No thyroid: My thyroid was removed in 2018 not... - Thyroid UK

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No thyroid

Misty4
Misty4

My thyroid was removed in 2018 not due to cancer but as a side effect of complications following an operation to remove a benign frontal lobe brain tumour and removal of tracheostomy. Both ops seem to result in personality changes, depression and impulsivity. Has anyone else heard this

21 Replies
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Hidden
Hidden

Yes. I truly feel that we are never ‘the same’ after removal of thyroid. We can only get to the best we can be by making sure that we are on the correct medication and that it is optimised so that our levels are close to top of range.

In my opinion - not shared by many endocrinologists - people without a thyroid need Liothyronine in some form - maybe in NDT. Many of us can’t function on Levothyroxine alone. Our thyroids do produce a certain amount of T3 for immediate use.

I hope you feel better soon Misty.

Stay safe 😊

Misty4
Misty4 in reply to Hidden

Thanks. Am only on thyroxine. Dose was changed (decreased) about October/November. At that time I spent my whole pension pot on 3 static caravans and rowed with my kids, very out of character. Dr referred me to psychiatrist although I’d asked to be rereferred to neuro psychologist as they had taken me off their list as apparently I hadn’t responded to texts which I don’t remember receiving. Loads more problems last year too many to list. What is NDT and T3?not even heard of them. Thanks for your response. I appear “normal” but don’t feel it x

Hidden
Hidden in reply to Misty4

Levothyroxine (T4) is only a storage hormone. It converts in the body to T3 which is the active hormone needed by all our cells, particularly the brain. A few people are ‘bad converters’. This means they only have low levels of T3 in their body. These people need T3 to be given as an additional or alternative hormone. Like Levothyroxine, it’s synthetic. It’s called Liothyronine.

NDT (Natural Dessicated Thyroid) comes from pigs and is a natural hormone replacement containing both T3 and T4. I take this.

After my thyroidectomy I was on T3 (Liothyronine) for about a year. I felt great. My meds were then changed to Levothyroxine (cheaper) and my health deteriorated rapidly in 6 months. Anti depressants made no difference to my mental state. I was referred to a Psychiatrist. As soon as she knew I’d had my thyroid removed, she tested my FT3 and put me back on Liothyronine. Job done.

I now take NDT (which I buy myself) because I find it suits me to have the ‘back up’ of T4 the storage hormone.

Interestingly, Liothyronine (T3) is sometimes prescribed by psychiatrists to people whose FT3 levels are quite reasonable and who have their thyroid. On other occasions, a small dose is used as an adjunct to an antidepressant.

I had to have my thyroid removed because I had cancer. How I regret it but I had no choice.

The personality changes and depression could very well be due to under-medication on thyroid hormone replacement. They are symptoms of hypothyroidism. Are you taking levo? How much? When did you last have thyroid bloods done? If you have a copy of the results, post them here, with the ranges, and let's have a look. :)

Misty4
Misty4 in reply to greygoose

Yep take 2 Levi 0.75 one day then 100 the next day. They alternate. Was changed last year as result of blood test showing original dose too high. Don’t get given blood test results. Probably wouldn’t understand them anyway. Also take daily Atorvastatin 20mg, Bisoprolol 60mg, Edoxaban 60mg, Ramipril 10mg and Venlafaxine 75mg. Main prob with blood thinner was constant nose bleeds through the day and night but never for more than 10 mins so no need for AnE. Now shave an edge of them and prob take 50mg a day. No nose bleeds now.

SlowDragon
SlowDragonAdministrator in reply to Misty4

First step is to get full thyroid and vitamin testing ...but first a few questions

Do you always get same brand of levothyroxine?

Was brand changed when dose reduced?

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Teva and Aristo are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Do you do this?

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

The fact you have high cholesterol suggests you are under medicated on too low dose of levothyroxine

Frequently GP will only test TSH which is completely different

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if under medicated

Ask GP to test vitamin levels and to retest thyroid levels

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, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

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

List of private testing options

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Many many people with no thyroid function can not recover on just levothyroxine....but first step get FULL testing...see where your levels are

Come back with new post once you get results and members can advise on next steps

Misty4
Misty4 in reply to SlowDragon

Short answer if I don’t know, my meds are delivered in dossett boxes monthly. I’ve never really checked the paperwork that comes with them, perhaps I should.

If I’d have realised the importance of the thyroid gland I would have joined this site a lot sooner and perhaps saved myself lots of heartache and insomnia through financial troubles.

SlowDragon
SlowDragonAdministrator in reply to Misty4

So you need to request that levothyroxine is kept separate (common problem with dosset box and levothyroxine)

Misty4
Misty4 in reply to SlowDragon

Thanks. Didn’t know that

greygoose
greygoose in reply to Misty4

No, you won't get given blood test results, most doctors would prefer you don't know. But, the law says they are yours and you are entitled to have them. Ask at reception.

I don't suppose you would understand them at first. We've all had to learn to understand them, but it's worth it! If you understand your results, your doctor can't fob you off anymore - which is why they don't want you to have them! But, we can help with that. And, you would probably learn that your dose wasn't too high when it was reduced, it's just that your doctor isn't doing the right tests.

So, I'm guessing, going by your medication, you have high blood pressure, high cholesterol, some kind of heart problem and depression - all symptoms of low thyroid. If your thyroid was properly treated, you would probably not need all that medication - which is why it's worth learning to read your blood test results - and getting the right tests, which your doctor probably doesn't do.

If your cholesterol is high, then your T3 is probably too low - they are connected. And, you shouldn't be taking statins for two reasons: a) you're a women (I'm guessing again because there's no information on your profile) and b) you are hypo. They aren't going to help but could cause terrible side effects, like lowering your sex hormones. And, as you're already hormonally challenged, that is not a good idea! Raise your FT3 and your cholesterol will drop. But, you need to be optimally medicated for your thyroid for that to happen. Pretty certain you are under-medicated.

Do you take all that medication at least two hours away from your levo?

Hidden
Hidden in reply to Misty4

Interested to hear of your nose bleeds on blood thinners. There is a view that the effect of blood thinners is increased by Levo - although other sources state their is no interaction.

Link below may interest you

healthline.com/health/levot...

Hello Misty

My treatment for Graves Disease was thyroid ablation with RAI back in 2005. I think my thyroid took about 8 years to fully burn out at which I became very unwell and housebound.

Yes, I know and have experienced severe reduced cognitive function and emotional lability.

The thyroid is a major gland responsible for full body synchronisation, including your mental, physical, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism, to name but a few.

You might take to look at the following book, Your Thyroid and How To Keep It Healthy is written by a doctor who has hypothyroidism.

Barry Durrant - Peatfield writes in an easy to understand, insightful and sometimes funny way, about all things thyroid, and as we don't now have this amazing little but vital gland we do need to know all that it does so we can try and compensate accordingly.

If not on optimal thyroid hormone replacement symptoms persist :

What thyroid medication are you currently taking, and do you have some more information to share with us, like blood test results ?

Otherwise you may like to ask your doctor for a full thyroid blood panel to include TSH, T3, T4, and ferritin, folate, B12 and vitamin D as these vitamins and minerals need to be optimal for good conversion of any thyroid hormone replacement you are taking.

My doctor refused to run these tests for me so I went to the one of the private companies as detailed on the Thyroid website and started my journey back to better health with the help of this amazing site.

Misty4
Misty4 in reply to pennyannie

Sadly not but I will check with my doctor when things are back to normal. Thank you also for the book suggestion, I’ll definitely be checking that out. I am surprised at how similar the side effects of total thyroidectomy and brain tumour removal are. Don’t remember being told about them and five days after the op the hospital were in a rush to get rid of me and had to give me so much medication and instructions and I haven’t seen the consultant again, just members of his team x

pennyannie
pennyannie in reply to Misty4

Hey there,

Well yes, that sounds very similar to my hospital experiences -and the ongoing mushroom management in primary care.

Hidden
Hidden in reply to Misty4

🙄🙄

Hey misty. I had RAI in 2014. Nine months later I became unwell (five years and one day ago to be precise). I am taking some T3 to see if this helps me. It has helped many on this forum.

Your thyroid is an important part of your body. I am not surprised you are having problems but I really hope you get better! Stay safe. X

Misty4
Misty4 in reply to cazmania7

Thanks. Can you explain what RAI means please

humanbean
humanbean in reply to Misty4

RAI = Radioactive Iodine.

As an alternative to removing the thyroid entirely people are given radioactive iodine to drink. It burns out the thyroid. If the dose is high enough the thyroid will be destroyed as a functioning gland completely, but if the dose is lower then some people keep some residual function which is very rarely enough to keep people supplied with adequate thyroid hormone. They are then treated for hypothyroidism.

Obviously if people have cancer then the thyroid has to be removed. In many cases the patient is given RAI as well as having their thyroid removed just in cases some cancerous cells are left behind.

There are other causes of thyroid disease that are treated with RAI only.

I am sure some of your problems are connected to being hypothyroid but some will also be secondary to the removal of the tumour from your frontal lobe. Do you belong to headway, the organisation for brain injury? I know the frontal lobe is involved with cognitive function, memory and impulse control but little more. If you can, try to push to see the neurologist psychiatrist and always take someone with you to appointments that you trust. It is very hard even when well to accurately remember what is said and also I have found medics are less ‘pushy’ if someone else is also there. Good luck

Misty4
Misty4 in reply to cjrsquared

Thank you. Yes I am a member of Headway but only went to 1 meeting before the lockdown. My daughter came with me and when she said Mum spent all her money she was told that was quite common following frontal lobe removal. When I was in hospital there was a sign for Headway which said “If you know anyone who has an ABI” I didn’t think that was me as I hadn’t had a car crash or anything, it just grew. Found out too late that it referred to anyone with brain injury. Now learning could be joint tumour and thyroid ggrr

I was a raging lunatic after my thyroidectomy in 2016 I would flip out on anyone in a second for any reason totally (uncontrollable) rage and then suddenly it disappeared...rinse and repeat for months until I was given Cytomel (T3) and slowly my moods lifted and rage outburst disappeared....my poor mother said she thought I was losing my mind.

Prior to my thyroidectomy I was a peaceful and happy person.

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