Don't want to be touched - hypothyroidism - Thyroid UK

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Don't want to be touched - hypothyroidism

BillyParsnip3 profile image
18 Replies

Hi all

My girlfriend is undergoing investigation for hypo and says that she doesn't want to be cuddled, touched etc. She is tired a lot and is suffering from anxiety & depression at times as well as menstrual problems as well as many other typical problems. We have 3 kids and have been together for 12 years. Does not talk to me about things -says that she wants to block them out.

I don't know what to do - feel like I'm being pushed away and all I want to do is help.

Any advice gratefully accepted as it is making me very anxious indeed, as well as very jumpy.

Is this a usual hypothyroidism issue?

Many thanks for reading.

Billy

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BillyParsnip3
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18 Replies
Greybeard profile image
Greybeard

Hi Billy, she probably feels like crap most of the time and is exhausted as well, you need to be patient mate, once they sort out her thyroid levels she will be more like her old self.

Hillwoman profile image
Hillwoman

I agree with Greybeard63. Hang in there BillyParsnip3, it may take a while for your partner to feel better. If you can find a way of directing her to this forum for extra advice, or you can persuade her to take advice that you glean here on her behalf, she will regain her health quicker than relying on the NHS alone (assuming you're in the UK).

Try not to take your partner's behaviour too personally, as it's part and parcel of dealing all day, every day, with feelings of profound illness and exhaustion. She may also be wondering whether she will ever again be the person she used to be. You may find yourself having to take on roles that you never expected, and that can be very tough indeed. Come here any time you need specific advice, or whenever you just need to vent.

Peanut31 profile image
Peanut31

Hi Billy

As the other two replies have said she will be feeling awful.

I recently (March) started on levo after 18 months of hell, I had depression, anxiety, tearful, lost of libido, hair loss, neck and muscle stiffness, freezing cold all the time, exhausted despite having a good nights sleep, brain fog (nothing made sense) everything was an effort.

I would often go supermarket shopping and wondered what the hell I needed, and, or lose the shopping list I had made. Everyday tasks became difficult to do.

It's hard for those around you, as obviously, they want you to get better. Some of my family members thought a cream cake and a cup of tea would help, or a holiday. Tried both and they don't work. Your girlfriend has a medical condition.

You need to support her as much as possible, maybe help with household chores? I had no energy at all, even having a shower and drying my hair was a major task.

I couldn't focus on anything no matter how hard I tried. My husband came to every GP/Endo appointment with me, so he could take in the information, I was like a zombie incapable of taking things in, it was handy for him to come with me as he wouldn't be fobbed off.

I always told my husband how I was feeling as I was happy to chat to him, but, others deal with things differently, don't take it to heart.

I did become a recluse slightly, as I just didn't want to meet friends for coffee and wanted to stay at home in my PJ's away from the world.

I had a long journey to get to where I am now.

I paid privately to see an Endo, (list provided here) he tested all my vitamin levels, B12, iron vitamin D, as if they are low this could be one of the many reasons for feeling awful.

They all came back very low so I was started on a high does of vitamin D (40,000 IU) a week and started taking a gentle iron tablet and increase iron rich foods. I also tested positive for Hashimotos and a scan confirmed this.

Anyway, to cut a very long story short, it became clear that this Endo was not as good as hoped, I spent hundreds of pounds on very little progress.

I even paid for private bloods on all thyroid but, he didn't look at them. He tried to give me anti depressants, which I refused to take and told me to go on a long holiday.

This is when I turned to this and another forum for advice. As I had Hashimotos it was advised to go gluten and dairy free. I did this and it helped, I took all the advice on here.

When I asked the Endo if I could try Levothyroxine, he said no medication would help me, needless to say I didn't waste any more money on him.

I got worse as time went on, and went to the GP at Christmas, I took hubby. The GP said it was anxiety and how could she help if my Endo refused to prescribe anything. My husband just grabbed my hand and said we are leaving.

We left it a few weeks and still feeling awful, I managed to see my allocated GP. He took one look at me and said we are ordering all thyroid bloods for you. Within days I got a telephone call from the surgery to say I needed to see my GP as soon as possible. I was able to access my results on line (another tip from here) and I just burst into tears, everything was out of range and had got worse.

My TSH was 12.2. The GP said no wonder I felt crap (his words) he was cross at the Endo as said he could of prevented me getting worse by giving me Levo.

However, I have learnt that until your TSH goes over 10 many will not treat you, so your girlfriend may also experience this.

I started 50 mcg of levo and I am now on 75mcg, I've just had another blood test ready for an increase. bloods should be taken every 6 weeks for an increase) I'm not 100% better, but, I do feel better.

when your girlfriend has the tests make sure they are as early as possible in the morning and only drink water no food.

you need the following bloods test:

TSH

FT4

FT3

TGAb (antibodies test this will confirm if an auto immune issue)

TPOAb (again as above)

Vitamin B12, Folate, Vitamin D, Ferritin

If the GP will not do all of those, Medi checks and blue horizon do those, you can either visit a hospital on there list, or arrange a nurse to come to your home to take bloods (may not be early morning) or take a finger prick sample

Do as much research as possible, make sure you obtain the full blood results including lab ranges, I was recently fobbed off by the receptionist when I couldn't access my results on line that they were 'normal' they were NOT.

Your girlfriend is entitled to a copy of your results, and from my understanding in the next few days surgeries can no longer charge you for the results.

Post the results on here with ranges and the experts will help.

You have to educate yourself on this, as you will find the experts don't know as much as they think they do , I'm just speaking from my own experience, hopefully your experience will be different.

Best Wishes

Peanut31

BillyParsnip3 profile image
BillyParsnip3

Thanks so much for your time. So kind.

Fruitandnutcase profile image
Fruitandnutcase

I agree with what the others have said, take a look at the hypothyroid part of this letter it will give you an idea of how rubbish your girlfriend is feeling. Like the others have said - just hang in there, it’s nothing personal, she’ll most likely be feeling terrible. I was retired when I got I’ll and my kids had left home plus my other half did the shopping and housework - I just can’t imagine how people cope with little children and / or a job. I did very little apart from sleep and I still felt rubbish until my thyroid medicines kicked in and my body got back to normal.

Some people want to talk about how rubbish they feel - that’s me! Whereas I’ve got a close friend who is just like your other half. I find it hard to understand hiw she can be like that. I believe in a trouble (or a condition) shared etc but I’m sure my friend probably thinks I’m weird for being the way I am because I always want to know as much as I can - be it bad or good - and leave no stone unturned in my quest for health.

Good luck to both of you though. She’s very lucky that you care.

verywellhealth.com/when-you...

BillyParsnip3 profile image
BillyParsnip3 in reply to Fruitandnutcase

Thanks so much for your support.

shaws profile image
shawsAdministrator

I am sorry your girlfriend seems to be pushing you away at present.

Hypothyroidism is thought by the medical profession to be 'easy and simple' to treat but they don't know half of the suffering of the mainly females who have been diagnosed with it.

Just a quick look at the symptoms in the link below will enable you to realise that until we are on an 'optimum' dose of thyroid hormones to relieve ALL of the symptoms and make us feel well again.

Doctors prescribe us with levothyroxine which is a synthetic hormone called T4.

Our healthy body produces T4 and T3 (levothyroxine and liothyroinine) and the replacement given is T4 alone (inactive hormone) . This has to convert into the Active thyroid T3 (liothyronine) and then to enter into our millions of T3 receptor cells otherwise our body cannot function normally. Our brain and heart need the most T3 and sometimes we cannot convert T4 effectively to T3.

Some people are so unwell that they don't want to live as they cannot believe we can recover and, as I said, most doctors or endocrinologists aren't sympathetic. That's why we have to many members on this forum. We didn't improve as we should.

Thousands do fine on levothyroxine when it is at an optimum but many also don't are are extremely unwell.

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

If she has thyroid antibodies in her blood she will have an Autoimmune Thyroid Disease, the commonest form of hypothyroidism but treatment is the same. The antibodies attack the thyroid gland and sometimes too much which makes you feel hyper and at other times low.

Due to the fact that we look o.k. most people don't understand that it is all internal.

The procedure your girlfriend should follow and I bet she's not been told (GPs or anyone else seem not able to help).........

Blood tests - always the very earliest possible and fasting (she can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwads. This keeps TSH at its highest. TSH is highest then and drops throughout the day and may prevent the GP giving an increase.

She should request B12, Vit D, iron, ferritin and folate at the next test.

Your girlfriend is very unwell with many symptoms and she can tick off the ones she has on the link above.

If we weren't improving T3 was added to T4 but the NHS has recently stopped prescribing T3 because the pharma company increased price astronomically.

We are trying to get in reinstated.

thyroiduk.org.uk/index.html

BillyParsnip3 profile image
BillyParsnip3 in reply to shaws

Thanks so much for replying!

humanbean profile image
humanbean

I can empathise and agree with the comments above. I remember when I was at my worst that even my skin hurt. Also, it isn't obvious when you are well, but even talking and listening and understanding what is being said to you requires energy. And with low thyroid hormone levels you have none.

One effect of hypothyroidism is that the gut is often severely affected. Since the gut requires energy to function and hypos don't have it, they often end up with low stomach acid, slow digestion, huge problems with constipation (although diarrhoea can also occur occasionally). This deranged digestion means that people end up with very low levels of nutrients. Finding out which minerals and vitamins are low and supplementing appropriately can make a huge difference to the hypo person.

You might like to read these lists of symptoms that have been reported by people who are hypothyroid - nobody gets them all though :

Short list : thyroiduk.org/tuk/about_the...

Long list : hypothyroidmom.com/300-hypo...

BillyParsnip3 profile image
BillyParsnip3 in reply to humanbean

Thanks so much for this!

lc1973 profile image
lc1973

Hi BillyParsnip3

I think its very understanding of you to consider what your girlfriend might be going through. As a sufferer myself with hypothyroidism i can understand what she is going through too physically and mentally and i'm sure she isnt shunning you deliberately. Wish more partners were understanding or even bother to ask if that might be the reason. Hang on in there..might take a while... especially as she is trying to get a diagnosis

BillyParsnip3 profile image
BillyParsnip3 in reply to lc1973

Thanks so much for taking the time

BillyParsnip3 profile image
BillyParsnip3

Things got even worse last night. Said about a dozen words to me all evening and couldn’t even give her a hug. She slept for a couple of hours after work and just messaged a few friends. This is eating me up from the inside...

Hillwoman profile image
Hillwoman in reply to BillyParsnip3

Just be there for her, and at some point she may want to talk things through with you. From personal experience, I can say that in the intial bewildering days/months of illness, it can be easier to chat with people who aren't so close to your problems.

Please don't take any of your partner's behaviour personally, though I realise that is easier said than done just now. You may want to explore the idea of personal counselling to help you cope with your changed circumstances.

BillyParsnip3 profile image
BillyParsnip3 in reply to Hillwoman

Appreciate it. Thank you.

Caesard profile image
Caesard

I would assume, based on own, past experience, that this is hypothyroidism induced depression, deriving from both the chemical unbalance this disease creates at brain level and the overall suffering it provides via lack of energy, deprivation of vitality, being cold, sick, unable to function on various levels.

I got lucky at some point realising that person manifesting it wasn't me and that's when I have found this site. Basically that conclusion fuelled my struggle to try getting better and take matters into own hands. Again, luckily enough, I've found some initial relief in alternative treatment (a larger dose, introducing T3) and build on that hope and results to a consistently a good shape.

But I've felt depression and I can tell you it's a cold thick blanket under which the sunshine barely gets...

I would recommend to support her and guide her to fight it, it's always easier with outside help, as long as you let that being her fight.

Counselling should also help, as there is usually more than hypothyroidism induced depression in there.

Best way to help, i think, is staying strong, truly supportive, in her own terms (limitative as they are) while making sure she's fighting for getting better.

BillyParsnip3 profile image
BillyParsnip3 in reply to Caesard

Thanks!

Caesard profile image
Caesard in reply to BillyParsnip3

Oh, one more thing I've forgot to mention....I'm a guy, and therefore I can imagine/relate to this not being easy for you....

On the same level I can appreciate your courage to fight for it, supporting your wife in this, you have my respect for that.

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