Hashimoto's, joint hypermobility and Basilar artery syndrome--very confused!

[scatterbrain]

Hi everyone,

Hope someone can help/advise. In 1997 i was involved in a car accident which resulted in whiplash injuries and concussion injuries to most of my joints. Initially I wasn't worried and thought I would be okay after a few weeks. After 2 weeks started getting balance and dizziness problems, sight and hearing issues, right arm going blue up to.elbow and finally blackouts, fits and mini-strokes. After 6 years of seeing neurologists, rheumatologists,psychiatrists etc was finally diagnosed with basilar artery syndrome and joint hypermobility which meant that the joint damage from the accident was permanent. I also had a previous diagnosis of IBS (from 1986) which was later found out to be various food intolerances including gluten.

I also have had reynaud's.since birth.

I have been on strong painkillers since 1997, a combination of ibuprofen, paracetamol and tramadol.

I use a walking frame or crutches.

Over the last 2-3 years my symptoms have become steadily worse especially joint pain, severe fatigue and breathlessness.

2 months ago was called in to doctors as part of well woman programme due to age (48) and found I had anti thyroid antibodies and started on levothyroxine 25mg.

I am very confused now as I have since been told whiplash can cause thyroid problems and all or most of the symptoms over the past 17 years could be caused by low thyroid after all.

I am particularly annoyed as I saw a rheumatologist 2 years ago when my joint pains worsened and she told me "I see you're seeing a psychiatrist, we'll leave it to him to sort you out."!

(Forgot to say I' d also previously had 2 borderline positive results for lupus-another auto-immune condition so she should have been aware to look for other auto-immune conditions.)

Sorry it is such a long post but I'm very confused, angry and tired- especially as I am now recorded as having a history of severe depression to the extent that the psychiatrist wants me to.go into the psychiatric unit voluntarily for a rest.

I feel.my life has been destroyed. My work history definitely has as I have been unable to.work for 17 years. Also I am.worried that if it bas been thyroid all along the nerve damage could now be permanent due to being left untreated.

I don't know how much longer I can carry on. Any advice much appreciated and thank you for taking the time to read this.

[MaryF]

I am sorry you have had such a vile time, but just to rule it out, as neurologists are notorious for not spotting this condition, please get them to check you for Hughes Syndrome, which often has other associated conditions including thyroid, and Reynaud's Syndrome: The tests are easy and cheap to do.. and also your GP could refer you to somebody on our list in your area, if in the UK, if not I can suggest other avenues. It is very important to investigate this..as I and many of my colleagues with Hughes Syndrome have been through similar. It may well be that your diagnosis is correct, but it does not hurt to look further if something within you tells you that it does not add up.

1. The charity website: hughes-syndrome.org/

If you explore this thoroughly you can find symptoms and associated conditions, also the tests to be done, and also under self help.....list of NHS and private medical contacts in your area. I went privately to get my NHS care back on track...due to lack of referring in my own case. Several other family members in my family have this also, and associated conditions.

Mary F x

[tegz]

It is well known that whiplash or any closed head [blunt trauma] injury can cause long term problems. I had one years ago and suspect it started the whole metabolic slippery 'down slope'. The main risk is damage to the vulnerable [bone ecased] pituitary which governs many hormones and is the producer of TSH, which Doc's just Lo-o-ove to use as a ready marker for thyroid function.

Unfortunate as it is not the best way to assay thyroid hormone utilisation.

If you actually have a high TSH reading then that would imply the gland is still doing a job, of sorts, anyway.

Thyroid performance is not the cause of many of your symptoms, from what you've said.

Getting thyroid treatment that works is not easy, as you can see on this busy forum but at least you know there are firm connections with your history of head injury and a way forward, on another front, to better health.

Good luck with finding the right medical care- you've already been through a lot!

[scatterbrain]

Thank you both for your replies, seeing the GP again tomorrow for iron,folate and b12 results so will ask about hughes.

[MaryF in reply to scatterbrain]

I may well be helping you bark up the wrong tree... but it is the other autoimmune problems you mention, have a look around the site and see what you think, contact me on here by private message if you need to. Mary F x

[Marz]

Sorry to hear of your poorliness. Stick with this site and try to carry out the advice given as best you can. You will see an improvement. Check out other posts connected with depression and other mental conditions. They are closely connected to low thyroid hormones.

Your dose is just a starter dose and really needs to be increased. For a clearer picture you need the FT4 and FT3 tested - oh and don't forget VitD.

How is your gut health? Auto-immune conditions are known to start in the gut. Also check out Hashimotos on the main Thyroid UK website....and there have also been good posts of late about this.

Wishing you well soon..........

[nostoneunturned]

For those just beginning to grapple with thyroid issues and doctors' attitudes please do get Dr Anthony Toft's little book "Understanding Thyroid disorders" £5 from Amazon/chemists, BMA publication plus Dr T past head of the BTA so drs. cannot argue with info from one of their own on Page 41-42 regarding intervals of levothyroxine increase or Judging the correct dose of thyroxine on Page 88, info on Page 88 relates to his info on ranges on Page 87. Important to know this as labs all differ in the ranges.

it is where the result falls in the range given that is important.

You truly are having and have had a horrific time and I wish you progress to better health.