How has your Thyroid problems affected relation... - Thyroid UK

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How has your Thyroid problems affected relationships?

Jamesey82 profile image
59 Replies

Apologies if this has already been asked but I was curious.

How has the symptoms of your thyroid problems affected past and present relationships?

James

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Jamesey82 profile image
Jamesey82
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59 Replies
SeasideSusie profile image
SeasideSusieRemembering

I was young, married with a toddler and a baby, my undiagnosed hypothyroidism caused a great strain on our marrige. Eventually diagnosed but husband didn't understand how you're affected and it almost caused a divorce. Eventually he became more understanding, more helpful and we were married 43 years before he passed away.

Jamesey82 profile image
Jamesey82 in reply toSeasideSusie

I’m so sorry. Thank you for sharing.

hachiko profile image
hachiko in reply toJamesey82

Yes, so sorry.

SlowDragon profile image
SlowDragonAdministrator

I think it's incredibly difficult for family or friends to understand this invisible illness. You can look perfectly normal, but feel so very ill.

It really, really doesn't help, when Medics say "blood test is fine", very often implying that any remaining issues are imaginary or due to mental health issues.

Current thyroid treatment is often totally inadequate. Many are under medicated or poor converters, needing T3 as well as T4

They don't test FT3 or antibodies routinely. Or routinely test for vitamin deficiencies. Or test for coeliac or advise on the possible advantages of strictly gluten free diet for anyone with Graves or Hashimoto's

jgelliss profile image
jgelliss in reply toSlowDragon

SlowDragon ,

CONGRATULATIONS ! WELL DESERVED ! YOUR IN GREAT COMPANY .

Best Wishes

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, and vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances common too, especially gluten. So it's important to get antibodies tested.

Jamesey82 profile image
Jamesey82 in reply toSlowDragon

Thanks Looks like I’ll need to save my pennies! lol

greygoose profile image
greygoose

Fortunately, I got divorced before I was diagnosed, because I know he would not have understood! But, I was ill all through our 27 years together without knowing why. He was of the opinion that as he never got ill, no-one else had the right to be ill either. But, it wasn't just the stress put on our relationship by that attitude that caused the final break-up. It was all his other attitudes, as well! lol No, our marriage would not have survived constant pill-taking and endo appointments, and all the rest. Especially as levo made me so ill, and NDT made me even worse. He believed I was a hypochondriac, anyway. That would just have confirmed it in his eyes. :(

Peanut31 profile image
Peanut31 in reply togreygoose

Greygoose

Hope you don’t mind me asking , but, What do you take if NDT and Levothyroxine didn’t work for you?

Best wishes

Peanut31

greygoose profile image
greygoose in reply toPeanut31

I went onto T3 only for several years, and that suited me much better. Not returned to full good health, but then I don't really know what that is!

Now, I'm experimenting with adding in a little levo. Built slowly up to 50 mcg, and it seems to be ok, now. We'll see if it actually starts to make me feel better! :)

Peanut31 profile image
Peanut31 in reply togreygoose

Greygoose

Thanks for your reply.

You have given me plenty of advice and support since joining this forum to which I am very grateful and appreciative.

I only hope that you start feeling better soon.

When I see your name pop up advising members I think of you as Mother goose as your so knowledgeable.

I’m due a blood test in a few weeks (8am) for the GP to increase my dosage, as on 75mcg of Levothyroxine, once I’ve got the results I’ll post them for advice as I was feeling great, but, hit a brick wall again!!!!.

Best Wishes

Peanut31

shaws profile image
shawsAdministrator in reply togreygoose

Poor you - how awful.

greygoose profile image
greygoose in reply toshaws

Yes, well, I think we hypo ladies tend to attract that sort of man. We're easy targets, I suppose. So many on here have spoken of similar experiences. Broda Barnes had a theory that hypos attract other hypos, but as men are so rarely tested, how would we know. I did attract one known hypo, a few years ago, but he was a very controlling man, too. Ho hum! :)

shaws profile image
shawsAdministrator in reply togreygoose

Life's experiences - we could all write a few books :)

greygoose profile image
greygoose in reply toshaws

Oh yes!

hachiko profile image
hachiko in reply togreygoose

Omg, I USED to have that tendency. Not good for health!

greygoose profile image
greygoose in reply tohachiko

Indeed not.

hachiko profile image
hachiko in reply togreygoose

Dear greygoose, thank you for sharing. You deserve the best company and all the support. <3

greygoose profile image
greygoose in reply tohachiko

Thank you, hachiko. :)

Peanut31 profile image
Peanut31

I’ve been very lucky to have a very supportive husband (been together 21 years).

He’s put up with my mood swings, lack of energy, loss of libido and basically a nightmare to live with, as well as my anxiety to do with putting weight on (lost 2 and half stone many many years ago).

My thyroid issue has been going on for years and neither of us knew what the issue was until bang all my symptoms happened at once and even more symptoms.

Fast forward 18 months ago and diagnosed with Hashimoto’s and now on Levothyroxine due to an underactive Thyroid, I’m improving, but, It’s still early days as not hit my sweet spot with medication, but, getting there.

It’s difficult for people to understand how your feeling as it’s not a short term illness and not like a broken arm or leg.

It’s on going and a rollercoaster of emotions. People do lose patience with you. Some of my family don’t understand and just think I’m moody, others think now I’m on medication it should fix me.

Although it’s not the only important thing in a relationship I was hoping my libido would increase but, it hasn’t.

Best wishes

Peanut31

shaws profile image
shawsAdministrator in reply toPeanut31

You've been fortunate to have a husband who was concerned, as mine was and still is even though I'm now well.

Research by a number of researchers has shown that a combination of T4/T3 works for many who don't on levo alone. Some cannot convert levo and it makes some people very unwell but T3 added can remedy this. Some cannot recover until they try NDT (the very original hormone replacement for hypo) which was withdrawn through 'False Statements' by those who should know better i.e. the professionals. Many members source their own. T3 also used to be added or prescribed alone but that has now been withdrawn due to cost - pharmaceutical companies extortionate prices.

Peanut31 profile image
Peanut31 in reply toshaws

Shaws

Thanks for your reply, still early days for me.

I’m due a blood test in a couple of weeks (8am) ready for an increase. Currently on 75mcg was feeling great, but, hit a brick wall again. It was the same when I was on my initial dose of 50mcg.

I’ll post my results of my 3rd blood test when done.

It did cross my mind I may have to add T3 or go on to NDT, obviously I’m going the NHS route first.

Best wishes

Peanut31

shaws profile image
shawsAdministrator in reply toPeanut31

That is normal, i.e. given a dose (usually 50mcg to start) feel a bit better and then symptoms after a couple of weeks. Every six weeks we should have a test and an increase of 25mcg every six weeks until our TSH is 1 or lower. Unfortunatley more GPs seem unaware of this. Dose has to be gradually increased.

I hope you don't have to wait too long before you reach a stable dose and feel better with relief of y our symptoms. Just in case you haven't had a list:-

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

Jamesey82 profile image
Jamesey82 in reply toPeanut31

Yes, the lack of libido is a big problem at times as I tend to feel so guilty

xdianex profile image
xdianex

I don’t think my thyroid problems affected my relationships..... I just choose cr@? Men lol. It does make me extremely tired at times though, and I have cancelled outings ect before.

greygoose profile image
greygoose in reply toxdianex

I know the feeling!

Fruitandnutcase profile image
Fruitandnutcase

I have Graves. In the build up to finally being diagnosed I managed to upset someone I had thought of as a good friend. Seems she meant more to me than I did to her and we now have no contact at all. I think being so hyper made me very intolerant. Also had a massive bust up with a close relative and were still estranged. Fortunately it wasn’t a relationship that worries me. As for my marriage, my husband could see that I was really ill and was wonderful. He shopped and cooked for a long time and I slept a lot so I wasn’t always around like I used to be and am now.

Even though my husband did a lot for me and was very supportive I’m not sure he always ‘got’ how I was feeling - like he thought it would be ok to invite all our neighbours in for a Christmas soirée a month after I had started on my block and replace treatment! It didn’t happen but I couldn’t figure out quite why he thought it was even a possibly.

So I lost my friends and a relative but I kept my husband, my grown up kids and my job. That’s thyroid disease for you.

shaws profile image
shawsAdministrator in reply toFruitandnutcase

I am glad you're family are intact but it is a very difficult time when we, ourselves, haven't a clue what is going on. I have a good husband too and we have to appreciate them. To deal with illness, especially a long term one can put a great strain on relationships in general, especially if some aren't sympathetic or don't understand.

Millea profile image
Millea

I’m divorced for ten years and only diagnosed since 2015 - but it’s very difficult at times with extended family as they constantly say “but you look well” without realising what they are implying, which is - ‘you can’t really be that unwell if you look fine’ - it’s an added frustration and it just means I stop talking to anyone about how I feel and therefore don’t get the support that would be really nice to have.

shaws profile image
shawsAdministrator in reply toMillea

I am sorry that things were very difficult for you and I think that sometimes family want to try to cheer us up by saying we don't look so bad but they cannot see what is going on in our bodies and all of the symptoms.

You can have support on here as we've all been in the same boat at one time or another. As another member mentioned, if we are taking prescription meds others wonder why we are still complaining, especially doctors.

Millea profile image
Millea in reply toshaws

Yes - I don’t know how I would have felt if it weren’t for this site. Very isolated, I’m sure. Thankfully we have each other and can support through our own experiences.

MoonbeamXX1 profile image
MoonbeamXX1 in reply toMillea

Hello Millea

I can totally relate to your statement about other people telling you 'but you look so well!' with disbelief in their voice. I've had exactly the same thing for most of my life and my mother unfortunately got the same treatment (I'm ashamed to say) from me and the rest of our family. This was due to her 'looking well' and the fact that the ill-educated GP's did blood tests that showed her thyroid to be 'in the normal range'; told her there was 'nothing wrong with her'; but that she 'could have some anti-depressants'......

So we reasoned; if the doctor can't find anything wrong with her and he's done tests.....

So she was treated by everyone like a hypochondriac and I have kind of re-lived her life; so I know how she and you must feel when this happens.

Have you heard of the book 'Tears behind closed doors?' It's written by Diane Holmes (second edition 2002 but first obviously earlier). If you can get a copy; I thoroughly recommend it because it might make you feel a lot better and that it is 'not all in your head'. And the title comes directly from what you said about having to keep it to yourself because others are sceptical; she felt the same so only cried when she was alone indoors.

What really upsets me; is that things don't seem to have changed much at all (as this forum tends to illustrate) and yet she wrote the book over two decades ago.....

We should really be starting a revolution....if only most of us had the energy to do so.

Millea profile image
Millea in reply toMoonbeamXX1

Thank you. I will read the book for sure.

And thank you for sharing your story about your experience and your mums - there are so many of us out there who feel alone and misjudged about our condition that knowing we are not alone is very important.

All the best.

Claire

Kari55 profile image
Kari55

Thyroid problems affect marriage on many levels in positive and negative ways. We are a couple in our mid-30s and my husband has Graves’ disease. Although, he is still at the beginning of his thyroid journey and we don’t know what will happen next, his illness has so far caused us problems with conceiving which is a real heartache. On the positive note, we keep building our resilience as a couple and both started eating a very healthy diet, meditate and trying to find joy in simple moments in life. Who knows what other gifts the illness will bring but we are trying to stay open to it all.

shaws profile image
shawsAdministrator in reply toKari55

That is nice and positive that you support one another.

Hashi-Monster profile image
Hashi-Monster

It’s been very difficult, I had to give up work 2 years ago because I couldn’t think straight or was too tired to go to the office.

Before I was diagnosed one of my closest friends was convinced I was bipolar and we stopped talking 18 months ago.

My mother has called me a hypochondriac and lazy on several occasions and our relationship is still very strained even now I’ve been diagnosed.

I became a recluse not wanting to socialise and removed myself from all social media so I have lost contact with a lot of people.

I just want my life back now 🤞

Good news is that my treatment appears to be working 😊

Jamesey82 profile image
Jamesey82 in reply toHashi-Monster

I am very much in the same boat and can relate a lot. I was convinced it was just me.

Fruitandnutcase profile image
Fruitandnutcase in reply toHashi-Monster

Glad to hear that things are looking up. It’s very difficult with how other people react when you’re ill. I thought I must be mentally ill or developing Alzheimer’s - I was in my sixties when I was first diagnosed - the thing was I lost such a lot of weight I was so slim my body looked better than it had done for years. I just felt a total wreck inside.

It’s tough that you didn’t get more support from your friends and family. I guess illness shows you where you stand doesn’t it.

There are lots of this type of letter around online that might help you explain how you feel to your family and friends if you want to do that.

verywellhealth.com/when-you...

Hashi-Monster profile image
Hashi-Monster in reply toFruitandnutcase

Thankfully I’ve got a close group of friends who are understanding and just laugh that I’m taking pig thyroid 🐷

shaws profile image
shawsAdministrator in reply toHashi-Monster

I am glad you are now feeling so much better and it is such a relief.

I had never heard of hypothyroidism before I was diagnosed. What is much worse is that neither doctors or A&E did either. I was given other diagnoses but not hypo - I had an operation I didn't need and even A&E discharged me after an overnight stay as 'probably viral with high cholesterol'. High cholesterol at one time would have been a red flag. I diagnosed myself a few days later with a TSH of 100. GP phoned to ask 'who gave you a blood test forum'. I said "I did" and she said come and get a prescrip "you have hypo". I couldn't go anywhere I was too ill but luckily I had a husband.

Hashi-Monster profile image
Hashi-Monster in reply toshaws

Wow thank goodness you did that test when you did

I too was misdiagnosed many times and thought I was going mad.

shaws profile image
shawsAdministrator in reply toHashi-Monster

We do expect medical personnel to be at least a bit knowledgeable about a condition which is fairly commonplace but that's not the case in the UK.

Hashi-Monster profile image
Hashi-Monster in reply toshaws

To be fair .... I was misdiagnosed in Hong Kong three times (stress, anxiety, adrenal burnout) and in Australia (perimenopause) ... it wasn’t until I came back to the uk that they found the Hashimoto ... And before it was all endocrine related so they were on the right track 😃

shaws profile image
shawsAdministrator in reply toHashi-Monster

I, too, was misdiagnosed even to the point of having an operation to remove a 'post cricoid web' from my throat. When I came round I was told I didn't have such a thing but no diagnosis of what it could have been. Later on when finally diagnosed as hypo, I assume that the barium swallow showed an enlarged thyroid gland. I went on and on getting more worse by the day. I didn't get money refunded.

Hashi-Monster profile image
Hashi-Monster in reply toshaws

OMG 😮

MoonbeamXX1 profile image
MoonbeamXX1

I'm interested in why you would ask that question; if you don't mind saying so?

Jamesey82 profile image
Jamesey82 in reply toMoonbeamXX1

Curiosity as it puts a strain on mine at times

MoonbeamXX1 profile image
MoonbeamXX1 in reply toJamesey82

I asked because you gave no indication whether it's you or your partner who actually has the condition; that's a fair question. It's a trial for sure if you are the partner of someone unfortunate enough to suffer from hypo; but lordy, nothing compared to actually being the one suffering. Believe me, I know.

Jamesey82 profile image
Jamesey82 in reply toMoonbeamXX1

Was it ok that I asked?

Fruitandnutcase profile image
Fruitandnutcase in reply toJamesey82

No problem, it’s been asked on here before - more than once and when you look at our responses you aren’t alone.

greygoose profile image
greygoose in reply toJamesey82

Fine as far as I'm concerned - and I'm sure that goes for many other people, too! We talk about anything and every thing, on here, not strictly thyroid. We have had discussions about relationships before, but we've also swopped recipes, posted Elvis videos, talked about hypo dogs, told jokes... It's not exactly Facebook, but we aren't as rigid as some forums, I don't think. :)

Jamesey82 profile image
Jamesey82 in reply togreygoose

Great. I’m very new to the whole thyroid thing and it’s nice to know that I can find out that I can relate to others.

rosserk profile image
rosserk in reply toJamesey82

Of course it was ok to ask I thought it was a great question. I’ve been lucky my hubby is amazing but I spend a lot of time trying to validate my symptoms to him and everyone else. Because there’s not many visual symptoms I feel as if no one believes me when I try to explain how I feel, I’m sure they think I’m a hypochondriac, I have to convince myself it’s not my imagination never mind them! I think the physical/ intimate side of my marriage has suffered because I’m always tired or unwell. If I was my hubby I’d have left a long time ago! I’m a newbie too! 😜

Jamesey82 profile image
Jamesey82 in reply torosserk

Bingo! That’s exactly how I feel. Like no one believes me and thinks I’m lazy. Especially the ones who didn’t know me before I became ill I was such a different person.

rosserk profile image
rosserk in reply toJamesey82

I’ve tried to get people to read articles with other similar stories to mine but it makes me sound desperate! So now I just give up and don’t talk about it, I really feel like no ones interested in listening it’s been going on for so long. I was going to the doctors every two weeks for three years, with different symptoms. When I told the doctor I was saturated in sweat all the time but I felt cold to the touch he told me I’d feel better when the winter came along!

Every symptom I had pointed directly to a problem with my thyroid and it wasn’t until I gained weight that my thyroid was tested and showed a problem. It had been tested before but they only tested the TSH level which was 2 at the time, so I think I was symptomatic long before the results showed a problem.

The second test had my TSH at 13.8 and my T4 at 8.8 and I felt I was going to die. I was put on 25 mg of thyroxine and almost immediately I felt better but I only felt well for a couple of weeks then I was back where I started. It’s been a fight getting dose increases because each test put me back in the normal range not the optimal range advised here by people who are knowledgeable. Every time I have a dose increase I feel well for a couple of weeks then I feel bad again. I’m currently on 100mg and ok at the moment.

Anyway I understand your loneliness and desire to isolate yourself but now you’ve found this forum I would keep asking questions no matter how daft you think they are and keep taking the excellent advice you get. Without this forum and the help I’ve received I would not be feeling a sense of hope. Kindest regards 😜

NickP1 profile image
NickP1

It’s certainly a test to discover if your partner is a fareweather friend or not.

Anyone can stand next to you during the sunshine but not many put their arm around you during the storm.

It certainly showed me which partner mine is.

mtcorr profile image
mtcorr

This may sound strange but my family and friends although always sympathetic didn't truly understand how ill I was until I started NDT and became well. Now they have physically seen the change in me (I'm like a completely new person). 52lb lighter, symptom free, bright, alert, no puffiness, bloating and ugly rashes free to name a few.

I think it's the immense change that has shocked people, they ask questions - they want to know what's happened. More importantly they ask for their friends and families (I direct them here).

As for hubby he deserves a medal, lack of libido and the self hate and loathing that cones with the weight gain which just compounds the problem. How can you feel loved or want to love if you think your ugly. On saying that though we are 24yrs married and thankfully he has loved me fat or thin. He does still try to fix me, always trying to find ways to help and I must say most things do.

MoonbeamXX1 profile image
MoonbeamXX1 in reply tomtcorr

What a lovely and uplifting response mtcorr - I'm so pleased there are some people on here who have managed to find their way back to health and a 'normal' life.

If I look at your profile; will it tell me briefly how you managed to achieve that?

mtcorr profile image
mtcorr in reply toMoonbeamXX1

1st I read and read everything on here. Then ditched levo and started NDT(Thiroyd). I focused on vitamins and minerals at that time due to poor gut health. I went gluten free and started probiotics. I already ate healthy (ie v.little processed food and no rubbish). I also fast every day and start eating when I'm hungry no earlier than 1130am sometimes really late in the day. I have recently started mouth taping for a good night's sleep and have been amazed at the difference in quality and quantity of my sleep.

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