Neurology Consult

[Sparklingsunshine]

Hi

Some of you may remember I was getting weird tingling and prickling that started after an increase in Levo in October, its why I joined the forum. Its been coming and going but its not as persistent as it once was, its never gone away though. Some days I don't have it, others its noticeable.

I was sent a letter by the hospital for a phone consult on March 22. Not sure what the point of a phone consult is really but in these pandemic times you gotta be grateful they are assessing patients I guess.

Anyway I had two text messages, one asking me to confirm the appointment was still needed and the other asking me NOT to attend the hospital as I would be contacted. Thanks NHS for assuming I'm stupid.

Last week my phone rang and it was the neurologist wanting to chat about my symptoms. I explained I was due to have a phone appointment on 22nd. Not according to their records I wasn't. No record of the appointment they sent out to me at all. Which begs the question why I then got two follow up texts. You really couldn't make this stuff up. I don't know what is going on with the NHS at times.

I spoke to him for about 5 minutes. It wasn't really convenient and I had planned to write down some bullet points in advance to get the salient points across and of course none of this preparation was ready. So felt rather flustered but did manage to explain some of the symptoms I have.

The upshot is they are arranging a brain MRI, which looks for any abnormalities. My husband joked they are checking I have one and I've got to go for a load of nerve conduction tests in April, unless that is a phantom appointment as well. I'm speculating they need to rule out things like tumours, neuropathy, MS etc. So at least there's been some progress made.

[Alejandrita17]

I suffered the same symptoms and through it was due to Thyroid issues (MRI all clear). But after a while 2 of My 3 brothers started experiencing THE SAME symptoms, so we opened our eyes. After 8 months, symptoms have started to subside, so we now think it was due to the Covid vaccine. Don't rule that out.

[fuchsia-pink]

What a shambles (but sadly not that unusual)I assume they are happy it's "safe" for you to have the MRI "in person" at the hospital

Good luck x

[Sparklingsunshine in reply to fuchsia-pink]

Hi

I hope its OK, don't fancy a remote MRI lol.

[radd in reply to Sparklingsunshine]

Telepathic magnetic & radio waves 😆

[Sparklingsunshine in reply to radd]

I've heard of X Ray vision but not MRI superpowers 😄

[radd in reply to Sparklingsunshine]

🤣

[SlowDragon Administrator]

What are your most recent B12, folate, ferritin and vitamin D results

Looking at previous posts

You get B12 injections

What other vitamin supplements are you currently taking

How much levothyroxine are you currently taking

What are your most recent thyroid results

Pins and needles can be common after dose levothyroxine is increased, while levels rebalance

Perhaps you are ready for next dose increase in levothyroxine

Presumably you have autoimmune thyroid disease?

Hashimoto’s

[Sparklingsunshine in reply to SlowDragon]

Hi

No I don't have Hashis, just underactive. I've had antibodies checked twice, privately and NHS. Both negative. I take folate, vitamin D, B complex, as advised on here. Last bloods done in October. Folate was low so supplementing. I take 125mcg Levo. Ferritin was very good.

I've had pins and needles for over 15 years, long before I got diagnosed with hypo. I just assumed it was the Fibromyalgia or B12 related. But it's now spread to other areas, so not confined to hands and feet anymore. Which is a concern.

I did thyroid test end of December, TSH was 0.03, FT4 was 17, FT3 was 4.7 if memory serves. I need to organise a new blood test but had a lot on my plate recently.

[SlowDragon Administrator in reply to Sparklingsunshine]

20% of Hashimoto's patients never have raised antibodies

Request ultrasound scan of thyroid

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

TSH was 0.03, FT4 was 17, FT3 was 4.7 if memory serves.

Ft3 looks too low assuming range is 3.1-6.8

Cheapest for just TSH, Ft4 and Ft3 is Monitor My Health test at £26.10

Are you taking just Levothyroxine or levothyroxine plus T3

[Sparklingsunshine in reply to SlowDragon]

Hi

Just Levo. I thought my results weren't too bad considering how dire they were in October. Hopefully they might have improved since I last tested. I'm wary of involving my GP as I know they'll freak out at suppressed TSH. I'm feeling much better than I did a few months ago.

[Sparklingsunshine in reply to SlowDragon]

Hi SD

Do you think I should increase to 15O. I get 150mcg prescribed but following advice on here I didn't jump from 100 to 150mcg in October and have been coasting along OK on 125mcg.

But if you think my FT3 is too low should I increase to 150mcg and then retest? I suppose I'm wary of increasing as my TSH is already really low.I'm not worried but GP will be.

[SlowDragon Administrator in reply to Sparklingsunshine]

Before considering any change get full thyroid and vitamin testing done

Always test early morning, ideally before 9am and last dose levothyroxine 24 hours before test

[Mijmijkey74 in reply to Sparklingsunshine]

Have you been tested for raynauds disease and carpel tunnel syndrome? How did you get on with the MRI? Oddly in 2019 I received 2 letters for the same appointment for the 22nd of March that nobody knew anything about and I wasn't down on their system for an appointment on that date. Yet they had sent out the 2 letters for that date for me to attend a neurology appointment. It was so odd. Must be something about the 22nd of March that system's dislike. 😂 x

[Sparklyjenson]

Hi sparklingsunshine. I also had mri and nerve conduction tests due to pins and needles, prickling and numbness in hands and feet, lips and nose. They were all clear and the consultant said it must be due to stress and that he sees people with these symptoms and no other obvious explanation all the time. I was then diagnosed with hypothyroidism and starting taking Levo and vit D, and my stress levels reduced and it went away. This means I’m not sure what caused it, but it has recently returned so I’m focusing on getting the right thyroid medication and vitamins at the right level. My mum had the same problem and her scans and tests were also clear but it turned out it that her neuro sensations were caused by pernicious anaemia, so she was given vit b12 injections. Fingers crossed your brain scans and nerve tests are ok and it’s just a blip that can be fixed with vitamins and thyroid meds.

[Sparklingsunshine in reply to Sparklyjenson]

Hi

I'm not sure, I've had it for over 15 years and just accepted it was either due to fibro, is a common symptom for that or the fact I have B12 deficiency. I've suspected I might have suffered some permanent nerve damage as I went for many years untreated for B12 issues. I've always had problems with B12 since childhood.

I guess I'm concerned it's spreading to areas where I've never had it before, my head and trunk. Tops of my thighs etc. It's like my nervous system has become too sensitive and is picking up or amplifying sensations which should be too low level to be bothersome.

It could be my fibro has got worse and that's causing these unpleasant sensations. That affects how the brain interprets pain and other signals. But thank you for your kind words.

[WhyAmISoTired in reply to Sparklyjenson]

Sparkly, have you been tested for pernicious anemia? If your mom has it you may have it too? Tingling is a typical symptom of b12 deficiency

[Sparklingsunshine in reply to WhyAmISoTired]

Hi

I think you've answered the wrong post lol. My mum's never had PA.

[WhyAmISoTired in reply to Sparklingsunshine]

I was replying to Sparklyjenson who has a similar (start of) username!

[Sparklyjenson in reply to WhyAmISoTired]

I have had some recent tests for PA as I feel pretty sure I have it, but all my blood results are borderline in range so my gp is not keen to follow the b12 path. I will keep plugging away with private tests and I’m pretty sure my levels will dip at some point below the magical thresholds!

[WhyAmISoTired in reply to Sparklyjenson]

Check out mcpiqojournal.org/article/S... (you can download the full pdf). It's a very good article and it is accessible for non specialists. It shows how you can have a deficiency while your labs are still in range.

[WhyAmISoTired]

If you are taking oral b12 supplements, this could mask a b12 deficiency in your blood tests. You can post on the Pernicious anemia forum for advice.

[Sparklingsunshine in reply to WhyAmISoTired]

Hi

Since I started on B12 jabs my levels haven't been checked. GP assumes jabs are sufficient. They won't bother testing them. Believe me I've tried. Nor will they agree to more frequent jabs.

[WhyAmISoTired in reply to Sparklingsunshine]

If you are taking injections, things are different. It is not recommended to test b12 levels while on injections, because that number becomes meaningless. However some people need more frequent injections than every 3 months. Do you notice a difference in tingling before/after injections?

[Sparklingsunshine in reply to WhyAmISoTired]

Hi

Not really, maybe it gets worse I'm not sure. I can feel more tired before I get one. Am due my next one on 25th March so will see if the tingling improves.

[serenfach]

I agree about the NHS not knowing what is going on. I had a phone consultation booked with a Hematologist (not enough broadband for video!), but as other tests had shown my blood was OK, I phoned to cancel. It took 8 phone calls to actually get someone to cancel the appointment, and then the Hematologist phoned anyway! He was insistant on a blood test for childhood bleeding (I am an OHP!) and wanted me to drive 60 miles for the test. I suppose he had to be seen to be doing something!

[raglansleeve]

It was neuropathy that first took me to the doctor a few years ago, and I had blood work done that showed high TSH. I started taking Synthroid for the hypothyroidism. My "pin pricks" were everywhere on my body. My scalp, upper arm, torso, toe, knee, nipple, eyebrow, buttock, abdomen - not one single place wasn't affected. Once Synthroid took hold, symptoms improved, and improved again each time I upped the dose. I'm still in that process, and about 90% of the pricks have disappeared, but it's interesting that the pricks are now primarily limited to the extremities (hands and feet). Maybe you are having them all over now because you need a higher dose? Maybe I still do too and it could be that the Synthroid only travels so far and doesn't quite reach my edges?

[alysonkerry-]

Hi Sparkling sunshine I posted a few weeks ago & also back in April re tingling pins & needle type feeling on my scalp I am hypo with antibodies & presumed it was either my thyroid or hormonal issues I am 58.The symptoms came & went in April & thankfully have done the same now & I honestly believe they may be related to Covid or the Covid vaccines ??

I literally today have just sent my blood off to blue horizon for a full blood count/ test to be done privately as my GP only tests TSH too so will see if they show anything on next couple of days.

Wishing you well & hope you get to the bottom of bathe strange sensations they’re quite debilitating when you have them on & off for a period of time & of course your mind runs riot. I’m sure your mri will be fine & give you peace of mind too when you have it. Keep us posted on the forum with how you get on but your definitely not the only one of us who have these sort of symptoms take care😊

[Sparklingsunshine in reply to alysonkerry-]

Hi

I did wonder if it was my covid jabs but I had pins, needles and leg twitching long before covid came along lol. But they were hands and feet only. Now I'm getting them in other places, and uncomfortable itching. I like it to ants crawling under my skin.

My scalp and to a lesser extent, my face have been affected. Its been nearly 6 months so I would like to get to the bottom of it. Also had a bit of jelly legs sometimes and feeling a bit breathless sometimes. I will keep you all posted. Thank you for your good wishes.

[alysonkerry- in reply to Sparklingsunshine]

Good luck abs please let us know how you get on it sounds awful 😊

[London3891]

Hi Sparklingsunshine, like you I have been experiencing strange neuro sensations for the past few years (as my thyroid declined and continuing after I was diagnosed and stable on levothyroxine). The neurologists I saw both think that my dropping thyroid hormones were the original “stressor” that triggered the neural pathways to get confused. I still have the sensations, so I can’t offer you any suggestions as to a cure…but what I did want to tell you - and I wish I had known this when I spent months terrified that I had MS or some other disease - is that MS tingling/numbness tends to come on and stay. If you have sensations that come and go, and which move around the body, then all the research I’ve done and the conversations I’ve had with neurologists, suggest that it is “neuroplastic” pain i.e. your brain misinterpreting ‘safe’, normal signals from your body and producing pain because is is confused. I tried Amitriptyline to calm the sensations but it didn’t really work and I’m not convinced of the cost/benefit of taking something like this anyway. However, I have recently discovered a whole world of new pain therapy approaches that mainly comes out of US research and focuses solely on brain retraining (if you’re interested look up the Curable app/programme). It focuses on all sorts of neuroplastic pain conditions (anything where there isn’t an underlying physiological issue/injury) like fibromyalgia, migraine, back pain etc. People rave about the results using this approach (and personally I think there’s nothing to lose by trying it as there’s no medication involved). I know it’s really horrible and scary having random, unexplained symptoms, and I really feel for you. Please don’t lose hope though. Once I had my 2 all-clears on MRIs and various nerve conduction tests, I started to truly believe that the pain was a product of my brain misinterpreting signals, my anxiety went down massively and the sensations melted into being more of an irritation than a source of stress. Good luck to you and message me if you want any more detail.