Looking Back: I am tidying up my medical file re... - Thyroid UK

Thyroid UK

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Looking Back

shaws
shawsAdministrator

I am tidying up my medical file re hypo and shredding things that aren't needed. I never used to have such a file before hypo.

It triggers off the memories, which I don't think people really forget if they've been struggling, yet being told 'everything's fine'.

Before being diagnosed (by myself) and after feeling so unwell for a very long time and being given diagnoses for things I didn't have and treatment (even an op) from doctors I consulted privately then pleading with GP that I wanted to pay for a private 'whole body' investigation because there was something seriously wrong with me. (this had been going on a long time). The year before my brother-in-law had to take me in the middle of the night to the A&E and discharged as o.k). I didn't want this to happen again but it did even though GP reassured me that he'd do a Full Test and on 5.11.07 phoned to tell me that everything was 'fine' and nothing wrong. Off I went to sister. We believed doctors - after all why not - they are the experts and knowledgeable.

At my sister's I had the same awful experience as the year before and discharged again from A&E in her area. No diagnosis. I phoned my surgery and ask for a Blood test form for thyroid hormones to be left out for me. I was by now very unwell and went straight to the A&E when I came back home and kept in overnight and discharged with a diagnosis of 'Probably viral'.

On looking through the 'Full Test' today (for the very first time) that the doctor requested on 5.11.07 and which he phoned to reassure me everything was fine are 42 results. He didn't notice that the results of TSH were 95.61: FT4 5.7 and they state that there has been non-compliance. (my own test on 26.11.07 TSH was 100). The other doctor in the surgery when they received the phone call from hospital asked me who gave me the blood test form and I said I requested it myself. She said you have hypothyroidism come and get a prescription. If I hadn't done the ground work what would the consequences have been?

Like most on the forum we haven't a clue about blood tests/results.

This must have been the very first print-out I had but, like most, we know very little about results and take doctors' words. Why wouldn't we.

This doctor told me - everything was fine but I still remained undiagnosed. Needless to say I changed surgery.

Luckily because I insisted on my own test, the Phlebotomy were alerted and phoned the surgery probably to ask why no action had been taken due to previous result (I am assuming). It was the Phlebotomy unit who phoned the surgery re the results on 26.11.07.

The doctor (probably thought he was dealing with a stressed out patient - he was), assured me he'd do all the necessary tests and then he phoned to tell me I had no worries as everything tested was good.

This leaves one in despair but thankfully our instinct works well at times. :)

Thanks to Thyroiduk.org.uk and slow step-by-step to good health.

Why is the diagnosis and treatment of Dysfunctions of the Thyroid Gland the cinderella of diagnosing/prescribing. It has to be due to cursory training and the 'painting by numbers' attitude by only diagnosing through results of blood tests or insisting the patients' doses are fine and given another prescription for the symptom(s) instead of thyroid hormones which make patients well, i.e. NDT or T3/T4 or T3 only. Doctors have lost their skill in diagnosing by clinical symptoms - like Dr Skinner and Dr Peatfield and others.

Are we not deserving of good health once more - which is achievable with the right hormones for us as individuals?

The NHS should reinstate NDT and T3 for those who will benefit and not have so many consultations in the surgery or elsewhere. Not counting those who have to pay for services/hormones as NHS will no longer do so. Also the members who thought consulting an endocrinologists would resolve their health issues. Quite a number have been very disappointed with the consultation, which is a pity.

11 Replies

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I know more hypo people are female, but I wonder what the proportion of male patients are fobbed off with hysterical symptoms?

I understand how you feel, I was only diagnosed after my mother pushed to find out what was wrong with me and that was over 60 odd years ago. She was just told she was a fussing Mother. Keep up the good work you do.

Agreed - I thought my private Endo would get me sorted , but all he does it write my private prescription & raise or lower my grains of NDT . I don’t feel “ right” on 3 grains a day - taking all the supplements & on AIP regime - ( I did feel right initially but only for the first 3 months 😩) now I am slowly slipping back to only making it until about 3 pm - ( I didn’t feel better on 3 & half grains ) I can’t change to WP ( to see if that’s better for me - as it’s not being made ! What to do next ? Exhausting- we are being let down & wasting precious days . It’s hard to feel “ normal again “ after 24 years in my case on Levothyroxine- now to feel I’m slipping back into thyroid days -

shaws
shawsAdministrator in reply to Avidreader

I am not medically qualified but did you raise your dose of NDT by 1/4 tablet every two weeks? As I have read this is what you should do until you are symptom-free. Taking pulse/temp several times a day when increasing dose, or if you feel hot or pulse is raised, is a good idea because even tho' you feel either of these when you check they may be normal. If either was high, you'd drop back to previous dose.

Do you take NDT as one daily dose or split it?

i take 1 grain at 7.30 am

1 at 1pm

1 at 6pm on empty tum - which is hard as all at mealtimes !

No I didn't do any of this! Just took another grain (as endo said!) initially felt better, then awful on 3 & half

I have bought the thermometer - it resides in my bedside drawer ! Unusused ! Will look at this method - I've also ordered the Medichecks blood test

Hidden
Hidden in reply to Avidreader

I take my Armour Thyroid 4:15am every morning (2grains) I did the splitting doses into Am & Pm for a long time and I was becoming a neurotic medication taker and Synthyroid and Cytomel was a pill taking disaster thinking about those days gives me heartburn,kidding.

I dont feel better or worse taking them together vs. splitting the doses. Do you feel better splitting and have you tried all at once?

Like yourself I went round and round in circles for many years feeling absolutely dreadful. I ended up at St Marys Hospital where they did vigorous testing hey ho I were overactive.......I wasn't surprised I had lost so much weight I looked like a bean pole. The endo prescribed me carbimozole.

This made me very poorly but despite my pleas nobody listened so I were now at collapsing point.

After a few months my bloods were rechecked but to my surprise they showed I had now gone underactive ! This was a whole new ball game but thyroxine was now being prescribed......and still is together with T3 of which the Dr is desperate to withdraw due to cost.

My hypo>para<thyroid problem took 'many years' to diagnose but that is another story. Dr's need to listen to the patient and their symptom's.

The care has long gone from the health service it is now governed by greed and money. It makes me angry.

Reading this was like going down memory lane. I had 18 years without a diagnosis and despite being very unwell indeed, was always told my blood tests were 'within normal limits.' Five of my family were already hypothyroid but this was ignored. Had it not been for my daughter 'finding' Dr Skinner I think I would be dead by now. Dr Skinner gave me back my life - I am totally indebted to that dear man.

shaws
shawsAdministrator in reply to DollyCon

What a blessing Dr Skinner was. I also consulted him, my daughter and sister. What a down-to-earth doctor -no airs and graces - always funny. He is sorely missed but his Staff have been collating all of their research and are hoping to publish. I shall give you a link - for information.

healthunlocked.com/thyroidu....

His staff said that everyday was joyous.

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I'm pretty 2 yrs new to the No Thyroid Hypothyroidism thing and its horrible and just absolutely destroyed my health not to mention my weight ....grrr the weight.

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