Re: Good news/bad news - some advice please?

[Guest guest]

>> Hi All> Firstly very many thanks to all of you but particularly Bob, Sheila and Dawn for the really helpful advice and support recently. x Well at LAST I have a letter from Addenbrooks saying they will be happy to see me at the Endocrine Clinic!! Its only taken nearly a year of constant almost harrassment of my beleagured GP!! I don't have an appointment as such yet as they (quite rightly) would like to see up to date thyroid function tests. Bless your GP for being one who is trying to help you eh?> > It would really be helpful to have some of your opinions on some of the contents of the letter:-> > " You have been referred to our clinic to determine whether or not your ongoing symptoms are due to your thyroxine treatment not being optimal" Although I am trying to be hopeful for you, I get the same trepidation about how they have worded that too but fingers crossed eh?- any views on this appreciated. The cynic in me is hoping this doesn't mean they'll only look at thyroxine levels and if I'm on the max not take it any further. In which case travelling all the way to Cambridge (about 75 mile round trip) could be a costly waste of time as this is tantamount to all the current endo has done.Dawn crosses her fingers, toes and eyes and hopes for you that this not be so.> > Ditto the blood tests - interestingly the letter contradicts itself by saying in the first paragraph "the BLOOD SAMPLES have to be analysed at OUR laboratories in Addenbrookes". The second paragraph however says if I choose to have the blood tests done at my local hospital " bring the RESULTS with you to your appointment". (my capitals) but perhaps I'm being picky - sorry.No I see it as a contradiction too hon, but lets remain hopeful eh?> > The blood tests requested are:> U & E> Liver Profile> Bone Profile> Glucose> Thyroid function test - tick in the box for this and underneath is written:-> TSH, Free T4, Free T3 YAYYY> Other Endocrine - tick in the box for this and underneath is written:-> LH, FSH, Estradiol Yayyy but where are the other sex hormones lol(sorry I am also picky hehe) > > My 'ongoing symptoms" are (to name but a few, but not all of these all of the time) :-> Numbness & pins and needles in arms and hands at night no matter which way I lie.> Brain fog - unable to concentrate, keep making mistakes and double checking stuff at work making me slow> Confusion and poor short term memory - occasionally 'lose track of where I am' when driving home on a route I use every day.> Tiredness, particularly by mid afternoon and early evening when I get in> Pain/niggle in left rear flank near kidney area, feeling of needing the loo frequently> Excessive weight gain and inability to lose weight> Thinning hair particularly at front and parting.> Apart from the obvious thyroid problems there I see some of my adrenal symptoms> Are the blood tests above sufficient or should they also be testing other possibilities - Sheila recently said I urgently needed to get my adrenals checked. yes deffo> I guess I'm sounding very sceptical and pessiimistic but have been so fed up with the previous lack of help from the NHS endo I've (mainly not) been seeing for the past 20 months I really don't want to waste any more time. Oh we are with you on that one hon, but at least if you see them, Shiela will be able to give you some stuff to ask them and some suggestions of stuff to write down and take with you. Things I have stopped doing are expecting the best, because I am invariably disappointed, sad but true. I know for sure I have the people here to fall back on if it turns out to be disappointing. Expect disappointment and you may be pleasantly surprised . After seeing the terrible way all the people on forums have been inadequately treated with this condition nobody can really blame you for feeling this way either. Keep your chin up hon, I thought it was impossible to get better, even though from the stories I read I had a little hope and hardly dare hope too much but you will get there, help from these people at the NHS would be easier for you with the support of the forum on top; but whatever happens you will have the help of the people here.lotsa luvDawnx> >

[Guest guest]

It would really be helpful to have some of your opinions on some of the

contents of the letter:-

" You have been referred to our clinic to determine whether or not your

ongoing symptoms are due to your thyroxine treatment not being optimal " -

any views on this appreciated.

Make sure that you list all of your present

symptoms and signs and take these with you. You can check against the list of

symptoms and signs in our web site under 'Hypothyroidism' www.tpa-uk.org.uk . Also take your basal

temperature before getting out of bed in a morning and list these with your

symptoms too. Normal temperature is o98.6. anything lower than 97.8 is an

indication you still have low metabolism and that it needs raising.

Ditto the blood tests

- interestingly the letter contradicts itself by saying in the first paragraph

" the BLOOD SAMPLES have to be analysed at OUR laboratories in Addenbrookes " .

The second paragraph however says if I choose to have the blood tests done at

my local hospital " bring the RESULTS with you to your appointment " .

(my capitals) but perhaps I'm being picky - sorry.

This is because different laboratories have

different reference ranges because they use different blood testing kits. If

you take the results from your own hospital, make sure you have the reference

ranges for each of the tests. You should also ask for your ferritin level

(stored iron) to be tested, your B12 and Vitamin D also. This is because if

these are low, they will stop your thyroxine from being absorbed. You should

also make sure you get your Free T3 tested and also a test to see if you have

antibodies to your thyroid. Although the treatment is the same as any other

cause of hypothyroidism, it is useful to know. Tick TSH, Free T4 and Free T3

and add TPO antibodies in 'Other Endocrine'

Are the blood tests

above sufficient or should they also be testing other possibilities - Sheila

recently said I urgently needed to get my adrenals checked.

I guess I'm sounding very sceptical and pessiimistic but have been so fed up

with the previous lack of help from the NHS endo I've (mainly not) been seeing

for the past 20 months I really don't want to waste any more time.

For your own sake you should have the 24 hour

salivary adrenal profile done to see where your cortisol and DHEA lie because

if you have low adrenal reserve, again, your thyroxine will not be absorbed.

Sadly, I doubt the professors at Addenbrookes will pay the slightest attention

as low adrenal reserve is not recognised as a disease, they only check within

the NHS for Cushing's and 's disease. However, if you do suffer with low

adrenal reserve, you will be able to treat this yourself. Hypothyroid patients

simply cannot leave everything to the NHS doctors because they have not been

trained, and this is why it is important that we all learn as much as we can

about our condition and what we can do to help regain our normal health.

Good luck with your appointment, but make sure

they know you are aware of 'associated conditions' with hypothyroidism that

stop the thyroxine from working, that they know you know that some people are

unable to convert the mainly inactive hormone thyroxine into the active hormone

T3 etc. If you can, take somebody with you too - two heads are better at

remembering everything that was said than one.

Luv - Sheila

Regards to everyone

[Guest guest]

Hi Sheila,

I can't quite tell by this comment whether they mean " not being

optimal " not being on enough t4, or t4 being no good for the patient

and needing to look at other meds. It looks like they have been very

cautious with the wording, else it could be used against them and in

a more wider sense against t4 only treatment.

Ali xxx

<sheilaturner@...> wrote:

>

>

> It would really be helpful to have some of your opinions on some of

the contents of the letter:-

>

> " You have been referred to our clinic to determine whether or not

your ongoing symptoms are due to your thyroxine treatment not being

optimal " - any views on this appreciated.

[Guest guest]

hi Ai - thanks for your comments - it was me () who posted

parts of the letter and asked for comments.Sheila has given me some

helpful advice and tips regarding what to say and what tests to ask

for before I go. I agree with you - I too thought they seemed to have

chosen their words carefully and I'm hoping they are more open to

alternative treatments than my previous endo. The Professor's

secretary was kind and down to earth when I rang them on Friday - it

seems I have about another 13 weeks to wait for an appointment for

which she was very apologetic and she also agreed the letter they'd

sent was contradictory........

Addenbrookes have a link to www.thyroiduk.org on their website. This

site seems to empathise with the views on TPA-UK and they have an

encouraging sounding comment about weight (mine has ballooned out of

control in the past year)and about Armour in their FAQs - quote:-

Q. I am getting better, but I just cannot lose the weight I put on.

A. You will probably not lose weight until you are properly balanced.

For some people this can happen with thyroxine, but they need to be on

the right dosage for their metabolism to pick up. Some people find

that when they start on T3 or Armour thyroid, then their weight will

start to drop, when previously no matter how hard they try to lose

weight, it would not happen. A low carbohydrate diet is better for

losing weight

Q. Is Armour thyroid better than thyroxine?

A. Armour thyroid has all the components that a human thyroid produces

ie T4, T3, T2 and T1. Thyroxine is only T4. Many people need T3

especially and therefore may not have much benefit from thyroxine.

Also, we find that some people are intolerant of thyroxine simply

because it is synthetic.

So - everything crossed then!!!

Cheers

> >

> >

> > It would really be helpful to have some of your opinions on some of

> the contents of the letter:-

> >

> > " You have been referred to our clinic to determine whether or not

> your ongoing symptoms are due to your thyroxine treatment not being

> optimal " - any views on this appreciated.

>

[Guest guest]

Hi ,

Sorry to disillusion you, but you are not likely to get armour from Addenbrokes. I phoned asking them as I was unsure whether or not to go & see them as I am already well balanced on armour. I got a really snotty written reply back. I gather they will not, under any circumstances, prescribe armour, although they will T3.

Val

So - everything crossed then!!!Cheers