Newbie looking for advice ( first post) - Thyroid UK

Thyroid UK

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Newbie looking for advice ( first post)

Farscape profile image
13 Replies

Hi everyone

Was diagnosed with Hashimotos 2003 spent 9 years in a wheelchair last 3 bedridden. Had heartattack and found main artery 99% narrowed, had stent 4months onwards had learnt to walk and regained my life. They then started changing my thyroid meds said I couldnt be on t3 with my t4 and over an 18month period took me off it. I was accessed at that time and my thyroxine was raised from 75 - 100. I got around for about a year then my legs went and had breathing difficulties after an angiogram they said everything was the same and an appointment with endo was no help.

After a while I sourced t3 and added. a small amount in and 4 months later had some quality of life again.

16 months ago I got up and had this terrible internal.shaking that made me wimper i paced the floor for 18 hours a day and was managing an hour or so of sleep. My gp did not know what to do with me. They lowered to 75 and it has been 10 months since I havent been able to walk.

Last June I paid out for some private tests in preparation for refferal to a new endo he refused to look at them he said he was confused with my tests but basically picked one from a year ago and said go back to the hundred didnt want to see me again and said everything could be handled by the gp.

I have been refused out of county appt due to budget and I have no care plan .

I am so ill I don't know how Im here I have no quality of life and I feel so scared

I apologise for long post but had to start somewhere .

I have my thyroid tests from heart attack onwards some private tests from june last year. Reference ranges have changed throughtout this and not all tests were done due to lab refusing .

I have wanted to get on this forum for so long but pc broke and couldn't afford new.I'm not great on this phone and am hoping I have done this right!! I'm in such alot of pain I find it difficult to function. I need to find some hope in my life as the current system has left me with mone and how the hell are you supposed to live with that.

Thankyou in advance anyone who can take the time with me.

Farscape.

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Farscape
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13 Replies
SlowDragon profile image
SlowDragonAdministrator

Like very many who find their way here, you have definitely been through the mill.

Very sorry that current thyroid care is so inadequate

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

How much Levothyroxine are you taking ?

And how much T3?

Do You always stick to same brands of T4 and T3?

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also extremely helpful if had vitamin D, folate, ferritin and B12 tested.

Add results and ranges if you have them

Farscape profile image
Farscape in reply to SlowDragon

Thankyou so much for replying Slowdragon I have results to share in a pdf format but do not have a clue how to post. I want to share a few docs but all my latest results will have to be hand typed.

I will try my best tomorrow to share some info but any advice on sharing docs would be a great help.

shaws profile image
shawsAdministrator

Farscape, you posted very well indeed and yours is another horror story and I am sorry your T3 was withdrawn as I know how I'd feel if mine was removed.

If your T3 was withdrawn due to the current abhorent rules, you should speak to your MP and complain that it gave you some quality of life which has now been withdrawn. You can send him this link also about T3 which is highlighted . We have a petition.

If you post your latest thyroid hormone results, with the ranges, members will respond and recommend what else can be tested.

Ideally, and GP wont do all of these but there's no harm in asking:- TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

He should have no problem testing B12, Vit D, iron, ferritin and folate.

These tests have to be at the earliest possible, as TSH is highest then and you should not eat before it but afterwards. You can drink water.

Get your results, with the ranges and put on a new post for comments.

Sometimes when we are ill, everything seems to go against us i.e. with your computer going down etc. I am glad you've got one now.

Members will be more than willing to help you as most of us have had fight our way to good health without doctors/endocrinologists.

thyroiduk.org.uk/index.html

Farscape profile image
Farscape in reply to shaws

Thankyou Shaws for replying I have just replied to Slowdragon I need some help with how to share results in pdf form. I am using a phone and am not at all up to scratch in how to use it.

I will try and get my latest results up tommorow but they will have to be typed in. I would like to share what info i have as it may help pinpoint what is going on with me.

I'm at a stage now where I cant cope with much physically or mentally but you have probably been there yourself so understand where I'm coming from.

Thankyou for your time

shaws profile image
shawsAdministrator in reply to Farscape

It can be a struggle as most doctors only look at our blood results but know nothing about disabling symptoms. Before blood tests and levo were introduced we were diagnosed upon our symptions alone and given NDT (natural dessicated thyroid hormones) on a trial basis, if we improved we were hypo and continued on NDT for a lifetime

Nord profile image
Nord

Lifestyle and diet - you’ll be surprised how much this can help. Try out the Autoimmune Paleo (AIP) diet and find out if you have any underlying food intolerances; stop your body attacking your thyroid. No medication will help with that. Read Izabella Wentz book on Root Causes for Hashimoto. Dig deep. Wish you all the best.

Farscape profile image
Farscape in reply to Nord

Thankyou Nord for replying I have gone gluten and soy free in the last six months as I heard this can lower antibodies. I have heard of the paleo diet, is this grass fed animals?

SlowDragon profile image
SlowDragonAdministrator

You would need to make a new post to add PDF on to. Take a photo of the test results (without any name or personal details on it). You can't add a PDF, just an image

You can only add one image per post

Probably best to start new post anyway, then more people read it

Farscape profile image
Farscape in reply to SlowDragon

Thankyou Slowdragon I have made a new post, a freind kindly made my pdf into a jpeg for me. Whether I can remember how to do this another time by myself remains to be seen .

andyswarbs profile image
andyswarbs

You might be interested in a whole-food plant based diet which is the only diet to have been shown to reverse atherosclerosis. Here is one link on this health.harvard.edu/heart-he...

Farscape profile image
Farscape in reply to andyswarbs

Thankyou andyswarbs I will have a look but honestly food is very difficult for me as my gut is definately not working im in alot of pain have a terrible taste in my mouth last 10 months but no bad breath and heightend smell. I have gone gluten free am trying to hang on to some weight as I lost a stone very suddenly when everything went wrong 16 months ago. I've managed to regain it but had pneumonia a few months back and lost half a stone in 10 days So Im eating quite plainly and what I can manage at present.

andyswarbs profile image
andyswarbs in reply to Farscape

plain & simple is good. take it steady.

Farscape profile image
Farscape in reply to andyswarbs

Thank you

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