I’m exasperated and disappointed not to mention worried at what else it could be but I was told by neurologist today that my symptoms will not be thyroid related.
Still waiting for my T3 & T4 (GP refused to do TSH as had been done in early April & apparently won’t have changed in 8 weeks?!) , thyroid antibodies and vitamin D.
I was told ferritin normal but not told what is was.
Thoughts ?
Thank you
So what did this neurologist think was causing your issues ?
Ferritin needs to be around 70.
Testing Homocysteine and MMA could rule out B12 deficiency in the cells as your serum result seemed fine as you were supplementing.
I would read through your post/thread of 3 days ago for good advice about increasing your dose as your TSH is too high.
He’s not sure Marz but wants to rule out Myeloma, ovarian ca, MS & Lyme disease. I will re read those posts as so many others did report similar symptoms. Will check ferritin
Thanks Marz
Sounds like your neurologist has an expensive workup planned. Why not try beginning treatment with a simple approach (checking thyroid function and treating problems if necessary) and then moving on to more complex testing if thyroid meds and vitamin supplements don't help your neuropathy? That's what I would suggest before agreeing to rule out more complicated diagnoses. Just my opinion. And worth a try. And when lab results are obtained don't settle for being told they are 'normal'. Demand specific numbers with ranges in the form of a print out. It's your right. Then post them here for some very sound advice. Take care. irina
My neurologist said that hypo can cause neuropathy. So, who's right? I think the best thing is to optimise your T3 and see what happens. Good luck. 
I hope yours is right Greygoose! I soooo want mine to be wrong.
Will see what T3 result is
Thanks
Well, to be honest, the problem would not be what it is now, but what it was in the past. Neuropathy isn't instant, it takes time for the nerve endings to die off. So, if your FT3 was low in the past, that could have done it. And, optimising your T3 now, could help, but might not get rid of it completely.
Oh I see. Do nerve endings regenerate? The fact that the symptoms are quite spread out (hands & arms & feet & legs) & have worsened in the last 6 weeks is worrying.
Hoping & praying for the best
Have you tried B12 injections. I have numb lower legs and need to wear shoes all the time so I can feel the shoes connecting with the ground - sounds strange - but my shoes are my feet. Nerves damaged after spinal surgery for stenosis. I inject B12 weekly ... B12 is involved in the myelin sheath protecting nerves.
No I haven’t Marz but because my B12 was high (I only take b complex about 2-3 times per week) I’m not sure they would give them as I’m not deficient. Sorry to hear of your spinal surgery. Hope you recovered well.
You can buy your own B12 injections on-line like so many do on the PAS Forum here on HU.
Hope you soon find some answers.
Peripheral Nephropathy is mentioned many times in Sally Pacholoks Book, 'Could it Be B12 Deficiency, An Epidemic Of Misdiagnosis.' My late Mum had Peripheral Nephropathy and was always told it was probably down to her diabettes.
(Diabetic Neuropathy,)
My late Mum had high amounts of Serum B12 in her bloods, no doubt because she supplemented with high dose vitamin B12, but a stand in Doctor just before Mum died told us that Mum's complete lack of taste for two years and Peripheral Neuropathy of her feet and legs was down to Vitamin B12. Mum died a few weeks later down to her spine unexpectedly collapsing.
Sally Pacholok also mentions that back in 2004 there was a link found between vitamin B12 deficiency and osteoporosis (and other spinal conditions from head to toe,) I only wish I had bought Sally's book sooner as Marz kept prompting me to do. Everyone needs to buy Sally Pacholoks book as there so many conditions that you would not think connects with a B12 Deficiency.
I'm sorry to hear about your mum. I'm going to buy that book too.
Any other vitamin/nutrition books anyone would recommend.
Thank you Polly91, I now feel my Mum is helping me from above.
Please, please just buy that Book by Sally Pacholok, it is an eye opener and I now know, thanks to Sally's book that my Dad who the specialist coined it as having 'a Tripple Whammy' of Parkinsons, Parkinson's Dementia and Supra Nuclear Palsy, no doubt had a vitamin B12 Deficiency condition that could well have been the main cause of all his three conditions.
b12deficiency.info/signs-an...
The above links takes you to the website about B12 Deficiency. Scroll down to view the neurological symptoms that appear before the others. Also look at the Menu and click onto Films to view the videos - to understand just how serious the condition is.
I had gut surgery in my 20's for TB and Crohns which removed the Terminal Ileum - the only place B12 is metabolised for its journey back to the liver. Did any Doc tell me I would need B12 injections for life ? - NO. I discovered for myself and have been injecting weekly for several years now - as I can buy OTC here in Crete. Of course it was too little too late and I still struggle with the numb legs and feet - also ataxia But at almost 72 - there is so much I can do and have just finished taking a yoga class !~ Started teaching at 65
You will notice I mention B12 a LOT !!
Books: The Calcium Paradox. The Magnesium Miracle. The Vitamin D Solution. Perniciolus Anaemia and B12 Deficiency by Martyn Hooper - Chairman of the PAS society. They have a website. Sustainable Medicine by Dr Sarah Myhill - and of course there are many many more !
What an awful yet inspiring journey you have been down. I am in awe of you learning to teach yoga at 65! I took up yoga at 50 but have stopped in last 2 months because of nerve pain in my arms etc. I will hopefully start again soo. I wish I could attend one of your classes - you sound great. Thank you for these recommendations x
I had numbness and tingling when hypothyroid which resolved when I was medicated.
Do you mind me asking where the numbness and tingling was, and how the symptoms appeared?
I'm having something a little similar and was just curious to find out whether there are any parallels with my symptoms.
Not at all. The tingling started in my hand about 3 months ago but then in arm & other hand & arm. Also in lower leg & foot. Sometimes it feels tingly other times funny bone nerve trap & sometimes hot & prickly. I also had neck ache & hotness. Now the tingling is subsiding (I increased my levo by 25mcg a week ago?) but now I have headaches.
Hope you’re not feeling bad DaisyBelle85?
Thanks for asking Polly 😊
Unfortunately, these 48 hours I've seen a spike in muscle pains and pins and needles- especially at night. It's getting quite exhausting tbh, I'm starting to feel very defeated and severely depressed.
Really glad to hear that your symptoms are improving somewhat, hoping things continue to get better for you x
Sorry to hear this DaisyBelle. I hope you can find some relief. I have increased my Levothyroxine by 25mcg - but ideally I really need T3. Take care
Thank you. Take care of yourself xx
Hands, legs and feet mainly but also face and lips.
Were you already hypothyroid or newly diagnosed MiniMum97? Did you just add T3 or just more T4?
Thanks
I don’t quite understand what you mean. I was diagnosed hypothyroid in May last year and had numerous symptoms in the months /years leading up to that. The numbness and tingling actually was one if the first symptoms to start and that was probably about a couple of years before that.
To explain in full the tingling was mainly in extremities but when at its worse it was all over my body. It started out as crawling and progressed to tingling, crawling and prickling. The numbness came later with the prickling. Probably a few months before diagnosis.
I am actually now hyperthyroid and have tested positive for Graves (endo thinks I have Graves and hashis). And have been very symptomatic over last few months. During that time the tingling started to come back (and I do still have periodic tingling anyway but with no numbness). I had stopped my b complex to see if it made any difference when I was having hyper symptoms but no diagnosis. I started again when tingling returned and it went away again.
HOWEVER when I was first hypo I took b complex and b12 1000mcg for a long time and it had ZERO effect on my symptoms. The tingling and numbness resolved along with 90% of my other symptoms when I was “optimally medicated”. So I am not sure tbh if the later b complex tingling was a coincidence but I will test again in a few months when my thyroid is stabilised to be sure.
Hope that all makes sense!!
Yours is right, most medics are arrogant and mediocre, excluding ignorance.
Have you been checked for diabetes? It can give you neuropathy.
Hi Caze
I’ve just been given my HbA1c & it’s 41 mmol/mol & range states 42-47 is high risk of developing type 2 diabetes.
Blood sugar was 5.7 (2.6- 6.0) mmol/L
So I’m not far away from diabetes ? I guess it’s possible that is causing it??
I’m not overweight but I know slim people can get diabetes too.
Anyone else get their blood sugar monitored & anyone close to upper limit?
Thank you
I hope that your blood test for diabetes was fasting from the night before as also having tea or coffee with milk would skew the results. Jo xx
Thanks Jo. Actually I did have a cup of tea before the test (with milk). I think it could skew the plasma glucose test but not the HBA1c test as that is a measure of sugar over the last 3 months. Unless you know differently Jo- I’d be interested to hear. Thx. Xx
Hi Polly
Back in 2008 I had a blood glucose test which was normal (at my insistence as I had neuropathy and wondered if I had diabetes). GP said 'I told you so, you don't have diabetes'. Six months laster I had a glucose tolerance test(gold standard for diagnosing diabetes) at the hospital -diagnosed with type 2 diabetes. I was not fat. Been on Metformin since.
Ideally yr fasting blood sugar should be under 5. I would say you could be pre-diabetic. Best advice - watch yr diet, no sugar or beige carbs - potatoes, white bread, rice and pasta and get yourself a blood glucose meter.
Google Dr Bernstein's 'Diabetes Solution' Brilliant book
When diagnosed I was not fat - perhaps a little overweight. I am on a strict diet because I have now been informed that I have diabetic retinopathy. I am now down to 9 stone at 5ft 6. 10% of type 2 diabetics are slim. It is now suggested that there could be an autoimmune link to type 2 and therefore someone who already has an autoimmune disease such as Hashis would be more likely to get another.
Also, if your are thyroid hormone resistant you could also be insulin resistant (Dr Myhill). Autoimmune diseases like to hang around with each other. Some are of the opinion that some slim type 2 could even have a type of type 1.
Thank you Caze yes you could well be right that I'm prediabetic. I will definitely watch my sugar and beige carbs. What can you eat other than vegetables ?! Thank you for the book recommendation.
I too had heard that slim diabetics may have type I. I need to do some research but it does look like I'm thyroid resistant.
Thank you.
That's a bit weird since TSH changes every hour and is dirt cheap to test. Having said that, peripheral neuropathy is more often caused by low B12 or pernicious anaemia or by low calcium (but those can be related to autoimmune hypo, as we know)
Angel ON they did check TSH & it’s gone up since early April. It’s now 3.94 and FT4 is 22.4 pmol/L (12-22)
FT3 is now 3.9 pmol/L (3.2-6.8)
I will ask about B12 again but it was >800
I will start a new thread with all results.
Thank you
Hi Polly, you don't seem to be converting your t4 to t3 very well as t4 is at the top of the range and t3 just scraping in at the bottom. That is not optimal and you need t3 added to your meds but would probably have to buy it yourself. before I was diagnosed I had tingling and numbness and it practically disappeared when t3 was added, but I'm not saying that that would cure it for you. Jo xx
That is so interesting Jo. Based on everything I’ve learned from so many great people on this forum I too think I need T3 added. How long did you have the tingling for ? What dose of levo were you on when you had tingling and what dose did you have of both levo & T3 when tingling stopped? Also how did you get hold of T3? Did your GP prescribe it? Sorry for all the questions! Thank you xx
It was so long ago I really can't remember. I do know that the tingling did start to recede the longer I was on t4. I don't think that it went completely until I added t3 about 5 years later in 2011. I am on 80mcg of t3 but am waiting to hear from nhs Tayside if they are going to keep prescribing it for me. Fingers crossed.
I got a referral letter from my gp and saw a Dr Skinner in Glasgow (he has died since then) and he recommended t3 and my doctors prescribed it relunctantly and have been on it since. Hope all this helps. Jo xx
Parathyroid issues?
I have my bloods test done by Blue Horizon Thyroid No 11 is a very good test post the results with the ranges on here for answers. Stating what medication you take. Don't forget to take the test first thing on an empty stomach. Leave of Levo 24 hours prior to the test.
Why are you seeing a neurologist?
Why does the NHS waste so much money on the wrong things.
The GP referred me (at my cost not NHS!) as he felt the neuropathy was a neuro issue.
Pm Ed you
Sorry? Didn’t understand this Judith.
Oops predictive text changed it a bit. Private messaged you , in fact twice!
Hi Polly. Just my cynicism rearing its ugly head but when doctors make referrals on my (US) dime I sometimes wonder if they are golf buddies and owe each other referrals. Your symptoms are painful, I know, and hope you get to the bottom of the problem, find a solution, and feel better soon without a long trip around the mulberry bush. Take care. irina
Thank you Irina this did cross my mind but my desperation for symptom relief & diagnosis is enabling all this. But you are right that the neurologist does seem to want to check everything. X
Not true, neuropathy can be caused by low thyroid levels (it affects nerves health), never let a medic tell you nonsense or that you don't have something, you're the one responsible for your health, perform them privately if you can, also consider other diagnostics not everything out there is thyroid disease, and if you doubt vitamin D levels, you could start taking sun 15 minutes everyday (in case you're deficient).
May I ask, what are your symptoms, when they started, laboratory tests.
Wish you the best, David.
Thank you David. I’ve described my symptoms in reply to DaisyBelle just now. The lab tests showed no deficiency except my TSH was high 3.94 & FT3 3.9 pmol/L which is on low side. I’ve been on 75mcg for 20 months. Before that I was on 125mcg. Dose was reduced in 2016 due to heart symptoms like palpitations & ectopic beats & fast heart rate.
Hope you are well
David apologies I think I pressed send instead of reply ? Can you see my reply? Thanks.
Is there a link with hypothyroidism and sensory peripheral neuropathy?
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Hypothyroid - Could it have been caused by Necrosis after neck lift ?
