partial thyroidectomy

[Linz78S]

Please, I need to know if anyone is out there who has suffered neurological symptoms due to this procedure. I had my surgery done in December 2019.

Thanks in advance ⚘

[bantam12]

Had a partial done over 50 years ago, not had any neurological problems.

[Linz78S in reply to bantam12]

Thank you

[pennyannie]

Hello LInz and welcome to the forum :

Can you tell us a bit more about your situation ?

The thyroid is a major gland and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

I have Graves and had RAI thyroid ablation and went through various phases of mental and cognitive decline :

I am now self medicating with full spectrum thyroid hormone replacement and have my life back again, thanks in the most part to a couple of books and this amazing forum.

What medication are you taking ?

No thyroid hormone replacement works well until your vitamins and minerals are maintained at optimal levels especially those of ferritin, folate, B12 and vitamin D.

It is imperative that you are dosed and monitored on your T3 and T4 blood test results with the intention to have these high enough in the range to relieve your symptoms.

This generally means your T4 will be in or near the top quadrant of the range as this should, in theory give you a high T3 as it is T3, the active hormone that the body runs on, not T4 which is a prohormone that your body needs to be able to convert into T3.

Some people can get by on T4 only, some people find T4 seems to stop working for them at some point in time, some people need a little T3 with their T4 and some people can't tolerate T4 at all and need to take T3 - synthetic Liothyronine.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10mcg pus a measure of T4 at around 100mcg.

T3 is said to be about 4 times more powerful than T4 with the average person needing to convert around 50 T3 daily just to function.

You can find out more about all things thyroid on the Thyroid UK website who are the charity who support this amazing forum.

P.S. Do you have any current blood test results and ranges you would like to share with forum members ?

[Linz78S in reply to pennyannie]

Thanks for your reply. ⚘My bloods have been stable for about a year.. 100mg of levo atm.

I was given 3 weeks of levo post op but never saw or heard off the nurse when she was meant to call me 4 weeks post op. I was really poorly with fatigue, lost weight, grey. My voice sounded like phyllis off coronation Street if you can remember that far back! And I couldn't swallow.I was at the doctors twice a week but they just said I was healing., one said I had anxiety and increased my antidepressants!

My son is type 1 and his nurse came to see me, he couldn't believe how bad I was. He called encrinology straight away and got my a blood test, indeed I was hypo. I was without any medication for 4 weeks.

It took until August that year for my bloods to become normal ish.

In this time I lost all sensation in my right side of my body, started in my face at first. I am now disabled. Before this I had a bad back but that was my only ailment.

I need some help as every door keeps getting shut on me. So my thyroid function is OK.. atm. That's not my concern.. I would just really like some help with this.. if anyone can please.. 🙏⚘

[Linz78S in reply to Linz78S]

I was without medication for 5 weeks and 5 days , sorry x

[Linz78S in reply to Linz78S]

I also have tremors and urine retention. Plenty more to add to the list but these are the main ones.I take vitamin d daily and megasorb vitamin b Complex.

[pennyannie in reply to Linz78S]

Hey there :

Well as I said above the thyroid is a major organ and the controller of all your bodily functions and since you have had a partial thyroidectomy it would be good to know if your thyroid hormone replacement is optimal for you

The fact you were left for 5 weeks without any medication is disconcerting and we could establish that you are now on the right level of thyroid hormone replacement for you.

There are now over 120K people on this forum looking for help as they are told they are fine with many prescribed antidepressants, when in fact their thyroid hormone replacement is not working well for them.

We could at least, confirm it isn't your thyroid if we had more information.

I'm so sorry you feel so alone with all this .

We are here and can support you but we do need more information to know which doors we need to assist you in opening.

[gabkad in reply to Linz78S]

What is the diagnosis for the loss of sensation of half of your body?Did you have a stroke?

[Linz78S in reply to gabkad]

I haven't had a diagnosis. They said ms but haven't done any tests and then said fnd. But that's a massive cop out. Basically they don't know, so they use that so they don't have to spend any more money on you. Leave you. I've not had any support. Physio. I've just got equipment in my house to help me round, banisters, hand rails.. you know that sort of thing. It all stems from this operation yet no one will speak to me about it. I just keep getting closed doors

[gabkad in reply to Linz78S]

What is 'fnd'? They didn't do any MRIs? I'm just wondering if having zero thyroid hormone in your body after 5 weeks post

thyroidectomy, if you heart got major arrythmia and threw a clot up to the brain.

Have they ever considered this?

Is your motor function normal?

[Linz78S in reply to gabkad]

thankyou for this, my d dimer was high at 368 4 weeks post surgery when I was admitted into hospital. Motor function is terrible, speech also. fnd is functional neurological disorder. unknown causes of neurological problems

[Linz78S in reply to Linz78S]

I had a ct scan15th march 2020 as i had migranes non stop mild circumferential mucosal thickening in maxillary sinus, but no comment of anything else. i had no sinus problem or cold at this time

[Linz78S in reply to Linz78S]

Same bloods 23 Jan 2020>60ml /min estimated gfr

Free t4 8.0

Tsh 6.237

Also noted was a chesty cough, extreeme horseness and couldn't catch my breath , this was 2 weeks without levothyroxine of the 5.5 weeks without in total

Xray showed no lung problem

[gabkad in reply to Linz78S]

You need an MRI. CT scan is good for hard tissues but not so much for soft.An MRI won't cure you but it might show where the damage is in the brain.

If you would have thrown clots from the right side of the heart, they would

go to the lungs. Which didn't happen because you'd feel it. In fact a big clot

kills fast. Clots to the lungs are extremely painful. Not just shortness of

breath.

That does not preclude a clot going from the left side of the heart to the

brain. It also does not preclude clotting in the carotid artery or the cerebral

artery going up to the brain.

MRI of the brain is what will show if there's damage.

[Linz78S in reply to gabkad]

Wow.. thank you so much for this.

I've had an mri scan recently, July, privately, which shows a pineal cyst.. its black so they are unsure if its a tumour plus small leisons on the brain.

Said I must have another one in 6 months time with tumour marker bloods done?

He wants to see if there are any changes in the leisons also.

I've been messed about so much, for instance I was meant to be having a call with the Dr and nobody called.

My pain is immense yet they are taking all my pain meds off me.

I just wish one Dr would look at all my notes. Which I have and go through it with me. There must be something that has happened during or after the surgery. From going from normal to disabled.

I am taking good vitamins also.

I just need a good Dr🙏

[gabkad in reply to Linz78S]

'Lesions' are indicative of damage. It's just somewhat strange to instantly developMS post thyroid surgery. Usually the first presenting sign with MS is vision problems.

Sometimes it can happen years before other symptoms start. Vision problems come and go. I have a good friend with MS and that was also his first symptom. He isn't in pain though he has lack of sensation in his feet and yes, urinary retention and some difficulty defecating. He also has some issues with swallowing because he swallows

a lot of air along with the food. He's had MS since his mid 20s and now he's almost 60.

In his case it hasn't progressed. He's had flare ups but if anything he's better because

he's no longer in a wheelchair albeit he walks with a stick. The kind that has a sleeve

type thing on the forearm. And he has a mobility scooter to get around town.

His hands are fine. He can play guitar and make jewellery. But he has help at home for cooking and regular chores (although I bet if he wanted to he could do it himself.)

[Linz78S in reply to gabkad]

As you sat, leisons are damage.. they haven't done any other tests to eliminate it. I've had the nerve test done but no idea the outcome.. and also bloods done again no idea the outcome, that was December last year. Hence why I went private.

I get double vision at night and floaters I think they are called. When you see bright lights flickering.

It's just yet another thing to do when I get called up for a routine appointment.

That's good to know that you have someone who is living with it.

My ex partners father died at 44 of a very progressive rare form of it 🙏 he was mis diagnosed for 4 years saying it was just vertigo. He was going into the marines.

I only want to get better, I can't imagine being like this when I'm any older this wasn't meant to happen.

I was absolutely fine before and now I can't even take my kids for a day out as my fatigue is so bad. ( I say I feel drunk even though I've had no alcohol)

I don't think I will accept anything until someone realises what's happened. It's obvious to everyone who knows me.. you can pin point it.

I'm sorry

I'm so so frustrated

And I can't even have a drink 😂

Your friend must be getting very good care, knowing he can carry on doing things he likes and having to live with an illness❤ I believe the ms society are wonderful support for people.

[gabkad in reply to Linz78S]

Hopefully you will get a firm diagnosis and get the treatment and care you require.It's just mind boggling that the healthcare system is so dysfunctional although maybe

Covid is also factoring in. A lot of elective procedures have been put on hold, for example. The waiting lists are so long people are going to die.

[Linz78S in reply to gabkad]

I won't hold my breath. It seems this fnd is a major factor to put people from getting any further tests done for a proper diagnosis. Even private, just in and out. I'm in stagnant water now, my disability isn't stagnant I am getting worse after each episode and the duration is getting longer.

I need to be back at work and amongst people for my own mental health. I have never claimed off the system it's just not me. I have a family to provide for.

You have been so kind to respond to me and I admire that thank you.

I have a different slant on things now and another avenue to look into. And for this I feel very lucky.

Thank you again ⚘

[SlowDragon Administrator]

First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Far too often only TSH is tested

First step is to get FULL thyroid and vitamin testing done

Essential to stop taking any supplements that contain biotin a week before all blood tests as biotin can falsely affect test results

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12

What was reason for partial thyroidectomy ?

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Low vitamin levels common as we get older too

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

[Linz78S in reply to SlowDragon]

Hi there Yes I have blood test results.

I asked for my neurological problem hospital records to be sent to a private neurologist and they where sent to me directly! I have copies up until April this year. My d dimer was elevated after but I need to find out when this was and if its anything to do with what's happened!

But after you've said this I will ask for access to the rest of my blood work. I have tests done every 3 months since this has happened as I don't trust what is going on. I've recently got a cyst on my pineal gland which maybe a tumour but I have to wait 6 months for another ct scan. It's just appeared between April last year and July this year.. as well as leisons.

I take levothyroxine 100mg atm and I have it during the night so my stomach is empty for optimum effect.

All my blood tests are predominantly in the morning and I don't usually have anything, just coffee before as I know it's better to go on nothing.

I had high white blood cells and was put on iron 3 months ago but she said as my periods where heavy its from that but my lymph nodes are up alot. My usual cycle is messed up. All my b12 and the usual culprits are in range. Chlorine is always high.

Sorry I'm going back and forth and I hope it makes sense.

Oh and it's always the same brand yes

[SlowDragon Administrator in reply to Linz78S]

Just testing TSH and Ft4 is completely inadequate

Essential to test FULL thyroid and vitamin levels

Please add most recent results and ranges

Extremely common to need to supplement B12, and vitamin B complex virtually continuously when on levothyroxine and vitamin D

What’s your diet like. Are you vegetarian or vegan?

What vitamin supplements are you currently taking

Heavy periods suggests thyroid under medicated and/or low ferritin levels

When on levothyroxine we need OPTIMAL vitamin levels

Approx how much do you weigh in kilo

ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Poor conversion of Ft4 to Ft3 is common problem.

First step is to get vitamins all optimal and fine tune levels dose

Guidelines on dose by weight is 1.6mcg levothyroxine per kilo of your weight

Strictly gluten free diet often helps or is essential

Getting coeliac blood test done BEFORE cutting gluten out

[Linz78S in reply to SlowDragon]

I will get back to you ASAP! 🙏

[Linz78S in reply to Linz78S]

I take selenium, niacin b12 vitamin d and zinc. I've gone into depth on my other chat. I'm sorry, if you take a look, it's to gabled. About my d dimer and bloods from 6 weeks post op.

I would be most grateful 🙏

[Linz78S in reply to Linz78S]

I weigh around 9 and a half stone. I don't have scales. I don't ever feel hungry but eat healthy when I can eat. I eat fruit and flapjacks. Marmite on toast. Loads of orange juice. Rice and veg. I don't drink alcohol.

I don't eat meat, or very limited but I'm not vegetarian.

I can lose weight significantly for no reason, but then I can put on, water. Its not fat.

Although I'm disabled I try to walk, even round the house when I'm not in the drunk stage of fatigue.

I have 2 beautiful children to look after so can't sit on my backside and I don't want to. I can see the people around me, obese and not doing a thing to help themselves. I never want to be like that. It's a lifestyle choice and I never wanted this lifestyle not in a million years.

The doctor was meant to call me yesterday but again no one called.

2 weeks since taking me off more pain meds!

The d dimer has got me worried and I really wish someone would help me with what could have happened to my body with 5.5 weeks of no thyroxine post op. She said that wouldn't have contributed to this. But my gut is telling me different.

Sorry to go on.

🤦‍♀️❤

[Batty1]

Had thyroidectomy in 2016 and developed small fiber neuropathy (burning skin sensation) with no known cause.

[Linz78S in reply to Batty1]

Thankyou thats interesting. yes I too get tingling