Re: Feedback from GP re: my daughter - help please

[Guest guest]

Hi

Not the ideal solution I realise but you could find

a private doctor and get some private tests done, I just had some done and they

cost me £135 for full thyroid screen – the cost of the test and the admin

charge for the nurse.  Results were in next day. 

I’d suggest you get a doctor to do them

(rather than using a mail order test service) as then your GP will have to take

them seriously when you go back and wave them under his nose, and tell him you

are entitled to this care for FREE on the NHS!!

I also see an endocrinologist privately, its not as

expensive as you might think, feel free to mail me offline if you’d like

more info.

Best wishes

Clearly I am not going to get very far here - has

anyone any suggestions?

Freelance Fundraiser & Copywriter

07810 783 337

I am using the Free version of SPAMfighter.SPAMfighter has removed 3493 of my spam emails to date.Do you have a slow PC? Try free scan!

[Guest guest]

Hi , Change your doctor! Wait until the TSH is back though- if it is high then he may suddenly have a change of heart- mine did when it was 126 instead of 1.0! At leqst he is doing ferritin. > thyroid treatment > From: m.kidson60@...> Date: Thu, 6 Jan 2011 12:01:54 +0000> Subject: Feedback from GP re: my daughter - help please> > Dear All,> > Oh dear - my daughter had her bloods taken this morning. I received a very frosty welcome from the GP - he immediately talked about her having bloods taken at the hospital a few years sgo - as though they would have picked something up the> > Clearly I am not going to get very far here - has anyone any suggestions?> > Thankyou.> > > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

, why stay with a GP who doesn't know anything about thyroid

disease and who is giving you incorrect information. You go back to him with a

very frosty look on your face and present him with the following and tell him

that THIS is why we need to test free T3 and free T4 - irrespective of whether

the TSH was 'normal' or not.

Thyroid function blood test results can be influenced by many

factors, any of which should be taken into consideration, e.g.

·

Labelling errors

·

Bacterial contamination

·

Yeast/Fungal contamination

·

Clotting

·

Sampling errors

·

Sample preparation errors

·

Sample storage errors

·

Thermal cycling

·

Antithyroid antibodies (any)

·

Antibodies from any other cause

·

Presence of specific ‘toxins’ in the blood

·

Presence of pharmaceutical drugs (interferences) within the

blood

·

The method of analysis being carried out eg radio-immune assay

(RIA)

·

‘Systematic’ errors in analytical equipment or

methodology

·

Composite errors <> pre-analysis (not mentioned above)

·

MCT8 mutations

It is also known that thyroid function tests will be normal also

in patients who have a proven carcinoma. The T4 and TSH value can be misleading

in such cases.

Many individuals with classic symptoms of hypothyroidism, such

as low body temperature, joint pain, fatigue and depression, are discouraged

when they’re told that their thyroid hormone levels are within the normal

range. The question of whether they might be resistant to their body’s

own thyroid hormone is seldom considered. Yet, a disease known as thyroid

hormone resistance can prevent thyroid hormone from reaching the body’s

cells.

The discovery of MCT8 mutations explains laboratory

discrepancies (1) e.g. cases in which the lab results didn’t fit a

particular pattern. It also explains how thyroid hormone resistance can

cause TSH to appear normal even with a low FT4. In many instances only

the TSH test is performed. If the TSH result is normal, and symptoms of

hypothyroidism are observed, tests for FT4, FT3 and T3 should all be performed.

None of these types of error are ever shown as being part of the

reference range, but they all add to the unquantifiable

‘unreliability’ of the final number that appears on a lab report;

stated to be within/outside a reference range. The labs expect, but often

don’t get, notification of antibodies found by other labs or by

investigations showing antibody activity, to enable proper screening

(dilutions) for likely errors. e.g. vitiligo, alopecia, ongoing autoimmune

symptoms specific to such as lupus, autoimmune attacks on specific organs,

histology samples, haematological examinations.(2) A search on Pubmed

shows 126 such cases.

…and here are the references:

1.

Winter and Neil , A New

Type of Thyroid Disease, Advance for Administrators of the Laboratory, June,

2008: 46-50.

2.

Sapin R. [interferences in immunoassays:

Mechanisms and outcomes in endocrinology]

Ann Endocrinol (Paris). 2008 Nov;

69(5):415-25. Epub 2008 Jun 5.

From: thyroid treatment

[mailto:thyroid treatment ] On Behalf Of m.kidson60@...

Sent: 06 January 2011 12:02

thyroid treatment

Subject: Feedback from GP re: my daughter -

help please

Dear All,

Oh dear - my daughter had her bloods taken this morning. I received a very

frosty welcome from the GP - he immediately talked about her having bloods

taken at the hospital a few years sgo - as though they would have picked

something up then! I asked what he would be testing for he said the labs would

test TSH levels - nothing else unless these were adnormal - he refused to

listen to me whan I asked if we could do them now - his statement was why would

we need to test free T4 and free T3 if TSH levels were normal - it is thyroid

stimulating hormone therefore if there is enough everything else would be fine

as it would all be converted! He also refused to do most of the other tests

that were suggested, however, I think that he is doing ferritin - difficult to tell

as he was very offhand.

Clearly I am not going to get very far here - has anyone any suggestions?

Thankyou.

[Guest guest]

Hi All,

Many thanks for your replies. Living in a small market town leaves us with very

few options for changing GP's. However, I am more than happy to go private with

this elsewhere if I have to.

Anyway, here are the test results:

Serum TSH 1.92mu/L (0.25 - 5.0)

Serum free T4 16.3pmol/L (12-25)

Serum Ferritin 55ug/L (14-180)

There were alot of other results - liver function/full blood count/urea and

electrolytes, plasma glucose level. No doubt these are not of concern here - if

anyone knows where I oculd get help with interepreting these I would be very

grateful. Some of the results were right at the very top of the range - I don't

feel happy about those.

As far as the GP is concerned all is normal would you agree?

Many thanks,

[Guest guest]

i think you should post them anyway, with ranges, someone here might be able to

help you

chris

>There were alot of other results - liver function/full blood count/urea and

electrolytes, plasma glucose level. No doubt these are not of concern here - if

anyone knows where I oculd get help with interepreting these I would be very

grateful. Some of the results were right at the very top of the range - I don't

feel happy about those.

[Guest guest]

Errr,,, no, not normal if she feels ill. When TSH gets to 2.5 in some

countries she would be considered as hypothyroid and treated, and her tsh is

nearer to 2.5 than it is to normal, which is 1.

Does she have thyroid antibodies? (What do you mean he never bothered with

that test? grrrrr you can get it done at genova diagnostics)

Worth having a look at http://www.labtestsonline.org/ for interpretations.

x

>

> Hi All,

>

> Many thanks for your replies. Living in a small market town leaves us with

very few options for changing GP's.

[Guest guest]

OK here goes:

i think you should post them anyway, with ranges, someone here might be able to

help you

chris

Liver Function Test

AST Serum 37iu/L (<38)

ALT/SGPT serum level or 60iu/L (<38)

Serum lactate dehydrogenase level 374iu/L (200-520)

serum gamma GT level 9umol/L (<17)

Plasma Glucose level - no food since 8.00pm the previous evening

4.9mmolL (3.0-7.0)

Urea and Electrolytes

Serum urea level 3.4mmol/L (2.5-7.5)

Serum sodium 146mmol/L (134-146)

Serum potassium 4.6mmol/L (3.5-5.0)

Serum Creatinine 46umol/L (34-77)

Serum C reactive protein level 4mg/L (<4)

Bone profile

Serum total protein 75g/L (60-80)

Serum albumin 48g/L (35-50)

Serum calcium 2.54mmol/L (2.10-2.55)

Corrected serum calcium level 2.45mmol/L (2.10-2.55)

Serum inorganic phosphate 1.49mmol/L (1.2-1.7)

Alk Phos 317 iu/L (20-450)

Blood

WBCs 6.4 10*9/L (4-13.5)

RBCs 4.93 10*12/L (4.0-5.5)

HB 14.0g/dL (11.5-14.5)

Haematocrit 0.419 (0.32-0.45)

MCV 84.9fL (75-89.5)

MCH 28.4pg (24.0-34.0)

Red blood cell distribution width 13.6% (11-16)

Platelet count 314 10*9/L (150-400)

Neutrophil count 3.1 10*9/L (2-7.5)

Lymphocyte count 2.6 10*9/L (1.0-5.0)

Monocyte count 0.6 10*9/L (0.2-1.0)

Eosinophil count 0.1 10*9/L (<0.7)

Basophil count 0.0 10*9/L (<0.2)

Thankyou for any help with interpreting these - some of these don't look right

to me.

[Guest guest]

Thankyou - he has done more tests than he said he would do, but, not

enough. I can see that I have to get some private tests done!

>

> Does she have thyroid antibodies? (What do you mean he never bothered with

that test? grrrrr you can get it done at genova diagnostics)

[Guest guest]

Dear Sheila,

Thankyou so much for getting back to me with this information. I haven't as yet

done as you recommended. I have been fighting for years with these GP's not only

with my own health, but, that of my daughter and son as well. It has worn me

down, and although I try not to be intimidated by them, I found it very hard

yesterday when the GP was so frosty and although I knew that he was giving me

wrong information I felt that I couldn't push things any further.

Interestingly, I only got these blood tests done as we saw a locum Dr - with my

son it was locum Dr who got him to the hospital where he was eventually

diagnosed with IgA Nephropathy.

I am finding all of this difficult to deal with.

I also see from the files that IgA Nephropathy is considered an auto immune

disease - so on this basis alone, my daughter's thyroid antibodies surely should

be tested.

I am first going to ask the local private hospital if they will take the blood

for my daughter and then order the tests from Genova.

As, I am not going to get anywhere with the NHS, please could you e-mail me off

list with your list of private endocrinologists and Drs.

Thankyou.

>

> , why stay with a GP who doesn't know anything about thyroid disease and

> who is giving you incorrect information. You go back to him with a very

> frosty look on your face and present him with the following and tell him

> that THIS is why we need to test free T3 and free T4 - irrespective of

> whether the TSH was 'normal' or not.

>

>

>

>

[Guest guest]

Dear - I have hashitoxicosis, an auto-immune condition and first caught it out with an abnormal blood test 6 years ago but for about a year after that I had normal blood tests. Even the endocrinologists (at top London teaching hospital) were useless saying everything was fine (OK then, I must be psychotic with very bad digestive problems), until prof at King's finally tested antibodies and diagnosed my interesting auto-immune thyroid condition. Last prof I saw said I'd have to test my blood every 3 hours to get a full picture of the condition. With the range of interesting and rare auto-immune thyroid condiditons there's no way your GP could know what's going on, your daughter needs a referral to someone who does, even if that means travelling 30 miles to another GP who'll give you a referral.

good luck

jo

[Guest guest]

Post the other blood results here and we will have a go at

interpreting what we can. We need the reference range for each of the tests

done. It would have been good had they tested her free T3 to see whether the

mainly inactive T4 is actually converting to the active T3. Serum Ferritin is

on the low side - it should be between 70 and 90.

Luv - Sheila

Many thanks for your replies. Living in a small market town leaves us with very

few options for changing GP's. However, I am more than happy to go private with

this elsewhere if I have to.

Anyway, here are the test results:

Serum TSH 1.92mu/L (0.25 - 5.0)

Serum free T4 16.3pmol/L (12-25)

Serum Ferritin 55ug/L (14-180)

[Guest guest]

Oh

dear , I am so sorry that you and your family are suffering so much as a

result of these terrible doctors. Yes, indeed . IgA nephropathy is a kidney disorder in

which antibodies to a protein called IgA build up in

kidney tissue. If you have one autoimmune disorder, it is likely that there is

another autoimmune disorder and when you write your letter, ask why, under the

circumstances, he was not tested for thyroid antibodies and could these now be

arranged for your son, your daughter and yourself. I will send you my list of

doctors.

Luv -

Sheila

Interestingly, I only got these blood tests done as we saw a locum Dr - with my

son it was locum Dr who got him to the hospital where he was eventually

diagnosed with IgA Nephropathy.

I am finding all of this difficult to deal with.

I also see from the files that IgA Nephropathy is considered an auto immune

disease - so on this basis alone, my daughter's thyroid antibodies surely

should be tested.

___

[Guest guest]

Liver Function Test

AST Serum 37iu/L (<38)

ALT/SGPT serum level or 60iu/L (<38)

Serum lactate dehydrogenase level 374iu/L (200-520)

serum gamma GT level 9umol/L (<17)

Plasma Glucose level - no food since 8.00pm the previous evening

4.9mmolL (3.0-7.0)

Urea and Electrolytes

Serum urea level 3.4mmol/L (2.5-7.5)

Serum sodium 146mmol/L (134-146)

Serum potassium 4.6mmol/L (3.5-5.0)

Serum Creatinine 46umol/L (34-77)

Serum C reactive protein level 4mg/L (<4)

Bone profile

Serum total protein 75g/L (60-80)

Serum albumin 48g/L (35-50)

Serum calcium 2.54mmol/L (2.10-2.55)

Corrected serum calcium level 2.45mmol/L (2.10-2.55)

Serum inorganic phosphate 1.49mmol/L

(1.2-1.7)

Alk Phos 317 iu/L (20-450)

Blood

WBCs 6.4 10*9/L (4-13.5)

RBCs 4.93 10*12/L (4.0-5.5)

HB 14.0g/dL (11.5-14.5)

Haematocrit 0.419

(0.32-0.45)

MCV 84.9fL (75-89.5)

MCH 28.4pg (24.0-34.0)

Red blood cell distribution width 13.6% (11-16)

Platelet count 314 10*9/L (150-400)

Neutrophil count 3.1 10*9/L (2-7.5)

Lymphocyte count 2.6 10*9/L (1.0-5.0)

Monocyte count 0.6 10*9/L (0.2-1.0)

Eosinophil count 0.1 10*9/L (<0.7)

Basophil count 0.0 10*9/L (<0.2)

Thankyou for any help with interpreting these - some of these don't look right

to me.

[Guest guest]

Sorry , I meant to write that these test results look normal and I can't

see any problem here.

Luv - Sheila

Liver Function Test

AST Serum 37iu/L (<38)

ALT/SGPT serum level or 60iu/L (<38)

Serum lactate dehydrogenase level 374iu/L (200-520)

serum gamma GT level 9umol/L (<17)

Plasma Glucose level - no food since 8.00pm the previous evening

4.9mmolL (3.0-7.0)

Urea and Electrolytes

Serum urea level 3.4mmol/L (2.5-7.5)

Serum sodium 146mmol/L (134-146)

Serum potassium 4.6mmol/L (3.5-5.0)

Serum Creatinine 46umol/L (34-77)

Serum C reactive protein level 4mg/L (<4)

Bone profile

Serum total protein 75g/L (60-80)

Serum albumin 48g/L (35-50)

Serum calcium 2.54mmol/L (2.10-2.55)

Corrected serum calcium level 2.45mmol/L (2.10-2.55)

Serum inorganic phosphate 1.49mmol/L (1.2-1.7)

Alk Phos 317 iu/L (20-450)

Blood

WBCs 6.4 10*9/L (4-13.5)

RBCs 4.93 10*12/L (4.0-5.5)

HB 14.0g/dL (11.5-14.5)

Haematocrit 0.419 (0.32 - 0.45)

MCV 84.9fL (75-89.5)

MCH 28.4pg (24.0-34.0)

Red blood cell distribution width 13.6% (11-16)

Platelet count 314 10*9/L (150-400)

Neutrophil count 3.1 10*9/L (2-7.5)

Lymphocyte count 2.6 10*9/L (1.0-5.0)

Monocyte count 0.6 10*9/L (0.2-1.0)

Eosinophil count 0.1 10*9/L (<0.7)

Basophil count 0.0 10*9/L (<0.2)

Thankyou for any help with interpreting these - some of these don't look

right to me.

[Guest guest]

Thankyou Sheila and everyone else who replied. My son's IgA nephropathy was

triggered by a strep throat infection which the GP's refused to treat - as the

paediatrician at the hospital said once the reaction starts it can't be stopped

- he was not impressed that my son had not been given antibiotics. The GP's

treated me as an over anxious Mother - it was the locum GP who decided that he

would check with the hospital - they wanted to see him straight away! I have

alot of research about IgA nephropathy, but , I have never actually considered

it an auto-immune disease which of course it is.

The two local private hospitals will not see my daughter without a referral from

the GP - everyone seems frightened of seeing a child.

I am very concerned about my daughter. Over the last few weeks she has been

finding it harder to swallow capsules and she complains of something in her

neck, this evening she says that it hurts and she has really struggled to

swallow her evening supplements. When she is in bed, she is very frightened and

when I asked if the lump in her neck affected her breathing she said that she

didn't know, which usually means that it does. She has a very thick neck and a

lump of fat at the top of her shoulders and at the bottom of her neck. She feels

stiff, is puffy and is very tired. In the absence of any medical help, I have

given her some iodine (Iodoral) today and she says that she feels a bit better

and has a bit more energy.

Without some proper blood tests I am stuck and my daughter is suffering. Please

does anyone know anyone who might see her?

Thanking you in advance.

>

> Oh dear , I am so sorry that you and your family are suffering so much

> as a result of these terrible doctors. Yes, indeed . IgA nephropathy is a

> kidney disorder in which

> <http://www.nlm.nih.gov/medlineplus/ency/article/002223.htm> antibodies to a

> protein called IgA build up in kidney tissue. If you have one autoimmune

> disorder, it is likely that there is another autoimmune disorder

[Guest guest]

Hello , I would first speak to the Head of Practice as a

matter of urgency and ask for a referral for a short synacthen test to see

whether she could be suffering with Cushing's Syndrome (too high a level of

cortisol secretion by the adrenals). If they won't do that, you will need to get

the 24 hour salivary kit from Genova to test her cortisol and DHEA status at

four specific times during the day. Is there a possibility she could be

suffering with Cushing's Syndrome? http://www.mayoclinic.com/health/cushings-syndrome/DS00470/DSECTION=symptoms

.. Also type 'Cushing's syndrome' into Google and then click 'Images' at the top

left of the screen and then click 'Search' and see whether your there are any

similarities to your daughter.

Go to our FILES section accessible from the Home Page of this

forum and click on the FOLDER 'Discounts' and then click on 'Genova Diagnostics'

and follow the instructions there to claim your discount as a TPA member. You

must write Thyroid Patient Advocacy as your Practitioner, but the results will

be sent direct to you. They will send out the 24 hour salivary kit as soon as

they receive your order and charge you when you send it back.

Luv - Sheila

I am very concerned about my daughter. Over the last few weeks she has been

finding it harder to swallow capsules and she complains of something in her

neck, this evening she says that it hurts and she has really struggled to

swallow her evening supplements. When she is in bed, she is very frightened and

when I asked if the lump in her neck affected her breathing she said that she

didn't know, which usually means that it does. She has a very thick neck and a

lump of fat at the top of her shoulders and at the bottom of her neck. She

feels stiff, is puffy and is very tired. In the absence of any medical help, I

have given her some iodine (Iodoral) today and she says that she feels a bit

better and has a bit more energy.

,_._,___

[Guest guest]

Hi

I hope you don't mind me asking but how was the IGA nephropathy diagnosed? i

have found there is blood in my urine (not a huge amount but it's always there)

and also had these tests done 18 months ago - i wonder if they could indicate

kidney issues and if they've got worse over time? interestingly kidney problems

are linked to low testosterone.

sorry i hope the mods don't mind me asking this on here, if you do mind would

you mind mailing me privately if you have a moment please?

IgG 11.2 g/L range 6.0-16.0

IgA 2.76 g/L range 0.6 - 2.8

iGM 0.83 g/L range 0.5-1.9

" Protein electrophoresis increased A2 globulins but no discrete band "

Thanks

Chris

>

>

> Thankyou Sheila and everyone else who replied. My son's IgA nephropathy was

triggered by a strep throat infection which the GP's refused to treat - as the

paediatrician at the hospital said once the reaction starts it can't be stopped

- he was not impressed that my son had not been given antibiotics. The GP's

treated me as an over anxious Mother - it was the locum GP who decided that he

would check with the hospital - they wanted to see him straight away! I have

alot of research about IgA nephropathy, but , I have never actually considered

it an auto-immune disease which of course it is.

>

[Guest guest]

Hi Sheila and all,

Thankyou so much. She has 80% of the symptoms listed. and the photos are very

definitely very much like her, especially with the weight round the middle, the

face and the buffalo hump.

I have ordered the 24hr salivary test as I see that the short synacthen test is

also not complete.

I think that I have found somewhere that will do blood tests.

I have not pucked up courage to ring the GP practice.

Sorry I keep forgetting to trim my posts.

Is there a possibility she could be

> suffering with Cushing's Syndrome?

> . Also type 'Cushing's syndrome' into Google and then click 'Images' and see

whether your there

> are any similarities to your daughter.

[Guest guest]

Hi

> I hope you don't mind me asking but how was the IGA nephropathy diagnosed?

If it is OK with the mods - here you are:

My son developed a severe sore throat (strep infection), with a high fever. He

had aches & pains in all of his joints and his face was swollen. A short time

afterwards he had gross haematuria (blood in urine) - we are talking about

bright red blood, enough to colour the urine bright red. The GP's were not

interested, they felt that it was a one off, nothing to worry about. The gross

haematuria continued, I still kept taking him to the GP's, still no joy. He

developed another severe sore throat and the same symptons and this time I was

on the verge of taking him to A & E. Instead, I took him to the GP the next

morning, he was seen by a locum GP who phoned the hospital just in case. He was

sent straight in, the paediatrician was great, but, he had to eliminate

everything else before he could take things further. This took some time and my

son had to have more episodes of gross haematuria before he was able to refer

him to Birmingham Children's Hospital. By this time everyone (except the GP's)

were pretty confident of the diagnosis. The consultant did a biopsy to confirm

it. It appears that my son was at the typical age when this appears.

Sorry, this is probably not much help. As you can see, it took alot of effort to

get this sorted, but, once with the right professional the diagnosis was soon

made. I think we were lucky that the paediatrician had other adolescent boys

with the same condition.

He is monitored once a year, unless he has another episode of gross haematuria

in which case they check that his blood pressure etc. is OK, he is checked for

blood in the urine and he always has microscopic levels now. He gets very tired

and the paediatrician expects him to burn himself out as a teenager, as they

carry on instead of resting!

The main feature is the haematuria whether gross or microscopic. There is

apparently no treatment (or at least none that I am aware of). We do not know if

he will need new kidneys eventually.

[Guest guest]

Hi

Thanks for sharing this info. I have asked my gp about the blood in the urine

thing and will see what happens now.

it seems it's something else they can't/don't treat.

many thanks for your time and I hope your son is better now

best regards

chris

>

> Hi

>

> > I hope you don't mind me asking but how was the IGA nephropathy diagnosed?

>

> If it is OK with the mods - here you are:

>

> My son developed a severe sore throat (strep infection), with a high fever. He

had aches & pains in all of his joints and his face was swollen. A