SarahJane14712 months ago

I don’t work very much anymore. Few hours private cleaning. I have a small private pension that I live off.

I used to clean 3/4 hrs a day but that all stopped 3 years ago from thyroid. I was only Levo only until a few weeks ago but it just was not working well enough for me. The fatigue was still debilitating. I decided to privately source T3. It has been a game changer. I have my life back!!!!! Literally. I’m still careful because 4 years under treated means I need to let my body get reconditioned. I keep having to pinch myself that each day there is more of improvement in my physical and mental well being.

I could not have done this without the support and advice here. I’m still on 125 of Levo but I only seem to need a small amount of T3. I take 6mcgs in the morning. So far its great.

The morning dog walks are a pleasure again not a struggle. The two cleaning jobs I still do are easy 🤷‍♀️. But it may be a while before I take on any more work.

We are all different. This is just my experience 😀

RosieRuggles in reply to SarahJane14712 months ago

Wow that’s fantastic to hear the difference to you that T3 has made to your life! I look forward to feeling that well again. Thank you for sharing. Makes me feel more positive.

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shawsAdministrator in reply to SarahJane14712 months ago

I'm glad that you've found T3 beneficial and I don't want to be without my T3 as it suits my body and I feel well.

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Buddy195Administrator2 months ago

Like you, I’m a poor converter & hugely benefited from combination medication. However (for me) this wasn’t a quick fix, more like a steady improvement over a few months. Being under medicated made work a struggle, but optimal thyroid medication & key vitamins mean I’m now both physically & mentally stronger. I hope you manage to find an Endo willing to support a T3 trial .

RosieRuggles in reply to Buddy1952 months ago

Thanks very much. I have had a couple of recommendations for private sympathetic endos so I feel confident that I will get T3. I guess I will have to learn to be a bit more patient while I try to navigate the next few weeks and months.

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Buddy195Administrator in reply to RosieRuggles2 months ago

Remember we are here to help and support; keep posting! 🦋

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Jaydee1507Administrator2 months ago

It might be a bit early to apply for retirement if you haven't tried T3 yet and your Levo has been reduced. It's hopefully not been that long since RAI so healing time should not be too long once you get on the right dose.

I've been hypo 25years+ and was levo only for many years. Luckily I was self employed for the early part of that so could rest/sleep as and when needed. I then worked 30 hours a week for a few years until I really couldnt go on any longer. I'm also a poor converter.

Since adding T3 I am improving but I think the very long lead up time on Levo only has taken its toll and it willbe a long time for me to recovery. That shouldn't be the case for you.

RosieRuggles in reply to Jaydee15072 months ago

It is awful to hear how long you have had to cope with being hypo. I can't imagine it. That's encouraging of you to say it shouldn't take a long time for me to feel the benefit of T3. Thank you for sharing.

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pennyannie2 months ago

It is a difficult one as everybody's circumstances are different which generally determines one's choice.

I would not resign for the sake of this - especially if you enjoy what you do.

I think the quicker you see a thyroid specialist who we know is supportive of other treatment options the better placed you will then be to see things more clearly.

Your vitamins and minerals are in good shape and you just need more than T4 monotherapy like so many people after a thyroidectomy.

I was nearing retirement when diagnosed with Graves Disease and had RAI thyroid ablation but my situation was very different as i had recently relocated and my whole life was ' up in the air ' as well and an unsettling time in many ways.

RosieRuggles in reply to pennyannie2 months ago

Thank you for your reply. I should really be enjoying my work right now as I am part time, which is a luxury, but it is such a struggle and I can't really make the most of my days off. I think you are probably right about seeing a specialist as I will have a concrete plan of action . My mind is a bit all over thinking about options and what ifs. As I had loads of time off last year, due to the treatments, I am putting myself under pressure to get back to work but I know I am not well enough. I think I need to put that to one side and accept that I need to take the time to get sorted.

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pennyannie in reply to RosieRuggles2 months ago

Overthinking everything is a common trait when hypothyroid and not optimally medicated as you know you can't function as well as you need to and the brain goes into overdrive looking for short cuts as to how the keep going whilst with limited reserves.

I truly believe that once you start on full spectrum thyroid hormone replacement your brain will calm down, you will start to feel less stressed and be able to see a way forward.

The brain needs an awful lot of T3 to function and currently your T3 level is too low to fully service the needs of your whole body.

I guess it depends what your work is, but I would think, once you start on a fuller thyroid spectrum replacement you could be back, at least part time, within the month.

P.S. Thyroid uk - hold a list of patient to patient recommended endos and thyroid specialists - just contact admin @ thyroiduk.org -

You can also start a new post and ask for recommendations from forum members, maybe specify where in the country you live - though I believe video consults are quite common - replies will have to be by Private Messages - which simply mean your Chat button above - looks like a paper plane - holds the messages as we can't openly discuss by name, and consultants or specialists.

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RosieRuggles in reply to pennyannie2 months ago

Thanks pennyannie. Knowing I could be back within a month of starting T3 is heartening. That helps me work out a possible return to work date. After six months off (if I am off that long) my sick pay goes down to half and I won't be able to afford to live off that as I am part time so obviously I would need to get it organised before the six months absence are up. My first little win though - I have just had a telephone appointment with my GP - he is referring me to see an endocrinologist. I told him that the endo who said she didn't feel my symptoms were thryroid related (with a 19% through range T3) had never met me, seen me or spoken to me about symptoms - she had just read my blood results and saw them 'in range'. He was great and didn't hesitate to refer me. I wonder how long it takes the appointment to come through......

In my previous post, I put a call out to people in my area and had a couple of really supportive responses in the private chat.

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pennyannie in reply to RosieRuggles2 months ago

Well that's good to read:

I believe you are entitled to be referred to an endo of your choice, so maybe you already have someone in mind who works within the NHS as well as private and well placed to help you - if so - relay this information to your doctor.

How supportive your local hospital and doctor are to prescribing T3 is another hurdle - maybe the endo refused to see you as the Hospital Trust does not support new prescriptions for T3 - Liothyronine so couldn't help you even if s/he wanted to.

Did you check this out through the open prescribing website ?

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RosieRuggles in reply to pennyannie2 months ago

I did check this out and prescriptions for my area are rare so I will expect to be refused Liothyronine when I go to my appointment. At the very least I would like the dose of Levothyroxine to go back up so I can function enough to get back to work. Then I will work on making myself well and make a decision about how I will access Liothyronine. If you are allowed to have a referral to an endo of your choice, can it be anywhere in the country?

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SarahJane1471 in reply to RosieRuggles2 months ago

yes as far as I’m aware (unless the guidelines have changed recently) you can be referred to an Endo of your choice anywhere you choose.

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pennyannie in reply to RosieRuggles2 months ago

Yes - I believe so :

Yes get your T4 dose reinstated but believe you will need some other form of thyroid hormone support rather than monotherapy T4.

I too am without a thyroid and when refused any treatment option other than T4 I decided to source them myself. and first I trialled a little T3 alongside my T4 and it was like a switch having been turned back on in my brain and I knew i was on the right track.

I got muddled with dosing T3 alongside T4 - my fault - I felt turbo charged having over shot where I needed to be and frightened myself a bit so went back on T4 monotherapy for a month or two and then trialled the last option.

Natural Desiccated Thyroid - Desiccated Thyroid Extract - is a very good fit for me, and seems a much softer, smoother treatment option and has been my treatment of choice for the past 5 years.

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Eeyore1002 months ago

I think  Regenallotment had a good result when talking it over with her employer and jigged a few things around to take the pressure off, not always possible I know but.... I have summoned her 🤗

RosieRuggles in reply to Eeyore1002 months ago

Thank you Eeyore100.

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Regenallotment in reply to RosieRuggles2 months ago

Thanks  Eeyore100 🫡 Regen reporting in ✅

Yep I hear you sometimes things get a bit much, I too was scanning the pension policies (I’m 49) for ill health get outs, my advice is use HR, it’s their job. I explained I was trying my best to get meds right trying hard not to have sick days but spending every evening and weekend recovering. Heavy periods were meaning I couldn’t get from start of lesson to break without needing the loo.

Luckily HR had just invented a well-being policy and also a menopause policy.

They ask you to present your line manager (with their support) a proposal and timeframe while you sort yourself out.

Xmas 2022 I had a dodgy blood test that could have been Ovarian Cancer (it was fibroids) and dodgy MRI on neck that suggested parathyroid tumour (they are convinced it isn’t) but I was in a right spin. I fessed up to the HR director, explained I couldn’t think straight and when stressed my thyroid meds don’t work as well and that I was trialling 125mcg and then looking at private T3. Was exhausted, terrified and couldn’t concentrate.

They paid a colleague an hour a week to take a tutor group off me (this group took more than an hour a week to tutor) so my colleague single Mum gets more money, I get around 4 hours back and time to think, do some photocopying and catch up with myself. It’s been brilliant.

For heavy periods they said to be as flexible as necessary on those days, set tasks for students and pop off and come back. The class have adapted and don’t really notice now.

In addition I got a Roseway labs appointment for £30 and have a private prescription (from their pharmacist prescriber) for T3 that costs £75 for 12 weeks supply. I think that is cheaper than an endo. It’s made a huge difference, my FT3 hasn’t risen from 25mcg to 125mcg.

I’ve got on top of my digestive health which has worked wonders.

Although we all have blips don’t we, managed to give myself reflux last night and I don’t know how…. It had gone 🙈 …back to the drawing board on that one.

I’m currently on project ferritin, I’ve self diagnosed Iron deficiency without anaemia which has a bunch of symptoms that appear to mirror hypo symptoms. I’ll report back when I’m cartwheeling in the park and asking work for more hours 🤸🏼‍♀️

I think it’s good to remember that it’s very expensive to replace experienced staff, it’s better to support them through tough times. I’m incredibly loyal and more so now. I had to trust they had my best interests aligned with theirs. All hail the well-being policy 👏👏👏

Good luck, let us know how you get on 🌱🦋🌱

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RosieRuggles in reply to Regenallotment2 months ago

My goodness, you have really been through the mill and did well to get through without cracking up. You have been lucky to have such a great employer to support you through that difficult time. They clearly value you.

I am absolutely going to pursue T3, I doubt I will be fortunate enough to have it prescribed in my area through the NHS but I will try! ( I have checked the Open Prescribing site.) My employer has been brilliant too - I returned part time and have a lighter work load after a long absence last year. However I can't manage that right now and that sort of heavy support can't go on indefinitely. They have gone beyond the reasonable adjustments. I need to get myself sorted. I like the idea of presenting a proposal and a timeframe for getting back to some sort of normality.

Thanks for the information about Roseway labs. An excellent sounding possible option for the future.

Thanks very much Regenallotment. I am sure I will be back : )

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Josephineinamachine in reply to RosieRuggles2 months ago

hallo 👋 still working full time but there have been points in the last three years when I’ve been frightened about not being able to cope. But I’m now working on iron and ferritin levels, getting mega early nights and taking the occasional leave day to rest up. My teaching load is abusive to say the least between September and Christmas but then eases off in January onwards. Then it’s mainly marking and planning, tutoring and meetings… most of this I can do from home. I can nap at lunchtime then. Saves my bacon! Can you work from home at all?

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RosieRuggles in reply to Josephineinamachine2 months ago

Hi Josephineinamachine, you seem to have a really strong handle on what to do to keep yourself as well as possible and keep up with the workload. You have to work hard to look after yourself don't you. I'm a primary school teacher and yes the Autumn term is a killer. I have only got through it this year being part time and having the bulk of the work load taken off me by supportive employers and colleagues. Since my dose was reduced, it has become a struggle being at work during the day never mind if I had the normal evening and weekend work. When I am dosed correctly I think I will love doing part time and making the most of my time off. It sounds ideal being able to work from home. Well done for being able to stick with full time work.

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mrskiki2 months ago

I'm having problems as I work full time, especially as they want me in the office all week whereas I can manage more if I have a few days remote.

I have retirement as an option as a bit older, and I thought there is a chance less stress may improve my T3 a bit. I would like to get some quality of life back as I don't really enjoy all the things I used to anymore, and can't really manage socialising or visiting friends as I'm not the person I used to be.

So I'm keeping going at the moment and looking at whether to see a private endo/fn doctor for T3 trial, to see if my symptoms are due to low T3, or something else, as I would like to not sleep my retirement away.

Don't drive yourself too hard, I've had to step back a lot, some things just have to give.

RosieRuggles in reply to mrskiki2 months ago

Thanks mrskiki. I have found the odd thing about being at work is that you look normal and sound normal but your colleagues haven't a clue as to how you are feeling and struggling to cope. I hope you find relief for your symptoms. I completely empathise with you wanting to enjoy a better quality of life.

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mrskiki in reply to RosieRuggles2 months ago

and sooo irritated to see them all being trained on how to help women with menopause ( not that that’s bad) but quite agnostic to other female prevalent conditions, thinking can I get myself reclassified from thyroid to menopause?

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RosieRuggles in reply to mrskiki2 months ago

That's true. It is quite the done thing for employers to be supportive of the menopause isn't it. You'd probably get more attention and sympathy that way!

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mrskiki in reply to RosieRuggles2 months ago

I’ll watch it with interest as I do hope they do something meaningful for menopause as it’s a starting point but I wonder if it’s all publicity and tick box. I was offered what I call a menofan -it’s the only solution they seem to have, no help to my dry eyes at all so turned it down. OH dept did then help out with a review. But I can see something like flexible start times might be hard in your profession. I seem to be alive afternoon or evening but if I have an early start I’m done in by 11am with splitting headache to add. As they are struggling to keep primary school teachers, especially with experience, do ask for anything that you think may help, pointing out its temporary whilst you get stable, and I hope they will support you, one thing I have learned is that you have to ask for the changes you want, or you definitely end up with just a meno fan …

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Miffie2 months ago

I have been hypothyroid since childhood and been fortunate enough to always work. I was in my thirties when finally blood tests caught up with me enough to have a decent conversation with the GP. I was prescribed ndt from the outset. It was however when a GP pointed out my fT4 and fT3 were not ‘in balance’ and increased my ndt that I understood what ‘well’ really was. Unfortunately it was only to last three years and a move to next surgery put paid to good results. Back to bottom of range being considered good by future GPs. I had never felt so good before of after until I took matters into my own hands.

I have however never had to give up work until reaching retirement age. I do feel for those who are more affected. I was a teacher originally but moved into local government and was pretty much at a desk job so not too physical. For the last few years I was a Project Manager which meant a lot of networking and out of hours work. I gave that up eventually and went part time / self employed until state pension age. I know from reading on here have been lucky enough to keep going no matter how exhausted I felt in myself.

I hope you find done help soon and can keep going. Take care

RosieRuggles in reply to Miffie2 months ago

It is inspiring to hear how you have taken matters into your own hands to get better and have managed to keep going. I am a teacher of young ones and as you know, you need a constant output of energy, which I simply haven't got. I can imagine doing a desk job at some point. Even without a need for T3, I would struggle to get to pension age in this job. Thank you. Best wishes.

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Miffie in reply to RosieRuggles2 months ago

I was fortunate enough to teach in secondary schools. Well at least it’s a little less physical but equally draining especially with some of our more challenging pupils. Of course it helped that I didn’t know how easy living was until that brief spell in my thirties so really it was always uphill. I was brought up not to talk about myself and so many people knew that anyone the least overweight was lazy and probably not too clever so happy to never complain. Luckily my colleagues at school weren’t so silly to view me that way but I told no one about hypothyroidism. Likewise when I moved into new jobs within the local authority. Force of habit by then and I knew that anyone who dwelt on an invisible health issue often met with derision. I hope you get things in balance soon and can assure you the battle is rewarded when you look back on life and realised you won. Loving retirement grateful for the income of a decent pension. Take care

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Wired1232 months ago

I would definitely try T3 as it made a world of difference. I was always tired and had brain fog, was desperate to win the lottery and retire!

T3 can be life changing and you’re most likely going to need to go private but once your private endo has said it’s working for you, you can have it prescribed for free by NHS endo. So £1,000 investment in private Endo might be transformational and allow you to work full time.

My Endo is [redacted by admin] in Kingston, he prescribes T3.

tattybogle in reply to Wired1232 months ago

Hi wired , you need to edit out this Endo's name to protect him, (from other endo's )

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Wired123 in reply to tattybogle2 months ago

but he’s listed as a T3 prescriber in the Thyroid UK list and that list is freely available, so exactly what would redacting his name be protecting him from?

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RedAppleAdministrator in reply to Wired1232 months ago

Wired123, 'but he’s listed as a T3 prescriber in the Thyroid UK list and that list is freely available, so exactly what would redacting his name be protecting him from?'

Discussions on this forum that are not private (i.e. closed posts or chat messages), are visible in search engines. Hence anything you write (good or bad) about someone is not just visible on this open forum, but across the wide world web. This is not the case with the Thyroid UK list.

You have (sensibly) joined the forum anonymously, the name/s of your medical professionals should also be anonymous on an open forum.

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tattybogle in reply to Wired1232 months ago

publicly identifying endo's who prescribe T3 on the open forum could potentially cause problems for them.. it was not patients who complained to the GMC about Dr S ,, it was almost certainly their colleagues , who are anti T3 prescribing , trying to cause an avalanche of trouble for him .

It is only fair that we try our best to look after those who are willing to put their professional necks on the line to try their best to look after us.

Admin are not 'over the top' in this matter , they are just consistently applying the guidelines we all agreed to when we joined.

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RosieRuggles in reply to Wired1232 months ago

Yep! Desperate to win the lottery! Thank you so much for that recommendation Wired123. It is brilliant that you have managed to get T3 on the NHS. Fingers crossed, for a lottery win and being well enough on T3 to enjoy it to the full!

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RosieRuggles in reply to Wired1232 months ago

Wired123 would you please be able to send me the endo's name again, in the chat.

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Wired123 in reply to RosieRuggles2 months ago

I don’t understand why the moderators are so over the top. I simply mentioned my Endo’s name which is a fact, I did not offer any opinion on whether he’s good or bad so why on earth was a simple fact edited out.

It’s a warped system where inept and incompetent doctors get away Scot free for mistreating their patients out of sheer laziness, yet good doctors can’t be praised so we basically enable this pattern on this platform.

Anyway Rosie I’ll send you a DM telling you the name of my amazing, wonderful, supercalifragicilistic endocrinologist and the 11 idiots I saw before him who were absolutely useless despite being private and two being professors who are clearly teaching the next generation of Endos the wrong things! No other profession allows such sheer negligent service, imagine if your accountant got your tax return wrong.

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RedAppleAdministrator in reply to Wired1232 months ago

Wired123, 'I don’t understand why the moderators are so over the top.'

Forum posting guideline:

30. Do not post information about specific endocrinologists or doctors on the main board without their permission as this may result in unwanted attention from certain areas of the medical profession. If you wish to discuss a particular endocrinologist or doctor, you may mention his/her name and location, providing that you ask for comments by private message only. healthunlocked.com/thyroidu...

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Wired123 in reply to RedApple2 months ago

you may mention his/her name and location

That’s exactly what I did, nothing more - hence over the top moderation

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lynmynottPartner in reply to Wired1232 months ago

I think we need to clarify this particular point. It's ok to mention the name and location to ask if anyone knows anything about the endo but any comments about an endo need to be by private message only even if they are good comments. In the past, some private doctors and endos have found themselves before the GMC and in some cases have lost their licence because of how they treat with T3 or NDT. We are trying to stop this happening, hence the moderation. We know that some medics do come on here to see what is happening and we don't want to cause trouble for any medic who actually listens to patients and helps them .

I would hate that comments on this platform caused any issues for any good medics as that doesn't help them or their patients.

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RosieRuggles in reply to Wired1232 months ago

Thanks very much, I appreciate your help. It is good of you to let me know who to avoid too. Your endo sounds amazing. When you put it like that, it's true, a poor service from people in other professions wouldn't be tolerated.

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Incoguto2 months ago

Hey Rosie 👋 I have re-started working in 2021, took a full-time public job at first to see how I'll get on with it. It was largely okay. Then moved on to tech sector and it has been difficult. My current company is very understanding and my boss is a gem, but the last week or so I have been struggling with feeling worse, especially dizziness, brain fog and light sensitivity. It was thanks to Armour NDT that I was able to go back to work in 2021. Now I'm not optimal on it, so struggling a bit. Oh, and my job is fully remote and my day filled with client meetings. And I'm 38.

RosieRuggles in reply to Incoguto2 months ago

Hi Incoguto 👋 thank you for sharing. It's good to hear that you recovered your health enough to get back to full time work. In time to come I can imagine changing sector and I quite like the sound of working remotely but it does sound full on! It's fortunate that you have a good boss. I hope your symptoms ease.

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RosieRuggles2 months ago

I have had an unexpectedly lovely day making new acquaintances, being supported, encouraged and inspired. I have been filled with hope and have new options to explore. This is a life affirming forum. Thank you. I can't wait for what lies ahead as I know it will be better. I am going to bed happy!

Regenallotment in reply to RosieRuggles2 months ago

👏👏👏👏 good for you RosieRuggles

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