Cause for concern. How can this be ? How can ... - Thyroid UK

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Cause for concern. How can this be ? How can doctors sleep at night ?

Marz profile image
Marz
18 Replies

We have a sweet couple renting our Studio at the moment - we have not met them before. Within minutes my Thyroid Radar was up and running ! This Dear Lady is 77 and 40 years ago had her thyroid removed after treatment failed to slow things down. Not once was she offered tests or treatments for being under-active. Until that is around 18 months ago when her hair was falling out.

This lady was so very active when she was younger - and that is not the case now. She has mentioned to the Docs many times that things do not feel right. She suffers with very bad Vitiligo all over her body - which they did not connect. Her weight gain has been ongoing and she has refused Statins for her raised Cholesterol. She is delighted to learn that there maybe a connection with her UAT. Of course we have not been through the list of Signs and Symptoms on the Thyroid UK site yet....!

She recently felt unwell on 75mcg of T4 and has reduced to 50mcg. Ummm ! Not sure that is right. She has not seen any of her test results. They are only here for a week but may well decide to have the full range of tests done here before she leaves.

The point of my post is to wonder just how many more people there are out there suffering from NEGLECT for over 40 years. I am amazed she is as well as she is. She says that whenever she questions anything she is silenced.....with the attitude that doctor knows best.

I feel so sorry for her - but she seems so pleased that she has booked in with a fellow sufferer who has learnt lots from this forum. By the way - her daughter has recently been diagnosed too.

At the beginning of April a guy ( a widower ) moved into our Guest House for a year. Within minutes I could detect his thyroid probs. Over lunch a little later he told us he had sold his business as he had a bad thyroid problem ! Overactive - zapped - then under. He was given a pack of 25mcg T4 but wasn't aware he had to take them for ever. Poor man had been without for weeks as he had been staying with his son. A quick visit to Draculas Den in the next village for blood tests had him sorted and then to the Pharmacy to buy his T4. Seriously under ! Thank goodness for the Greek system where we can act quickly and use our initiative. Also ordered B12 and D3 for him - which hopefully he is taking. Both very low. Don't like to intrude too much....but am keeping an eye. Next blood test in a couple of weeks....

So that's 4 out of 5 people in this acre of olive grove with a Thyroid problem - and not forgetting my lovely dog too ! Mind you I haven't checked out the visiting hubby - yet ! So for those who think I am as mad as a box of frogs for being concerned about peoples thyroids - then so be it - because there are so many people who do need a little help on their journey to wellness.....and it certainly does not seem to be happening within the GP surgeries.

Thank you for reading.....and hopefully we can highlight this awful situation and maybe there is something we can do. Meaning after thyroid removal.....

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Marz profile image
Marz
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18 Replies
wightmouse profile image
wightmouse

No what you mean, ive done the same when attending a cfs support group. "Have you had your thyroid checked" Some of them came back with tsh of around 4 but within uk normal limits.

Pointed them out to this site for more info.

Out of interest do you need a prescription in greece to buy the meds at pharmacy?

Perhaps you could start a holistic retreat for us all?

Could do with some sun its forgot to visit Britain.

Keep up the good work.

x

Marz profile image
Marz in reply to wightmouse

....very rarely need a prescription for anything. The Greeks love bags full of medicines - and the Pharmacies are happy to sell them. I only buy T3 for me and T4 for hubby and my lovely dog !! Some people have prescriptions if they are National Health patients.

Tell your CFS people to have their FT3 tested and the antibody TPO. Also the B12 Ferritin Folates Iron and VitD. - all these things make such a difference - don't they ?

Thank you for your response..........x

greygoose profile image
greygoose

I understand exactly what you mean, Marz! You see it all the time, everywhere, people walking around with obvious hypos whose doctors tell them they are 'fine'! I do try to descretely discuss it, if I feel that the person would be receptive. During my teaching days, so many of my adult students had goitres and other such signs, and they were interested when we chatted about it, but as soon as they asked their doctors and the doctors said their labs were normal, they believed the doctors, not me. What can you do.

But it seems like you at least are having some success! And that is great. Keep up the good work.

Hugs, Grey

Marz profile image
Marz in reply to greygoose

Thank you Grey - as long as we are aware and we can only do our bit to help. Look at the good work you do on this site helping people - always an informative read.

M x

greygoose profile image
greygoose in reply to Marz

Thank you, Marz, that means a lot.

Grey x

flatfeet1 profile image
flatfeet1

Hi Marz, I'm coming for Holiday/TLC, how much do you charge ? ;-)

Thank goodness these lucky people found themselves at your door, Marz.

I know exactly what you all mean. It happens again and again doesn't it, and what amazes me most of all is that so many of them feel rotten, I tell them what they could do about it, they tell their doctor and that's the end of the story. I lose patience after that and keep my mouth firmly shut - can't save the world!

Jane x x

Marz profile image
Marz in reply to

.....I know it can be a real problem - but for some reason both these people were so receptive and brought the subject up themselves. That of course makes it easier. I just give them loads of stuff to read and then say if you need me I'm here. There are some who are of course not in the place of learning and are stuck.....and of course Doctor knows best....

I think again we are fortunate to be on this forum where every little bit of support can make a difference. It has certainly made a difference to me being able to learn new things and receive kind and caring support.

You are right Jane we cannot save the world ! Hope all is well with you and yours.......

M xx

marram profile image
marram

I always speak out if I think a person looks as if they might have a problem. I would thank anyone for doing the same for me. It's lovely that we can all empathise with anyone who has the same illness. I am the same with Psoriasis, which my husband has. Usually end up comparing treatment history, etc. At least with psoriasis there IS a choice!

Marz profile image
Marz in reply to marram

......have you tried opening up a VitD capsule and putting the contents straight on the poorly bits ? Am sure you will have tried everything....just something I read somewhere.

Joyia profile image
Joyia

Oh yes Marz, I had a partial thyroidectomy in 1967 and through dire ignorance on my part and neglect/oversight by my GP's I had no treatment for my thyroid whatsoever after my op until 1995 when I happened to attend a well-woman clinic, it was then discovered I was under-active, a total of 28 years lost. In those years I managed to raise my family and work but I was so tired and we all suffered. My heart goes out to the lady you speak of. I look back and wonder "what if"....

Marz profile image
Marz in reply to Joyia

...sorry Joyia - didn't click onto Reply to this....so it's below !! x

Marz profile image
Marz

...oh dear Joyia - that sounds a really tough call. Working and families are demanding when you are healthy and fit - so you did really well in the circumstances. I think many of us can look back over the years and put together so many missing pieces of the jigsaw.

Hope you can now enjoy lots of good days......

Triciatextiles profile image
Triciatextiles

Marz

I know what you mean - its the generation, my mother in law is 85 and hypo and has been for 20 years on 50mg of levo, she is 'loosing it' and I am sure some of this could be because she is on such a low dose. She doesnt know her test results just gets told its 'normal'. Too worried to challenge the doctor as he must know best! Sometimes there is nothing more we can do.

Tricia

Marz profile image
Marz in reply to Triciatextiles

....this makes me very very sad. By the time I was diagnosed with a thyroid problem I was 57 and my lovely Mum had died at the age of 80. She lost her hair at menopause and was told to buy a wig. She worked in fashion and was a very stylish lady. Later an irregular heartbeat took her to the GP once more and was told it was possibly the beginning of angina - take this drug. A non-specific stroke in her 70's was also very difficult for her. NHL eventually took her away from us....and now I know that the majority of her life had been a struggle with an UAT.

Please fight for what you feel is right. It is very painful dealing with it afterwards.....x

tintin profile image
tintin

Marx, would love details of your guest house please.

Also, can anyone tell me best things to eat and things to avoid?

On 100 mg thyroxine but still so very, very tired. Struggling to do things wondering what more I can do to help myself.

bellk profile image
bellk

I had symptoms of an underactive thyroid from about 12, had no idea, only looked it up when my father was diagnosed when I was about 40. At that time my results were "normal" which for me means I was really knackered but it took another year before my results reached the magic figure at which doctors think you have a problem. So, yes, I would have been delighted if someone had given me the info to do something about it sooner.

As an aside, I have twice wondered if people's catswere hyper and they were! Ditto, owners pleasded I suggested it might be worth asking vet.

Marz profile image
Marz in reply to bellk

...I have been involved in many a thread about our pets and the wonderful treatment they receive !! Some people have even mentioned how there are leaflets in the vets about an under-active thyroid. So maybe it's time to go back onto 4 legs !!

Next time you are told something is 'normal 'ask them 'what is normal ? '.....

Wishing you well..........

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