tingling in both arms

[Annchin]

feeling awful, tingling down both arms and fingers all the time and worst at nighttime, I’m on 100mg thyroxine.

17 April 2023

Serum TSH level

• Serum TSH level: 9.16 mlU/L (normal range: 0.27 - 4.2) these are my TSH levels taken on 17 th April

[Jaydee1507 Administrator]

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey. Click on your image icon to start.

I'm really not surprised you ave symptoms with a TSH of over 9, you must feel terrible. How long have you been diagnosed and treated?

How long have you been on 100mcgs Levo?

When you take Levothyroxine it needs to be on an empty stomach an hour away from food or caffeine containing drinks. Many people find taking it at bedtime works for them.

Are you on any other medication?

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone. Taking Levo just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

[FancyPants54]

Your TSH is way too high. You need a dose increase in Levothyroxine. Book an appointment with your GP and insist on 25mcg increase and retest in 2 months.

[humanbean]

Regarding the tingling, if it isn't low thyroid hormones causing your tingling there are other possibilities.

Low or deficient Vitamin B12

b12deficiency.info/signs-an...

Low or deficient folate (because the body needs folate to metabolise B12)

b12deficiency.info/folate-b...

Some of the other B vitamins can cause peripheral neuropathy / tingling too.

en.wikipedia.org/wiki/B_vit...

Note that Vitamin B6 is toxic at high levels as well as at low levels, and can cause peripheral neuropathy in both cases.

This link might be helpful too :

healthline.com/health/tingl...

[tcpace]

Just thought I would mention the following as increasing T4 may not be the answer. My wife had that tingling experience after going up to 100 T4 (weirdly I could feel it when touching her, it was like touching an electrically live surface!). At that point, we consulted the well-known Dr P who said she was thyrotoxic and that, rather than increasing T4, she should drop down to 75T4 and add 25T3, which improved matters. However, as time went on, she seemed to become less and less tolerant of T4. Nowadays she's on T3 only - 60-75T3 (depending on the demands of the day ahead).

[jamesal0 in reply to tcpace]

I was the same. I was put up to 125mcg from 100. And started getting tingles - feet , hands and scalp. I then became completely intolerant to Levo even though I had a TSH of 5-6. Tried a few synthetic t3 things and then tried NDT. Haven't looked back once I learnt to self medicate, tingles means back off, take a day off NDT or Levo etc. I have slowly (years) been able to increase and now up to 2 grains NDT (200mcg Levo)

[Hookie01]

Could be low b12 or Ferritin. I have increased both of mine and it is so much better now.

[mistydog]

Although it's entirely possible it could be B12 or ferritin, you need to get the TSH/T4/T3 issue addressed as it is clear from the results that you are way undermedicated. This was my main symptom when I was first diagnosed.

[CapnM in reply to mistydog]

i dont see how you can make that claim and I think its wrong to make it, she hasnt given enough details and you are not (I assume) a doctor. you do not know when she was diagnosed, how long she has been on hormone replacement, what else she may be taking etc.

[mistydog in reply to CapnM]

I know tha a TSH of over 9 is way too high.

[tattybogle in reply to CapnM]

See other replies , diagnosed 1999.

TSH of 9 definitely needed addressing , most likely cause of TSH 9 on levo is undermediction, which is very likely to be the cause of symptoms such as this , and in fact GP has just increased Levo dose by 25mcg... presumably due to this very high TSH.

So GP clearly agree's re. undermedication

[silverbelle51]

How is your vitamin B 12 ? Really, really important, seriously!

[Annchin]

thank you all for your feedback, my doctor has increased 25mg to start and more regular blood tests, I’ve had under active thyroid since 1999 and I should have guessed something was not right, hair was breaking, brain fog, puffy eyes, the worst is the tingling in both arms all the time, you tend to think it’s your age, hopefully I will start to feel better soon, it’s so good to share symptoms with you all, thanks again x

[caledoniancat]

Several years ago I was diagnosed as hypothyroid after I went to GP with carpal tunnel syndrome, "Symptoms of carpal tunnel syndrome may include: Numbness, tingling, burning, and pain — primarily in the thumb and index, middle, and ring fingers. This often wakes people up at night". It resolved when I started taking levothyroxine, but when carpal tunnel syndrome does return it has turned out to be an indicator of needing an increase in levo.

[Ioniccrows]

Do you have parathyroid problems? Because tingling is associated with hypoparathyroidism