Re: Diasastrous visit to local Endo

[Guest guest]

Ooooops a correction.I posted:I

did manage to tell him that I feel like I am being strangled and he felt my neck and will send me for a scan of my thyroid – I had this scan

on Tuesday and the radiologist said to me that he could see straight away why I am Hyperthyroid and suffering from symptoms. He then said that when I had the RAI treatment that "they did a right number on you" and gave me far too high a dose. Seemingly I have so little thyroid left

that he struggled to find it at all. I don't know what the implications

of this are and despite googling haven't managed to find much at all.This should of course be Hypothyroid.Lynn

[Guest guest]

Snip>>>>>>> My hopes for getting better through the NHS have been well and truly> dashed > Right now I actually feel like just dropping it all as I just don't have> the energy or the will to deal with it any more,> > Lynn

((((((((Lynn)))))))

[Guest guest]

Hi Lyn

When I read your post I nearly cried - bless you.

Please dont give up -  you have got this far without any help so a bit further

with seeing Dr Skinner and you will be well on the road to recovery.

So many of us have had the same arrogant and rude doctors' diagnosis - ignore

them and keep trying.   Some of them do manage to make you feel as though you

are wasting their time! 

I gave up with NHS and self medicate and feel so much better - not 100% but even

half of that makes life worth living!

Lots of really good advice on this site from lots of lovely people - good luck

with Dr Skinner and hope you feel better soon.

Kind regards

Colleen x

________________________________

From: lynninverness <lynnmackay@...>

thyroid treatment

Sent: Friday, 4 November 2011, 13:27

Subject: Diasastrous visit to local Endo

 

Apologies in advance for the ultra long post, congratulations if you manage to

get to the end in one sitting and without needing a nap in the middle!

[Guest guest]

Oh Lynn, you poor thing. It sometimes makes me feel as if some of these Endos

are misogynists.

Isn`t the answer in what the radiologist noticed when you had your scan, as

below ? Perhaps this twit of an Endo knows they`ve slipped up and that`s why

he`s being so arrogant and defensive - blaming the victim.

At least you`ve got an ace up your sleeve with Dr. Skinner. Good luck.

Jane

>

>

> – I had this

> scan on Tuesday and the radiologist said to me that he could see

> straight away why I am Hyperthyroid and suffering from symptoms. He then

> said that when I had the RAI treatment that " they did a right number

> on you " and gave me far too high a dose. Seemingly I have so little

> thyroid left that he struggled to find it at all. > Lynn

>

[Guest guest]

Hi Lynn

Where to start? :-)

Do you think that this doctor mixed you up with another patient from a few

years ago?

>He also said that the TSH test tells you everything

> about the levels of thyroid - T4, T3 everything and that my results show

> that I have plenty of them all and there is nothing wrong with me.

But he didn't actually check free T3, no? If this is the case, how can he say

everything is ok - you don't feel ok, after all. That's the main thing. Are

your lingering symptoms only symptoms of thyroid, or can they be caused by other

hormones, too?

>

> Seemingly when I went to see him last time they tested for other causes

> for my exhaustion (it is this one symptom they latch on to and ignore

> the rest).

I think many of us are familiar with that - mention key words and they just

think 'depression' 'ME' - they just don't listen.

>

> The GP then turned round and said there is nothing wrong with your

> thyroid; you need to stop looking to the thyroid for the cause of your

> symptoms and look elsewhere. OK I said; test me for other things to rule

> them out. He then said I have been tested for everything I could

> possibly be tested for, referring to the list above, meaning sackie,

> EB virus and Lyme Disease. So that is that.

Have they tested the sex hormones, growth hormone (IGF-1), vitamins like Vitamin

D 3, and minerals, eg copper, magnesium, calcium?

Have you checked to see if your symptoms could be caused by other things like

sex hormones? Irrespective of tests, do you feel your symptoms fit adrenal

problems? What i'm trying to get at is do you think it's 'just' thyroid, or

something else in addition to thyroid?

> I asked what my Ferritin level was now as I have been taking the Ferrous

> Sulphate since the beginning of September when my level was 4 ng/ml. He

> said the level was 19. I asked him what the range was and he said 24. As

> I didn't have my previous results with me and no specs so I

> couldn't read the screen I knew that didn't sound quite right

> but couldn't argue with him. Looking at my results from the last

> time the ranges are: 24 – 240 If menstruating and 30 – 480 not

> menstruating. Well I am not menstruating but he didn't even ask me

> that. I also realised that they will be quite happy getting me to 24,

> the lowest part of the range then discontinuing the Ferrous Sulphate.

Well 24 is not good is it. Again they don't care if it's 'optimal' but just 'in

range'. have you had vit b12 checked?

> For several years she complains of feeling constantly tired, tending to

> gain weight and she has noticed that her concentration and memory are

> both particularly poor.

All thyroid symptoms!?

>I have explained to her that the

> pituitary thyroid hormone receptor is a receptor exclusively for T3 and

> that the maintenance of a normal TSH on Thyroxine replacement is

> therefore dependant on the conversion of T4 to T3.

Please read this - it sounds like the pituitary's under different control to the

rest of the body:

http://nahypothyroidism.org/thyroid-hormone-transport/#pituitary

The TSH will also not detect such cellular hypothyroidism because the pituitary

has completely different transporters that are not energy dependent and increase

transport activity, while the rest of body has impaired thyroid transport (see

thyroid transport graph).

Pituitary thyroid transport determines TSH levels

As discussed previously, the pituitary is different than every cell in the body

with different deiodinases and different high affinity thyroid receptors. It is

also shown to have unique thyroid transporters that are different than those in

the rest of the body (1,17,43,50,52,55,59,60,61). The pituitary thyroid hormone

transporters are shown not to be energy dependent and will maintain or increase

the uptake of T4 and T3 in low energy states, while this is not the case for

transporters in other parts of the body that have significantly reduced

transport (1,17,22,43,50,52,55,59,60,61).

The transporters for T4 and T3 in the pituitary are also not inhibited by

numerous environmental toxins and substances produced by the body during

physiologic stress and calorie reduction that inhibit thyroid transport into

other cells in the body, including bilirubin and fatty acids. Thus, the reduced

uptake of T3 and T4 and subsequent intracellular hypothyroidism that occurs

throughout the body from numerous conditions stated above is not reflected by

TSH testing because thyroid uptake in the pituitary cells is not effected,

making the TSH a poor marker for cellular thyroid in any tissue other than the

pituitary (1,43,55).

Even common medications, including benzodiazepines such as diazepam (Valium),

lorazapam (Atavan) and alprazolam (Xanax), are shown to inhibit T3 uptake into

the cells of the body but have no effect on transport of T3 into the pituitary

(61).

> Her most recent thyroid function test taken on the 3rd of May do indeed

> show good thyroid hormone replacement with a Free T4 of 23.2 pmo/l and

> TSH 0.12 mlU/i which is in fact slightly below the quoted reference

> range.

No free T3 though?

> While she has no clinical features of hypoadrenalism it would be

> important to exclude this particularly as the initial cause of her

> thyroid disease was autoimmune.

Did they check you for adrenal antibodies?

> My hopes for getting better through the NHS have been well and truly

> dashed and now all my hopes rest with Dr Skinner (appointment in 3 weeks

> and counting), in addition to the advice and guidance on this forum.

It sounds like you'll be better off seeing Dr Skinner than this doctor. I have

not seen Dr Skinner but he sounds very good and I would expect that he will be

able to diagnose whether your symptoms are thyroid or not. and give you the

proper treatment.

>My

> other half wants me to order T3 privately and start taken it myself but

> I am going to wait until I see Dr Skinner and see what he says to me. If

> Dr Skinner reiterates what the Endo and GP have said then I will accept

If I were you I would agree with waiting until I saw Dr Skinner.

>

> Right now I actually feel like just dropping it all as I just don't have

> the energy or the will to deal with it any more, not to mention the

> capacity for remembering all the little ins and outs etc.

Well if you see someone like Dr Skinner, then if hypothyroidism is the cause of

your problems,then you won't have to carry on trying to sort it yourself, will

you, you can hand it over to him and work with him and get your meds sorted

-whatever works for you?. Can you try and rest until you see Dr Skinner and

not worry too much (easier said than done, i know)

>It has taken

> me 6 hours just to put this post together; just as well I had the day

> off work as I now just want to sleep. I have never felt so low in my

> entire life.

Things will get better. Many of us have been failed by various doctors and

have had to resort to private treatment and have improved. You just have to see

the right doctor and get the right tests and diagnosis >> if you respond to

thyroid medication (T4+T3 say, or NDT) then it proves that thyroid was the cause

of your problems and that your instincts were right. Though of course, no one

will say " Sorry, we should have listened to you " .

> I don't even have to get dressed up) and I'll probably end up doing my

> usual Friday night party trick - asleep in front of the TV by 7pm. I'm

> only 45 years old for heaven's sake.

Have you been tested for sleep apnoea? This can be a thyroid symptom, but can

be a big problem in it's own right (it is for me). you don't have to be

overweight to have it either.

Please hang in there Lynn, i would make a list of your symptoms and take them to

Dr Skinner. I have heard very good things about him and nothing bad, so I hope

he can help you too

chris

[Guest guest]

Don't give up Lynn, this really is one illness that you do need

a lot of perseverance to get you to a place where you will start to feel

better. If you knew what I personally had been through and what I am like now,

you would carry on. There were times I just KNEW there was no point in keeping

on keeping on and trying, trying, trying as I would never feel better again.

How wrong I was, and my experience is the only reason why I opened TPA because

I knew that there IS light at the end of the tunnel for those who are prepared

to persevere.

If your doctors don't ca\re, then you have to care for yourself

- if you don't, who else is going to get you well. We can help you every step

of the way, and you will have to take baby steps, but more than anything, YOU

HAVE TO WANT THIS ENOUGH TO DO IT. If there is nothing left but for you

to take your thyroid health into your own hands, then so be it. You are not

alone. You are with tens of thousands of us. And, we have done it.

Luv - Sheila

Snip>>>>>>

> My hopes for getting better through the NHS have been well and truly

> dashed

> Right now I actually feel like just dropping it all as I just don't have

> the energy or the will to deal with it any more,

>

> Lynn

((((((((Lynn)))))))

[Guest guest]

We've all been there Lynn. It's the rollercoaster and it comes with the

territory.

I have come out of the endo department at my local hospital so many times in

tears because of the rude, the unhelpful and the just plain ignorant.

I have been told things that anyone who spent 5 minutes on the internet looking

at reputable sites would know are not true.

I have had no alternative but to read, learn and challenge every step of the

way. Result, two years on, instead of being housebound with CFS, I am 80% well

on T3, still working and have just climbed a [small] mountain.

It can be done and we will support you.

Take it easy for a while, recoup what mental energy can, pick yourself up, dust

yourself off, you know the rest.

Dx

[Guest guest]

Hi Lyn,Please do not give up! Dr Skinner is unlike any doctor I have ever come across - he will listen to you and treat you until you find the right dosage that makes you well and he will make you much, much better.I am in the process of complaining to the NHS about my treatment - or rather the lack of it, but I have accepted they will do nothing for me and if I had left it up to them I would be jobless and really ill. I am still fighting and trying to persuade my local trust that I do need the treatment and I will continue to fight them until they finally see that they are in the wrong.Don't give up hope and don't let them win - you have a right to be well and not to have to put up with feeling ill.Take

careDawn

[Guest guest]

Hi all

Could someone please confirm that this sentence (from Lynn's endo letter) is in fact correct?

She is well informed over normal thyroid physiology and understands that Tri-iodothyronine is the active thyroid hormone and that in patients receiving Thyroxine exclusively, normal T3 levels are maintained by peripheral conversion of Thyroxine. I have explained to her that the pituitary thyroid hormone receptor is a receptor exclusively for T3 and that the maintenance of a normal TSH on Thyroxine replacement is therefore dependant on the conversion of T4 to T3.

Thanks in advance... Gill