further investigations are

needed.

Great! Not! I'm feeling a bit deflated and his response isn't terribly helpful

to either me or my GP. Where can we go to from here? My GP was looking for a

bit of direction.

I'm surprised that he wrote I have been relatively stable since 2007. The fact

is that in 2007 I could not get out of bed for a shower without having to go

back to bed due to exhaustion, I could not think straight at all and was a mess

physically (couldn't walk without a limp or for more than 50m without a rest),

etc. The specialist seems to have not recorded my history properly because I

definitely haven't been stable since 2007. I would say that my condition has

fluctuated over the years and could be considered relatively stable at the

moment in so far that most days I have little energy and get confused and make

mistakes easily, but I'm definitely better than I was in 2007. I do have my good

days but they are far and few between.

My GP was looking for a bit of guidance re possible other things we could look

into, but obviously the specialist doesn't think there is a need. My GP still

thinks I am not responding well to the thyroxine (and the specialist seems to

think the same thing), but we are stuck between a rock and a hard place because

I cannot use T3. Yes I know - it would be good if I could use T3 and it would

be good if they could work out WHY I can't use T3 but nobody has been able to

work that out yet, so I'm none the wiser. The reason why I can't use T3 is a

long story that I won't go into again, but the gist is that I have terrible side

effects when I use T3. I've tried a couple of times and have not done well on

it.

The specialist mentioned the 'new concept' of intestinal bacterial dysbiosis

syndrome but stated that investigation of this remains experimental. He

mentioned it because I'm still having gut issues even though I am on a gluten

free, sucrose free, lactose free, vegetarian diet! When I look up 'intestinal

bacterial dysbiosis syndrome' on google scholar it has lots of references to

Irritable Bowel Syndrome which I also thought was a term used by doctors when

they weren't sure what you have.

I know that lots of awful things are happening in the world at the moment and I

shouldn't really complain about a letter, and believe me I count my blessings

for everything I have, but right now I am feeling a bit deflated by all this.

I've tried so many things to get better - completely changed the way I eat (I

have healthy wholefood meals made from scratch nearly every day), I no longer

dye my hair to eliminate the possibility of introducing toxins from that source,

I drink rainwater (instead of our city's fluoridated water from the mains), etc

etc etc. I supplement with vitamin B complex, Vit D, Vit C, Folate and Iron,

and will soon recommence using a Zinc supplement. I don't know what else I can

do???

Thanks for listening to my whinge.

Slightly deflated and 'over it' P