Jump to content
Important Survey - Please Participate ×

Open Group  ·  471 members  ·  Rules

Long Haulers

Autoimmune during/after Taper....


[ca...]

Recommended Posts

 

Hi everyone,

I haven't been on the forum much in the past year.

I finished my taper in Sept 2021, continued to have symptoms for some time, then developed new ones including a tremor. After much to-ing and fro-ing to the doctor, I finally got them to do blood tests, which my Optometrist was able to recommend due to eye issues.

In January 2022 I was diagnosed with Graves' Disease and Thyroid Eye Disease. I thought that was the answer to my ongoing issues and I stopped posting much as I didn't feel I fit anywhere. 

I have been having treatment for that for over a year now and am still symptomatic despite bloods being in range.

Unfortunately 3 years of continuous health issues has triggered my ptsd as well, so I am now dealing with those symptoms, oh, and menopause too :wacko:

I really am wondering if my symptoms are simply a combination of everything or lingering symptom from the benzo's (I was on them for 25+years consistently for epilepsy).

I currently have heart palps, cog fog, fatigue, short-of-breath on exertion. I also experience episodes of dizziness/weakness with no obvious cause.

I am in the process of seeing a cardiologist etc to rule out heart conditions etc. and reviewing my Graves' Treatment and seeking Mental Health Support (all of which are lacking in a rural area - so most I have to do myself).

I live in Australia, so if I don't respond quickly, it's usually because of time-zones.

Thanks for reading  :thumbsup:

 

 

 

  • Like 1
Link to comment
Share on other sites

casper ... sounds like you have your hands full at the moment ...

I have no experience with any of the things you mention ... I do know that things often do settle down ... sometimes it takes a fair bit of investigation and trial and error to find a way through this stuff ...

I have found that attention, compassion, and patience can be helpful responses to our suffering ...

Be Well ...

  • Like 1
Link to comment
Share on other sites

Thanks for posting NovaScotia.  My hands are very full and I am exhausted.

I came in the other day to catch up with my buddies here and everything has changed. So "I'll just quickly..." has turned into a two day event.... and my best buddie from here has decided it is all to much now her blog is gone, so I am very overwhelmed.

Anyway, I must head off, I'm trying to find some mental health support.

 

 

Link to comment
Share on other sites

Hi. I am currently going through the same. Autoimmune testing came back showing some elevated markers, but I am hesitant to start treatment in case it’s just the benzo madness lingering. I’ll be at 4 years at the end of the year. I still have some imaging work to do, and some degenerative changes have shown up. I don’t know if the pain is intensified from WD, or if it’s something to expect for life. It is very frustrating to navigate at this point. My plan is to hold off a little while longer before starting treatment. 

Ruling things out can definitely provide peace of mind. Hope you find some soon and also adequate mental health support. 

Link to comment
Share on other sites

12 hours ago, [[T...] said:

Hi. I am currently going through the same

Hi Tinkered, sorry to hear this.

I understand your hesitancy to start treatment. I had no choice as I had tremor, elevated heart rate etc etc, if left can lead to Thyroid storm. Antibodies were high too but they have all come down but still symptomatic. I still feel like I'm in withdrawal. I get periods of starting to really feel good, like 7/10,  but then straight back to a 3/10. So really inconsistent.

You're right, it is very frustrating to navigate.

12 hours ago, [[T...] said:

Ruling things out can definitely provide peace of mind. Hope you find some soon and also adequate mental health support. 

Thanks, I figure that's all I can do at this stage and keep trying, of course.

 

I hope you get some answers that are helpful too :hug:

 

  • Like 1
Link to comment
Share on other sites

I'm curious about what autoimmune tests have come back positive for many of you.  When I was in tolerance w/d I was diagnosed with Lupus and had a high anti-Beta2-glycoprotein 1 autoantibody, which is a blood-clotting antibody.  I have a blood-clotting disorder called Anti-Phospholipid Syndrome.  I bruise easily too. 

  • Like 1
Link to comment
Share on other sites

@[Be...] I’ve only had thyroid panel done due to ongoing tremor high heart rate after withdrawal (mind you I had to push to get tested).

I’ve also had celiac test to rule out absorption issues.

I have a family history of autoimmune (type 1 diabetes) but did not realise that diabetes can be autoimmune. 
 

I’m thinking if I don’t improve I may query getting other AI tests done but not sure how to go about that yet. 

 

Do you have a family history of autoimmune becks?

Link to comment
Share on other sites

On 31/08/2023 at 22:27, [[c...] said:

I get periods of starting to really feel good, like 7/10,  but then straight back to a 3/10. So really inconsistent.

Hi @[ca...], I’m sorry to see you’re still experiencing issues, the above seems consistent with benzo recovery.  Have you connected with TED support groups, do they mention the waxing and waning of symptoms?

Are you able to keep up with your chooks?

Link to comment
Share on other sites

Hi Pamster,

Thanks for posting.

I have connected with three Graves' groups, unfortunately two of them were not my cup of tea.

One on FB being the worst, all ppl did was post about going gluen free (which has nothing to do with Graves', celiac can be an issue if you have it but I have been tested and am negative to the antibody).

The third group has been the most helpful as it is Research based Public Group but no support posts are allowed as such. Also being on FB and a Public Group I am reluctant to post specific details as my "friends" will see my posts, including family who have not been supportive of the diagnosis since I got it. Multiple times I have spoken/text with them and they have no compassion, not one has asked how my treatment is going.

Along with the issues I have had with doctors saying "I don't understand your treatment" and making no effort to do so, I really am struggling to work my way though symptoms and try to find what they relate to.

 

Keeping up with day to day tasks is pretty much the bare minimum. Every time I increase my load, fatigue flares. Now that my PTSD has also relapsed that is causing emotional issues and they also flare with the fatigue. (that is related to family too).

Anything out of the ordinary/unexpected (i.e. coming here and finding all the changes) is completely overwhelming to me.

 

In saying that, I had a good morning this morning, very fatigued as usual but okay, drove to the next town over for a doctors appointment and shopping then had a hiccup this afternoon with the pharmacist (another ongoing issue - a person who likes to pry but does not like it (& has told me so) when I come in and am miserable). Needless to say I drove back to the other town and lodged my prescription there.

I am very dis-regulated and looking to start some PTSD treatment online (nothing available in our area).

 

I have a Cardiologist appointment on Friday, so hopefully he will rule/in out some symptoms (heart palps, sob, chest tightness). Another focus is likely menopause or as another Locum GP has suggested symptoms may be Vaccine related (he has had similar symptoms himself, all the tests show negative).

 

So I am just trying to work through all of this on my own (with hubby's support).

 

 

 

 

Link to comment
Share on other sites

×
×
  • Create New...