Pins and needles and numbness: Hi, I hope you... - Thyroid UK

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Pins and needles and numbness

bubbatetley profile image
20 Replies

Hi, I hope you are all hanging on in there!!!!

I have asked this question before, but didnt get much feedback, so here goes again.

I am having my 6 monthly Thyroid bloods repeated next week.

I have posted my most recent blood results on previous posts.

Please does anybody suffer with awful numbness and pins and needles in various parts

of their body, especially the head, also dreadful itching all over. I am currently taking

Levothyroxine 50mcg as recommended by my GP, I personally think I am under medicated

and need an increase, but the GP isn't agreeing with me, but after all shes not having all the horrendous symptoms.

Any advice greatly appreciated

Thank you to you all

Take care🌺🌺

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RedApple profile image
RedAppleAdministrator

bubbatetlyey, I have copied these thyroid test results from your previous post last September. Before we can comment, can you confirm that this is your most recent thyroid test?

Thyroid function test Monitoring

Serum TSH level 0.84 mU/L [0.35 - 5.5]

Serum free T4 level 13.6pmol/L [10.5 - 21.0]

FREE T3 MonitoringSerum free triiodothyronine level 3.4 pmol/L [3.5 - 6.5] Below low reference limit

bubbatetley profile image
bubbatetley in reply to RedApple

Hi RedApple, I hope you are well. Thank you for replying.

My recent Bloods are:

B12 363 .0 [211. 0 - 911. 0]

TSH 2. 73 [ 0.35 - 5 . 5]

T4 12 . 0 [ 10 .05 - 21 . 0 ]

Thank you and take care🌺

SlowDragon profile image
SlowDragonAdministrator

INSIST GP test vitamin D, folate, B12 and full iron panel test for anaemia including ferritin

Restless legs frequently low iron/ferritin

Pins and needles- low B12

Low vitamin levels tend to lower TSH

Essential to maintain OPTIMAL vitamin levels

What vitamin supplements are you currently taking?

ALWAYS test thyroid levels each morning and last dose levothyroxine 24 hours before test

Levothyroxine doesn’t top up failing thyroid, it replaces it.

50mcg levothyroxine is only a STARTER dose

Request/Insist on 25mcg dose increase in levothyroxine…..otherwise you will make an appointment with thyroid specialist endocrinologist

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here 

cks.nice.org.uk/topics/hypo...

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

bubbatetley profile image
bubbatetley in reply to SlowDragon

Hi SlowDragon, I hope you are well. Thank-you for replying with all the useful advice, which is greatly appreciated.

My GP has increased my Levo by 25mcg, shall I split the dose in half, as I don't want to flood the Thyroid please.

Thank you 🌺

bubbatetley profile image
bubbatetley in reply to bubbatetley

Sorry forgot to mention , I take Vitimin Pro D3 3 ,000 IU Daily and Cyanocabalamin 50mcg 3 Daily. That's all I take.

Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to bubbatetley

You could initially cut 25mcg in half and increase by 12.5mcg

After 3-4 weeks increase to full 75mcg daily

Retest after 6-8 weeks on full dose

Recommend you get folate, ferritin, B12 and vitamin D tested then

Test vitamin D twice year when supplementing

Meanwhile suggest changing to better quality B12 and add a separate vitamin B complex

Low B12 symptoms 

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week 

Highly effective B12 drops 

natureprovides.com/products...

Or

B12 sublingual lozenges 

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid 

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay 

Other options 

healthunlocked.com/thyroidu....

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

bubbatetley profile image
bubbatetley

Thank you so much 😘

Zoey92 profile image
Zoey92

Hey 👋 I wrote a similar post a few days ago about all my crazy symptoms but one of them being numbness / tingling/ weakness in my calf and forearm. So I know exactly how you’re feeling, it’s really frustrating that the GPs are not as educated as you would think. I hope the increase in meds he’ll with your situation. I am going to request a blood test on Monday to see where I am at x

bubbatetley profile image
bubbatetley in reply to Zoey92

Hi Zoey, Thank you for the reply. The pins and needles are awful, especially in my head.

GP gave me Gabapentin to try, but they have awful side effects and I wont take the risk hav plus they are very addictive. The primary care system is absolutely useless, and they always say ANXIETY!!!!!

Take care

Hugs

Bubba🌺

Maisal11 profile image
Maisal11

ask your gp to test your vitamin levels particularly vitamin b12 and folate, be worth asking for and iron panel and vitamin d to be tested too.. the symptoms you have are b12 deficiency symptoms

FW23 profile image
FW23

Hi I don't know if this is the same as your issues but I've had similar symptoms since I was diagnosed with hypothyroidism in Feb 2021. The tingling in my feet feel as if they're burning. In the winter my scalp lips,hands and feet tingle and burn at night. My feet during the day when I'm wearing g shoes. My GP surgery has been useless originally thinking it was a muscular skeletal issue mostly due to my bunion and anxiety. In the first year I thought it was random but I kept a diary and now I can see a yearly pattern. It's much worse in the winter and at night when my body temperature has to deal and react to huge variations. Once the warm weather arrives it's bearable. I have a neurology appointment on Monday (if it's not cancelled again) then I'm going to investigate a different avenue. I think its might be hormonal possibly due low T3 but my GP refuses to discuss this.

I really feel for you, it makes me very miserable and low when it's at it's worst.

Judyrabbit profile image
Judyrabbit in reply to FW23

I also have had the same problem with burning feet and now pins/needles in them since 2016. It’s awful. I’ve had nerve conduction tests and there is nothing wrong with my nerves too. The drs just say more or less I have to put up with it. I have lots of other symptoms too but they won’t say they are thyroid based. My results yo yo every time too high so they put it up to 125 then too low so put it down to 100. Tgey say endo won’t see me cos of TSH being corrected. I am having full blood and vitamin tests next time as I spoke to an understanding dr but he probably won’t be there next time but I’m having a hip replacement next week so I’m frightened that mucks everything up again. I know exactly how you feel !

bubbatetley profile image
bubbatetley in reply to FW23

Hi Judyrabbit, Like the name! Thank you for the reply, I'm at at a loss with all these awful pins and needles sensations. I take Vitimins B12 daily, and my symptoms are getting worse.

My primary care doc has given me Gabapentin, which I will not take as the side effects are horrendous. They never explain to you about the effects new meds can have on you, especially the interactions when you are taking Levothyroxine, also they are so quick on prescribing anti depressants!!!! DOH!!

Take care and have a good weekend

Hugs

Bubba😘

silverbelle51 profile image
silverbelle51

Won't address the Levo thing, but I will suggest perhaps you have a vitamin B 12 deficiency or maybe even a magnesium deficiency. I really wish doctors/practitioners would do vitamin and mineral profiles before writing scripts. A HUGE # of symptoms are DEFICIENCIES. I know I have been a victim of such practices

FW23 profile image
FW23

Oh sorry to hear that you've had it for such a long time. I also had a nerve conduction test which suggested a nerve compression in my back but that was found to be incorrect when an Xray was done. My osteopath also discounted it when he did the appropriate test.I suggested I'd have to go private when I last saw a GP and he agreed with me which is shocking. So that's my next step after the neurologist appointment. My pharmacist, who patiently listened to me, bless him, agreed that he thought it was an hormonal imbalance and suggested that Levothyroxine is a hormone and may have somthing to do with it.

I'll keep you informed, infact I will be back on this amazing site to get suggestions for private endocrinologist in London.

Good luck with the hip replacement, you never know a different doctor might shed some light on your other issues.

FancyPants54 profile image
FancyPants54

I've had tingling, burning, itching, throbbing and now stabbing pains in my feet and eventually lower legs, since November 2019. Have I been to the GP about it? Once, during lockdown when I could not sleep for the pain and discomfort (that paracetamol does nothing to ease). I saw a locum. He got me to lay on the couch, pushed my legs right up in the air and declared there was no problem. I've not been back. What's the point?

I took on board that this could be a B12 problem, so I have pushed my B12 levels to the top of the range with drops and oil and it's no different.

I switched from Levo + T3 to NDT in December. I have had a very rough time trying to increase dosage for a variety of reasons and I'm still under medicated. If anything the foot thing is now worse and at the start of this hot spell my feet and ankles turned into balloons and haven't yet gone down, apart from a bit of relief in bed.

I'm planning on keeping on with very small, slow increases in medication to see what I can achieve. I'm sure it's thyroid related.

FancyPants54 profile image
FancyPants54 in reply to FancyPants54

I forgot to say, I also have numb feet, especially toes. I can feel my heels and the ball of my foot on the ground, but they don't feel normal sensation. My feet hurt a lot at the contact points. I can't feel the floor with my toes. My feet also hurt on the tops a lot of the time. I can no longer wear heels or any kind of tight shoe. All I can currently get on are Crocs!. The numbness makes me worried about balance because I just can't tell where my feet are or if the ground is firm.

bubbatetley profile image
bubbatetley in reply to FancyPants54

Hi Fancypants, Thank you for the reply. It's a horrible feeling all this numbness but, my GP gave me Gabapentin which I will not take as the side effects are horrendous, and like you I struggle with new meds!

Have a good weekend

Kind regards

Bubba🌺

Poppycat999 profile image
Poppycat999

Hi l did get alot of pins and needles mainly on my hands. It's gone now very rare for me now. I finally have got my levothyroxine dose to suit 75/50 alternative days l decided to try this dose myself my TSH is 0.99 and l feel great this has took about 2 years to feel ok. Good luck getting the right dose. I have Almus brand l cut them for the 75 as Almus dont do it and I'm not changing brands. Was told l could have calpel tunnel but knew l didn't it's fine now do theres future hope for you I'm sure.

bubbatetley profile image
bubbatetley in reply to Poppycat999

Hi, Poppycat, Thank you for the reply. Dis you get pins and needles in the head.

My GP is useless and has given me Gabapentin, which I will not take as too many side effects. They give out tablets without telling you about the reactions you could have.

DOH!!!!

Have a good weekend

Hugs🌺

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