Is it possible to have JUST neurological sympto... - Thyroid UK

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Is it possible to have JUST neurological symptoms with low t3?

Alejandrita17 profile image
21 Replies

Hi people,

As I posted recently, my t3 is just around 20% through range (t3=2,5 on a 2-4,2 range). The strange thing is that I don't have energy problems (I feel totally ok with that), my weight is perfect and I eat a lot, I don't have brain fog, memory problems or mood swings at all. My MAIN symptoms are neurological and muscle-related (tingling in hands and fingers, sometimes legs, fasciculations, vibrations in feet and so on). They've come and go for a year and a half. I'm working on improving my ferritin (it's 14) but I don't think ferritin is causing the problems. My b12 is not brillant but it's ok.

Could t3 play a role in all this? As I said before, I don't have any of the "typical" symptoms.

Many thanks!

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21 Replies
SeasideSusie profile image
SeasideSusieRemembering

Alejandrita17

If you think you are OK with your T3 at that level then your past posts all seem to refer to your dire nutrient levels and it seems to have been discussed at length both here and on the PA forum.

My b12 is not brillant but it's ok.

B12: 252 (200-900)

You mentioned on the PA forum 3 months ago that you were going to supplement with 1000mcg B12, have you done this and if so have you retested to see if there is any improvement.

Your ferritin is also so dire that it's going to be causing problems.

As has been mentioned many times, it would seem that you need to optimise your nutrient levels.

Alejandrita17 profile image
Alejandrita17 in reply toSeasideSusie

Yes, I supplemented with b12 and it reached 930. Now, it is on 350 again. But both metil malonic acid (MMA) and homocisteine are perfect, so it is unlikely that b12 is causing the symptoms. I don't have intrinsic factors antibodies either. Vit D is good now, 50 on a 30-100 basis and folate is 17 on a 3-21 range.

I'm suspecting t3, but it is strange that I don't have any of the typical symptoms at all.

SeasideSusie profile image
SeasideSusieRemembering in reply toAlejandrita17

I supplemented with b12 and it reached 930. Now, it is on 350 again. ...

so it is unlikely that b12 is causing the symptoms.

Did you stop supplementing? If so and it has fallen then you're obviously not holding on to the B12. You should continue supplementing to maintain the level. I would discuss this again on the PA forum, they do have some different ideas from us here on the Thyroid forum but see what they say. Personally I think there's something not right if you managed to increase your level from 250 to 930 quite quickly and now it's back down to 350, all within 3 months.

And regardless of your Vit D and folate levels being good, your ferritin is still a major problem.

Alejandrita17 profile image
Alejandrita17 in reply toSeasideSusie

Maybe it reached 930 because I supplemented till the day before. Should I stop before I get blood tests?

SeasideSusie profile image
SeasideSusieRemembering in reply toAlejandrita17

If you want to know how much you hold on to then you stop for 4-5 months before testing. If you want to know what your dose of supplement is achieving and whether you need to continue with that dose or adjust it then you continue taking the supplement.

So am I right in thinking that you reached 930 then stopped supplementing rather than adjusting your dose to maintain that level?

Alejandrita17 profile image
Alejandrita17 in reply toSeasideSusie

Yes. But the thing is, my brothers all have a b12 around 400 and they don't suffer any symptoms at all. I'm not sure if "the higher, the better". My GP, hematologist and neurologyst told me: if MMA and homocisteine are both ok, it means your body is OK with those levels. MMA is the definite test for b12 deficiency. Are they all wrong?

SeasideSusie profile image
SeasideSusieRemembering in reply toAlejandrita17

Yes. But the thing is, my brothers all have a b12 around 400 and they don't suffer any symptoms at all.

Sorry, but what does that matter, we're talking about you and trying to find out what's causing your problem. Some people with a B12 in the 300s have been found to need B12 injections.

I'm not sure if "the higher, the better".

Neither am I but you have to find out what is right for you. And if neurological problems can be caused by levels less than 550pg/ml then it makes sense to aim for at least that level.

MMA is the definite test for b12 deficiency. Are they all wrong?

Go and ask over on the PA forum. They will tell you that you can get false negatives.

You acknowledge the information in Polaris' post below, are you now dismissing that?

But as I said before, regardless of your other nutrients your ferritin is a major problem.

helvella profile image
helvellaAdministrator

We can look around the internet and see symptom lists for thyroid disorders which have from a handful to several hundred symptoms.

Imagine you are someone who, wholly separately to thyroid disorder, produces a lot, an excess, of stomach acid. You become hypothyroid, you are then unable to produce as much stomach acid, so issues of excess stomach acid disappear.

However, if you are someone who barely produces enough stomach acid even before hypothyroidism, then inadequate stomach acid worsens if you become hypothyroid.

But quite a few people will be in the middle ground. They might not produce s much stomach acid, but it is just about enough. Such people might not report symptoms related to stomach acid at all.

That is, we as individuals will tend to suffer some symptoms, but not others. Three different possible outcomes from just one factor when hypothyroid. And which ones depend on everything that makes us who we are - genes, medical history, etc. You might find that neurological and muscle issues are the most significant.

But I would definitely be looking at getting B12 up from "not brilliant". And folate needs to be tested and treated as appropriate. Both need to be right.

Your ferritin is very poor. And that could be your most important issue.

Alejandrita17 profile image
Alejandrita17 in reply tohelvella

Thanks!!! :-)

DippyDame profile image
DippyDame

Your FT3 is low but it is still within the ref range and without " typical" symptoms.

So, maybe, just maybe, this T3 level is currently working for you....unless it starts to drop further.

Your low ferritin and Vit B12 levels are more likely to be the problem....and if they are corrected your T3 levels may rise.

Perhaps it's a case of "getting all your ducks sorted out into a row" starting with improving those nutrients....and being checked for PA.

Low levels of ferritin can lead to iron-deficiency anemia. This means you have too few red blood cells. Iron deficiency can come from a poor diet or blood loss. Or your body may have trouble absorbing iron from food.

urmc.rochester.edu/encyclop...

Iron deficiency is not rare in patients with pernicious anemia. It could be a complication of achlorhydria. We suggest a dosage of serum ferritin for all patient with pernicious anemia. Studies should be conducted on the prevalence of vitamin B12 deficiency in any patient with iron deficiency.

ejinme.com/article/S0953-62...

Alejandrita17 profile image
Alejandrita17 in reply toDippyDame

They ruled out PA. All my numbers are correct, except for low normal T3 and ferritin (i'm working on it, but I really doubt it IS the problem). No hidden blood on stools, no antibodies for Celiac Disease, no antibodies for Thyroid, and no antibodies for intrinsic factor. All my issues started after My Thyroid was attacked by the mumps virus in 2017 and could never recover (I even reached a TSH of 20, two months before My tsh was 2,7 without any médication at all, the same level it had when I was 20 years old and now I'm 44).

Anyways, I'm a puzzle ha.

Thanks a Lot !!

Polaris profile image
Polaris

Below is BMJ research document (summary only), which confirms that, although MMA is the best test, there is really NO reliable test and it is symptoms that are important, especially when they are neurological. UKNEQAS guidelines point out that neurological symptoms should be treated with injections every other day until no further improvement to prevent further damage.

GP should also take into account that research shows 40% of those with thyroid disease go on to develop PA and vice versa. Three in our family have both and two have had gene testing, showing inability to absorb B12.

bmj.com/content/349/bmj.g5226

Note: It is difficult to prove B12 absorption if you have already been supplementing as this will skew the results.

Tracy Witty's B12 website has further research papers and advice.

Best wishes finding answers Alendranjita17.

Alejandrita17 profile image
Alejandrita17 in reply toPolaris

Thanks a Lot for the info!

shaws profile image
shawsAdministrator

If you have not had a test for pernicious anaemia, I would ask doctor to do so.

The fact is that if we have P.A. we need to have regular injections of B12. This is due to our stomach changing in that it cannot absorb B12 from food.

My mother developed stomach cancer due to her GP telling her she needed no more B12 injections as her blood tests were o.k. Both my sister and myself thought that was 'good' and little did we know of the horror and desperation which was to envelop the family due to the doctor's wrong advice.

Alejandrita17 profile image
Alejandrita17 in reply toshaws

I tested negative for intrinsic factor antibodies, and my hemogram is fine. MMA and homocisteine both ok. Is there another test I can ask for? Hematologist said PA is completely ruled out.

tattybogle profile image
tattybogle in reply toAlejandrita17

Is there another test ?

best test for most things is "try it carefully and observe if you feel better "

ClareP5 profile image
ClareP5

Hello, tingling could definitely be B12 deficiency, but it could be other things too. Your b12 results when supplementing are measuring your supplements. MMA and homocysteine tests are better than B12 serum only. However as you’ve probably discovered with thyroid some of us don’t fit the model answer. I self inject B12 EOD and have done for 18 months and am unable to reduce frequency. You can’t overdose on B12, your body chucks out what it doesn’t use. My B12 serum is probably over 2000 - I go by my mental and physical symptoms only. The PA site is brilliant 🤩

janeroar profile image
janeroar

I get tingling with magnesium deficiency. I have to take a magnesium supplement with a range of different types of magnesium in it. If I don’t I get the tingling and cramps too within a week or two. It’s one of the supplements I have to have all the time. Not sure if others here have the same need for magnesium and whether it comes with Hashimotos territory.

JAmanda profile image
JAmanda

When I got my T3 over 6 my folate, b12, albumen and magnesium levels, which were always low, seemed to get better. That said even with good T3 my neurological symptoms still come back if I exert myself in any way.

stella7 profile image
stella7

Hi Alejandrita17,

I also have the symptoms you describe. They have been happening for a very long time and in the last two decades have become worse.

I would say, keep a record of these symptoms to discuss with your GP. There are a number of things that can be the cause.

Do your symptoms worsen when when you are stressed, have an infection, get overheated/ cold or tired? Does this happen quickly and ease of once things settle back? These things happen with me. I had a hypothyroid, diagnosed 2008.

But I still felt rotten and had these strange sensations.

I was diagnosed with multiple sclerosis in 2019. I lived with symptoms coming and going for years. Misdiagnosed in 2002 as a stroke.

I have relapsing & remitting MS. All blood tests "within normal range" for thyroid. (MRIs and lumbar puncture confirmed the MS)

My GP said "it's all in your head." It's psychosomatic because you are stressed. Yes, it is my head, and in my spinal cord, but not in the way he was putting it!

These symptoms in the limbs/ extremities can be seen in a number neurological conditions and diabetes neuropathy. It would be good idea to get them investigated, to give you some answers. For me, not knowing the cause was incredibly stressful.

Best of luck on your path to wellness.

Alejandrita17 profile image
Alejandrita17 in reply tostella7

Hi!! Thanks for your answer. MRIs are all clear so my neurologyst fortunately ruled out MS. My case is rather particular, since I don't have antibodies at all (as opposed to 99% of this forum). I don't have autoinmune issues. My Thyroid was destroyed due to the mumps virus and could never recover from that attack (it is called De Quervain Thyroiditis). The mistery od My symptoms remain....

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