I'm new to this forum and to living with thyroid disease. My health has always been up and down and I never really felt right I frequently got ill and so keeping a job down was hard but I just about managed. I finally got diagnosed early this year and am on levothyroxine. I've been suffering with anxiety as well as extreme tiredness and aches and pains. I have two little boys and my husband agreed that's it's best for me to stay home a become a housewife and focus on that and maybe volunteering one day for my own health and wellness. I definitely feel better about the idea of staying home but I worry about it being fair on my husband, I want my children and him to be proud of me and I hate the thought of living off him (he says this is not the case and is so supportive) my husband said he's happy for his role to be earning the money and mine to do the housework and run everything else. I love this idea but am afraid of bring judged. How do I get over these feelings? Some members of his family can be very judging and not think having a thyroid disease is a big deal but it's really affecting me. Does anyone else not work due to illness? How do you find meaning and fulfillness in your life? My Dad suggested applying for Pip? What is that and am I likely to get that for thyroid disease? If I apply for any help I worry that social services would get involved as I have two children and they'll think I can't look after them. I just feel so much shame. Please talk to me about your experiences. Thank you for listening.
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muddypaws12
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Good things: you have a very supportive husband and two small children who will be delighted to have you around.
Bad things: you have thyroid issues, and most GPs are really really rubbish at dealing with this - they have minimal training in thyroid (about half an hour) and no training in nutrition, which becomes more important if you are hypo (under-active).
So you will need to fight your corner to get well - at which point, you can re-assess the whole job/family/what do I do next with my life side of things.
Most of us hypos are started off with 50 mcg of levo when our TSH goes too high. This is a "starter" dose and should be regularly re-assessed and increased - but far too many people are just left on a too-low dose of replacement hormone. And lots of people never have the full testing they actually need to get properly well.
So step 1 is to get your historic blood results (and related lab ranges which change from place to place and over time) and find out what's happening now. You are legally entitled to these without needing to give a reason, but it's usually easiest to say "for my records" or register for on-line access. Always get your blood results after each set of tests - don't rely on a receptionist saying "normal" or "in range" or other such guff - you want the actual numbers
You are aiming for a TSH that is always less than 2 and probably less than 1. If it is more than this you need an increase in meds - an extra 25 mcg a day is usual, with re testing 6 -8 weeks later. You should always always have an early morning, fasting blood test (before 9 am when TSH is highest) and leave 24 hour from your previous dose of levo (no point in getting a just-taken-your-meds "spike").
But you need more than TSH testing. TSH is a message from the pituitary to the thyroid telling it to work harder if it doesn't produce enough thyroid hormones (so the higher the TSH broadly the worse it is doing) - but isn't a thyroid hormone itself. Your thyroid produces T4, an inactive hormone, so you need free T4 testing too, to see how much it produces. You want this to be in the top third (or higher) of the lab range. T4 converts into T3, the active thyroid hormone needed in every cell of your body, so you also need free T3 testing, to see how well you convert. You want this at least 60% through range. Some doctors or labs are very sniffy and won't test free T3, so you will see lots of posts here about private testing.
And then you need to test key nutrients - ferritin, folate, vit D and B12. I've had some success with my GP by saying that these are the tests recommended by Thyroid UK - but otherwise, get these done privately too. We need these to be at good levels, both for your levo to work best and to feel properly well, but many hypos are low and need to supplement.
Once you have got your blood results, post them here (with the lab range after each one in brackets) and the lovely people here will help you to understand them.
Be warned that it can take a while to get your meds where you need them, becuase increases are slow and steady, with 6 - 8 weeks between testing - but it IS possible to get properly well. This is a kind, helpful forum, so ask about anything you're not sure of.
Muddypaws, you have absolutely no reason to feel shame. None of this is your fault. It's just one of the things that happens, and we don't always know why, but I can't think of any cause that would be your fault.
It is an extremely debilitating disease, because thyroid hormone is needed by every single one of the millions of cells in your body to function correctly. And, if you don't have enough to go round, all sorts of things can go wrong, from trivial - like hard skin on the back of your heels - to major - like a heart attack. Anything and everything can be a symptom of thyroid disease. We cannot live without thyroid hormone.
People - even doctors - tend to think that hypothyroidism is just a mild inconvenience causing fatigue and weight-gain. So, the usual advice is: 'everyone gets tired' and 'eat less and exorcise more'. Neither of which are helpful, or accurate. The fatigue caused by low levels of thyroid hormone cannot be compared to the tiredness felt by someone after a long day at the office or a late night out. It is all-consuming and over-whelming. And the same can be said for all the other 350+ known hypo symptoms. They could all be due to 'something else', but are worse because they tend to come in bunches. And, there's nothing you can do about them in the short-term - you can't 'ride them out', or 'learn to live with them' - you can only be patient and work on optimising your hormone and nutrient levels. Which takes the patience of a saint and perseverence, at the one time in your life when you feel your absolute worse and unable to fight. So, these people need educating! Not easy to do, I know. But, I repeat, none of this is your fault.
The work situation is difficult, I agree. I was always accused of being 'moody' and 'aggressive'. And most people hated me! But, had they felt the way I felt most of the time, I think they would have been moody and aggressive, too. I was lucky in that I was able to retire just at the point where my symptoms were at their worst. So, if your husband - and he sounds wonderful, by the way - suggests you stop work and concentrate on your home and children, you should jump at the chance. Just think of it as a sebatical. A Pause. There are lots of Pauses in our life, from one thing or another. And, it's often good to take a step back for a while and gather our forces. This is just another one, whilst you regain your health and vigor. There's no shame in it. It's necessary for our mental health. And, you will come out of it the stronger for having taken time out. When you are well again, you can go back to work again - maybe, even, in a better job! Absolutely no point in struggling on, getting weaker, if you don't have to. It won't win you any Brownie Points in life!
Love your screen name, by the way. Does that mean you have a dog - or dogs? I have a dog who is hypo, too, so we understand each other.
Take care. And don't worry. All will be well in the end. xxx
It can take a while to get dose levothyroxine etc correct ….
Too often GP suggests this is an easy disease to treat…..for some people (at least 20% of thyroid patients) it can be challenging to get correctly medicated
But by working through options and getting FULL thyroid and vitamin testing we can almost always make significant improvements and pretty much full recovery
How much levothyroxine are you currently taking
How long on this dose?
Do you always get same brand levothyroxine at each prescription
GP should also have tested vitamin D, folate, ferritin and B12 plus thyroid antibodies to see if cause of your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s
Do you have any results you can add?
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.
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
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
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
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 and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
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 too
Hello there, I have graves disease which affects my thyroid by making it over active.At times I have felt very I'll and it has made my migraines worse.I have grown up children living at home and at the moment am not working.I was doing part-time domestic cleaning and to tell you the truth I am only just managing to keep my own house running.I am lucky that my husband has been happy to support me while our children have been growing up.Yes at times money was short but a marriage is a partnership and each couple does whatever is best for them.Take no notice of other people.I'm sure you would support your husband if it was the other way round.Little children are hard work and I can't imagine having to look after them feeling as I do now, so you are doing a great job.Your health is your wealth , so at the moment that is the most important thing. Concentrate on that .Also for me I know extra stress makes me feel ten times worse, so be kind to yourself and for the moment just focus on getting well and looking after your family.Thyroid problems can also cause anxiety which is probably making everything seem much worse.As you start to feel better you could maybe try volunteering or helping at school until you feel well enough to work full time again.Lastly, there is a lot of advice and support on this forum and although it can sometimes take a while you will feel well again and can work again full time if you want.Just think of it as a temporary thing until your health is sorted.Best wishes to you.
I saw you post this morning and wanted to reply but its likely to take a while so I thought I'd wait until I had more time.
First off please don't feel bad about wanting to be a stay at home mum, bringing up happy, healthy kids is a job in itself. Its not "less" than someone who goes to work and get paid, we are far too guilty of judging others as economic units and rate people on how much they earn or how much money they have and that is so so wrong. Its incredibly materialistic and shallow.
As women and mums no matter what we do its wrong and there's always going to be someone judging, whether we go out to work or stay at home there's always someone going to have an opinion on it. But the only people whose opinion matters is your own, your husband's and your kids. As my hubby says only worry about the opinion of someone who matters to you and sod anyone else.
I was a stay at home mum when my kids were young and I loved it. I did a little part time work like cleaning and childminding, but it fitted in around my children.
If you want to feel like you are contributing to society, but make no mistake, bringing up children is contributing big time, then I used to do some volunteer stuff. When my youngest started nursery I was a parent helper. I used to help out at my son's Cub scouts group and I also did some Neighbour Hood Watch volunteering and stuff like organised litter picking. It got me out of the house, made me feel useful and I met other people. There are loads of volunteer opportunities if you want to consider them, schools, hospitals, charities.
I was the same as you, I felt guilty about being at home and inferior to those who had a fulltime job but then mums who go to work feel guilty about not being able to be with their children or feel guilty when they have to take off from work. There's no right or wrong, so do what feels right and fits in with your circumstances and family. There are plenty of mums who would love to be able to stay at home but can't afford to.
On the issue of PIP, PIP stands for Personal Independence Payment and it is a benefit paid to sick and disabled people both in and out of work. Its not dependent on NI contributions and isn't means tested.
PIP is broken down into two parts, there's a care component and a mobility component. You can get one or the other or both. There's a standard rate and an enhanced rate, so the more disabled you are the more likely you are to get enhanced rate.
Care component covers things like do you need help with washing, dressing, preparing food, taking medication, engaging with others, managing money, going to the toilet. When its says help it doesn't just mean physical help from another person, it can also mean emotional support, prompting and any aids or appliances you might use.
PIP covers both mental as well as physical health so someone with a mental health problem like anxiety or depression might be ok physically but require support from another to go out, or talk to others or remember to take their medication.
The mobility side is mainly problems getting around and walking but can cover things like agoraphobia or again if someone's mental health impacts on their ability to plan a journey or go out alone. You get points for each activity if you meet the criteria and you need 8 points for a standard award and 12 points for an enhanced one.
PIP isn't awarded on the basis of the health condition alone, having a thyroid issue won't get you an award but you need to show how it impacts on your day to day life and the difficulties it causes. That might be fatigue, pain, anxiety, depression or the other myriad symptoms it can cause.
I'm not going to lie, PIP isn't easy to get. There's a long form to fill in, if you can get medical evidence from your GP or any hospital treatment that supports your case send that in. Be prepared that you might get called in for an assessment by a health professional employed by one of the private companies that the DWP use and there's a high chance you won't get anything or you won't get what you think you should have.
There are online PIP questions you can try, fill them in and be honest about any limitations you might have, this can give an idea if you stand a realistic chance of scoring enough points.
If you decide to make a claim I would strongly advise you to consider getting Citizens Advice or Welfare Rights involved, the forms are not easy to fill in and many people get turned down. Its worth getting expert help and advice.
greygoose 's reply is spot on. It's not your fault , and you're not being a wimp.
Those family members who think it's not such a big deal have not 'walked a mile in your shoes' .. we have.
They'd soon be wanting some more understanding if they had to drag their mind and body relentlessly through mud every day, while juggling children ,and still cook dinner/ repeat forever.... like we often have to do for years.
And your kids won't benefit from you being a 'role model of a working mum', if it comes at the expense of you being too exhausted to ever be any fun .
And anyway ...... being a homemaker for children really is the most important job in the world.
So be kind to yourself.
Take the opportunity to find a balance in your life/work/home.
The kinder you are to yourself now, the sooner you'll be as good as you can be thyroid wise ... which benefits everyone else including your husband and kids.
It's just the same as when someone recovering from a bad back feels like they NEED to help out moving the furniture to be useful again , before they should really be lifting any more than the cat.... everyone else in the family just wants them to be careful for longer so they don't ruin next months holiday by moaning about their back in the car all the way to Cornwall ... they don't give a monkeys about your help in moving the furniture.. it's just you that needed to feel useful .
And trust me .. (cos i've done it ).. if you DO hurt your back again moving the wardrobe when they'd all asked you to leave it alone .... then they'll really lose patience with you.
So relax , it's allowed .. and you're doing it for them.
p.s 'social services' have no connection whatsoever to the process of applying for (or getting) benefits .. so please don't worry about that .
but i think ? being awarded PIP (personal independence payment ?) is unlikely for most of us. the criteria are very hard to pass while you still have the use of legs and arms at least occasionally.
I had to quit my job because of thyroid disease and joint pains and no I don’t feel guilty and my husbands people also judgy and guess what don’t care what they think simply because they don’t pay my bills and lucky me they live few states away. If your husband is ok with it and financially your good don’t worry about it maybe down the road your health with turn around and you can go back to a job.
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