Test opinion please

[activelazy]

I had an overactive thyroid from mid November2015 to end of Jan 2016 due to an inflammation to my thyroid gland. My tsh was extremely low during this period. Something like 0.02. Eventually the inflammation subsided with the help of anti inflammatory ibuprofen really.

At that time my antibodies were negative.

Near the end of January, all tests were done again and my tsh was still low with t3 t4 and antibodies being fine. On both occasions antibodies were more near the lower range. E.g. one of them was around 23 when it should be less than 115.

In march started to have neuropathic pains. I was tested for b12 and it was 138. I was given loading dose of 6 injections. I was already on vit D since November 2015.

Pains were improving slowly, I think. In may I got tested again and my tsh t3 and t4 all were in good range and I was feeling quite good. Had good energy and only occasional pains. Tsh was around 1.5.

I had a good month but then by the end of 3rd week of June a sudden weakness gripped my arms, as if there is less signal in them. Even my hands grip became poor, not that I am dropping things but I could feel the difference. My arms are still getting tired quickly e.g. if I have to go through the hangers in my wardrobe I would struggle after half a minute. It's not trembling badly or anything. After a few days my legs felt weak as well. It's an effort to get off the toilet. My muscle power is quite less and I can't work at my usual speed and strength. Muscles are easily aching as well. My occasional neuropathic pains are still there but luckily not continuous.

My latest (beginning of July) test results show:

Tsh 4.2 (0.3- 4.5)

T3 5.3 (3.10- 6.80)

T4 17.4 (11- 22)

B12 and D are fine. Loads of other things are fine like Fbc, ferritin, folate, ck, kidney function, potassium, etc etc.

My doc has referred me to a neurologist but God only knows when will that come?😢.

I have been asking for a referral since March. When the referral comes I don't even know if the specialist will take any interest in scanning my brain / spine. I doubt.

Please give opinion

Thank you

[greygoose]

Well, your TSH is far too high. I think you need thyroid hormone replacement, rather than an neurologist.

When you say your B12, D etc are 'fine', what exactly do you mean? Because it sounds to me as if your B12 is still rather low. Do you have the actual numbers? In range is not the same as optimal, and optimal for B12 is 1000. Is yours 1000?

[activelazy in reply to greygoose]

Hi thanks for your reply.

My b12 was 917 in May.

[greygoose in reply to activelazy]

OK, that's good. What about the others?

[activelazy in reply to greygoose]

Vit D 85 in July. Coeliac negative

[greygoose in reply to activelazy]

Vit D is good. How about ferritin?

[activelazy in reply to greygoose]

Sorry, forgot to mention that I had another injection in June which must have boosted my b12 further a bit. They say I need one every 3 months even though my intrinsic factor antibodies are negative. I am thinking there is no harm in having one every few months. Not sure if I m right.

[greygoose in reply to activelazy]

No, no harm at all. I do believe that the intrinsic factor test is unreliable, so even though that was negative, you could still have Pernicious Anemia.

Are you taking a B complex? It's really best to do so, because the Bs all work together, and need to be kept balanced. Take one every day in between your injections.

[activelazy in reply to greygoose]

Hi thanks Grey goose,

I tried b12 tablets. I think they make me lightheaded. Three days after stopping I felt better. So a bit scared to take them.

More results:

CRP 1

ESR 2

Gamma 22 (<70)

CK 128 (40 - 320)

Calcium 2.47 (2.2 - 2.6)

Albumin 48 (35- 50)

Sodium 137 (133-146)

Potassium 3.7 (3.5-5.3)

Urea 5(2.5-7.80)

Creatinine 91(70-110)

Hb 12.2

Ferritin 66 .

My ferritin and hb have never been too good because I am a carrier of thalassemia.

Do you think I need thyroid medication then? Should I ask for it while waiting for a neurologist referral. At one point in march my tsh was 6.5 but I was not weak like this at all!

Thank you

[greygoose in reply to activelazy]

I wasn't suggesting you take B12 tablets, I said a B complex - all the Bs. So that they are balanced.

Your ferritin is too low. It should be up near 100. Best to take some iron, and vit C with it, to help absorption.

I think your TSH is too high. And it has been higher, and it has been very low. That really does sound to me like Hashi's, even if your antibodies are low. Have you had a thyroid scan? Because some people with Hashi's never have high antibodies, it's just picked up on the scan.

Your weakness really does sound like low B12, to me. You last had it tested in May, two months ago. It could have gone down again. Low B12 doesn't just cause pain, it also causes neurological damage. And three months is a long time between injections. But, I think it would be a good idea for you to go on the Pernicious Anemia forum on HealthUnlocked, and learn a bit more about B12. There are a lot of knowledgeable people on there who will be able to help you better than I.

[activelazy in reply to greygoose]

I had another injection on 21st June. So what are you inclined more towards, b12 or tsh?

[greygoose in reply to activelazy]

Well, the TSH in and of itself won't cause symptoms. But it's too high, meaning there's a problem somewhere.

Low B12 will definitely cause bad symptoms, and the injections may be too far apart for you. I don't know, it's something you need to keep an eye on. And, remember, a serum B12 test will not give an accurate result when you are supplementing B12 in any form. What you need is the active B12 test.

[activelazy in reply to greygoose]

Ok thank you for your replies

[greygoose in reply to activelazy]

You're welcome. Sorry I can't be of more help. But do check out the Pernicious Anemia forum. I'm sure they could help you more.

[activelazy]

I had an ultrasound of my neck and a radio active iodine uptake scan in December. The ultrasound showed inflammation to signify sub acute thyroiditis (no one called it auto immune).

The RAIU scan showed very poor uptake of iodine because my thyroid was overactive.

I had other symptoms during overactive phase but not weakness or muscle pain.

Thank you