Tingling fingers and treating underfunction

[nikinberlin]

Hi,

I'm new to the forum and the diagnosis and am struggling to make sense of my treatment. Im a 30 year old man, was diagnosed with an underactive thyroid last year with a TSH of 6, after years of symptoms that went undiagnosed - tiredness, loss of libido, low mood, dry skin. Got so bad last year that I finally go it checked out. Six months into treatment hit a 3 month patch of feeling great on 88mg, TSH went down to 1.4. Suddenly had the energy to do everything I wanted to do. Recently been feeling rubbish again, still on the same dosage - TSH back to 2.9. Have now had my prescription upped to 100mg, yet to see how much of a difference that makes. Have been getting a new symptom - intermittent numbness in the my legs and fingers and tingling recently.

What is your experience with this - does it go away when the TSH is brought down?

And how stable is your dosage? Is it normal for the TSH to more than double with the same prescription of levo?

Would really appreciate your pointers and experiences!

Nick

[Jose651]

Hi nikinberlin,

You are welcome to this great forum,

Have you had your Vitamin B12 levels checked?

J

[nikinberlin in reply to Jose651]

Thank you! B 12 was checked as part of a bigger blood test when my TSH was good at 1.4. Back then it was normal 281 pg per ml, ref range 191 - 663. That was three months ago - could it have changed that fast too? Would that explain the tingling?

[bluebug in reply to nikinberlin]

Your B12 is too low you need to supplement.

[Jose651 in reply to nikinberlin]

That's very possible n,

Lots of people, myself included, have both Thyroid Disease and B12 deficiency/PA (Pernicious Anemia)

281 is Low. Pop over to the PAS forum within HU and do a bit of reading up on the subject.

Please get tested again to see if your levels have dropped any further. Also ask to get Folate, Ferritin and Vit D tested.

J

😊

[Jose651 in reply to nikinberlin]

Hi n,

Sorry I couldn't reply to you earlier, I could not get a connection from HU for approx a day.

Even so, I was able to see that you have received plenty of replies, although I was unable to read them fully😔

Have you had a chance to join PAS yet. It will give you a good amount of sound info.

Keep well and as you know by now tingling/ numbness is most definitely a sign of B12 def.

j

[nikinberlin in reply to Jose651]

Thanks for getting back to me again Jose! Have tried to make sense of the PAS forum, but still a bit bewildering. What would the test for pernicious anemia be? Is it the same thing as the test to distinguish between the active and inactive b12 available to the body?

[Jose651 in reply to nikinberlin]

No bother n,

It is a bit complicated as you say. You did the right thing by looking at the PAS forum.

I was like you, I couldn't understand all the different tests that I felt was needed to establish why my reading for Vit B12 was 120.

The endo discovered this and I joined Pas, and through reading different posts and replies I went forward to request an Intrinsic Factor test.

It's a simple blood test that is notoriously unreliable.

My brother was diagnosed with Pernicious Anemia only a few weeks ago, even though he has been getting B12 injections every 3 months for several years.

His HG had fallen to 9 and they did a endoscopy to investigate if he had bleeding ulcers or maybe worse.

Thankfully all was good and they diagnosed PA.

The thing is, although he has been getting B12 injections for several years, due to a low reading of serum B12, his GP, if she is following the guidelines correctly should not stop these injection.

3 months is much too long to replenish his B12 level, so I gave him an INjection whenever he knows he needs it.

The treatment For Vit B12 def and Pernicious Anemia is exactly the same.

Active B12 and B12 serum are different.

Do you feel you want to be tested for the amount of B12 in you cells ?

For myself, it really is not majorly important, because I now know how to rectify the awful problem associated with being deficient in B12 .

I SI both Methylcobalamin and Hydroxocobalamin and take a Adensoylcobalimin sublingual once or twice a week,

Keep plodding along n,

You will get there quicker than you think. I was diagnosed this time last year with B12 of 120 and I'm improving every day.

I believe the test for PA is an Endoscopy,

I could be wrong there, but it is not the same as the b12 serum test or the B12 active test.

Read the replies of fbirder and gambit to give you a better understanding of the complexities of B12.

J 🍀

[bluebug]

You need vitamin B12, folate, ferritin and vitamin D checked.

Go to your GP and request tests for these. Explain to your GP that you have been told deficiencies or low levels in these will give you your symptoms of numbness and tingling, dry skin etc.

Then get a print our of the test results with ranges and start a new post with them so posters can advise.

[nikinberlin in reply to bluebug]

Really appreciate your reply. Two questions.

Are these vitamins and ferritin important generally to make my thyroid treatment more successful or specifically to help prevent tingling sensation?

What Vitamin B12 level should I be aiming for?

The only extended bloods I have are from March, when I was feeling great with a TSH at 1.4. Back then Vit B 12 280 pg per ml (ref range 190-663), Vit D 51 (ref range 50-150). Folate and ferritin were not tested.

[bluebug in reply to nikinberlin]

Yes.

The reason to post all your results is thyroid UK recognises that higher levels are needed for optimal health unlike most doctors.

Get a brand like Jarrow or Solgar methlycobalamin from Amazon and take 1,000mcg per day.

Be aware you may have to take B12 supplements for the rest of your life.

[greygoose in reply to bluebug]

I think 5000 mcg would be more appropriate, given how low his B12 is.

[bluebug in reply to greygoose]

Taking more of a water soluble vitamin doesn't increase the amount that is absorbed by the cells that use it. It will either stay in the blood or be excreted.

A few posters with low serum levels of B12 have also posted their active level of B12 and that's been high up in that range.

Incidentally my own level was 264 (reference range 160-900) when I began supplementing and in 6 months serum level was 25% over the reference range. I was only taking a max of 500mcg per day orally.

[Marz in reply to bluebug]

Yes that may be so - but once you are supplementing the tests are worthless. This is stated in the Guidelines for Folate and B12 Deficiency - a paper your GP should have read.

[greygoose in reply to bluebug]

I have never had an active test, only the serum test, which was 350, about. But, I was losing the use of my right arm, and I had absolutely no feeling in my feet, burning skin on my legs.

I started out on 5000 mcg and, little by little, I regained the use of my arm - it is now normal - and the feeling is slowly coming back into my feet - it's just the toes, now, that are numb. I don't think I would have got anywhere with just 500 mcg.

Do you know of any reason not to take 5000? If not, I think that's what he should try. We're all different and he might need a high dose, like me. It would be a pity if he didn't take enough, wouldn't it?

[bluebug in reply to greygoose]

Injections or nasal ingestion are absorbed far better.

That way he minimises taking loads that may end up down the toilet.

As he's in Germany not the UK he may get a doctor who isn't rigid in what they can prescribe and their beliefsso can get injections.

[greygoose in reply to bluebug]

Let's hope so.

[SeasideSusie Remembering in reply to nikinberlin]

nikinberlin You should aim for a B12 level of 1000. Supplement with Solgar or Jarrows sublingual methylcobalamin lozenges. When taking B12 you should also take a B Complex, Thorne Basic B is a good one, it will keep B Vits balanced.

Your Vit D is also too low, aim for about 100. Supplement with D3 cholecalciferol and when taking Vit D you need to take K2. Vit D aids the absorption of calcium and K2 directs the calcium to bones and teeth rather than arteries and soft tissues. You can get a combined D3/K2 or separate supplements.

Ferritin needs to be at least 70 for thyroid hormone to do it's job properly and all Vits and mins need to be at optimal levels.

Have you had TPO and TG antibodies checked. If either are raised then it confirms Hashimoto's (autoimmune thyroiditis) and that could explain why your results and symptoms are fluctuating. You can help reduce antibody attacks by going completely gluten free, some people also need to be dairy free.

[nikinberlin in reply to SeasideSusie]

Thank you for the advice, really appreciate it! Doctors appointments are so quick that you never really get a chance to ask all the questions you want to.

I had TPO ( 12,20 ref 0-34)) and TRAK (0.30 ref 0-1.75)) measured - so would appear to be within the normal range. But as with my other results they were done in March when I was feeling good and at TSH 1.4. Ultrasound of my thyroid also showed no damage.

My doctor here in Germany says given how strongly I feel relatively small jumps in my TSH, she assumes that there is an auto-immune reaction going on, just that its one not picked up by standard tests. Does that make any sense?

Really, really frustrating - those few weeks with my tsh in the normal range I felt my age for the first time in years. Had so much energy and was so full of optimism, want to get back there soon!

[Heloise in reply to nikinberlin]

Hi niki, yes to the question of changing your dose. There is a feedback loop so your body can keep you going when things fail and they all need to be corrected to work together again. In the meantime your need for Synthroid or Levo may change.

What does the TRAK represent? Here is another antibody.

youtube.com/watch?v=IIX2Z_i...(Not working as expected?)

youtube.com/watch?v=Z5SaM0R...(Not working as expected?)

If you are on Levo, you need the cofactors like ferritin and folate so it will convert to free T3, the energy part of your hormone. stopthethyroidmadness.com/l...

[greygoose in reply to nikinberlin]

Yes, that's perfectly possible. Some people do have autoimmune problems but their antibodies are never over range. However, a scan might pick it up.

Have you tried going gluten-free? That often helps with autoimmune thyroiditis - Hashi's, as we call it. Also, perhaps, dairy-free and/or sugar-free.

Do you take selenium? That helps with autoimmune attacks, and with conversion of T4 to T3.

It is perfectly normal to feel well on a dose for a while, and then find the symptoms come back again. All that means is that you need an increase in dose.

[nikinberlin in reply to greygoose]

Thanks for your reply! What kind of scan do you mean? Have already had an ultrasound of the thyroid which didnt show anything up.

In terms of going gluten-free I already dont eat bread, pasta very rarely. Might try going off it totally.

In terms of doses, I think at the beginning when I got 88mg it was too much - had heart palpitations and was more anxious than normal. Then had a phase of being just spot on in terms of energy levels and am now tired again all the time. All with the same dose.

How often do you get your bloods checked? 8 weeks?

[Marz in reply to nikinberlin]

When you increase your dose it is important to have the basics in place - GOOD LEVELS of Iron - Ferritin - Folate - B12 - VitD .....

These optimal levels are required for your thyroid hormones to work efficiently - otherwise it's like building a house without strong foundations

[nikinberlin in reply to Marz]

Thanks, will definitely get it checked! Do you think I should specifically ask for the test that distinguishes between active and inactive b12? Outlined here on the nhs choice site - nhs.uk/Conditions/Anaemia-v...

[Marz in reply to nikinberlin]

Having spent a great deal of time on the Pernicious Anaemia Society forum - here on HU - I get the impression that both tests are a guideline. Why not pop over to the PAS forum and ask the question there. Lots of VERY helpful people there who will respond ....

[greygoose in reply to nikinberlin]

Yes, I mean an ultra sound. So, you've had that and it showed nothing - but, as we always say, you can't prove a negative. It could be that there hasn't been enough damage yet to show up. So, try the gluten-free anyway, just to rule it out.

I assume your taking NDT, which is normally referred to in grains. I find mg very confusing. lol For me, 1 1/2 grains is 90 mcg, so I don't know where you get 88 from. But, it seems to me that you just need an increase in dose.

Did you start out at 88 mg? That's a very high dose to start on. 1/2 a grain would have been better, increasing every two weeks to 2 grains and then holding there for 6 weeks - it's normally 6 weeks - and then getting tested. After that, increasing by 1/4 grain until you hit your sweet spot.

[nikinberlin in reply to greygoose]

I take levothyroxine, started on 50mg and have now worked my way up to 88mg.

[greygoose in reply to nikinberlin]

Ah, ok! So you mean you started on 50 mcg, and worked your way up to 88 mcg - not mg. But that's still very odd dosing. In creases are usually 25 mcg at a time. I dont understand how you managed to get to 88...

Anyway, that's a very low dose. You really need an increase in dose.

Pernicious anemia is an autoimmune disease, so you need the antibodies tested - the name escapes me for the moment, but your doctor should know. It's not the same as the tests for serum and active B12. If you have PA, you will need B12 injections.

[LtAngua52]

Hi nikinberlin,

As others have said your b12 is very low and that leads to neurological symptoms such as tingling and numbness amongst other things. Many of us with hypothyroidism have low or no stomach acid leading to poor absorption of nutrients such as b12 and folate, ferritin etc.

B12 deficiency is serious and the sooner you treat it the better. I started taking Jarrow's sublingual b12 lozenges which dissolve under the tongue at 5000 mcg. I ended up taking 10 a day but it made a great difference. However, cost of taking that many and needing it to be even more effective I started to self inject. The lozenges I bought on Amazon. You can also buy it in spray form too. Just keep away from normal b12 tablets as you won't absorb them if you do have an absorption problem.

Your folate needs to be optimal too for b12 to be absorbed properly. I was deficient in b12 for at least 15, possibly 20 years before treatment so some of my neurological symptoms are now permanent. So don't waste any time. Your doctor won't recognise this deficiency so you will have to.

Read up on b12 deficiency on b12d.org and b12awareness.org for more information.

Good luck.

[ChristinaT]

Have you been tested for Pernicious Anemia? If you haven't I would ask for this to be checked out because if you do have it your not going to benefit much or at all from oral B12. It would be B12 injections you need. Obviously if you don't have this then I agree with what everyone has suggested, by supplementing with B12, folate and Vit D. Or at least ask for your levels of those to be checked out first. A B complex vitamin would also be a good idea once you have managed to increase your B12 levels and ensured your folate levels are okay.

[nikinberlin in reply to ChristinaT]

Hi Christina,

thanks for your response. Just to get this straight - if I had pernicious anemia my body wouldnt be able to absorb the b12 tablets? Does that mean I should try to get the test for my *active* B12 levels, rather than just the serum B12 levels. That was something the NHS Choices website talks about - having enough b12, but the body not being able to use it properly.

Am new to this and getting a bit confused!

Thanks again,

Nick

[Nanny23 in reply to nikinberlin]

Check out Marz post today about could it be vitamin b 12. Amazing post.

[ChristinaT]

Also if your folate is low also you must ensure your B12 levels are corrected/increased first before supplementing with folate/folic acid.

[K1k1_belle]

Hi nikinberlin 👋🏻 Just wondering did your Doctor mention what Autoimmune disorder she suspected?

[ChristinaT]

Hi there again 😊, if you had Pernicious Anemia then you wouldn't be able to absorb B12 via oral route because you would lack or have fault with something called Intrinsic Factor in the stomach/small intestine, this is required for B12 absorption. You could try sublingual B12 but many PA sufferers struggle with this method as the injections are the most effective. Best way is Prob to be tested for PA first to confirm or rule this out. Judging by your levels you could do with supplementing with high doses in the first instance. Usually PA wouldn't be investigated unless/until you levels dropped further to in the defiviency state according to whatever the B12 range is used by the lab. It's usually anything under 200-300. So if your gp hadn't stated your levels are deficient currently your not far off any all. You can be b12 deficient without having PA and that may very well be the case for you, but you certainly are displaying symptoms which reflect this.

[ChristinaT]

Also The reason I mentioned eventually supplementing with a B complex vitamin aswell is because some of the other B vitamins are really important for thyroid function. B1 is one of them. If there are issues with B12 and folate then there's a chance B6 could be low also. Supplementing with one or two of the B vitamins can cause the others to go out of whack......but it is essential B12 is corrected first and foremost. Doctors don't generally check the others but they are of significant importance. Also vitamin A is very important too. Again this is not usually investigated but deficiencies in these can prevent weight loss and in hypothyroid patients, not to mention fatigue etc. Again selenium and sinc play important roles too.

[nikinberlin in reply to ChristinaT]

Great, thanks a lot! Selenium was the one thing I seemed to be ok on)

[Livy1]

Hi Nick I too get tingling in hands and feet. You will find you need to speak with your GP if you feel too odd, you might need another blood test to check you are still on the correct dose of Thyroxine, getting the balance right is tricky as we are all different! I thought I was on the correct level of Thyroxine, I started to feel totally exhausted, went back to my GP and my levels were totally put of control! I had assumed that if you had an under active thyroid you only needed one blood test a year as long as you kept up with your Thyroxine everyday, how wrong I was! Also if you take an antacid regularly, you need to take your Thyroxine first, then take your antacid an hour later but confirm this with your GP or Pharmacist. When I was first diagnosed with my under active Thyroid this was not pointed out straight away!

Very good luck with your under active Thyroid management, Livy1