Letter from endo cancelling my appointment - Thyroid UK

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Letter from endo cancelling my appointment

Cup-cake7 profile image
8 Replies

Hi

But much really, the gp finally referred me then must have written to endo about me and the reply letter is, your patient is fine and the problem must lie somewhere else basically.....

Good to air it, He has said the tsh should be 0.5 to 2 so at that contricdictes as I'm 4.5 and says to continue use with same regime of levo which is actually 25 !! Or even 12.5 !!!!! Lovely lady but a bitmunbeleiveabke, but of course 'I'm normal ' and making it all up

I feel ......... there isn't a word for it

Anyone else had this letter, I know they are under great pressure

Il compose one back asking my questions when I'm calm. Xx

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Cup-cake7 profile image
Cup-cake7
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8 Replies
shaws profile image
shawsAdministrator

It is really so frustrating and exasperating when the 'Expert' who is supposed to have studied the dysfunction of the thyroid gland and how to remove symptoms, then on her letter to your doctor displays for everyone to see how unknowledgeable she really is - out of her depth as your doctor also appears to be too.

Your GP should immediately increase your dose and after six weeks have another blood test (it should be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take it afterwards. This helps TSH to be at its highest as that is all the appear to take notice off and many don't mind if it is anywhere in the range.

Ask GP, as you are not now going to consult with the endo if he can request Free T4 and Free T3 to give you an idea how you are converting T4 into T3. (He may be unaware that this is supposed to happen and you can highlight the reason in the following link). Your GP should also test B12, Vit D, iron, ferritin and folate too as deficiencies can also cause clinical symptoms.

We have to read, learn and ask questions on the forum and members will respond as we want members to recover their health and hopefully have a doctor who is receptive to the patient's requests. The aim is a TSH of 1 or lower with FT4 and FT3 in the upper part of the range.

No-one can possibly improve on 25mcg of levothyroxine. If GP wont increase you will have to tell him you will be forced to source your own levo as you have so many clinical symptoms. Tick off the following and say if you were on a satisfactory dose you'd have none at all.

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

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

After Christmas, if you wish, you can become a paid up member of Thyroiduk.org.uk who are at the forefront of trying to change things for the better for us who suffer. It costs £20 per year and we get four quarterly magazines and the aim is to right the wrong of diagnosing/treating patients.

thyroiduk.org.uk/tuk/member...

The more members we have the stronger, collectively, we become.

Clutter profile image
Clutter

Jeppy,

Annoying, but it happens. You are undermedicated on 25mcg to have TSH 4.5 and need to increase dose to bring TSH down to the 0.5 - 2.0 endo recommends. When you are optimally dosed you should start to feel better.

Cup-cake7 profile image
Cup-cake7 in reply toClutter

Hi thanks both. Yes I'm just so up to here with it all as tried to juggle what I now know,through you fantastic folk and to try 'keep in' with NHS as many have tried and often given up ......

The gp was irritated when I asked to see endo and asked re free t3 and antibodies which he doesn't do basically!

I've took myself to 50 when they said take 25 ( 0r 12.5!). And unfortunately the anxiety and tinitus whooshed up, so hard to function with it. They don't know,this and I would have run out of tablets, they keep on saying you are normal, no action

At least endo has set the range lower that's good, il highlight that with the next gp, then to work at getting it down if can tolerate

I've just seen it that this is actually so helpful to have it in writing

Please can you tell me your opinion?

As my t4 without any levo was pretty good but t3 in lower third, does this indicate poor conversion.? or the fact tsh was 4.9 did this show I'm simply hypo and the low three inevitable?

but then the adrenal fatigue thoughts came in (via dr peat book) so I'm working in that area now with the thought that I need to strengthen them, the cortisol is way out esp at bedtime, Being a worrying and a lot of life big stuff over the years they have took punishment I know.

I know there is mixed thoughts re this but this may be why even 50 was so difficult to sustain, there is nothing I'd like better than to double it whatever, get my tsh to one and feel amazing once more, I just feel so low as the doctors must have tagged me in as a crackpot - I've been three times about this rash I have and finally they have given me steroids which I don't want to take, I think it's about feeling so low and maybe anxiety psiriosis-

Very low and either irritable or a bit weepy

I hoped endo might have some input to consider if converting or adrenals,....... so annoying. Surely to goodness he must look at those basic areas.....?

Thanks again

Clutter profile image
Clutter in reply toCup-cake7

Jeppy,

It's simply not possible to determine whether or not you are a poor converter while you are undermedicated. Chances are once you are optimally dosed and thyroid levels are good that adrenals will also come right.

silverfox7 profile image
silverfox7

Yes get your levels increased first and retest after 6 weeks and up again if needed then when optimal check to see if you have a conversion problem and test Vit D, B12, folate and ferritin then check against SeasideSusie's post as to how to get things optimal. These 4 help with conversion issues and we as general health though it can take a while to get vits up to the required level but it's well worth the effort.

Cup-cake7 profile image
Cup-cake7 in reply tosilverfox7

Thanks for reply yes I'm on all this now and remain gf no antibodies this time yeah

My b12 is now over!! Do you know roughly how long it takes to come back into line

silverfox7 profile image
silverfox7 in reply toCup-cake7

No idea but imagine that it varies between individuals. There is a PA group on HealthUnlocked. May be they can help on that one.

Cup-cake7 profile image
Cup-cake7

......Iv wondered how others have got doctors to reduce tsh to a one

I fight a brick wall and seen four who all say ' normal no action '

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