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Thyroid UK
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ITS ALL BACK AND I AND SO VERY SAD

I HAVE HAD 8 WEEKS OF PEACE IN MY BODY. I CONVINCED MYSELF I WAS GETTING BETTER ..tHEN 3 DAYS AGO I STARTED GETTING INNER TREMOR AGAIN SHAKES AND WEAKNESS, i DO NOT HAVE A THYROID AND TAKE THYROXINE 125/100 EVERY OTHER DAY .. i AM CONFUSED AGAIN AND VERY TRIED(TAKES ME ALL DAY TO MOVE ... MY LAST BLOOD TEST WAS NOVEMBER IT WAS CONSIDERED NORMAL .. DOES ANYONE ELES GET THESE FEELINGS i AM AT MY WIT ENDS

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Hi

Please don’t take offence at this, but it’s hard to read your post when in all in capitals.

Have you got hold of your latest thyroid results and did you manage to raise your Vitamin D as looking back on your post it was low?

Are you just taking Levothyroxine only?

Best Wishes

Peanut31

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You know you didn't need to comment on " capitals". The poor girl is ill and is stressed and asking for help. She's clearly writing in capitals because she's desperate and that's how she's demonstrating her emotions. Can't you just be more understanding and less petty and picky and more understanding.

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Hi Josie_

I made it very clear that I didn’t want her to take offence and explained I found it hard reading in capitals.

I also asked if she had her current blood results so that we could help further, and if her vitamin D had been raised, as well as other further questions.

I can understand how she is feeling and we have all been in the same situation.

Best wishes

Peanut31

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The point is why say it at all if you have to say don't take offence. It's just because it's irritating to you. But it's something that needn't be said at all.

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Also because it 's rude and bad manners and has been for the last 30 years.

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That is a perfectly 'normal' occurrence, and it just means that you're not on your optimal dose, yet. You need an increase in dose, whatever your labs say.

When you first have an increase, the body is 'grateful' for the extra hormone, so you feel well for a while. But, then, it becomes obvious that it's not quite enough, so the symptoms start creeping back. Happens to almost everybody, it's well-known - except by doctors who know nothing!

You're getting there, that's obvious, because you went for 8 weeks feeling good. But, now it's time to increase the dose a little - perhaps just to 125 mcg a day. But, difficult to say without seeing your labs.

There's no such thing as 'normal', it's just doctor-speak for 'in-range'. But, 'normal' is not the same as 'optimal'. So, now you need to get your results to the right place in the range, rather than just 'in-range'. Doctors have no idea what 'optimal' is. Up to you to guide your GP to the right dose for you. Don't let it confuse you. It's pretty simple, really. :)

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Several previous posts show poor conversion

Strongly suggest you get FULL Thyroid and vitamin testing Privately

As you have Graves' disease low vitamins are very common

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

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

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Have you tried strictly gluten free diet?

If not ask GP for coeliac blood test first, or buy online for under £20

chriskresser.com/the-gluten...

amymyersmd.com/2017/02/3-im...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

Many people after RAI need small dose of T3, but you need vitamin levels optimal first

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Hi Wendy

You may remember me from some time ago.

I'm with Graves Disease, post RAI 2005.

I have had no help from anybody within the Nhs - and am now self medicating with NDT.

I purchased both Natural Desiccated Thyroid and T3 and gave myself a trial of each.

I found not all T3 manufacturers gave me the same sense of well being -

I have found NDT very calming and I have my brain back, and know I've made the right decision for me.

T3 was like having worn high heels all day long that were one size too small for me whilst NDT feels as though I've got on my slippers. Hope that makes some sense !!!

I was on monotherapy with Levothyroxine and told I was fine and good to go - where ?

Chronic fatigue clinic, pain management meetings - I don't know but I decided enough.

I had been on the Nhs merry go round to various departments, and already felt like a pass the parcel, with no one department picking up on the implication unique to Graves patients or the implications of drinking RAI, a toxic substance that goes throughout your whole body.

A fully functioning thyroid would give you 100 T4 + 10 T3 daily, and I seriously believe that if one has had a medical intervention and has lost their thyroid production it is only right that both these vital hormones are available on their prescription.

Some people are OK on Levothyroxine alone, some are not, and some of us have lost the ability to convert the T4 into T3 .

I believe we should all have the option of both hormones in order that our levels can be balanced independently of each other if necessary, back into a balance that gives us back our health.

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P.S.

Graves is an autoimmune disease and as such it's for life.

It's in your blood, and in your DNA.

There is probably some genetic predisposition, a generation away, a distant relative maybe and I read Graves can " come on " through a shock to the system, like a sudden death or car accident.

Your thyroid was not the cause of your illness - your thyroid was the victim of an antibody attack.

Your thyroid is a major gland so when it goes " haywire " it's said to be life threatening -

Loosing the thyroid gland through medical intervention is a somewhat simplistic solution. The medical profession believing they can manage hypothyroidism better than they can an overactive thyroid.

So, we first have just one health issue to manage but the Nhs thinks it's in our best interest to give us a treatment which burns out the thyroid, ablating it.

We are left with the original diagnosis, Graves an autoimmune disease, plus now if you are really unlucky you have thyroid eye disease and hypothyroidism to manage as well !

And extremely lucky if you can find any doctor to manage the symptoms of either one or two or possibly all three health issues.

Well I think if the issue is one of an autoimmune disease of the thyroid, there is no cure, per se, and the medical profession have no guidelines to follow.

Elaine Moore - Graves Disease A Practical Guide - this lady has the disease and has had RAI treatment - there is also a very comprehensive website - USA based.

Barbara S Lougheed - Tired Thyroid from hyper to hypo to healing - another American lady who has the disease and been through RAI - debunks the TSH reading for Graves people:

Dr Barry Durrant Peatfield - Your Thyroid and How to Keep it Healthy - this man has hypothyroidism, is an excellent easy read on all things thyroid, we may not now have a thyroid but we need to work twice as hard keeping up our health and understanding how to make up for the shortfalls we may now have to live with.

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P.S. I've recently read of trials of a vaccine to " kill off " the Graves antibody.

I know it's too late for us but thought it might be relevant for your daughter.

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