Treated like 'Outsiders': Diagnosed after lengthy... - Thyroid UK

Thyroid UK

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Treated like 'Outsiders'

EleanorRigby profile image
23 Replies

Diagnosed after lengthy amount of time undergoing symptoms and GP suggesting it may be 'all in the mind'... or menopausal (even knowing had full hysterectomy in my forties so way past that!)... eventually it took a distressed woman losing her hair, eyebrows and experiencing brain fog for doctor to 'guess' I may need a blood test'...Six years on ..not much changed...

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EleanorRigby profile image
EleanorRigby
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23 Replies
Jaydee1507 profile image
Jaydee1507Administrator

We are here to help EleanorRigby if you can post your latest results with reference ranges members can advise further.

members have found that optimising vitamin levels is important too as we get very low if not deficient being hypo. This is caused by low stomach acid and not absorbing vitamins well from our food.

For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...

There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)?

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

Regenallotment profile image
Regenallotment

yup got the T shirt, but you are among friends here 🌱

Fruitandnutcase profile image
Fruitandnutcase

Ah - I’ve come ta the conclusion that there are three ages of woman

1. Too young to have anything seriously wrong

2. Menopausal - neurotic give them some tranquillisers

3. Too old to bother about

Unfortunately you are not alone. Good luck.

1tuppence profile image
1tuppence in reply to Fruitandnutcase

Think there may be another one.....what about "working mum" thus everything considered "stress"!

Fruitandnutcase profile image
Fruitandnutcase in reply to 1tuppence

Oh yes! That could even be a sub category of 1 or 2.

Auders profile image
Auders in reply to Fruitandnutcase

Spot on there Sister x

Kazania profile image
Kazania in reply to Fruitandnutcase

So true

noquitter profile image
noquitter in reply to Fruitandnutcase

I love your 3 ages of woman. That's exactly what I think. Put another way: 'attention seeker, nutcase, bore'. Thanks for a dose of the best medicine - a good laugh!

NewbieHyper profile image
NewbieHyper

I got diagnosed pretty fast, it was a female dr. In one visit she moved from maybe perimenopause to figuring out it was my thyroid and ordered tests. I know of others where it took years of dr visits to finally get diagnosed.

HealthStarDust profile image
HealthStarDust in reply to NewbieHyper

This happened to someone I know too. Catching as early as possible seems to result in more tolerable time during optimising dose too.

Fruitandnutcase profile image
Fruitandnutcase in reply to NewbieHyper

Yes, I saw a GP and was told I ‘was needing my holiday’. Boy was I angry about that comment, I was almost crying with frustration when I got back to the car and my husband.

Fast forward three months and I saw a different GP who had a lot more about her and did bloods. Mind you the receptionist who I knew from the school gate brought the doctor her coffee during the consultation and as she put it on the desk she looked at me and said ‘Gosh, you’ve lost a lot of weight haven’t you’ because I was so thin ( my body might have felt absolutely awful but I looked great on the outside) I think that, and the fact my hands were shaking like mad, my heartbeat and night sweats were waking me up etc, confirmed her thoughts.

I had the bloods done next morning and the day after I had a phone message from my doctor to say I had an overactive thyroid with antibodies and there was a prescription for carb at the reception, she had made an appointment with a consultant and to come back in four weeks for moor bloods

The doctor who originally told me I needed a holiday, had leaned back in her chair and looked at me as if I was something weird she had discovered under a microscope.

So as both of the doctors I saw were women I think a lot of it depends on the doctor you see and that’s not just for thyroid problems, I’ve seen some excellent, caring and sympathetic doctors who have been men and two of the worst and most unsympathetic doctors I’ve seen have been women. You probably need a caring doctor with an open mind.

Good luck all you hyper people out there although I think it is hypo people who have the toughest time being treated - I have come to the conclusion after being on TUK for over ten years that lot of doctors seem to look at hypo patients and think ‘overweight, lazy and eats too much, just wants levo to slim herself down’ maybe one day doctors will open their minds and wisen up about the thyroid.

humanbean profile image
humanbean in reply to Fruitandnutcase

I have come to the conclusion after being on TUK for over ten years that lot of doctors seem to look at hypo patients and think ‘overweight, lazy and eats too much, just wants levo to slim herself down’ maybe one day doctors will open their minds and wisen up about the thyroid.

The stupid thing about this belief (from doctors) is that many, many patients on Levo pile on many pounds in weight. Every time I raise my dose of either T4 or T3 I pile on yet more weight. :(

Kowbie profile image
Kowbie in reply to Fruitandnutcase

I hope so , I had a phone call about my thyroid because tsh is lower than it should be , I said but my t4 and t3 are not over ,she said we don’t take any notice of t3 , well ,I was fuming and said well i hope you never have a thyroid problem because I think you’ll be interested then . I’m glad your getting sorted now , reply to fruitandnutcase also newby ( got a bit muddled who I am talking to never mind

Fruitandnutcase profile image
Fruitandnutcase in reply to Kowbie

Well done for saying that to her.

Polarbear54321 profile image
Polarbear54321

happened to me too even though I am only 37. Mum had Graves so wanted to check thyroid paid privately. Feel better now on levo

Doris11 profile image
Doris11

it’s like being gaslighted 🙀😢

FoggyThinker profile image
FoggyThinker

Yes, I've been moaning for 30 odd years and ended up having to go private. It's nonsensical.

Kowbie profile image
Kowbie in reply to FoggyThinker

Same here

serenfach profile image
serenfach

Like the doctor who saw my vitiligo and told me to wash properly.

Like the doctor who said I was not fat enough to have "proper hashi's"

Like the doctor who said "who found you when you were unconscious?"

Like the doctor who said it was stress when my TSH was 22

Like all the doctors who just go by the TSH even when you give them research papers to show not to do this.

I could go on...

Fruitandnutcase profile image
Fruitandnutcase in reply to serenfach

Honestly - what can you say to that lot!

Doris11 profile image
Doris11 in reply to serenfach

😢 that’s terrible WTF 😢 you feel bad enough when you go to the Drs let alone being told that 🤬 what is the matter with these people 🤬

RoseF3 profile image
RoseF3

… or the doctor who thinks you aren’t coping and are tired because you have 2 babies and you’re just looking for a medical excuse to be fat!

Doris11 profile image
Doris11 in reply to RoseF3

That’s terrible 😞

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