Want to 😢

[Pen1966]

Anyone here have this at all

[Buddy195 Administrator]

Hi Pen1966, can you tell us a little more about your left arm weakness & how you ended up in hospital. I know you posted recently about tooth ache and pain in your legs. Have you experienced pains in your arm or just weakness?

Your recent thyroid blood tests were:

Tsh 1.94 range 0.27 4.2 mU/L

Ft4 19.9 range 12.22 pm/L

Ft3 5 range 3.1.6.8pmol/

How much Levothyroxine do you take?

[Pen1966 in reply to Buddy195]

I had arm weakness and leg on left side they thought it was a stroke but wasn't I take 125mg levo but weakness all over also have ME apparently

[greygoose]

When I had weakness in my right arm, and neck, it was low B12. A fem months on a high dose, and a B complex, and things got much better. I'm fine, now.

[Pen1966 in reply to greygoose]

B12 is 451

[Buddy195 Administrator in reply to Pen1966]

Do you have the range for your B12 result Pen1966, as ranges can vary between testing laboratories. This is total B12. Have you ever had a test for ‘active’ B12?

When I had arm weakness/ pins & needles, I posted on the forum & followed member recommendations to try a B Complex. I found that my symptoms improved a few weeks after taking Thorne Basic B.

[greygoose in reply to Pen1966]

With a total B12 is should be at least over 550. Mine was about 350 when I had that problem, it would be worth trying to raise your B12. It won't do any harm, but might do a lot of good. Try a B complex with methylcobalamin (B12) and methylfolate. Thorne Basic B is a good one.

[SeasideSusie Remembering in reply to Pen1966]

pen1966

B12 is 451

It depends what the unit of measurement is for this. For Total B12 there can be two units of measurement and both are used in the UK:

pmol/L - tends to have a narrower range, eg (145-569)

ng/L or pg/ml (both the same) - tends to have a wider range, eg (197-771)

According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

So if your unit of measurement is pmol/L you need to change it to pg/ml and you do that by multiplying by 1.355

451pmol/L x 1.355 = 611.1pg/ml

So if your result is 451pmol/L (611.1pg/ml) then it's not too bad a result but could be higher.

If your result is 451pg/ml or ng/L then it's below the 550pg/ml that is metioned above where deficiencies can appear.

So for pg/ml or ng/L the minimum level suggested is 550 but better is nearer 1,000

For pmol/L the equivalent minimum level is 405.9 but better is nearer 738

greygoose you may be interested in this.

[greygoose in reply to SeasideSusie]

Confusing. 🤣 But, in any case, trying B12 would be a good idea, because no doctor would ever think of suggesting that! As one doc said to me 'it's just a vitamin'! Pft

[SeasideSusie Remembering in reply to greygoose]

I quite agree. That level of B12 needs improving

[helvella Administrator Thyroid UK]

I'm sorry, Pen1966, but I have removed the image from your post.

It contained your full name and that of a doctor.

For your own security, we advise not to post real names here. And we also do not allow doctor names.

Please feel free to add an edited image - with names cut off or obscured.

The image said you had presented with left arm weakness.

[Hedgeree]

Hi Pen1966,

I'd not heard of Functional Neurological Disorder (FND) before so I did a quick search and found these two sites;

fndaction.org.uk/what-is-fu...

rarediseases.org/rare-disea...

If you feel up to reading about your condition.

Best wishes.

[tattybogle]

Sorry to tell you this if you don't already know , but an FND diagnosis basically means they think the cause is psychological, not physical. sth.nhs.uk/services/a-z-of-...

"What are Functional Neurological Disorders (FND’s)

Functional Neurological Disorders (FND's) is the name given for symptoms in the body which appear to be caused by problems in the nervous system but which are not caused by a physical neurological disease or disorder. Health professionals sometimes call these disorders ‘medically unexplained’, psychosomatic or somatisation. We prefer the term ‘functional’ which just means that the body is not functioning quite as it should."

[Pen1966 in reply to tattybogle]

In other words they think I'm door lally

[Hedgeree in reply to Pen1966]

Pen1966

If you look at the discussion section on the rare diseases link that I posted above you can read in that part of the text that this is no longer the case....FND is no longer considered psychosomatic.

Sorry I'm not able to cut and paste from the document at the moment but will do when I get back home.

[tattybogle in reply to Pen1966]

No , not exactly .

they DO believe you are experiencing this .

they are saying you are NOT just imaging it .

they are saying you are NOT lying ( ie you are not 'putting it on' deliberately for the purpose of gaining some secondary benefit )

But they DON'T believe the cause of what you experience is any physical problem/ or a disease than needs any clinical treatment to fix it .

They believe the reason you experience this is roughly "something to do with the way you are processing sensory information in your brain and they believe it has an emotional / psychological component ".

So the 'treatment' (if there is any, apart from offers of mild pain killers or antidepressants for nerve pain etc) is probably going to be something along the lines of "getting you to think about what you experience in a different way" ... eg some form of CBT .. (cognitive behavioral therapy ~ recognising what you are thinking and why and how to change it)

But they realise this concept upsets people a lot ,so currently they use the word 'functional' to describe it....in another few years when everyone has figured out what they mean by 'functional' , they will probably invent a new phrase for it .

They have already been through the terms 'somatic' 'conversion' 'MUS' (medically unexplained symptoms )

[Pen1966 in reply to tattybogle]

I guess xx

[bookish in reply to tattybogle]

Beautifully put. I got the 'medically unexplained symptoms syndrome' farce plus the CBT and wasted a few years. Fortunately my new neurologists have said small fibre neuropathy and B12/methylfolate have helped. Waiting for more tests and hoping nothing 'functional' gets a mention! Working on thyroid......

[jrbarnes]

yes I suffer from muscle weakness, pain, swelling, tingling in my arm when my thyroid hormone is low. 99.9% of the time my symptoms are thyroid related or the hypo has caused other issues like low B12 and Ferritin but all roads usually lead back to hypo. My arm pain and weakness was so terrible I had to take a leave from work. I couldn't hold my arm up to do computer work.

[Pen1966 in reply to jrbarnes]

My levels were tested in hospital 2.3 Tsh and T4 22 was not given ranges as said would send to gps

[greygoose in reply to Pen1966]

Never mind the ranges, your TSH is too high. Your FT4 is probably at the top of the range, so I'm guessing that you're a poor converter and your FT3 is low. It's T3 that causes symptoms when it's too low, because it is the active hormone, needed by every single cell in your body.

[Pen1966 in reply to greygoose]

Result

Result

[greygoose in reply to Pen1966]

Yup, that FT3 is too low. Not even mid-range.

[Pen1966 in reply to greygoose]

RESULT

Result

[greygoose in reply to Pen1966]

You are a poor converter.

[Pen1966 in reply to greygoose]

How can Improve it

[greygoose in reply to Pen1966]

Well, optimising your nutrient levels might help, but there's no guarantee. Taking selenium might help, but again, there's no guarantee. You really need T3 added to your levo.

[Pen1966 in reply to Pen1966]

This is my Tsh for MMH done Tues just found out they just used my results for thyroid from May in hospital they did not teat grrr

Result

[greygoose in reply to Pen1966]

TSH much too high, which isn't surprising with that low FT3.

[Pen1966 in reply to greygoose]

How can I resolve

[greygoose in reply to Pen1966]

You need T3 added to your levo. Have you seen an endo?

[Pen1966 in reply to greygoose]

Endo refuses says all is ok as posted even on May's readings of Tsh at 2.3 and T4 at 22 someone from face group has sent me some tiromel 25mg and suggested I take quarter of a tablet for a few weeks to see how I get on

[Pen1966 in reply to greygoose]

But not sure if I need to reduce T4 as well by a bit

[greygoose in reply to Pen1966]

If you start taking T3, the FT4 will drop, anyway. So, I wouldn't reduce it at this point, if I were you. 1/4 tablet is good to start on. See how you go.

[Pen1966 in reply to greygoose]

Ok thank you would have to get privately but kind lady has given 100 25mgs

[greygoose in reply to Pen1966]

That was very nice of her.

Lots of us buy our own, privately.

[Pen1966 in reply to greygoose]

It was thyroid support group dorset

[shaws Administrator]

Hi Pen1966. I have looked on your personal page but you haven't given any background/history of how/when you were first diagnosed etc.

It is usual for members to read the background information before answering queries and it also saves the member from repeating it often.

If you want to read members' history you can click on their name which takes you to their personal page and they should have posted some background history and we don't need to repeat,

[Pen1966 in reply to shaws]

Will do when I have an ok day