Lack of support

[jezebel69]

Its just been suggested by my son that maybe my problems are made worse by learning about my thyroid and how it works on sites such as this. That maybe if I didn't I would 'shrug off' the symptoms.

I feel hurt and unsupported - and if I can't convince him that I'm a completely different person to the one he knew 10 years ago how can I convince the medical profession? I have my third endo appt early March and am hoping to take my husband to this but he's also a chocolate teapot

I'm sure my experience isn't unique so is there a potential gap for an advocacy service?? I know when I go to my appt I'm like a little girl with the headmaster.

[nightingale-56]

We wouldn't have come on this forum if we were feeling good in the first place. This site and some others like it are the only place we know that others with the same problems can offer support. I would say there was definitely a place for an advocacy service. I have a son and a husband exactly like yours. Unfortunately I can see signs of thyroid problems in my son, but he denies this, and no-one is ever as ill as my husband (especially with just a cold). (((Hugs))). We know how you feel, so stay with us. Knowledge and support help you to optimise your healing.

[jezebel69 in reply to nightingale-56]

Thankyou j_bee - you...and others like you....are the reason I'm here

[Hidden]

Hahaha! Is your son planning on becoming an NHS Gp by any chance?

Knowledge is power, educate yourself here and take control of your own health. Do not be held hostage by ignorant, overpaid NHS Gps.

The best thing i ever did was self medicate

[jezebel69 in reply to Hidden]

lol you made me laugh! If he was he could donate for some private blood tests and treatment

[Clutter]

Jezebel, I think your son's comment may be code for "Shut up, I don't want to hear about it". Chldren can be very selfish and unsupportive when a parent is unwell. You should educate yourself because it may help you recover but it is your illness, not your son's. Why bother to try and convince him? You know how you were and how you are now, it doesn't matter if your son doesn't remember or believe it or want to discuss it. Family and friends aren't always supportive and it may be better to use the forum to discuss and complain about your illness rather than see their eyes glaze over. Often it's because, although they care, they don't understand illness, what to say or how to help you.

Is there another family member or friend who may be more helpful than your husband at your consultations? If not, ask your husband to speak up and back you up if you say xyz is bothering you and you can't do this or that because of it and the consultant appears to ignore it or says it's "not your thyroid". Both of you should ask "what is it then, and what can be done about it?"

It helped me to make a short list of the symptoms which troubled me most in a notebook which I used as a prompt during consultations and I also noted endo's comments, TFT results etc. during the consult because back in the day I could just about remember my name.

[jezebel69 in reply to Clutter]

Thanks Clutter. I know you're right. I felt hurt not to have him as an ally - after all hes an intelligent adult (I think) I have bursts of resolve where I WILL get the problem sorted but it doesnt take much to shoot me down. I actually began to wonder if it was just in my head. I came straight here because I know this is where my support is

[Clutter in reply to jezebel69]

Jezebel, I've been underwhelmed with how selfish and unsupportive the teenage and adult children of friends and family are when one of their parents is recovering from serious illness/accident, on chemo etc. They still expect normal mum 'hotel service' and if asked to do something it's either in a minute (but forgotten unless they're nagged within an inch of their lives), can't because they're going out, or done with bad grace.

I, of course, was perfect and not at all like those selfish kids.

NOT

[Joyia]

Oh how we wish our families would be more supportive, it is disheartening and very lonely and hurtful sometimes to struggle with various symptoms without any interest from those around us, for many of us this website is the only place that helps us not to feel abandoned.

[helvella]

In debates in economics, they always simplify things to the extreme by saying "all other things being equal". Keeps the focus on the issue being discussed but ends up hopelessly unrealistic.

If the suggestion was that reading about thyroid could make you feel worse then, if nothing else changed at all, it could have some truth to it. But that is not true simply because so much changes due to reading and understanding.

One of the most common themes here is of people who have been taking levothyroxine for years, sometimes many, many years, and only when they start to read here (and elsewhere) do they appreciate that it might be possible to relieve the symptoms they still have - whether they are due to thyroid or something else. Wrongly assuming that things are, or are not, thyroid-related is a big problem. Taking the increased understanding and using it has very definite effects. Even the very simple things like taking levothyroxine away from food, and with water, have made significant differences to quite a few.

Becoming obsessed as some of us do, is probably unhealthy!

Rod

[jezebel69]

Thanks for your support everyone. I was undiagnosed for many years and made to feel it was in my head. Then once diagnosed made to feel I would then be fine. The reality was that it took me years to even think about researching online because I wasn't fine! My many symptoms may not all be due to my thyroid but the only way to know is to optimally treat that thyroid. Without the fantastic input of everyone here I would now be accepting my decline instead of being determined to feel well again