MRI Results.

[Sparklingsunshine]

Hi

I received a letter yesterday which was extremely brief, from my NHS Neurology consultant telling me my recent brain MRI was normal. So no tumours, MS, motor neurone or any other nasties. Hopefully no early onset dementia either (haha husband take that).

So good news it's nothing physically wrong with my brain but I'm still none the wiser about my ongoing balance issues and this weird tingling prickling. I've got a raft of blood tests planned and a neck X Ray booked for this week. I'm also going to phone the consultant and see what's next. Are there other neuro tests I need/can have.

[SlowDragon Administrator]

Are you just taking levothyroxine

Not levothyroxine plus T3?

Approx how old are you?

Have you done Dio2 gene test?

thyroiduk.org/deiodinase-2-...

Gluten free or dairy free?

[Sparklingsunshine in reply to SlowDragon]

Hi I'm just on Levo

I'm 53

Gluten free, very little dairy but my antibody tests are always negative.

[SlowDragon Administrator in reply to Sparklingsunshine]

All four vitamins need to be optimal

Presumably you noticed improvements being gluten free?

If gluten intolerant, likely to benefit from addition of T3

Do you have an endocrinologist

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

Likely to need to go private initially

Request trial of T3

[e-mail]

Assuming you test positive for Dio2 …this can help get T3 on NHS (eventually)

[Sparklingsunshine in reply to SlowDragon]

Hi

I'm gluten free due to low carb diet, I'm not sure I'm gluten intolerant to be fair. I gave up bread, pasta etc as I wanted to lose weight a few years ago and low carb diet was most effective way for me.

[humanbean]

Two things that affect my balance are low Vitamin B12 and eating gluten.

Since the body needs adequate folate to make use of B12 then I would guess that low folate could lead to balance issues too.

I've come to the conclusion that I suffer from gluten ataxia

en.wikipedia.org/wiki/Ataxi...

I've been tested for coeliac disease and that was negative but I stick to a gluten-free diet as ruthlessly as I can.

All of the following would be worth checking out, just in case something rings any bells - all of them could lead to staggering and poor balance:

en.wikipedia.org/wiki/Ataxia

en.wikipedia.org/wiki/Gait_...

en.wikipedia.org/wiki/Movem...

[ConstantResearcher]

I would check your mold levels. I had all those same experiences with mold.

[Anthea55]

I had balance problems which I thought might be related to my neck. GP wanted to send me to a balance clinic - went once, but they were not looking at the cause of the problem.

Did my own googling and came up with VBI (Vertebro Basilar Insufficiency) - which has since been agreed by medics, including taking an MRI scan of my neck. Originally this problem was caused by looking at the books on the top shelf of our high bookcase when trying to chuck out many of them before I moved house, but it can happen any time I distort my neck too much, so I try to be careful.

The way I look at it is that my spine is a bit loose and can get out of alignment. This can put pressure on blood supply to brain which can cause my balance problem or sometimes slight vision problems. At first I saw osteopaths, but since moving house I now see a cranial osteopath fairly regularly who sets it straight again.

[Sparklingsunshine in reply to Anthea55]

Hi

I'm hypermobile, very bendy joints and I'm wondering if it's now affecting my neck, cervico cranial insufficiency. Got an X Ray this week.

[Anthea55 in reply to Sparklingsunshine]

My daughter is hypermobile and so are her sons. Do you know about EDS which is Ehlers-Danlos Syndrome? Here's a link to the Ehlers-Danlos Society.

ehlers-danlos.com/what-is-eds/

Quotes from that link

The Ehlers-Danlos syndromes (EDS) are a group of hereditary disorders of connective tissue that are varied in the ways they affect the body and in their genetic causes. The underlying concern is the abnormal structure or function of collagen and certain allied connective tissue proteins.

They are generally characterized by joint hypermobility (joints that move further than normal range), joint instability (subluxation [partial separation of the articulating surfaces of a joint]) and dislocations (full separation of the surfaces of a joint), scoliosis, and other joint deformities, skin hyperextensibility (skin that can be stretched further than normal) and abnormal scarring, and other structural weakness such as hernias and organ prolapse through the pelvic floor.

I've just found an EDS group on HealthUnlocked.

healthunlocked.com/edsuk

[Sparklingsunshine in reply to Anthea55]

Hi

Yes I have EDS, stretchy skin which marks and bruises like a peach, hypermobility etc. I've never had any dislocations thankfully.

[Yeswithasmile]

Hi Sparkling sunshine

I just thought I’d say that I am diagnosed hypermobile but….

Raising levo to 4 x 125mcg and 3 x 150mcg seems to be better for me. Ft4 level at 17 and 17.8 on bloods recently (12 - 22) . I raised to 7 x 150mcg and everything came back. Extreme joint pain, hair loss, fatigue, etc. That’s a mere 75mcg a week and it made all the difference, not in a good way.

The most my ft3 has been on these tests is 3.7 (3.1 - 6.8) and but I still feel better than when it was high and ft4 was low.

I am simply wondering if it could be the same here. That you just haven’t hit optimal yet?

I have had the dizziness, clumsy too but now I have been experimenting very slowly I see what a difference it can make.

Good luck with it all.

[Oatcake]

Hi Sparklingsunshine, I have just noticed this post and read through your earlier posts and can identify with the weird, wobbly feelings. So many possible causes and solutions. I just want to add one thought. It may have been mentioned already so apologies if I've missed it. I found brands of levo with acacia powder in them made me much worse. I am not saying that's the cause but it definitely exacerbated the wobbly, dizzy symptoms. About an hour after taking one I could hardly stand. It's something to consider.

[Sparklingsunshine in reply to Oatcake]

Hi

I always get Accord which doesn't have acaccia powder in, I tried Mercury, which does, but it made me itch😆. But thanks for the reply.