Please help! My GP can't figure it out; pins and needles in hands and feet!

[Poppy56]

Just got off the phone with my GP who's seemed less informed than me on every occasion I've seen him. I started with pins and needles in hands and feet 8 weeks ago, its really mild but worse after alcohol or exercise. I get a heavy feeling in my arms if i'm using them. I can work through it and keep going. I've also had funny feelings in my tongue and some tingling in my throat. I take 100mg of actavis levothyroxine a day. My blood test is always first thing in the morning.

My lab results came back as;

Magnesium; 0.89

folate: 8

vit D; 99

vit B12 334

TSH 0.6

When I was first diagnosed 2 years ago my TSH was 20. No one has yet to explain to me why I have an underactive thyroid, I just don't feel like I am getting any answers.

I don't know what to ask for, my GP has just said to me what do I want to do be referred to Neuro or Endo?

I've picked Endo for now but I'm scared its something else, I'm so fed up, I was full of energy before christmas even going to the gym before work some days, now I can't even think about exercise. Also if there are any really good endo's in manchester/cheshire please let me know although I will travel to london if I have to.

Thank you for any help you can give me

[lynmynott Partner Thyroid UK]

Hi Poppy56,

I am wondering if you are suffering from low B12 (for you) The B12 range is very wide and your level looks like it's at the bottom of the range. Many people have symptoms at this level. Find out your ranges and see where you are in the range. It might be an idea to do an active B12 test too - thyroiduk.org.uk/tuk/testin...

A lot of people use a supplement called Readisorb B12 and find it helpful. Lyn

[Hidden]

According to the new guidelines, where there is a suspicion of B12 deficiency but serum B12 is "normal", they should treat you with B12 injections as per the BNF section 9.1.2 having first drawn blood to do second line tests - IF antibodies, MMA, homocysteine, active B12 (see algorithm 1 in the link below). Treatment should not be delayed to avoid permanent neurological deficit.

bcshguidelines.com/document...

Paraesthesia on its own is enough of a suspicion, you do not have to have anaemia or macrocytosis. I'll quote from the guidelines:

"the majority of patients do not have such a clear cut picture. Neurological presentation (peripheral neuropathy, sub-acute combined degeneration of the cord) may occur in the absence of haematological changes, and early treatment is essential to avoid permanent neurological disability. "

"patients with strong clinical features of cobalamin deficiency may have serum cobalamin levels which lie within the reference range (false normal cobalamin level)."

"other tests may be used to try and determine an underlying functional or biochemical deficiency [reviewed in (Quadros 2010) and (Fedosov 2012)]. These tests, plasma homocysteine, plasma methylmalonic acid, and serum holotranscobalamin may help but are not widely available currently and the cut-off points to indicate deficiency vary between different laboratories (Carmel 2011, Heil, et al 2012) . In addition, their role is not clearly defined in the routine diagnostic setting. Therefore, there is currently no ‘gold standard’ test for the diagnosis of cobalamin deficiency"

If you supplement with sublinguals at this stage, you will skew the results of any second line testing that needs to be done.

There is a symptom list on this website as well as lots of other information (although I think the website is down at the moment, hopefully will be back up and working later on):

b12deficiency.info/

[nobodysdriving in reply to Hidden]

I wholeheartedly agree all the above

[Poppy56]

Thank you for your advice, I feel a little calmer now. I'm going to book a private app't with the Endo also in the hope she will back me up with the B12.

Its amazing how completely lacking in any knowledge regarding underactive thyroid my GP was. He hadn't a clue! I work as a Physiotherapist and if I was so lacking in knowledge of something I am supposed to treat I'd have been reported for working outside my scope of practice and potentially struck off!!

[shaws in reply to Poppy56]

You will have to do some research first for a good endocrinologist. No point in paying for advice which may not be appropriate for you. It does come as a surprise that most GPs don't have knowledge of thyroid gland conditions. It is because of the way they are now trained - no knowledge whatsoeve of clinical symptoms and diagnose on the TSH alone plus the awful guidelines from the British Thyroid Association.

[Poppy56 in reply to shaws]

I'm seeing one this afternoon at bmi Alexandra in cheadle, (if they are any good ill let you know ive been informed by a friend that they had a good experience with them as they looked into other hormones too as she was hypo and it turned out had issues with oestrogen progesterone etc, otherwise it looks like a trip to london as theres none on the list in the north west)

I've finally got all my blood results from my own GP for last 2 years too, since I was diagnosed. Shocklingly (or not so) they have only ever reported on my T4 once! that was when i when diagnosed!

I've also read up a lot more from all the advice on here. I am ready for battle if it calls for it!

[Clutter]

Blood tests for Thyroid Peroxidase (TPoAb) and Thyroglobulin (TgAb) antibodies will tell you whether your hypothyroidism is caused by autoimmune thyroid disease (Hashimoto's) otherwise it can be due to familial or genetic causes often triggered by shock, trauma, injury, illness, leaky gut or even quitting smoking.

[donnajayne]

I had that. I just upped my thyroxine dose and it went away. Now I take NDT and feel much better.

[Poppy56]

Been to see endo; waste of time! Sees no reason for pins and needles, diagnosed anxiety!!! Even though I said I've been on holiday, I have no stresses apart from usual work stuff but I don't think about that at night. Also could see no reason why the pins and needles would be worse after alcohol. Useless!!! £260 for oh you're one of those neurotic types! Great.

Looks like I'll self treat b12 and see if symptoms of lethargy improve!