high TSH

[HurricaneGreys]

Hello,

I had a total thyroidectomy around 5 years ago and have been on and off thyroxine for multiple reasons.

My current TSH is >100

Current free T4 is 3

how dangerous is this?

[Jazzw]

If you don’t have a thyroid at all, it’s very dangerous. You could go into a myxedema coma.

I sense a story. If you’d like to share, please do. And if it’s been your decision not to take thyroxine, please reconsider taking it.

[HurricaneGreys in reply to Jazzw]

I was diagnosed with depression at 13, when my thyroid started to swell. I went misdiagnosed for years. Now i struggle to trust professionals.

I feel worse on the meds.

When I’m off them I can function and I feel normal

[HurricaneGreys in reply to Jazzw]

My GP just told me that it’ll take years to kill me. So I don’t need to worry about being unmedicated

[helvella Administrator Thyroid UK in reply to HurricaneGreys]

Your GP is wrong. It *might* take years to kill you.

But one precipitating event can kick you into myxoedema coma. And that is one reason it is so dangerous.

[Jazzw in reply to HurricaneGreys]

What a heartless beast your GP must be.

Like to see your GP manage without a thyroid and replacement thyroxine. Bet they’d soon change their tune.

[helvella Administrator Thyroid UK]

Potentially extremely serious.

I'll be blunt, because I have no choice. You are likely to be getting close to what is sometimes called Myxoedema coma stage. This is not a literal coma as we usually understand - that is, people are rarely actually unconscious. But the body fails to cope in multiple directions.

It is a state which most papers and books discuss in terms of mortality rates.

People with very low thyroid hormone levels (and usually very high TSH) can appear to keep going for a while but something can suddenly precipitate a crisis.

I don't want to discuss why you are where you are because what matters right now is getting treatment. But more than happy to discuss if you want to, if that will get you from where you are to a much better place, where you are getting decent treatment.

[pennyannie]

Hello HurricanGreys and welcome to the forum :

I'm a little confused as your Profile says you have Hashimoto's - a thyroid Auto Immmune health issue - and here you say you had a total thyroidectomy 5 years ago for which can we know the reason please ?

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

Whether with a thyroid and suffering with Hashimoto's or having had a total thyroidectomy you need to be dosed and monitored to replace the ailing / missing thyroid otherwise you can become very unwell both physically and mentally.

What were the reasons for not staying on the T4 - Levothyroxine -

Without a thyroid - Levothyroxine alone may not have restored your health and well being -

it didn't mine - so did you try other thyroid hormone treatment options such as T3 or Natural Desiccated Thyroid and for some reason these didn't work well for you ?

Your TSH is signalling that you need thyroid hormone replacement - and should be around 1:

Your T4 at 3 is likely way below any range I've ever seen - you must be feeling awful -

We really do need further information to help you better :

[HurricaneGreys in reply to pennyannie]

I had a total thyroidectomy because I had a goiter that was pressing on my trachea so I couldn’t breathe properly. My thyroid was full of cysts

[pennyannie in reply to HurricaneGreys]

Ok then - thank you :

So without a thyroid I think the Hashimoto's AI disease is not of any consequence unless if taking Natural Desiccated Thyroid - as I do - but I'm with Graves Disease and post RAI thyroid ablation back in 2005 - and now I self medicate as left very unwell on the NHS.

Not everybody gets on with T4 - Levothyroxine only - and some find some brands upset them - and need to stay on a named brand of T4 tablets that doesn't upset them -

I was discharged from hospital on 100 mcg T4 daily - which seems to be about the norm - and have a letter detailing my TSH, Free T3 and Free T4 -

Do you have there your blood test results from when you were discharged from hospital and can you share this with forum members on here -

I think you can only do 1 photo shot per post - so are you up for typing in - that's ok too :

Have you tried self sourcing other thyroid medications because of issues with Levothyroxine - that's ok too - we just need to know a bit more to be able to help you better.

[HurricaneGreys in reply to pennyannie]

I used to be on 175mcg liquid daily as I have issues absorbing medication. But when I stopped being compliant, they changed it to 49ml of levothyroxine once a week to be supervised on taking at the pharmacy. But I stopped doing that too. I don’t have all my medical history. Just my most recent blood test which is in the question above. Thank for helping

[pennyannie in reply to HurricaneGreys]

Absorption issues are common - did you feel better on the liquid T4 - as there are some forum members on here who can't tolerate T4 at all - and get labelled non - compliant - and need to take a different form on thyroid hormone replacement.

I don't know if 175 mcg T4 daily equates to 49 ml weekly - hopefully someone else can tell us :

ADHD is also a common issue when not optimally medicated, especially when without a thyroid as symptoms can be much more acute.

Are you being managed by an endocrinologist as these levels you have look very wrong ?

I can't imagine how you are coping - do you have a family around you for support ?

[HurricaneGreys in reply to pennyannie]

I haven’t been under an endocrinologist for over 3 years

[pennyannie in reply to HurricaneGreys]

It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and NOT a TSH - and in primary care it does seem all they get is a TSH with an occassional T4 reading -

I don't believe your ' hyper ' symptoms are hyper - but a sign of being on the wrong medication :

Did the endo try you on other treatment options - T3 or Armour ( NDT ) ?

Were you well when discharged from endocrinology ?

[HurricaneGreys in reply to pennyannie]

I wasn’t well when they discharged me

[pennyannie in reply to HurricaneGreys]

So - they failed to treat you - this is not acceptable :

Did they try you on a different treatment option - T3 - Liothyronine - or Armour a mix of T3 and T4 thyroid hormones ?

[HurricaneGreys in reply to pennyannie]

They didn’t

[pennyannie in reply to HurricaneGreys]

I'm sorry :

[HurricaneGreys in reply to pennyannie]

My GP spoke to an endocrinologist who apparently said that I can go unmedicated for years before I get ill. Is this correct?

[pennyannie in reply to HurricaneGreys]

Maybe you can live without a thyroid and not be medicated but you'll become very unwell.

and who wants that ??

certainly not the patient -

especially when there are established, tried and tested, recognised treatment options available to help maintain good thyroid health and well being :

[HurricaneGreys in reply to pennyannie]

when I take thyroxine I get hyper symptoms even when my levels are optimal. I’m waiting for an assessment for ADHD as they can mimic each other. Hopefully when I get an assessment and possible diagnosis, I’ll get the right treatment to be able to tolerate the thyroxine

[pennyannie in reply to HurricaneGreys]

What have you been told and considered as ' optimal thyroid results ' please :

[HurricaneGreys in reply to pennyannie]

TSH 0.5-2

FT4 15-23

[pennyannie in reply to HurricaneGreys]

I think these are the ranges - and where you need to be within these ranges to be well and have back ' your you ' is the question :

When on T4 - Levothyroxine we generally feel best when the T4 is up in the top quadrant - so with this range - I'd be looking for my T4 up at around 80% so around 21 :

Why - T 4 - Levothyroxine is a pro-hormone and needs to be converted in the body into T3 the active hormone that runs the body - much like petrol/electricity runs a car -

roughly speaking the higher the T4 - the higher the T3 and we need good high levels of T3 to get us through 24 hours a day - with the brain and heart taking the lions share of T3 and with the body needing to repair and replenish itself when we sleep and hopefully wake up again feeling good about the day before us -

and able to get through the day and to do what needs to be done without breaking down before we go to sleep again.

The thyroid is a major gland responsible for full body synchronisation - much like a conductor of a orchestra - and synchronises physical, mental, emotional, psychological and spiritual well being - and if with not on enough thyroid hormones - any one of these bodily functions - or all of these bodily functions can become compromised leading to symptoms of poor health, whether it be physical or mental.

No thyroid hormone works well until the core strength vitamins and minerals - ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.

Some people can get by on T4 only medication - Levothyroxine.

Some find T4 seems to not work as well as it once did - and that by adding in a little T3 - likely at a similar dose to that they naturally produced when they had a thyroid - around 10 mcg T3 - this gives them back their ability to metabilise and feel well again.

Some can't tolerate T4 at all - and need to take T3 only - Liothyronine.

Whilst others find their health and well being improved by taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland - and derived from pig thyroids, dried and ground down into tablets referred to as grains and the original treatment option, used successfully to treat hypothyroidism for over 100 years.

[Lolota]

It's very dangerous. Please go see your gp quickly.

[HurricaneGreys in reply to Lolota]

My GP is aware. I’m not currently prescribed levothyroxine

[helvella Administrator Thyroid UK]

HurricaneGreys,

Are you still there?

How are you?

Have you had any help?

[HurricaneGreys in reply to helvella]

I’m okay, I don’t want to take the Levo because it gives me horrible anxiety and mood swings, even at lower doses.

It makes my mental health so bad

[helvella Administrator Thyroid UK in reply to HurricaneGreys]

Thank you so much for replying and explaining a bit.

Do you have a mental health professional involved?

Is there any mileage in discussing the idea of taking liothyronine (T3) with them? You would not be the first person who has lots of problems with levothyroxine but who then does much better on liothyronine.

Could you have any other physical/organic issues contributing to your mental health issues? For example, some people have awful mental issues when low in vitamin B12. Or fail to cope with thyroid hormone medicines when iron deficient.

[HurricaneGreys in reply to helvella]

I was discharged from all mental health services because I wasn’t getting better with their input. I’ve been iron deficient since my thyroidectomy

[HurricaneGreys in reply to HurricaneGreys]

I have autism so they always blame my symptoms on that. Everyone just fobs me off

[helvella Administrator Thyroid UK in reply to HurricaneGreys]

They are really letting you down.

[pennyannie in reply to HurricaneGreys]

I recognise this well - though not autistic I am dyslexic and when not optimally medicated the issues much more pronounced.

Any thyroid hormone replacement needs good levels of core strength vitamins and minerals - and I now aim to maintain my ferritin at around 100 - folate around 20 - active B12 125 ( serum B12 500++ ) and vitamin D at around 125.

Can you ask your surgery to run these vitamins and minerals for you ?

With a diagnosis of iron deficient this needs monitoring -

My ferritin came in at 22 after I lost my thyroid - it's a common problem and rectified by taking iron tablets which do NOT need to constipate and make everything worse -

Your surgery are letting you down - can someone go with you - so you don't get fobbed off - like hundreds of us have before you - and why we now come back on here to try and help another person struggling to get listened to and better thyroid health.

[cbraffe]

Hi HurricaneGrey,I feel so bad with the way health professionals have let you down. I am a mother of two adult children on the spectrum. I too suffer with anxiety since i was diagnosed with graves years ago. It is tough. This platform has been my life saver. The way you have been treated is uncceptable. Please get a friend or anyone close to be your advocate if possible. Wishing you all the best. Sending you hugs.

[Lolota]

Hey, I sent you a private message. Please read it.