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>

> Hi

>

> I wonder if you are reacting to the fillers in the pills? You can get

> hold of liquid thyroxine, maybe that would be a good route to try next?

>

> Shelia mentions the liquid stuff in this message

>

> thyroid treatment/message/2021

> 0

>

> Jacqui xx

Hi Jacqui

thank you for that reference. I will check it out.

The consultant tried this by putting me on Evotrox last time which is a liquid

thyroxine and

I still reacted badly to it so he took me off it!

Thanks again

>

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Hi Sue

Those with hypothyroidism, either undiagnosed, diagnosed, treated or not, would all like some advice about how to steer ourselves through the NHS. It is because of the NHS that most of us actually end up on TPA and other thyroid forums, or looking through the many websites given over to this one problem.

I contacted TPA a couple of months back when 1st diagnosed with under active thyroid (THS at 13.1) and was reacting to the daily 50 mg does of Levothyroxine I was being given.

Remind us of the symptoms you suffered when taking 50 mcgs Thyroxine Sue.I was sent to have a blood test for adrenal glands. Which the consultant told me were fine.

The NHS test to see the state of your adrenals is not good. You need the 24 hour salivary profile which tests to see where your cortisol and DHEA levels are at four specific times during the 24 hours. There are very few people diagnosed with an adrenal disorder within the NHS unless they are suffering from the two extremes, either 's disease (too little cortisol) or Cushing's syndrome (excess cortisol) and the NHS refuse to see any shades of grey inbetween these.He then placed me on 12.5 of Evotrox daily but I reacted so badly to that with hives, swelling neck so I was having trouble turning my head wearing a seat belt and breathing if I was active he advised me to stop taking it.

I know nothing of Evotrox. You can get L-thyroxine from dales Pharmacopiea which is pure thyroxine with no additives and they make this for people who cannot tolerate the fillers, such as lactose and maize in L-thyroxine. You should ask your doctor about this. You should get no reaction using that.He mentioned placing me on T3 and T4.I have just been to see him and he says he doesn't want to give me any medication as there is nothing he can offer that wont have side effects and that he will see me in 3 months time. I am in Durham in the North East and seen at the University hospital by Dr A.

Your endocrinologist should be working to find out what it is that you are allergic to, if, indeed, this is an ellergy. Do you take anything else by way of medication, supplements or food, i.e. dairy products where you get a similar reaction that you had when taking 50 mcgs T4? I am considering if I should ask for another NHS opinion. Or if this is a blanket approach and to be expected?

I would hate to think this is a 'blanket approach' and you might ask youor GP to refer you to somebody else. You can choose who you would like to see now. I think you should be referred to somebody who could help with your allergy, though first, have a word with your endocrinologist and ask him to prescribe the pure levothyroxine from dales.There is a history of thyroid in the family as well as chronic and severe allergies. My 8 year old son is registered disabled due to chronic eczema.I would love to try a private practice and get tests done , but unfortunately I can't as I am a single mum on benefit caring for my son who is home educated due to his allergies.

This is the same boat that many of us find ourselves in Sue. The NHS seem unable to help many of us and there is nothing else left for us but to look elsewhere, and the reason so many need to self-diagnose, self-treat and self-monitor, which is quite appalling.Thank you all for the messages and information in reply to my last post. i am sorry not to have replied but the thyroid keeps knocking me over and I loose the trail.

I am sorry I cannot be more helpful right now, but if you have any blood results, post them here and let us know what your doc. has to say about this pure T4.

Luv - Sheila x

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That is the one made by dales Pharmacopea. I believe that you get this prescription filled at Tesco's and one other place, that I can't remember right now;.

Luv - Sheila

There are two versions of liquid thyroxine, one has no dairy products or sugar in it. You have to ask for the lactose free.

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Hi

You are the only other person I have come across who seems to have

the same problem as me.

I have been trying to take thyroxine for a long time but it makes me

poorly and I get aching muscles and stiffness. I have tried Dr

Peatfield's regime with no success (including Armour which I couldn't

tolerate at all). I have tried three variations of dales

purified thyroxine capsules, all with the same effects.

At present I am taking 100mcg of levothyroxine by cutting up a 100mcg

tablet and taking a quarter every six hours, starting at 6am, or

taking a quarter with my lunch, a quarter with my evening meal and

two quarters at bedtime. This way I sleep through the worst hours.

I used to think my reaction had something to do with the fillers but

now I believe my body is reacting to the thyroxine.

At one point I was put on Prednisolone because it was thought I had

polymyalgia (I hadn't) and this enabled me to take thyroxine with no

problem. I am about to start on a trial of Prednisolone 5mgms daily

to see if this will enable me to take thyroxine with no ill effects.

It is a Catch 22 situation, if I don't take thyro I get ill and if I

do take thyro I get ill.

Our problems may not be identical but it reassured me when I read

your mail - I am not the only person who reacts to thryxine.

All my best wishes to you - Tilly

wrote>

> Hi

>

>> I contacted TPA a couple of months back when 1st diagnosed with

under active thyroid

> (THS at 13.1) and was reacting to the daily 50 mg does of

Levothyroxine I was being

> given.

>

> I was sent to have a blood test for adrenal glands. Which the

consultant told me were fine.

>

> He then placed me on 12.5 of Evotrox daily but I reacted so badly

to that with hives,

> swelling neck so I was having trouble turning my head wearing a

seat belt and breathing if

> I was active he advised me to stop taking it.

>

> He mentioned placing me on T3 and T4.

>

> I have just been to see him and he says he doesn't want to give me

any medication as there

> is nothing he can offer that wont have side effects and that he

will see me in 3 months

> time. >

>

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Hi Tilly

Will this be the first time you have started a trial of adrenal support? You need cortisone to help you absorb the L-thyroxine and if your adrenals are too low, this would be why you couldn't tolerate any thyroid hormone replacement in any way, whether it was synthetic or natural.

Luv - Sheila

At one point I was put on Prednisolone because it was thought I had polymyalgia (I hadn't) and this enabled me to take thyroxine with no problem. I am about to start on a trial of Prednisolone 5mgms daily to see if this will enable me to take thyroxine with no ill effects.

..

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Hi Sheila

I have been through the whole gamut of tests and trials. With Dr

Peatfield I was on 20mg Hydrocortisone for eighteen months plus all

the usual supplements. I only managed to take 75mcgs thyroxine, and

got gradually worse.

I was referred to an Endocrinologist who is an adrenal specialist and

he investigated me thoroughly. My adrenals were fine but I had a

raised ESR and CRP which is why the rheumatologist said I had

polymyalgia and put me on Prednisolone. I actually had a chest

infection which of course got better with antibiotics. So I weaned

off the Pred and as soon as I got down to 2.5mg the adverse reaction

to thyroxine kicked in again. I had been increased to 100mcg because

of extreme fatigue and without the Pred it affected my stomach and I

had to stop it totally. I then went onto dales capsules.

Taking thyroxine in small doses at six hourly intervals is the only

way I can take it.

Tilly

>

> Hi Tilly

>

> Will this be the first time you have started a trial of adrenal

support? You need cortisone to help you absorb the L-thyroxine and if

your adrenals are too low, this would be why you couldn't tolerate

any thyroid hormone replacement in any way, whether it was synthetic

or natural.

>

> Luv - Sheila

>

> effects.

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Some people need to take something like Pred to keep going on the L-thyroxine. This might be what you need to do Tilly. What is the lowest dose of pred you can take that works with the L-thyroxine?

Luv - Sheila

So I weaned off the Pred and as soon as I got down to 2.5mg the adverse reaction to thyroxine kicked in again. I had been increased to 100mcg because of extreme fatigue and without the Pred it affected my stomach and I had to stop it totally. I then went onto dales capsules.

..

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Sheila - I am hoping that 5mg will be enough. As long as I stick to

my present regime of small amounts at a time I am hopeful.

I think it is more of an allergic type reaction so Pred should work

better than Hydrocortisone did.

Tilly

>

> Some people need to take something like Pred to keep going on the L-

thyroxine. This might be what you need to do Tilly. What is the

lowest dose of pred you can take that works with the L-thyroxine?

>

> Luv - Sheila

>

>

> >

>

>

> --------------------------------------------------------------------

----------

>

>

>

> No virus found in this incoming message.

> Checked by AVG - http://www.avg.com

> Version: 8.0.169 / Virus Database: 270.7.0/1684 - Release Date:

22/09/2008 06:39

>

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>

> There are two versions of liquid thyroxine, one has no dairy products

> or sugar in it. You have to ask for the lactose free.

>

Hi Glynisrose

thank you that's very useful.

I am keeping notes of all this information to take along when I next go!

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>

> Hi Sue

>

> Those with hypothyroidism, either undiagnosed, diagnosed, treated or not,

would all

like some advice about how to steer ourselves through the NHS. It is because of

the NHS

that most of us actually end up on TPA and other thyroid forums, or looking

through the

many websites given over to this one problem.

>

>

>

> I contacted TPA a couple of months back when 1st diagnosed with under active

thyroid

(THS at 13.1) and was reacting to the daily 50 mg does of Levothyroxine I was

being

given.

>

> Remind us of the symptoms you suffered when taking 50 mcgs Thyroxine Sue.

>

> I was sent to have a blood test for adrenal glands. Which the consultant

told me were

fine.

>

> The NHS test to see the state of your adrenals is not good. You need the 24

hour

salivary profile which tests to see where your cortisol and DHEA levels are at

four specific

times during the 24 hours. There are very few people diagnosed with an adrenal

disorder

within the NHS unless they are suffering from the two extremes, either 's

disease

(too little cortisol) or Cushing's syndrome (excess cortisol) and the NHS refuse

to see any

shades of grey inbetween these.

>

> He then placed me on 12.5 of Evotrox daily but I reacted so badly to that

with hives,

> swelling neck so I was having trouble turning my head wearing a seat belt

and

breathing if

> I was active he advised me to stop taking it.

>

> I know nothing of Evotrox. You can get L-thyroxine from dales

Pharmacopiea

which is pure thyroxine with no additives and they make this for people who

cannot

tolerate the fillers, such as lactose and maize in L-thyroxine. You should ask

your doctor

about this. You should get no reaction using that.

>

> He mentioned placing me on T3 and T4.

>

> I have just been to see him and he says he doesn't want to give me any

medication as

there

> is nothing he can offer that wont have side effects and that he will see me

in 3 months

> time. I am in Durham in the North East and seen at the University hospital

by Dr A.

>

> Your endocrinologist should be working to find out what it is that you are

allergic to, if,

indeed, this is an ellergy. Do you take anything else by way of medication,

supplements or

food, i.e. dairy products where you get a similar reaction that you had when

taking 50

mcgs T4?

>

> I am considering if I should ask for another NHS opinion. Or if this is a

blanket

approach

> and to be expected?

>

> I would hate to think this is a 'blanket approach' and you might ask youor

GP to refer

you to somebody else. You can choose who you would like to see now. I think you

should

be referred to somebody who could help with your allergy, though first, have a

word with

your endocrinologist and ask him to prescribe the pure levothyroxine from

dales.

>

> There is a history of thyroid in the family as well as chronic and severe

allergies.

>

> My 8 year old son is registered disabled due to chronic eczema.

>

> I would love to try a private practice and get tests done , but

unfortunately I can't as I

am a

> single mum on benefit caring for my son who is home educated due to his

allergies.

>

> This is the same boat that many of us find ourselves in Sue. The NHS seem

unable to

help many of us and there is nothing else left for us but to look elsewhere, and

the reason

so many need to self-diagnose, self-treat and self-monitor, which is quite

appalling.

>

> Thank you all for the messages and information in reply to my last post. i

am sorry not

to

> have replied but the thyroid keeps knocking me over and I loose the trail.

>

> I am sorry I cannot be more helpful right now, but if you have any blood

results, post

them here and let us know what your doc. has to say about this pure T4.

>

> Luv - Sheila

>

> x

>

>

>

>

>

>

> -------------------------------------------------------------------

-----------

Hi Shelia

I will ask about the pure levothyroxine from Martidales.

My last bloods were

TSH 13.1

FT4 12.5

Ft3 4.7

basically when taking levothyroxine my neck swelled up badly so I was having

trouble

breathing., I had hives, memory loss, got blurry vision in one eye, which the

hospital were

very worried about but which went down, wasn't myself and was suicidal...it took

several

goes to convince Drs that there was something 'wrong' and I wasn't being a

hysterical

patient.

I went to my GP yesterday afternoon, and was told there was a doctor in

Newcastle that

patients who couldn't tolerate thyroxine were referred to.

I asked her if there might be other causes for me not absorbing the thyroxine

and had a couple of exams done and 2 referrals for scans.To be honest I was a

wobbly from all that

and so like an idiot didn't get her to give me the details.

Did manage to phone the surgery later and asked her to refer me but she said she

couldn't

she could only refer me to another consultant and then said she didnt know who

else

would be available....

thank you agai

x

>

>

>

> No virus found in this incoming message.

> Checked by AVG - http://www.avg.com

> Version: 8.0.169 / Virus Database: 270.7.0/1683 - Release Date: 21/09/2008

10:10

>

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MODERATED TO REMOVE MESSAGES PREVIOUSLY READ. PLEASE DELETE ALL BUT LEAVE JUST A

PORTION OF THE MESSAGE YOU ARE RESPONDING TO. LUV - SHEILA

________________________________

>

> It is a Catch 22 situation, if I don't take thyro I get ill and if I

> do take thyro I get ill.

>

> Our problems may not be identical but it reassured me when I read

> your mail - I am not the only person who reacts to thryxine.

>

> All my best wishes to you - Tilly

>

Hi Tilly

what a relief to hear some one else who can't seem to take this medicine! I am

really sorry

though that you face some of the same issues. It is very frustrating.

Because the consultant and GPs wouldn't believe me about the effects I kept a

diary and

photographed my neck swelling each day after reading on this site about Drs

responding

better to objective evidence. They just kept telling me nobody reacted to

lthyroxine so it

wasn't happening!

It has been very helpful reading other's experiences and advice.

best wishes

x

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Hi >

I am at the end of a very long journey, starting with " nobody has a

problem taking thyroxine! " It is very reassuring for me also to know

I am not alone.

I would suggest that you tell your doctor about me and how I can only

take small amounts at six hourly intervals, even then I am not too

well but at least I am getting the thyroxine in.

I have all my hopes on Prednisolone now.

If he wants to try you on the capsules from dales he will have

to contact them himself or refer you to an Endocrinologist. I tried

thyroxine in Calcium Phosphate, thyroxine in Cellulose and thyroxine

in Lactose with no success.

Matindales have a web site - martindalepharma.co.uk and they

specialise in making medication to order.

You will never be well without the thyroxine so keep pushing and

don't be put off by their disbelief. It does happen, its happening

to you and me!

>

> I will keep in touch and let you know how I get on with

Prednisolone.

Love - Tilly

>

>

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Hi there , has your doctor tested for auto-antibodies, these are usually in the blood serum but also can be in the thyroid it`s self. the one to ask for is TPOab which is to detect hashimoto`s which is the cause of hypothyroidism. as you have already a family historyof auto-immune it should be easy to get this done by your doctor. if he refuses then go to our files and find the list about getting this test done privately. hope this helps angel.

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>

> Hi there , has your doctor tested for auto-antibodies, these are usually

in the blood

serum but also can be in the thyroid it`s self. the one to ask for is TPOab

which is to detect

hashimoto`s which is the cause of hypothyroidism. as you have already a family

history

> of auto-immune it should be easy to get this done by your doctor. if he

refuses then go to

our files and find the list about getting this test done privately. hope this

helps angel.

>

Hi Angel,

I am finding the GPs and consultant very unwilling to do tests up here in

Durham. So it is

really good to know by name the tests to ask for.

Many thanks

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  • 1 year later...

Hi Sue,My Noah was afraid too but here they let me sit with him and we played "Fireman Sam". He loves that show and since Sam and the other firefighers wear the gas masks, they let us borrow one before the actual procedure so we could play in the waiting room, then when it was time, they brought us to sit on the table, I sat next to him and we "played".... he didn't know anything happened. It was harder for me. Good luck!LeighMom to Noah, 3.5 years with two 40 degree curves. Our first Mehta cast scheduled in Boston on 09/13/10...From: suzyinoxford

<sue@...>Subject: any advice please?infantile scoliosis treatment Date: Monday, September 6, 2010, 10:22 AM

Hi, My daughter, Abi, is going for a cast change tomorrow here in the UK and we are a bit nervous as she really hates being put under general anaesthetic. She has been having a gas mask and they put a line in her after she is unconscious but fights like crazy so we have asked tomorrow for a line to be put into her hand before going under. The trouble with this is that time is quite tight between having her cast removed and she so loves staying in the bath. Usually the theatre is ready for her quite quickly so there will be very little time to put the anaesthetic cream on her hands.

Are we missing something obvious? I was wondering how it is done in the US as your casting process seems so much better set up than ours (sadly we don't have or Shriners). Any advice would be really appreciated.

Sue

mum to Abi 3 yrs serial casting for s shaped scoli since 20 months

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I know some parents are against it as their little ones don't do as well with it, but I prefer Versed (an oral med to make them sleepy). They give it to Grace about 20-30 minutes before she goes to the OR. she is still awake, but doesn't care and has never had a problem leaving us. JaneFrom: suzyinoxford <sue@...>To:

infantile scoliosis treatment Sent: Mon, September 6, 2010 8:22:02 AMSubject: any advice please?

Hi, My daughter, Abi, is going for a cast change tomorrow here in the UK and we are a bit nervous as she really hates being put under general anaesthetic. She has been having a gas mask and they put a line in her after she is unconscious but fights like crazy so we have asked tomorrow for a line to be put into her hand before going under. The trouble with this is that time is quite tight between having her cast removed and she so loves staying in the bath. Usually the theatre is ready for her quite quickly so there will be very little time to put the anaesthetic cream on her hands.

Are we missing something obvious? I was wondering how it is done in the US as your casting process seems so much better set up than ours (sadly we don't have or Shriners). Any advice would be really appreciated.

Sue

mum to Abi 3 yrs serial casting for s shaped scoli since 20 months

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That would be fantastic we hadn't thought about a pre-med. This is probably

Abi's 8th or 9th cast and each one is getting harder as she anticipates having a

horrible time at the hosptial. We will definitely ask the Anaesthetist about

this tomorrow, just hope it's approved for use here in the UK.

thank you

Sue

>

> I know some parents are against it as their little ones don't do as well with

> it, but I prefer Versed (an oral med to make them sleepy). They give it to

> Grace about 20-30 minutes before she goes to the OR. she is still awake, but

> doesn't care and has never had a problem leaving us.

>

> Jane

>

>

>

>

> ________________________________

> From: suzyinoxford <sue@...>

> infantile scoliosis treatment

> Sent: Mon, September 6, 2010 8:22:02 AM

> Subject: any advice please?

>

>

> Hi, My daughter, Abi, is going for a cast change tomorrow here in the UK and

we

> are a bit nervous as she really hates being put under general anaesthetic.

She

> has been having a gas mask and they put a line in her after she is unconscious

> but fights like crazy so we have asked tomorrow for a line to be put into her

> hand before going under. The trouble with this is that time is quite tight

> between having her cast removed and she so loves staying in the bath. Usually

> the theatre is ready for her quite quickly so there will be very little time

to

> put the anaesthetic cream on her hands.

>

>

> Are we missing something obvious? I was wondering how it is done in the US as

> your casting process seems so much better set up than ours (sadly we don't

have

> or Shriners). Any advice would be really appreciated.

>

> Sue

> mum to Abi 3 yrs serial casting for s shaped scoli since 20 months

>

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