CFS: what symptoms are 'normal' and what aren't?

[Effi]

Hi @Kenjie What you said about your thryoid issues reminded me of a blog I once read. It's from a woman with Hashimoto's who was undiagnosed for a long time because chronic thyroid issues apparently fly under the radar at the doctor's office quite often. Maybe take a look at it to see if it sounds familiar? http://www.solve-the-thyroid-puzzle.com/hashimotos-symptoms.html

 

[alex3619]

there are no ME/CFS specialists in New Zealand.

I think there are at least two, one of whom, Rosalund Vallings, is famous, and I think was on the ICC panel.

See for example:
http://www.howickhealth.co.nz/CFS.aspx

Oops, someone basically said this.

 

[alex3619]

Reverse T3.

Testing this should be mandatory for anyone not fully responding to thyroid replacement.

 

[Kenjie]

I think there are at least two, one of whom, Rosalund Vallings, is famous, and I think was on the ICC panel.

See for example:
http://www.howickhealth.co.nz/CFS.aspx

Oops, someone basically said this.

I have her book out from the library .. Read 1-2 chapters so far

 

[SOC]

...why would a doctor diagnose CFS if it wasn't. I'm pretty sure its cfs even though I wish like many that I didn't experience this.

Very few doctors really understand what ME/CFS really is and diagnose any example of chronic fatigue as Chronic Fatigue Syndrome. This saves them the trouble of tracking down other (potentially treatable) reasons for fatigue. So just because a doctor diagnosed it, doesn't mean you have it. If you have some other reason for your fatigue, you want it treated, not fobbed off as "It's CFS, there's nothing I can do."

...doctors here in nz don't listen very well and send you home after saying you're fine or not much you can do re CFS.

This is true all over the world and is one reason why you DON'T want a CFS diagnosis if you can avoid it. It gives doctors an excuse to ignore you and refuse to dig further and find treatable conditions. It looks like you are already seeing that.

If I were in your shoes, I'd be objecting to the CFS diagnosis (even if I were pretty sure I had it) and pushing the doctor to look more deeply into OI and thyroid issues, both of which can cause fatigue. Even if you have CFS, getting treatment for OI and thyroid problems can improve functionality, but you have to get a doctor to look into that, which many won't do once they've slapped the Nothing-To-Do-About-It-CFS label on you.

I think that Dr Vallings treats ME/CFS patients in NZ. She is one of the authors of the ME International Consensus Primer for Medical Practitioners.

If you are convinced you have ME/CFS and/or can't get a GP to treat you appropriately, it makes sense to try to see Dr Vallings. She should be able to diagnose and treat you properly.

 

[Kenjie]

Very few doctors really understand what ME/CFS really is and diagnose any example of chronic fatigue as Chronic Fatigue Syndrome. This saves them the trouble of tracking down other (potentially treatable) reasons for fatigue. So just because a doctor diagnosed it, doesn't mean you have it. If you have some other reason for your fatigue, you want it treated, not fobbed off as "It's CFS, there's nothing I can do."

This is true all over the world and is one reason why you DON'T want a CFS diagnosis if you can avoid it. It gives doctors an excuse to ignore you and refuse to dig further and find treatable conditions. It looks like you are already seeing that.

If I were in your shoes, I'd be objecting to the CFS diagnosis (even if I were pretty sure I had it) and pushing the doctor to look more deeply into OI and thyroid issues, both of which can cause fatigue. Even if you have CFS, getting treatment for OI and thyroid problems can improve functionality, but you have to get a doctor to look into that, which many won't do once they've slapped the Nothing-To-Do-About-It-CFS label on you.


If you are convinced you have ME/CFS and/or can't get a GP to treat you appropriately, it makes sense to try to see Dr Vallings. She should be able to diagnose and treat you properly.

I'd love to do this... Was thinking about that this morning when I viewed a website someone here provided for Dr vallings services.

You're all very knowledgeable and helpful

 

[Kenjie]

Testing this should be mandatory for anyone not fully responding to thyroid replacement.

I saw my doctor today to request a referral to an endocrinologist to look further into my thyroid.. He says that if he referred me the hospital would say no because all my tsh levels are normal on levothyroxine...I still want to see one to rule out any particular thyroid disease.

I asked about reverse t3 and he told me that is not a standard test done at medlabs and that he would look further into that to find out who it is done through.

He has also given me blood testing for thyroid antibodies and something else to do with thyroid and I have also requested to have bloods done for Celiac's disease so I will do all those together in 2 weeks as I have to eat gluten for at least a couple weeks then be tested.

I also asked about referral to Dr Rosamund Vallings he said he'd never heard of her so he looked her up on his computer and told me he cannot refer me to her because she is in a different region. If he refers me on to any specialists they have to be in our own region.

So I will do the tests and see what happens from there. Just want to make sure we have not missed something and hopefully he will find out more about reverse t3.

 

[Kenjie]

I also don't really think my doctor considers me serious enough to send to an endo because he told me people that do have serious endocrine issues take months to be seen after they're referred and that they'd look at me and say no.

Thoughts anyone?