Probably a stupid question but..........

[Mum24]

I have hashimotos and antibody result was over 2000? As Scans show thyroid is completely dead will hashimotos still affect me ? Or will correct dose of Levothyroxine sort me out? Sorry if this is a stupid question but I've been wondering, had lovely Endo appt but forgot to ask and have received report after appointment and it says that I'm adequately bio medically medicated and will probably still have "fatigue/ muscle pain and reduced quality of life ". Which I found a bit scary, any ideas anyone?

[marram]

Dear Mum24 - When they say you are adequately biomedically medicated that is professional medical speak for 'We've got your TSH to the level which makes US happy and we couldn't care less if you still feel ill'

If you still have fatigue/muscle pain and reduced quality of life', and that's OK by them, they should be shot!

If you were optimally - not 'adequately' - treated, you would have the same quality of life as, for example, my self. I have had my thyroid removed surgically for Graves' which is another form of autoimmune which also attacks the thyroid but in a different way. Whichever, the end result is the same, no natural thyroid activity. For some people, the correct dose of Levothyroxine does, indeed, sort them out, and they carry on leading a normal life.

I coped for many years putting up with fatigue, muscle pain and reduced quality of life, but it has taken its toll on my wellbeing and my GP slashing my thyroxine dose from 150 to 100mcg tipped me over into serious ill-health.

However, I am now well on the way to recovery.

The first step is to recognise that thyroid treatment is far from good, not just in this country, but all over the world, from what we hear.

The second step is to take responsibility for ensuring our own health. This means making sure that we have the actual blood test result, with the ranges. Initially asking for this can be difficult if we have never done it before, but once your GP has got used to it, it will be easier.

There are many other things which you can do, such as ensuring that your levels of iron/ferritin/folate plus Vitamins D and B12 are at optimal levels and in my case I had to take it even further and had a private consultation with a thyroid and adrenal specialist.

But please do take that first step and ask for your actual results with ranges, and put them on this forum so that members can offer constructive observations and advice based on their experience and research.

It IS possible to be well without a thyroid, we are all different and people use various ways to ensure optimal thyroid replacement.

Look on the main Thyroid UK website and take the first step in learning about your health:

thyroiduk.org.uk/tuk/index....

I do hope you find this enlightening and encouraging.

Marie XX

[tegz in reply to marram]

For 'thyroid treatment is far from good', read 'terrible- with occasional exceptions, probably due to patient pressure'!

You are indeed generous, Marie

[marram in reply to tegz]

You are right, of course.

[Yana]

The book "Hashimoto's Thyroiditis Root cause" by Izabella Wentz will give you the answers your looking for. I'm part way through this book and I rate it as being one of the best books so far on thyroid issues, it's hard to put down. Not cheap at £15 something but, worth the money.

[ellarose1234 in reply to Yana]

Absolutely agree. This book should be on the shelf of everyone who has Hashimoto's disease. Lots of doctors, including my own, completely ignore it and it really is so important for you to know as much about the disease as possible. You will find most answers in this book. Lots to do to help yourself also lots that could be done that never will be in this country sadly. Worth every penny.

[tegz in reply to ellarose1234]

Ella- I hope you're wrong on the 'never will be' bit!

It will take time, though.

[Hidden]

I saw my Endo this week. I have hashimos and my antibodies are over 6500.I was diagnosed in June so it's been a bit of a rolercoaster. My thyroid is damaged and I forgot to ask by how much. I have issues with a nodule at the moment and I may have to have surgery to remove the thyroid or part of the thyroid. He informed me that some people's antibodies reduce significantly once on medication others don't. Some people's antibodies reduce after surgery others dont. He said once you have this disease it never goes away. Some people are unaffected despite having the disease others aren't so lucky. One of his patients has low antibodies but her thyroid is ravaged. He said they don't know why this has happened. He told me that removal of the thyroid will not cure the disease. At the moment it cannot be cured but hopefully it can be manged.

[tegz in reply to Hidden]

Manged.. Hope you don't have to hang out with foxes, Chicken

[cloud1 in reply to Hidden]

Chickens;Just to say i was surprised to read ur antibodies level is over 6500!mine is at 600.00 and i thought that was exceptionally high.Do u know if its true,what i read; ,that it doesnt correlate that the higher ur antibodies are the worse it is.What i mean is that high is bad;doesnt matter HOW high..(so yours isnt neccessarily worse than mine..)

[Hidden in reply to cloud1]

From what I have read it seems that the number of antibodies is irrelevant. I don't know what the damage is to my thyroid I only know its damaged. I have had these high antibodies for 4 years and my GP kept asking me if I was fighting an infection. She also told me that if you go looking for things you always find something so you are best to leave things alone. How naive I was!

[Mum24]

Thanks everyone,I've had a good look on izabella Wentz website and will be investing in her book. Medicine isn't an exact science is it so I think I need to be trying to help myself.

[cloud1]

I dont have a good idea of answer to ur question as am confused myself ;about what happens when the thyroid has been completely destroyed by the antibodies..as i have read that it only takes a few years(was it 3/4yrs or something)for this to happen.I have had High antibodies for much longer than that (with hypo symptoms)but as my tsh is almost always been 'in range ' the docs wont help.How did u get thyroid scan;do u have high tsh?cos i want mine scanned but theres a fat chance of that,i suppose!It infuriates me to remember this fact;that my thyroid has probably been completely destroyed by now and the docs must bloody know that; as my antibodies have been high for ages..i just dont get it.Do they know my thyroid is caput but not do anything; cos of 'guidelines';as my tsh is 'ok'!

[Mum24]

Cloud...I think confusion is part and parcel of this!!!! In answer to your question I have had hypo symptoms for at least ten years and my bloods have always shown TSH in normal ranges, I have a strong family history of hypothyroidism so have said results may be in normal ranges but I am hypo!!! Couldn't convince gp tho. In march this year my body almost stopped, I couldn't walk at my usual pace, my breathing was slow an I was just about managing snail speed. A blood test showed TSH was 'borderline' ( I think about 6?). But the locum gp I saw said as I was obviously symptomatic and with my hfamily history he would start me on levothyroxine and see how it went. It went very well, 25 mcg improved me a little, so dose was upped to 50 mcg. I got my life back!!!! THEN. To check on the nodules/cyst that I'd had on my thyroid for years they decided to do a radioactive iodine uptake scan which meant no thyroxine for the month before the scan. First few weeks were ok then back to feeling dreadful. After the scan (which was ok) back onto the thyroxine but still felt terrible...long story short- thyroxine dose has been altered several times and am now on 100 mcg until I see Endo again in feb. life isn't too bad on a good day..dare I say it's even 'normal' but then I get days where the exhaustion/ muscle pain is debilitating. And that is why I asked original question about hashimotos effects. That's my story so far, having read some of the posts I know I'm not suffering as much as some and hope that reassures others as much as I've been reassured and helped by this forum.

[tegz in reply to Mum24]

Dare you ask your Endo for added T3 ?

Maybe he will do a T4 & T3 test for it, though it's not perfect for diagnosing...

[cloud1 in reply to Mum24]

Similarly,i have hsd hypo/hashis symptoms for 14yrs now with tsh mostly in range.I also have fam history of hypothyroid in my mum and thyroid cancer in my aunt....thats alsowhy i need a scan.U were lucky with the locum gp;how come he was prepared to med u(when other gps r scared of being 'struck-off' if do medicate solely going on symptoms n fam history)?i dont get it..(what is a locum gp exactly?)I want to change surgeries but dont know if worth bother.

[Mum24]

Hi Tegz. In the report he has said " various combinations of thyroid replacement I.e. T3/T4, Armour Thyroid have shown some benefit to some patients but in the majority of individuals it makes no difference" he's happy to keep trying increasing thyroxine as long as TSH is low but not suppressed and Free T4 is in the upper normal range. I think as long as I'm having more good than bad days I'll go along with that, try and make sure my ferritin,vit D etc is well supported and see what bloods show on next visit. I'm def going to invest in the Izabella Wentz book as its got great reviews and any ideas for self help are greats we are all unique!!!

[tegz in reply to Mum24]

It's entirely up to you, of course. Glad the good outweighs the bad,anyway.

On the 'majority' front -I don't think it's 'much' of one, as nearly half of people on T4 only are reported to be not optimal, but the figures get suppressed [and not researched well].No links- anecdotal.

'Putting up with it' is part of the list of UAT symptoms- but this time, one invented by Docs.My opinion.

[Mum24]

Tegz. Thanks for giving me your opinion, this is all relatively new to me and I'm finding my way..I'm listening to everyone and working out what works and what doesn't for me....(wait until I have a bad day! I'll be trying anything and everything) I am grateful for everyone's response and advice on 'my journey with Hashimotos', i love the fact we can all help each other with the bad and share the good.