To Share or not to Share!?: Dear community, I am... - Thyroid UK

Thyroid UK

137,936 members161,765 posts

To Share or not to Share!?

Camels70 profile image
51 Replies

Dear community, I am so happy to have finally discovered you🙏🏽 I am 47 years old and have been diagnosed with Hypothyroidism back in 2004. I take 75microgram Levothyroxine. I didn’t take my condition very seriously, I blindly followed my GP’s instructions and I seriously feel that there are many misconceptions about our condition. I feel like a slow camel, fatigued, experience mood swings, get dry itchy eyes, have gained weight and basically I am not the serene person I used to be. My family have commented that i have changed and I am more irritable and not as patient as I used to be. My employers have referred me to an occupational health and they are putting me through a disciplinary because I have failed to respond to an email in a timely manner and I was accused of being abrupt in one of my emails. I think my job may be on the line. I am concerned about this meeting with OH and I don’t know what to say to her? Do I share my hypothyroidism condition with her? Can my employers hold this against me? My colleague who also suffers from the same condition has advised me to contact you as she believes that my condition may have played some part in the incident that took place, Please Help!???

Written by
Camels70 profile image
Camels70
To view profiles and participate in discussions please or .
Read more about...
51 Replies
Helsan profile image
Helsan

These characteristics can certainly be linked to your hypothyroidism. Your dose of 75mcg is fairly low but we are not able to help you without your blood results. Do you have any recent results? I assume you started on a lower dose and had bloods done even 6 -8 weeks with an increase of 25mcg each time until your TSH and T4 were reasonable levels? For most people a TSH below one is needed to feel well and a T4 in top quarter of range. T3 is a good test to get but not often done. Can you post your results with ranges so people can comment. You should also have Vit D and B12 tested as they are often low in thyroid patients. Ask for a print out of your results you are entitled to one.

Camels70 profile image
Camels70 in reply to Helsan

Dear Helsan, thanks for your comments.

I have seen my GP many times and explained my symptoms but I didn’t get much help. I also asked to be referred to a consultant, who may know more about my condition and explained to the GP again how my condition is affecting me but he refused. I mentioned that there is some lack of understanding and misconceptions about our condition and my GP was insulted and he told me that people don’t realuse how much GP’s know and he started to list his credentials. I reassured him that I don’t doubt his credentials and medical knowledge, but my GP said that I may be going through a menopause and he also mentioned that a referral to a consultant will cost NHS, as it is like a referral to a 5 star hotel. I don’t know what else I can do?

DippyDame profile image
DippyDame in reply to Camels70

Welcome Camels70

healthunlocked.com/thyroidu.........

Posted this a few days ago, just about sums it up!

Change your GP, that is a shocking way to treat a patient!

You really need to post latest blood test results, including ranges - T4 and T3 are essential. TSH becomes irrelevant after you add levo... but your GP will argue otherwise!

Folate, Ferritin, Vit D and Vit B12 also need to be optimal in order to suport thyroid function.

Your symptoms suggest you may be undermedicated and yes, your moods can change quite dramatically.....BUT, blood test results first please.

Hypothyroidism is a serious condition but because the majority of patients do well on what is the correct dose of Levothyroxine for them, that fact is frequently ignored... by ignorance and sometimes arrogant medics. If it were otherwise this wonderful forum would not exist!

Your best defence is knowledge so start learning about your condition - begin by reading previous posts here using the search link at the top of the page.

You are in safe hands here, I can vouch for that.

Good luck

DD

Camels70 profile image
Camels70 in reply to DippyDame

Thanks DippyDame for your kind comments. I think that I may have to change my GP as I don’t feel I am

heard at the moment. Thanks🙏🏽

sweetsusie profile image
sweetsusie in reply to Camels70

Immediately, if not sooner...change your doctor...you've got a creepy, uninformed one for sure....

TSH110 profile image
TSH110 in reply to Camels70

Change your gp fast the man is an insecure child behaving as if you were the doctor and him the patient needing support. He is a fool and fooling with your health and job and everything that impacts upon. See someone else ifcat all possible. It makes me mad blaming the menopause for my symptoms nearly killed me! £100k a year and you get that - it is not on.

Camels70 profile image
Camels70 in reply to TSH110

Thank you for your compassionate messages TSH110🙏🏽

Chickenlady2009 profile image
Chickenlady2009 in reply to Camels70

Wow, that makes me so angry! You asked for a referral and he made it about him and his qualifications. There is no analogy between going to a specialist for a medical condition and a five star hotel. I think the doctor has the mental problems not you!! He's at least very rude and unprofessional.

I hope you can change doctors ASAP!!!

Everyone here is giving great advice, so I don't have anything to add. Please post updates of your situation x x

silverfox7 profile image
silverfox7

Think the first thing is to get through this appointment re your job. But get some results and ranges to show us then we can advise.

You are probably undermedicated as 75 mcg isn't a huge dose. So whilst you are sorting things out have a look at the Thyroid U.K. site ( they run this forum) and print out or probably better to to make a note at this stage and optimal levels. Then if we suggest your levels aren't high enough then print out anything that could help you in this interval and say your short coming are probably down to bring undermedicated, we shall have to have a rethink if that's not the case and hopefully by then you can tell them that your doctor has increased your meds or whatever state you are in that that point but it will take 6 weeks to k ow whether you still need more. If results are suggesting an increase then go armed with the right info to your doctor and also point out the info is from the Thyroid experts on HealthUnlocked which is recommended by NHS CHOICES for thyroid disfunction.

But get a copy of your last results asap and don't forget the ranges as they differ from lab to lab.

Camels70 profile image
Camels70 in reply to silverfox7

Hi Silverfox, thanks for your advice. I will ask for my blood test results. I feel so ignorant, I didn’t know any of this and I trusted my GP blindly. Thanks🙏🏽

TSH110 profile image
TSH110 in reply to Camels70

They cannot refuse you - it is your right under the data protection say you want them for your own records.

MaisieGray profile image
MaisieGray

Your employer is doing the correct thing in asking you to see Occupational Health, but I would suggest that from your side, you also speak to ACAS and take their advice. Obviously we don't know the full facts, but had the wrong tone in an email been cause for disciplinary measures, when I worked within organisations, I would have been disciplined quite regularly. Unless you have a solicitor, ACAS can be helpful from the legal side of things, advising you, and accompanying/representing you at meetings with them. Have you spoken to anyone about the disciplinary? As a former employer myself, it is a legal minefield and I'd urge you to take advice.

Regarding your Dr, he's deluded if he thinks a referral to a Consultant is akin to going to a 5 star hotel; there's no parallel. You are asking to see someone who specialises ie is expert in, an area of medicine because the GP - GENERAL Practitioner - by definition and title, is not. Ranting about his qualifications to you would indicate he's got issues of his own, but in any case, he's not being a good Dr to you.

Regarding your health, please post your most recent blood test results and their ranges, so that you can be advised.

Camels70 profile image
Camels70 in reply to MaisieGray

Thanks very much for your comments and advice, MaisieGray. I will follow your advice. Thanks🙏🏽

TSH110 profile image
TSH110 in reply to MaisieGray

He’d know about five star hotels on his salary pity he knows so little about hypothyrodism

Camels70 profile image
Camels70 in reply to TSH110

Exactly my sentimentsTSH110👍🏽

Hello Camels70,

I found this piece of writing (written below) a long time ago after I was told I had Hashimotos (confirmed by TPO blood test). It explains a lot. When you read through it you think 'thats me!'

Research vitamins that you may lack due to a thyroid problem and ask the Gp to test you for them. Things like B12, folate, ferritin. When you take them and your thyroxine is at the best dose for you, only then do you start to feel better. Not completely, but better than you ever have. I cannot tell you how much Healthunlocked has helped me. So many helpful people on here in the same boat. You have to be polite but insistant with the Gp because they always dismiss how you feel and never want to do much as they think thyroxine is the answer. It isn't thr answer on its own.

Of course Hrt helps immensely if you also are menopausal. Those two things can mess with your body and are similar symptoms. Then you feel like your body is controlling you as you feel so unwell. Only blood tests for all these things can shed a light on them. The symptoms then become controlled to enable you to get in with your life and be happy again.

I hope that helps. Please read....

I Am Hashimoto's

Hi. My name is Hashimoto's. I'm an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid. I am now velcroed to you for life.

Others around you can't see me or hear me, but YOUR body feels me.

I can attack you anywhere and any way I please.

I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over.

Remember when you and energy ran around together and had fun?

I took energy from you, and gave you exhaustion. Try to have fun now.

I can take good sleep from you and in its place, give you brain fog and lack of concentration.

I can make you want to sleep 24/7, and I can also cause insomnia.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.

I can make you feel very anxious or very depressed, too. I can also cause other mental health problems.

I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me.

I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don't discriminate.

Some of my other autoimmune disease friends often join me, giving you even more to deal with.

If you have something planned, or are looking forward to a great day, I can take that away from you. You didn't ask for me. I chose you for various reasons:

That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) You may have a family history of me. Whatever the cause, I'm here to stay.

I hear you're going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can help you effectively.

You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.

There are so many other ways I can make you sick and miserable, the list is endless - that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That's probably me.

Can't get pregnant, or have had a miscarriage?

That's probably me too.

Teeth and gum problems? TMJ? I told you the list was endless.

You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.

You'll be told to think positively, you'll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you've seen, just how debilitating I am and how sick you really feel. In all probability you will get a referral from these 'understanding' (clueless) doctors, to see a psychiatrist.

Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I am.

Some of them will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago.

They'll also say things like, "if you just get up and move, get outside and do things, you'll feel better." They won't understand that I take away the 'gas' that powers your body and mind to ENABLE you to do those things.

Some will start talking behind your back, they'll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a "normal" person, and can't remember what you were going to say next. You'll be told things like, "Oh, my grandmother had that, and she's fine on her medication" when you desperately want to explain that I don't impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE'S taking, doesn't mean it will work for you.

The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.

I am Hashimoto's Disease.

whatever_ profile image
whatever_ in reply to

Great post sums it up nicely

Camels70 profile image
Camels70 in reply to

This piece of writing has moved me to tears. At times I have been feeling as if I am loosing my mind and I didn’t understand what has been happening to my body and mind. I think there may be other factors that have contributed to how I have been feeling, as well. I work with traumatised young people and have not been getting the suport that I believe we need as staff, (clinical supervision) and it is easy to be burned out as a result. I always related my symptoms to the stress at work. It never really crossed my mind that it could be Hypothyroidism. I will follow up on my blood test asap. Thanks BlaKcat for your advice and comments🙏🏽😢🙏🏽

MaisieGray profile image
MaisieGray in reply to Camels70

In which case, given your work place stress and experience of feeling inadequately and inappropriately supported, it is even more important that you take advice and are supported in the disciplinary matter. Good luck.

madge1979 profile image
madge1979 in reply to

Oh dear ...

I’ve read this before Blakcat

Thank you for posting .. I’m sending it to my niece and sister

Who have this disease ... I have Graves but they’re so Closely associated

Best of luck to you and thanks fir sharing

Luv mx🌹

Poppy1974 profile image
Poppy1974 in reply to

Wow thank you very much for posting this piece of writing. I was diagnosed with Hashimotos back in April this year, after several years of a plethora of blood tests and urine samples. Even a week of being hospitalised in my local hospital did not produce the correct diagnosis. I too was put on anti stress medication, I was told by my doctor that I was suffering from anxiety and made to feel that my symptoms were all in my head. Thankfully, after changing my doctor, I had further blood tests on all hormone functions, whose outcome produced my diagnosis of Hashimotos. Levothyroxine has been a life saver for me, but by no means is a complete cure or anecdote for all of my symptoms, as I still suffer from fog brain, and my hair is super fine, a lot less of it than I used to have before Hashimotos. My eyes used to screw up tightly if they were exposed to a bright light, just the light from my iPhone's scree could be enough to make my eyes sore. It's a revelation to hear from others who have experienced similar symptoms to me. Great post.

Namaste 🙏

in reply to Poppy1974

I was put on Valium and sertraline and referred to psychiatry when I first presented with what turned out to be thyrotoxicosis from sub acute thyroiditis 🥴

Camels70 profile image
Camels70 in reply to

Thank you Mike77 for your advice and support. I appreciate it very much🙏🏽

in reply to

That is brilliant!!!

HealthyEmski profile image
HealthyEmski

Hi Camel

you should speak to a trade union as you need someone who can represent you during your disciplinary, even at the very least it is just to make notes, but the rep can give you advice and at least you are not alone, fighting by yourself, especially when ill.

It sounds very harsh to be disciplined for email response and etiquette. Also, imo, your employer's response doesn't make sense: they are sending you to OH so they are aware you have a medical/health need but at the same time they are disciplining you. Jeez. Best of luck.

Camels70 profile image
Camels70 in reply to HealthyEmski

Thank you HealthyEmski for your useful comments and advice. I have a union rep and although her heart is at the right place, she is very new to this role and told me that I am her guineapig. The Unison branch are very unhelpful in my experience. I will send them an email and see hiw they respond. Thank you🙏🏽

HealthyEmski profile image
HealthyEmski in reply to Camels70

Hi Camel

Forget the branch and ask for someone from your region to represent you. The last thing you want is someone who doesn't feel confident or knowledgeable- no offence to the rep. I had to do this as my branch rep was unhelpful too. Good luck

Camels70 profile image
Camels70 in reply to HealthyEmski

HealthyEmski, I have tried contacting the regions and I was told that they cannot help and that I need to get support from the branch. Thanks for your kind advice, I appreciate it very much.

TSH110 profile image
TSH110 in reply to Camels70

That is a shame unison were very good in my case. Can you ask for support higher up I got this as well as a very good rep who was very experienced

Camels70 profile image
Camels70 in reply to TSH110

I have asked the branch to contact somebody from the regions as I wanted to have a woman as a union rep, because I felt that I would be understood better but they have refused to accommodate me. I only pay my Unison fees because I grew up to believe in the principle of the Trade Unions, otherwise, I have been always unhappy with the lack of support from the branch. Plus I think that there is conflict of interest when union reps work for the same organisation because they have made comments that they are scared of the HR manager, whom they believe to be a bully. Sadly, some people on the top are untouchable!

TSH110 profile image
TSH110 in reply to Camels70

Yes you need someone who is not intimidated by HR or whoever and knows the law. Unfortunately, some reps/branches are not great. Could you try their legal team for advice on employment law/disability where there might be more specialism and as a way to bypass an unhelpful branch/rep. Worth a try. I seem to remember the higher level officer might have been an employment law specialist he was rock solid in his support and wanted to sue them for blatantly breaking employment law. He had them running scared.

Reading it first time did the same to me. Bkess you. You are not alone. Lots of lovely people on here to help and chat. Gp's and consultants won't offer help unfortunately and often can make you feel stupid for asking questions as they dismiss it all as 'nothing" but armed with information you can get more help than you are. I used to write a list to take with me as brain fog was a problem. Vitamins have been my friend. It's the levels your blood tests show you are deficient in and the vitamins you need and that work for you. Stress makes things worse unfortunately but can't be helped when work are on your back. Be kind to yourself is what a nurse once said to me. That's what got me through. Tell the doctors dont let them tell you. All the best with everything.

Camels70 profile image
Camels70 in reply to

Thank you for your compassionate words Blakcat🙏🏽

SilverAvocado profile image
SilverAvocado

In my experience and stories I've heard of others experience, employers are always a bit shit. You've got to fight to get your illness accepted and any adjustments you need. I definitely agree with others to get a union, lawyer, or anything else you can on your side.

On the topic of going to occupational health, I think it's a mixed bag. These are the people who make a judgement (for your employer's benefit) about how much your illness should be taken into account. As long as they define you as disabled, you'll get a lot of extra rights and protections under equality law. The whole system is set up, basically, to make sure they do what they're supposed to do just enough that you can't take them to court later.

I'm not an expert, but as far as know you're probably better off going, because even though they may be a bit rubbish, if you don't go you'll get nothing. Ideally you want to go prepared to argue your case that you're a disabled person, and that your illness impairs your ability to do some of these things you're expected to do. This can be hard, because you may not see yourself as disabled, and you may not be comfortable saying out loud to a stranger the impact your illness has. But unfortunately these are the hoops we're expected to jump through :(

Go in looking as rough as you can get away with, and ham things up as much as you can. I don't mean lying, but putting everything out on the table not trying to minimise it. Don't say things like "Oh, I get a little bit of whatever problem.. But I'm able to handle it, and its only some days." say "Whatever problem is a big challenge to me most days a week, and there are things I don't do for myself because of it" - that kind of thing. The difference between really understating your issues, and making clear every little difficulty they cause.

I found this a useful link to read, to see how much help we're entitled to. The rights are we have are actually a lot more generous than I thought, and might give you courage to deal with and ask for things from your employer: equalityhumanrights.com/en/...

Camels70 profile image
Camels70 in reply to SilverAvocado

Thank you SilverAvocado for your useful comments and advice🙏🏽

DippyDame profile image
DippyDame

In haste Camels70 ...sorry, forgot to mention that you are legally entitled to a copy of your test results....ask your surgery for a any they have.

Why? I wish I'd had a copy of my original results, over 20 years ago, I only saw them recently and as soon as I did I recognised that they showed I am a very poor converter (of T4 to the active hormone T3) The GP who checked them failed to recognise this! I did, thanks solely to the knowledge I've gained here! My recovery only started less than a year ago with advice from TUK members

Had my results been correctly interpreted back then my health would not have deteriorated to the extent it did.

The moral of this tale....it's your body, take control of it's well-being

This and other info on TUK should help

thyroiduk.org.uk/tuk/about_...

Hope the OH meeting goes well you should not be penalised for being ill.

Camels70 profile image
Camels70 in reply to DippyDame

Thank you DippyDame for your useful comments and advice🙏🏽

It's a great pity. If you require professional legal help in the form of a specialized employment solicitor just look one up in your area. You will find one that does a free half hour and you may be able to find two i.e. 1 hour total.

Make sure that you keep a record of everything in order, times, dates, emails sent and received also any verbal comments etc. I am talking about your employment here not your health, this also needs to be written down separately in the same manner as the above.

I hope this will give you the help you need. Don't forget there are strict procedures to be followed by yours employer if they do not they will certainly be in trouble.

Take another person along to see the solicitor keep everything written in order and keep it short remember it's only half an hour. Also take another person along for any interview with your employer.

Camels70 profile image
Camels70 in reply to

Thank you Bunnyjean for the useful comments and advice🙏🏽

As for OH, your condition counts as a disability, so they have to make allowances.

Camels70 profile image
Camels70 in reply to Angel_of_the_North

Thanks for your contribution Angel ofvthe North🙏🏽

Fruitandnutcase profile image
Fruitandnutcase

I would get a hold of your blood test results before you speak to Occupational Health. If you can’t get them from you’ll ur doctor for whatever reason then look to getting your own privately - I use Blue Horizons Thyroid 11. That covers all the thyroid stuff plus vitamins and minerals and you can also get a short doctor’s report. Post that on here and get advice before you head off to OH.

I’d also take someone along for support - union rep or whatever - should it come to a disciplinary meeting. Many years ago my son had a disciplary meeting for something that was not only absolutely ridiculous but was completely untrue.

His father went with him and also friend who was an employment coach or something for people with health issues and he took notes. My husband just introduced him as a family friend which he was but it turned out later on that his co workers all thought he was our family lawyer. So a bit of mystery about your ‘friend’ might not go wrong. Especially if they wear a suit.

As Bunnyjean says above be sure to document absolutely everything that has happened at work, any witnesses, times and dates and print off keep copies of all the emails in question. You can never have enough ‘evidence’ these days.

I was convinced I was either developing dementia or mentally ill when my thyroid went haywire - I had Graves Disease which is overactive - but once I got sorted out things went back to normal or as normal as I will ever be. The letter to friends and relatives of thyroid sufferers is SO true. There is a similar version for hyper people as well

Get yourself some preservative free eye drops like HycoSan or whatever a good optician recommends and use them regularly throughout the day - at least that will fix your sore eyes which will be one less worry for you.

Good luck with it all and hard as it might be to believe, you will get better.

Camels70 profile image
Camels70 in reply to Fruitandnutcase

Thanks for your comments and advice Fruitandnutcase🙏🏽

TSH110 profile image
TSH110

If you are in a union get support. I discovered You are covered under the mental health act if you have hyperthyroidism because of some symptoms - oddly nasal hallucinations (I smelt hideous things everywhere!) was the one the mental health team I had to see, used. It helped to put the worst excesses of my employer to a stop. You are not properly optimised with all those symptoms you must need a dosage increase. Do you have blood test results with ranges? If not get hold of them and post here for advice on why you still have so many hypothyroid symptoms. It is a very bad do and sorry you are going through this. With better treatment you should be able to feel like your old self again or very close to it - you will get lots of excellent help here 😊

Camels70 profile image
Camels70 in reply to TSH110

Thanks for your advice TSH110🙏🏽

Hello Camels70. Sorry to hear you are having a tough time. On a very practical level about your work situation hypothyroidism is covered by the disability discrimination act. Here’s a good article on your rights by A respected endocrinologist. Maybe print it and share with occupational health. If you have a work place union talk to them. Your employer is legally required to make reasonable adjustments for your hypothyroidism and the symptoms is caused including psychological and mood problems. Good luck.

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

Daffers123 profile image
Daffers123

I have hashimotos (diagnosed by antibodies blood test) and I recognise the symptom of irritability etc. which people also say to me. I am usually worse when my medication is not right. In my case, since I adopted gluten free diet, my anti bodies have dropped and I NEED LESS THYROXINE. So my old dose (75mcg like you) actually was too high for me and definitely altered my personality. Its worthwhile to invest in a private comprehensive blood test (you can do finger prick at home, inexpensive ) to find out what actually is going on. Then the mmbers here will be able to advise.

Camels70 profile image
Camels70 in reply to Daffers123

Thanks very much for sharing your experience Daffers123 and for your kind advice. I will invest in a private comprehensive blood test. Thank you🙏🏽

TSH110 profile image
TSH110 in reply to Camels70

Smart move Camels70 😉 remember do it early morning (TSH is highest in the small hours and drops as the day goes on you want to capture it at the higher point) and only have water for 12 hours beforehand - no food/coffee etc at all, or your thyroxine take this after the pin prick/blood draw .

Camels70 profile image
Camels70 in reply to TSH110

Thanks for this great tip TSH110🙏🏽

Camels70 profile image
Camels70

I don’t know reallyfedup123. I will share my results after my blood test.

You may also like...

Share your experiences of carbimazole, please?

Well, today I have \\"officially\\" been diagnosed with Graves Disease by the nice lady to UCLH....

Shared care agreement, should I worry?

Hi all, Having completed a T4 & T3 trial with great successes, my NHS endo is soon due to approach...

Sharing supplier details

they have never participated in the board or filled out there profile, they may be shy, or they may...

Just sharing a thought

health. They may do this independently or in partnership with the healthcare system. I have just...

Sharing what a holland and Barrett assistant told me today

seeking good solid advice from you all, I may have listened to her but I left the shop empty handed...