Newbie having a tough time. : Hi, I'm new. I need... - Thyroid UK

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Newbie having a tough time.

Roda21 profile image
22 Replies

Hi, I'm new. I need this group as my husband just doesn't understand my condition. I am having a tough time and I'm sure my meds are needing upped. I am really struggling with everything right now.

Seriously considering the single parent life but not sure if it's me or my condition talking in my head 😞 I've an appt with my doc coming up so hopefully I will be feeling better soon.

I'm 3 1/2 years diagnosed and take 125mcg Levothyroxin daily.

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Roda21 profile image
Roda21
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22 Replies
Raventhorpe profile image
Raventhorpe

Hi Roda21 it's very difficult when your feeling like crap and family really can't understand how you feel, they can sympathise but unless you have had thyroid problems then you don't know what it's like.if your feeling symptomatic suggest you get a bloodtest done and post on here for advice. Good luck with gp appointment

SeasideSusie profile image
SeasideSusieRemembering

Roda21 For members to be able to comment on whether you need an increase in your dose you need to post your latest thyroid test results with their reference ranges, eg

TSH: 2.5 (0.2-4.2)

FT4: 15 (12-22)

FT3 - if tested

Thyroid antibodies - if tested

And if you've had vitamins and minerals tested, post those too ie

Vit D

B12

Folate

Ferritin

All those need to be at optimal levels (not just in range) for thyroid hormone to work properly.

SeasideSusie profile image
SeasideSusieRemembering

Also, for levo to be absorbed properly, it needs to be taken on an empty stomach, one hour before food or two hours after, with a glass of water only, and away from other medication and supplements.

When having thyroid tests, always book the very first appointment of the morning, fast overnight (you can have water), and leave off Levo for 24 hours. That way TSH is highest which is what you need when looking for an increase in dose or to avoid a reduction.

Roda21 profile image
Roda21

Thank you for the replies, i will get bloods done and see where i am. Take it from there.

shaws profile image
shawsAdministrator in reply toRoda21

Welcome to our forum and most of us have 'been there - done that' but I am sorry that your husband doesn't understand what it is like to be hypothyroid. Even doctors do not understand so others who have good health find it difficult especially when the person is being treated with replacement hormones and still complaining.

Make a new appointment and it must be the very earliest time possible, and fast although you can drink water. Also allow a 24 hour gap between your last dose of levothyroxine and the test and take afterwards. This gives us the best possible result and may stop the doctor for adjusting our dose of levo unnecessarily.

It would be good if your GP can do a Full Thyroid Function Test but sometimes labs wont if TSH is in range but you can have a private one if you can afford it but it is worth it especially if you only get a Free T4 and Free T3 blood test. We have recommended labs that are reasonable.

Tell your GP you have taken advice about your hypothyroidism from the NHS Choices for information/advice Thyroiduk.org.uk.

Test, TSH, T4, T3, Free T4 and Free T3 and thyroid antibodies. Vitamin B12, Vit D, iron, ferritin and folate. We are usually deficient and that can cause symptoms. B12 and Vit D are prohormones so are very essential to be towards the top part of the range.

Don't worry about feeling everything is getting on top of you as that's usually what happens when we're not on sufficient dose etc. So we have to read, learn and ask questions for your own health and we cannot stand stressful events as our metabolism isn't working efficiently. SeasideSusie has given good advice and members will come to your aid as most have been in similar circumstances at one time or even some may be going through it now.

Always get a print-out for your own records with the ranges and post if you have a query.

A person who has hypothyroid means that we do not have the necessary hormones in our body for everything to work properly.

Roda21 profile image
Roda21 in reply toshaws

Thanks a lot for this info. The earliest I can get my GP is another week away, but I'm convinced it is dosage related. I levelled around a year ago, and last 3 months or so have been a gradual slide into the abyss! I've never thought to get print outs of my results, but will be sure to get that this time too. It's something I've never really investigated, tending to just go with the 'experts' opinion. I'm slowly realising how complicated and vital thyroid function is.

shaws profile image
shawsAdministrator in reply toRoda21

As far as 'experts' go, you will find them on here and you can now look forward, in a little while hopefully, to know more than your GP. Some mistakenly believe that if your TSH anywhere in the range (up to 5) that we're on sufficient. They are woefully trained and it's not their fault but it rebounds on the patients. We need a TSH of 1 or lower. So the more you slowly learn the better you'll become. In fact they should pay little attention to the TSH and concentrate on the Free T4 and Free T3 as levo is T4 and is inactive. T3 is the only active hormone required in our receptor cells and if levo doesn't convert efficiently we may be very low in T3. They rarely test the Frees and I'll give you a couple of pages which you can look at in your leisure (if you have any :)

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

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

Roda21 profile image
Roda21 in reply toshaws

Brilliant! This is great, i can go in knowing a little more. I'm so glad i found this forum. I will definitely read up on this.

Roda21 profile image
Roda21 in reply toshaws

Thanks so much x

Hypo is hard on a marriage. Full stop! Sit him down, spell it out, say it's not your choice and you wouldn't wish it on your worst enemy. If you have the energy. Been there, got many t-shirts. Review of bloods and meds an excellent idea and advice. My very best wishes to you.

Roda21 profile image
Roda21

Thank you for your reply and best wishes. i actually found a link for a group on Facebook here on this board, for partners of Hypos. Hope he takes my suggestion of joining! I feel like he really resents me. The lack of sex drive on my part, for him, is proving very difficult. Maybe he can find others dealing with this and will see that I'm not making it up to avoid getting close to him.

cwill profile image
cwill in reply toRoda21

In the many years that I have been ill I have pointed my husband towards all sorts of supportive/info groups or simply suggest that he explore the issue for himself. Outcome big fat zero on his part. He listens to me when I have the energy and am desperate to get some info across but would just warn you that this can be a very long term process. Good luck!

in reply toRoda21

Show him these links and say they are a spit in the ocean of what he can Google for himself so there is an unfortunate need for sufferers to get great, unconditional support. Tell him that you are physically cold not emotionally cold and when your body warms up with treatment you will be more in the mood for closeness. He has to be patient and he is not alone in HIS suffering. Tell him you'll put the kettle on and for him to make himself comfortable, he has a lot of reading to do. Good luck!

twitter.com/share?text=Mayb...

verywell.com/when-your-fami...

theinvisiblehypothyroidism....

stopthethyroidmadness.com/t...

medhelp.org/posts/Thyroid-D...

Roda21 profile image
Roda21 in reply to

These are fab! Thanks so much for this. Very, very helpful x

Roda21 profile image
Roda21 in reply to

Actually that medhelp one could actually be us!

Roda21 profile image
Roda21

Thanks cwill, It's awful, isn't it? 2yrs ago when i was still trying to find the right dose, i was very depressed and sex was off, i didn't know what was happening to me and i found messages about me to a colleague of his saying how horrible I was. I was so hurt by it. Now I'm going through this again and I know he's chatting to her again. Sometimes i just think it'd be easier on myself if i was on my own. But, i see he has joined that fb group, so maybe he will see I'm not just being a cow.

shaws profile image
shawsAdministrator in reply toRoda21

I doubt he'd be happy if you had a 'male' colleague to chat to about his behaviour and husband not realising it is because we're unwell it is our whole body which is affected by too low hormones, not just one part. Once you begin to improve and never accept 'normal' or 'o.k' from doctors who are really only looking at the blood test results. We don't want 'normal' but optimal and there's a big difference between the two.

puncturedbicycle profile image
puncturedbicycle in reply toRoda21

This behaviour is not acceptable. Everyone needs to be able to express themselves but to tell a colleague that you're horrible is not on. Sex or no sex or whatever, if he doesn't like it the issue is between you two, not between him and his mate. A relationship is a partnership, he's not a child complaining how awful his mummy is, what is he doing to improve the relationship?

And he wonders why you don't want to have sex w him...

You don't owe him sex, but if he is unhappy about it then maybe he should save the energy he's putting into chatting w his mate telling her how awful you are and use it to support you and improve his marriage. It would be terrible if something happened to him (illness, accident) and you decided you couldn't be bothered to support him because you weren't getting anything out of the deal.

I strongly suggest you contact Relate, make an appt (there is usually a waiting list but you get to the top of it eventually) and tell him you've made the appt because your relationship needs work. Ideally he will go w you (he may not like the idea of you talking about him when he's not there) but it doesn't matter, you can go on your own, a lot of people do.

Roda21 profile image
Roda21 in reply topuncturedbicycle

Thank you for your response. I know, this is not ideal, but tbh we are just not very good at communicating. This incident happened 2 yrs ago, when I was at my lowest point trying to get my thyroid sorted. I finally confronted him and he apologized and said he didn't realise what i was dealing with. Then everything was fine for a while, but i think i just haven't got over it, now I'm going through this again and there are occasional notifications that this friend is msging him again. But he changed his password so i cant access. It could be perfectly innocent as he still works with her. But of course my imagination just goes Haywire. I know he would never cheat, and he is normally very supportive. I am forwarding on the links to him so hopefully we can start talking a bit more openly about the rather large white elephant in the room.

puncturedbicycle profile image
puncturedbicycle in reply toRoda21

When one partner is ill the other one suffers too, it's true, but the one who is not ill mustn't act as though theirs is the 'real' problem.

I don't think your imagination is the issue here, if he is participating - again - in a relationship that he has used inappropriately to trash you that is a problem. If he is supportive he should understand that.

What is taking place between them and whether or not it is innocent is beside the point, there is a bad history there. It sounds like he values having something you have no access to, that makes you feel excluded and insecure.

I hope you can resolve it, you already have enough on your plate and you need to devote your energies to your own well-being. This can be a long-haul illness. Good luck w your health. :-)

wellness1 profile image
wellness1

Hello and welcome, Roda. I'm sorry you're struggling. You will find lots of info, compassion, and support here. :) Are you familiar with The Hypothyroid Mom website? She has links on it to several articles on how hypothyroidism affects relationships, libido, etc.

hypothyroidmom.com/

Hope you are feeling better soon.

Roda21 profile image
Roda21 in reply towellness1

No Wellness1, I'm not familiar with that website and will definitely check that out. Thanks so much. X

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