thyroid misery

Emme

Chemical Byrne wrote: »

Hello again,

My gf was over at the weekend and I brought up the subject of her condition as I have decided that I want to help her through it. We talked through what it means for her. It's Hashimoto disease, the autoimmune form of hypothyroidism. She is taking hormone replacement tablets daily to treat it. Now as I said before, she is fine really and is very active and out and about like anyone. She says she doesn't think about it much and she is normally herself with just some minor inconveniences and the occasional day where she feeling sluggish and feels the cold more.

She said the endocrinologist she saw a few years ago told her to get a food allergy test to gluten done as even a slight gluten sensitivity, while not in itself sufficient to cause noticeable digestive problems, may trigger or aggravate the autoimmune response of Hashimoto's resulting in inflammation and scarring. She never got the test done.
Apparently on further reading the gluten protein molecule is similar in structure to some protein molecules in the thyroid's cells so when the immune system erroneously attacks the gluten which it senses as a pathogen it erroneously also identifies the similar proteins of the thyroid's cells as gluten and foreign and attacks those tissues accordingly.

I was thinking of encouraging her to either rule in or rule out the gluten sensitivity by going for the test and if it looks positive, actively helping her to create a GF diet that she would be happy with and see how or if it will help her. At the moment I'm thinking I could buy gluten free foods to use to make GF meals for her when she's over which is usually 2 or maybe 3 times a week.

The thing is though, she's didn't seem to give a whole lot of thought to what the endocrinologist said about it and seems to be fixating on hormone replacement tablets to treat the symptoms of her damaged thyroid rather than modifying her diet and lifestyle to help give her glad a chance at some sort of partial recovery from the damage, or at least slow down and minimise further damage. Of course it is no silver bullet for the disease but I feel it is worth trying at least as it might offer some ability to slow or stop its progression. Likewise, an over reliance on synthetic hormones might be suboptimal too. I am more than willing to assist in putting together a GF but no less palatable diet for her, even if that means me getting and preparing stuff for her.

I think I'm worried she could accelerate the damage and eventually the hashimoto's would completely destroy her gland if she doesn't follow a diet for the condition. From what I've read at least, treating the condition solely by using hormone replacement to effectively circumvent the gland's function is a bit of a hit or miss exercise at best, potentially with a lot of side effects.

Another thing is she also uses hormonal contraceptives. Now from what I've read the hormone in most contraceptives has a high affinity for T hormones, binding to them readily and reducing their bioavailability for use in tissues thus exacerbating the symptoms of hypothyroidism. That she feels the need to use birth control is sort of beyond me to a degree as, although we often sleep together, we don't have sex

I fully realise that all of the above is her decision at the end of the day and I certainly don't want to be seen as pestering or making a nuisance of myself so I'm careful to approach it in a tactful and sensitive manner that seen as positive rather than annoying.

My doctor advises anyone with a thyroid condition to avoid gluten. I avoid gluten for this reason.

It's your girlfriends choice if she wants to use birth control. She may have heavy periods and the contraceptive pill helps. At the end of the day how she deals with her hashimotos is up to herself and her doctor/endocrinologist. If you want to stay with her and help her good for you but as long as she is healthy and active it's no big deal.

Check out Dr Mary Shomon - your girlfriend might know about her already.

Finally, stress can exacerbate Hashimotos so if you want to stay with this girl don't keep on at her about her condition. Just be supportive of her.

The_Conductor

Chemical Byrne wrote: »

I fully realise that all of the above is her decision at the end of the day and I certainly don't want to be seen as pestering or making a nuisance of myself so I'm careful to approach it in a tactful and sensitive manner that seen as positive rather than annoying.

Why are you insisting on approaching it- at all?
No matter how tactful or sensitive you think you're being- if you're like you've posted here- at very best you come across as incredibly controlling and manipulative- wanting to influence what she is doing and how she manages her condition.

As conditions go- it is reasonably easy to manage. You've obviously gone on a binge reading things on the internet and have freaked yourself out. If you start reciting all that you've posted here back to her- you will come across as a complete and utter control freak.

Why do you feel you have to make a big deal out of it. She is obviously managing her condition herself. Why do you feel that its your place to start dictating these things to her?

Chemical Byrne

Of course I'd never pressurise her on any of it or anything else for that matter. I'm just politely making the suggestions and offering to help but I fully acknowledge that it is totally her decision(s) to make at the end of the day. Whatever decision she might make I will fully respect and say no more.

The pill being for heavy periods thing did cross my mind but it just struck me as being odd because a) we don't have sex and b) it's well known to interfere with thyroid hormones and is not recommended for hypo patients. Her decision though either way....

The_Conductor

Its not a case of 'pressurising' her- its why are you bringing these things up?
If my other half went nuts reading up on Crohn's- and the diet I should be following- and what medication I should or shouldn't be on- etc etc etc- and then thought it was a wonderful idea to start discussing all her findings with me- we'd have a blazing argument and I swear I wouldn't talk to her again until she apologised for her behavior. It is not your place to dictate these things to her.

Do you realise how you're coming across?

Chemical Byrne

Well yeah, from my posts here I know I probably come across to ye as a bit frenzied & manic about the whole thing so I fully understand what you're saying TC. I suppose I'm just trying to get all my thoughts down here, mental vomiting if you will.

No, I'd never launch the type of monologues I've written here at her verbally, that would be bonkers.
I just asked the question since she briefly touched on the subject before and I might offer help and support for it if she wants, well and good either way if she wants to try it or leave it. I'm certainly not going to bug her or be a nuisance about it. And yeah, stressing out your gf is never a good idea, Hashi or no Hashi .

lovelystuff

Chemical Byrne wrote: »

Well yeah, from my posts here I know I probably come across to ye as a bit frenzied & manic about the whole thing so I fully understand what you're saying TC. I suppose I'm just trying to get all my thoughts down here, mental vomiting if you will.

No, I'd never launch the type of monologues I've written here at her verbally, that would be bonkers.
I just asked the question since she briefly touched on the subject before and I might offer help and support for it if she wants, well and good either way if she wants to try it or leave it. I'm certainly not going to bug her or be a nuisance about it. And yeah, stressing out your gf is never a good idea, Hashi or no Hashi .

I really think you need to back off here a little. Her contraception is her decision, it's nothing to do with whether she is sexually active or not, as the pill has many uses. You'd want to be careful you don't come across as blaming her for her condition by going on about gluten free etc. I'm gluten free but only because gluten wrecks my stomach. If my oh was on at me the way you seem to be i would be telling him to back off, especially considering you were thinking about breaking up with this girl only a few days ago.

RentDayBlues

Chemical Byrne wrote: »

Hello again,

My gf was over at the weekend and I brought up the subject of her condition as I have decided that I want to help her through it. We talked through what it means for her. It's Hashimoto disease, the autoimmune form of hypothyroidism. She is taking hormone replacement tablets daily to treat it. Now as I said before, she is fine really and is very active and out and about like anyone. She says she doesn't think about it much and she is normally herself with just some minor inconveniences and the occasional day where she feeling sluggish and feels the cold more.

She said the endocrinologist she saw a few years ago told her to get a food allergy test to gluten done as even a slight gluten sensitivity, while not in itself sufficient to cause noticeable digestive problems, may trigger or aggravate the autoimmune response of Hashimoto's resulting in inflammation and scarring. She never got the test done.
Apparently on further reading the gluten protein molecule is similar in structure to some protein molecules in the thyroid's cells so when the immune system erroneously attacks the gluten which it senses as a pathogen it erroneously also identifies the similar proteins of the thyroid's cells as gluten and foreign and attacks those tissues accordingly.

I was thinking of encouraging her to either rule in or rule out the gluten sensitivity by going for the test and if it looks positive, actively helping her to create a GF diet that she would be happy with and see how or if it will help her. At the moment I'm thinking I could buy gluten free foods to use to make GF meals for her when she's over which is usually 2 or maybe 3 times a week.

The thing is though, she's didn't seem to give a whole lot of thought to what the endocrinologist said about it and seems to be fixating on hormone replacement tablets to treat the symptoms of her damaged thyroid rather than modifying her diet and lifestyle to help give her glad a chance at some sort of partial recovery from the damage, or at least slow down and minimise further damage. Of course it is no silver bullet for the disease but I feel it is worth trying at least as it might offer some ability to slow or stop its progression. Likewise, an over reliance on synthetic hormones might be suboptimal too. I am more than willing to assist in putting together a GF but no less palatable diet for her, even if that means me getting and preparing stuff for her.

I think I'm worried she could accelerate the damage and eventually the hashimoto's would completely destroy her gland if she doesn't follow a diet for the condition. From what I've read at least, treating the condition solely by using hormone replacement to effectively circumvent the gland's function is a bit of a hit or miss exercise at best, potentially with a lot of side effects.

Another thing is she also uses hormonal contraceptives. Now from what I've read the hormone in most contraceptives has a high affinity for T hormones, binding to them readily and reducing their bioavailability for use in tissues thus exacerbating the symptoms of hypothyroidism. That she feels the need to use birth control is sort of beyond me to a degree as, although we often sleep together, we don't have sex

I fully realise that all of the above is her decision at the end of the day and I certainly don't want to be seen as pestering or making a nuisance of myself so I'm careful to approach it in a tactful and sensitive manner that seen as positive rather than annoying.

I'm quoting your entire text because everything I've read here terrifies me, I'm terrified for your poor girlfriend!

She has an autoimmune condition that is very treatable, she has decided to treat it using her consultant prescribed course.

Your response to her telling you about this has been obsessive compulsive to say the least and comes across as domineering. First of all you want to dump her as you don't want to deal with it, now you want to dictate her diet and choice of contraceptive based on your reading of Dr Google? You are not coming across as supportive, and for her benefit please end this relationship, I cannot imagine how you would react if she ever got ill and needed real support.

Supportive is being informed on her condition and being there if she needs to talk. It's not deciding to put her on a gf diet and advising her how to treat the condition

lovelystuff

Totally agree RentDayBlues. You do realise chemical Byrne you were planning on breaking up with her last week? And now you're questioning her own personal decision regarding contraception and diet? All I can say is i wouldn't put up with that. Illnesses can be hard enough to deal with without the kind of drama you're bringing to it. I feel you're being very controlling and judgemental.

Lumps Bumps n Blues

CB, would you not think that when your girlfriend found out about her condition she also read up as much as she could about it and asked as many questions as she could, and might have had a lot more time to think about it that you have? She'll likely know way more than you do about her condition. I'm sure your girlfriend is perfectly able to make her own decisions regarding her own health, and if she needs help she'll ask - you, or anyone else, it's up to her.

I'm sure you mean well, but imagine someone saying to you 'I'm thirsty' and you replying 'You cannot possibly be thirsty, you must be hungry, here, have a cracker or a slice of dry toast'. How would that feel? So I'd suggest that rather than saying 'Here, I'll help you, DO THIS', if you want to support her you should really ask HER what she needs from you.

Chemical Byrne

Of course, I see what ye are saying folks, I know my posts come across as over the top and frenzied about it. I am certainly not, and never had any intention, of pontificating or launching any broadsides at her with regard to her health - as you say that would be mental behavior and it would be her breaking up with me. The above is just like a transcript of what runs through my mind at times. I suppose my posts are me thinking out loud.

I'm just saying that I'd be willing to help and support the girl with whatever choices she makes and wouldn't mind if I had to do a bit of work to help her out. If she's not interested, fine - I'll say no more about it and leave as is.
As I've repeatedly said, I'm not going to bug, pester or annoy her about anything. That would be counterproductive in a big way.

I feel I'm damned if I do and damned if I don't. Damned if I'm overwhelmed by learning of the condition and don't think I can deal with and damned if I want to make an effort to help her out. I'm only trying to do the right thing here to do my bit for her to be happy and healthy. I don't want to do anything that would jeopardise that.

Wyldwood

Chemical Byrne, you're coming across to me as someone who is in a blind panic. You said you were beginning to fall for this girl before she mentioned her Hashis (I wonder was it said on a day when she was feeling under par rather than an announcement of illness?).
You need to step back and put the Hashis out of your mind, your girlfriend is under the care of an endo and is getting the best advice whether she decides to follow it or not. Look at the relationship with this girl and decide whether you would have gone further with it if you didn't know about the Hashis. Don't define her by her illness.
In your first post you came across as looking for an excuse to end it but now you seem to be on a Florence Nightingale mission, you seem to be treating her almost like a project, not a good basis for a longterm relationship.
To the vast majority of sufferers Hashis is a minor inconvenience well controlled by medication. It's the minority who have difficulty that come to forums like this to discuss things.

Simon_K

I asked around and the basic thyroid test seems to be around 100 euros...Anywhere I can get it cheaper? And if not, what's the most reliable place? I need FT4,TSH and anti-TPO.

Lumps Bumps n Blues

I don't know if things have changed, but I got them for free at my GP's. If that route isn't viable, you might want to check with your health insurance, if you have one, to see whether they'd cover some of the costs.

Amazingfun

Simon_K wrote: »

I asked around and the basic thyroid test seems to be around 100 euros...Anywhere I can get it cheaper? And if not, what's the most reliable place? I need FT4,TSH and anti-TPO.

Contact St. James hospital. What you mention above is less than 50 euros

Simon_K

Do I need GP's letter? Who do I need to contact in St. James Hospital? Sorry, I'm totally confused by Irish healthcare.

Lumps Bumps n Blues

Sorry Simon, I wasn't clear in my other post - what I meant was that my GP asked the nurse to take my blood and it was brought to hospital for testing. So, aside from the GP's fee, I didn't have to pay for my tests.

St. James's Hospital probably does them for you directly and they charge you accordingly - I wouldn't know their set up/procedures/rules as I was based in the West, not in Dublin.

Chemical Byrne

Wyldwood wrote: »

Chemical Byrne, you're coming across to me as someone who is in a blind panic. ......

I suppose I am but I'm beginning to come to grips with it. I suppose I am just afraid that the damage could continue with the medication masking it and she could end up being very sick in future. I accept that I need to relax about it, I'm beginning to see that most cases are successfully treated, I've been fixating on the minority of horror cases and scaring the crap out of myself.

Amazingfun

Simon_K wrote: »

Do I need GP's letter? Who do I need to contact in St. James Hospital? Sorry, I'm totally confused by Irish healthcare.

Yes you will need a referral from your GP. But make sure you ask first if that panel you mention can be got for free by your local blood testing facility.

The reason I recommend St. James is because they will test FREE T3 and FREE T4 which is not always done by others. Now the panel including the FREES is about 75 euros I believe. I don't know how much you've read about thyroid but it's very important we get the frees tested. I self treat with NDT and this is how I monitor my progress. St. James is the cheapest around.

Simon_K

I've been told that I'd need FT4,TSH and anti-TPO done as a basic check to see whether I have under/overactive thyroid (If possible, FT3 as well)

GP referral costs 50 euros (as I need to pay for the visit), so I was wondering if
a) I can skip that and go directly to the facility, even if it costs extra
b) get the tests done at GP's office

So St. James requires a GP's referral... Any way to circumvent that? Also, is this what I'm supposed to be looking for?

http://www.stjames.ie/GPsHealthcareProfessionals/GPBloodTesting/


Also, I noticed the following:

Only GP Referral letters/Request forms will be accepted from patients in the following catchment areas
Dublin 2, 6, 8, 10, 12, 14, 16, 20 and 22
Patients living in Lucan, Leixlip, Celbridge and Maynooth.

I live in Dublin 7, does that mean I can't go to St. James'?

Emme

Simon_K wrote: »

I've been told that I'd need FT4,TSH and anti-TPO done as a basic check to see whether I have under/overactive thyroid (If possible, FT3 as well)

GP referral costs 50 euros (as I need to pay for the visit), so I was wondering if
a) I can skip that and go directly to the facility, even if it costs extra
b) get the tests done at GP's office

So St. James requires a GP's referral... Any way to circumvent that? Also, is this what I'm supposed to be looking for?

http://www.stjames.ie/GPsHealthcareProfessionals/GPBloodTesting/


Also, I noticed the following:

Only GP Referral letters/Request forms will be accepted from patients in the following catchment areas
Dublin 2, 6, 8, 10, 12, 14, 16, 20 and 22
Patients living in Lucan, Leixlip, Celbridge and Maynooth.

I live in Dublin 7, does that mean I can't go to St. James'?

You need a slip of paper from your GP ordering the tests. You also need to make an appointment with St James's for the tests.

Amazingfun

Simon: I just contacted St. James and was told to call this number between 2-4 pm 01-2914516

Simon_K

Thank you, I didn't have time today but I'll call them tomorrow

Chemical Byrne

I notice she seems to stumble now and again when we are going for walks. Apparently poor ankle reflexes are a sign of hashi's. I'm not going to say anything but was just wondering if any of you suffer ankle problems too? Would this be a sign of worsening or is it a common or rare occurrence? Would it be caused by the autoimmune action of hashi's or would it be moreso directly related to hormone levels?
I'm not going to bring it up or say anything but I just hope that she is getting the right tests and on the right meds at the right dose. She gets tests but I do not know whether they are only TSH or more broad spectrum for T3/4 too. I know TSH can be a bit misleading. For someone with mild, controlled symptoms what sort of testing is typically done?

Wyldwood

Chemical Byrne, please let this girl go and have a life with someone who won't be obsessed with her hypothyroidism. Your attitude is far from healthy.

Chemical Byrne

I'm not obsessed by it, I just want to learn as much as I can about it and be well informed. Surely that is more healthy than being blissfully ignorant or dismissive of it!

I don't drone on to her about it or anything, I think we only mentioned it twice and both times it was she that instigated the convo. As I repeatedly said, I'm on no mission to make a nuisance of myself over it.

lovelystuff

Chemical Byrne wrote: »

I'm not obsessed by it, I just want to learn as much as I can about it and be well informed. Surely that is more healthy than being blissfully ignorant or dismissive of it!

I don't drone on to her about it or anything, I think we only mentioned it twice and both times it was she that instigated the convo. As I repeatedly said, I'm on no mission to make a nuisance of myself over it.

Being healthily informed is one thing. People in my life are healthily informed in that they recognise that sometimes I get tired. They don't try and take me off birth control or prescribe a diet or enquire what my (expert) consultant does.

The_Conductor

Chemical Byrne wrote: »

I'm not obsessed by it, I just want to learn as much as I can about it and be well informed. Surely that is more healthy than being blissfully ignorant or dismissive of it!

I don't drone on to her about it or anything, I think we only mentioned it twice and both times it was she that instigated the convo. As I repeatedly said, I'm on no mission to make a nuisance of myself over it.

The questions you're mentioning here- would indicate a complete and utter obsession with hyperthyroidism. Its not healthy for you- and if you bring up even a tiny amount of what you've discussed here with her- with her either.

Chemical Byrne

lovelystuff wrote: »

Being healthily informed is one thing. People in my life are healthily informed in that they recognise that sometimes I get tired. They don't try and take me off birth control or prescribe a diet or enquire what my (expert) consultant does.

Lets be clear here, I did not at any point, nor am I about to, try to force her off either her medication or her contraceptives. Neither am I attempting to foist any particular diet on her nor am I trying to dictate any particular course of action. (i just thought being on the pill was peculiar since we are not sexually active, I didn't realise it had other common applications). If I did any of that I would have long since gotten the boot, and rightly so I might add.

We've been together several months, conversation about it has amounted to 2 or three minutes all together.

You seem to make me out as some kind of deranged control freak looking to dictate her every action. This is new to me and all I am just trying to do is understand it from all angles.

lovelystuff

Chemical Byrne wrote: »

Lets be clear here, I did not at any point, nor am I about to, try to force her off either her medication or her contraceptives. Neither am I attempting to foist any particular diet on her nor am I trying to dictate any particular course of action. (i just thought being on the pill was peculiar since we are not sexually active, I didn't realise it had other common applications). If I did any of that I would have long since gotten the boot, and rightly so I might add.

We've been together several months, conversation about it has amounted to 2 or three minutes all together.

You seem to make me out as some kind of deranged control freak looking to dictate her every action. This is new to me and all I am just trying to do is understand it from all angles.

All I can judge it on is how you come across here on this thread. You started this time last week saying you were thinking about breaking up with her as you didn't want to deal with it. Now you've gone the complete opposite way and are trying to find out everything about it,bringing up your questions about why she takes the pill and thinking you should make her gluten free meals at your house. I would advise that you calm down as you have gone from thinking about ending the relationship to stressing about about how to fix an unfixable autoimmune disease. I won't argue with you you can obviously do whatever you want, but if you come on a thread the way you have, you need to be prepared to hear our opinions and experience, take it or leave it.

Lumps Bumps n Blues

Chemical Byrne wrote: »

The above is just like a transcript of what runs through my mind at times. I suppose my posts are me thinking out loud.

I'm just saying that I'd be willing to help and support the girl with whatever choices she makes and wouldn't mind if I had to do a bit of work to help her out. If she's not interested, fine - I'll say no more about it and leave as is.

I feel I'm damned if I do and damned if I don't. Damned if I'm overwhelmed by learning of the condition and don't think I can deal with and damned if I want to make an effort to help her out. I'm only trying to do the right thing here to do my bit for her to be happy and healthy. I don't want to do anything that would jeopardise that.

Chemical Byrne wrote: »

I suppose I am just afraid that the damage could continue with the medication masking it and she could end up being very sick in future.

Chemical Byrne wrote: »

I notice she seems to stumble now and again when we are going for walks. Apparently poor ankle reflexes are a sign of hashi's. I'm not going to say anything but was just wondering if any of you suffer ankle problems too? Would this be a sign of worsening or is it a common or rare occurrence? Would it be caused by the autoimmune action of hashi's or would it be moreso directly related to hormone levels?
I'm not going to bring it up or say anything but I just hope that she is getting the right tests and on the right meds at the right dose. She gets tests but I do not know whether they are only TSH or more broad spectrum for T3/4 too. I know TSH can be a bit misleading. For someone with mild, controlled symptoms what sort of testing is typically done?

Chemical Byrne wrote: »

You seem to make me out as some kind of deranged control freak looking to dictate her every action. This is new to me and all I am just trying to do is understand it from all angles.

CB, I've taken some excerpts from your posts and I'll be using capital letters because I cannot highlight parts of the texts, I probably don't have enough posts yet.

On one hand you're saying you don't want to seem to be overbearing towards her, and on the other you're QUESTIONING -not 'wondering'- if she's getting the correct tests done, if every single thing that happens is down to the disease, and you do seem to be fixated with her hormone levels. You're saying that all of this goes through your head and that you're kind of thinking out loud. I'd like to say this as gently as I can, knowing that we cannot properly express a tone of voice in writing, but what do you hope to achieve? Why do you NEED to know all this? I urge you to remember that it's HER condition, and HER decision on how to take care of it, not yours. Gathering information and trying to learn about hypothyroidism is commendable, but trying to find out every single teeny tiny thing about it is almost obsessive. This is not about you. I doubt you'd be reading up as much as this about it if you were preparing for an endocrinology exam at college... For both yours and your girlfriend's sake, please loosen the grip and take a step back.