Re: Grateful for advice on changed thyroid situation

[Guest guest]

Hi sue, sounds sensible- T4 takes about 25 days for any change in meds to level out, but the effects of the change can take longer, so I suggest you review how you fee in 6 weeks ,then decide if you want to discuss this sooner. > thyroid treatment > From: sue_howley@...> Date: Tue, 1 Mar 2011 13:40:00 +0000> Subject: Grateful for advice on changed thyroid situation> > Hi,> > I'm a new member and was hoping someone might be able to give me some advice on my thyroid situation. I was diagnosed with ME/CFS back in June 2008. In September 2009 I became a patient of Dr Myhill who specialises in CFS. She recommended I start on thyroxine as although my levels were technically within normal range, the TSH was above 3 and the T4 towards the lower end > > I got my T4 - T3 conversion status checked to make sure I'd benefit from taking levothyroxine as my mum still has problems on T4 replacement. Conversion is fine so I started taking levothyroxine in Jan 2010 and have stuck to 50mcg as when I started on 75mcg I quite quickly started feeling hyper. It didn't resolve my health issues but I did feel a little more robust and less prone to feeling cold from the inside out. I also developed much better colour in my cheeks as I've been pale for years.> > In December last year, I started being able to hear my pulse in my ears when I lay down in bed at night and my heart seemed to go really quickly at times with a really strong beat and more regular episodes of fluttery palpitations. Also my low blood pressure and pulse rate increased considerably. I finally hit on the possibility it might be my thyroid meds and asked to get my levels checked.> > On Jan 14th I had bloods done but there was some problem with the hospital and then with my GP surgery so I didn't get the results until 5 weeks later, and then only because I reminded my GP about them when I went in for an appt about something else. I tested as follows (most likely due to over-medication):> TSH 0.1 Free T4 30 Free T3 8.1> > All the GP said was to cut down to 25mcg and get retested in 2 or 3 months time. Is this a normal span of time to wait? > > Sorry for the length of this post - my brain's still going too fast.> > Regards,> > Sue> > > > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

Hi Sue and welcome to our forum where I hope you will receive

all the help and support you need.

I tested as follows (most likely due to over-medication): TSH 0.1 Free T4 30 Free T3 8.1

In between getting those bloods done and getting the results I've been getting

painless migraines, deterioration in vision, generalised aches and pains like

the aftermath of too much exercise and much stronger nausea which caused me to

go right off my food.

I would recommend you ask your GP to check your levels of

ferritin, vitamin B12, vitamin D3, magnesium, folate, copper and zinc. When the

results come through, ask for these numbers together with the reference range

for each test done and post them here on the forum and we can help with

translation. If any of these are low, your thyroid hormone is unable to get

fully utilised at cellular level, and you get the effects of toxicity. Also

check out the attached document " Why Thyroid Hormone Stops Working " to

see whether there could be other associated conditions going along with your

thyroid problem, which again, would stop the thyroid hormone from working.

Lastly, in December I resumed eating gluten because I wanted to get a Coeliac

test done. When I started eating bread again I stopped eating daily handfuls of

nuts - I was on a high protein low carb diet for the ME/CFS - I've since read

that walnuts can affect thyroid output - so I've wondered whether my levels

might have shot up due to the change in diet as well. Or am I barking up the

wrong tree?

Can't really answer that as I have no idea, but have you ever

been tested to see whether you have antibodies to your Thyroid. If not, ask

your GP to do these tests. Do you have other members of your family with a

thyroid or autoimmune disease? If you do have antibodies you are suffering with

Hashimoto's disease, which is a cause of hypothyroidism. The antibodies see

your thyroid gland as public enemy number one and set about it's gradual

destruction. You might be interested to listen to Dr Kharrazion's view on

taking thyroxine if you suffer with Hashimoto's and the need for a gluten free

diet http://www.thyroidbook.com/

All the GP said was to cut down to 25mcg and get retested in 2 or 3 months

time. Is this a normal span of time to wait?

it takes levothyroxine approximately 6 weeks to be fully

utilised at cellular level and also takes the same amount of time to leave your

system completely, so you need to wait for at least that amount of time before

getting your blood retested. However, three months is far too long to wait.

Luv - Sheila

1 of 1 File(s)

Why thyroid hormone stops working (2).doc

[Guest guest]

: Thanks for the advice regarding retesting - I'll go back in 2 months

rather than 3.

Sheila: Thanks for the detailed reply. The CFS tests I got done through Dr

Myhill back in September 09 were quite comprehensive. To

gether with mitochondrial dysfunction, I tested low in D3, low B3, magnesium,

Co-Q10 and manganese. B12 was OK I think. I also had something called a protein

translocator test done which showed a problem at the level of the mitochondria

which are unable to absorb magnesium properly as there's a problem with calcium

molecules blocking the ion channels. Mitochondrial dysfunction could impact on

the thyroid function as there's a fundamental problem with energy formation at

cellular level.

As part of Dr Myhill's regime, I did daily B12 and magnesium injections from

Sept 09 to Jan 10 when I dropped to 3 times a week up until August last year.

B12 was there to act as an instant anti-oxidant as I had high oxidative stress

levels and cell-free DNA indicating tissue damage. Then I stopped these last

August due to an adverse local reaction to the magnesium jabs. I've also been

supplementing with Co-Q10, D3 & B3 as well as taking Bio-Care multi-vits and

minerals (which contain magnesium, zinc & B12 among the ingredients), as well as

taking a mineral mix made up by Dr Myhill (magnesium, D3, B12, copper, iodine &

iron as ferric amonium chloride among the ingredients). I also have epsom baths

2/3 times a week for the magnesium.

I'm pretty sure zinc levels were OK back then, not sure whether I was tested for

folate - will check.

I'm feeling great energy and brain-wise and I wonder if that's because my

cellular absorption of T3 is now good. However, it's coming at the price of

thyrotoxicity :-( Some days I feel it more than others, last night for example

I felt very hot, my pulse was more noticeable again and I had very light sleep

with multiple awakenings. I have wondered whether antibodies might be an issue

- I don't think I've been tested so I'll ask my GP about getting it done.

My mum is hypothyroid and although she's seen some improvement on T4, she's

still symptomatic. She gave up eating gluten several months ago and I spoke to

her a couple of days ago to find she's feeling a lot less symptomatic - no

crushing afternoon fatigue and she's finally seen remarkable weightloss with no

attempt to diet. She'd suspected she was hypo for many years before her levels

officially tipped her out of range, and of course her GP fixed her medication at

the level which saw her back into range. I keep asking her to get her test

results she hasn't remembered to do it.

I've almost always had the opposite issue in that I've been able to eat whatever

and not really gain weight, keeping weight on is more of an issue. But I've had

a couple of times when I've put a lot of weight on despite no change in diet.

As that went hand in hand with constipation and bloating, I cut gluten out as an

experiment which helped enormously and everything went back to normal. This was

all before I became unwell.

Thanks for the information on time it takes to build up and clear. When I

finally got the hyper results back, I commented that it seems strange I would

have become hyper after so many months on the same dose and the GP just said

that levels build up over time. But surely there's a point at which the levels

level out presuming no fundamental change in thyroid gland function?

One very interesting bit of information I read recently was that the half-life

of thyroxine varys depending on whether one is hypo, normal, or hyper. So in a

normal person it's 6-7 days, in hyper it's twice as fast and in hypo it's slower

at 10 days. I'm assuming therefore that my levels will be dropping quite

quickly while I'm hyper - does that sound right?

I've written an essay again - so sorry. I think I'm talking like this at the

moment as well - pity my poor OH, lol..

Many thanks for your advice.

Regards - Sue

[Guest guest]

I'm feeling great energy and brain-wise and I

wonder if that's because my cellular absorption of T3 is now good. However,

it's coming at the price of thyrotoxicity :-( Some days I feel it more than

others, last night for example I felt very hot, my pulse was more noticeable

again and I had very light sleep with multiple awakenings. I have wondered

whether antibodies might be an issue - I don't think I've been tested so I'll

ask my GP about getting it done.

It might help to cut back on your thyroid hormone replacement

for a while to see whether these symptoms stop. You might well be taking too

much, or the thyroid hormone cannot be properly absorbed at cellular level and

the symptoms you are getting are those of toxicity. Have you been tested to see

whether you are actually suffering with low adrenal reserve or not?

If you have not been tested for thyroid antibodies, then yes,

get these tested. These are TPO and AbTg. If the result is negative, you should

be tested again in a little while as the first test could have been done when

the thyroid antibodies were not active so would not show up. You need

especially testing for antibodies because Hashimoto's run down the family line,

so your Mum should also be checked, and any other members of your family. Do

other members also have a thyroid or autoimmune disease Sue?

My mum is hypothyroid and although she's seen

some improvement on T4, she's still symptomatic. She gave up eating gluten

several months ago and I spoke to her a couple of days ago to find she's

feeling a lot less symptomatic - no crushing afternoon fatigue and she's

finally seen remarkable weightloss with no attempt to diet. She'd suspected she

was hypo for many years before her levels officially tipped her out of range,

and of course her GP fixed her medication at the level which saw her back into

range. I keep asking her to get her test results she hasn't remembered to do

it.

Your Mum should also get her serum levels of B12, ferritin, D3,

magnesium, folate, copper and zinc tested to see whether any of these are low

in the range. She should get her results from her doctor together with the

reference range for each of the tests done and you could post them here so we

can hopefully help with their interpretation. Synthetic thyroxine is only

really useful for those suffering with primary hypothyroidism (low level of

thyroid hormone secretion by the thyroid gland) and is not the treatment for

other causes of the symptoms of hypothyroidism. Other causes such as

Hashimoto's need the active thyroid hormone T3, either the synthetic version of

that found in natural thyroid extract.

I've almost always had the opposite issue in that I've been able to eat

whatever and not really gain weight, keeping weight on is more of an issue. But

I've had a couple of times when I've put a lot of weight on despite no change

in diet. As that went hand in hand with constipation and bloating, I cut gluten

out as an experiment which helped enormously and everything went back to

normal. This was all before I became unwell.

More and more people are finding that they are gluten intolerant

and that once they remove gluten from their diet, there can be quite a dramatic

effect on their health. We had our first meeting of TPA Trustees and Working

party committee meeting yesterday and went out for dinner last night, and out

of 8 of us, 4 were eating gluten free foods and each one of them said how much

their health had improved.

Thanks for the information on time it takes to

build up and clear. When I finally got the hyper results back, I commented that

it seems strange I would have become hyper after so many months on the same

dose and the GP just said that levels build up over time. But surely there's a

point at which the levels level out presuming no fundamental change in thyroid

gland function?

This sounds as if you have now gone 'hyper' because you have had

your thyroid function tested when the antibodies were 'active' at one time and

then tested again when they were 'inactive'. It is important to get these

levels tested.

One very interesting bit of information I read

recently was that the half-life of thyroxine varys depending on whether one is

hypo, normal, or hyper. So in a normal person it's 6-7 days, in hyper it's

twice as fast and in hypo it's slower at 10 days. I'm assuming therefore that

my levels will be dropping quite quickly while I'm hyper - does that sound

right?

Can you post a link to this information Sue please as I have not

read about this.

I've written an essay again - so sorry. I think

I'm talking like this at the moment as well - pity my poor OH, lol..

That's because you are going through the 'hyper' phase.

Luv - Sheila

Many thanks for your advice.

Regards - Sue

[Guest guest]

Hi Sheila - thanks so much for your advice. I am indeed going through a hyper

phase - poor !

With regard to cutting down the levo, I dropped from 50mcg to 25mcg on 23rd Feb

after getting the bloods back in which the TSH was down to 0.1 and both Free T4

and Free T3 above range. If my thyroid levels were fluctuating independent of

the medication, it would make sense of why I`m still experiencing hyper peaks.

Adrenal Reserve test: I did an adrenal salivary test in Sept 09. Both cortisol

and DHEA-S were in normal ranges. Is this what you mean by an adrenal reserve

test?

I'll ask to get TPO and AbTg tests done, thanks for the tip. I'll mention it to

my mum but she's seems to have resigned herself to the situation for the moment.

If I ever manage to persuade her to ask for her TSH/T4 results, I'll post them

up for your opinion. I totally understand why she feels like she does, she's

had a rotten time at the hands of doctors. She lost a kidney due to medical

negligence / incompetence when she was only in her early 20's. I have suggested

she get an adrenal test done as of course she's only have one adrenal gland to

do all the work. Something else her useless GP hasn't factored in.. I'll also

keep working at persuading her to get herself tested for antibodies and the

vitamin and mineral deficiency tests you recommend ;-)

T3 conversion etc: When my mum failed to respond as well as she'd hoped to the

T4 replacement, I told her about the role of T3 etc and suggested she have a

conversion test done but again, nothing doing. It was watching how poorly she

was doing on T4 that made me get myself tested.

As for anyone else in the family with thyroid issues or an autoimmune disease:

There's Rheumatoid Arthritis (paternal aunt and grandmother). No thyroid issues

apart from my mum as far as I'm aware.

As a family, we've become estranged to all but our nearest relations - a sad

effect of us all moving around so much - so I have no way of knowing the wider

picture.

Re: Gluten intolerance: Yes, isn't it amazing how prevalent it is now!

Something to do with the new types of wheat used today which have higher levels

of gluten together with modern methods of bread making which radically cuts down

on proving times, which used to help break down the gluten.. We are all being

exposed to much higher levels of gluten than our ancestors were.

I can't remember where I found the half-life information originally, but if you

look at the wiki page http://en.wikipedia.org/wiki/Levothyroxine on the right

hand side of the page is a separate column, the varying half-lives are listed

under `Pharmacokinetic data'.

ATB - Sue :-)

[Guest guest]

Hi Sue

Adrenal Reserve test: I did an adrenal salivary test in Sept 09. Both cortisol

and DHEA-S were in normal ranges. Is this what you mean by an adrenal reserve

test?

Yes - if this was the 24 hour salivary adrenal profile, that is

what I meant. However, being normal in September 09 doesn't necessarily mean

you will be normal now. You are obviously suffering physical stress right now,

and probably mental stress too, so perhaps it might be an idea to get this

tested yet again. You can get a discount on this test by being a member of

Thyroid Patient Advocacy. See our FILES section accessible from the Menu on the

Home Page of this forums web site. Scroll down the list until you see the

'folder' 'Discounts on Tests and Supplements' and open the 'Genova Discounts'

File and follow the instructions exactly.

Your Mum just needs to write a short letter to her GP asking him

to let her have her last thyroid function test results together with the

reference range for each test. She doesn't have to offer an explanation why she

wants them - these are hers by law. A doctor cannot withhold them from her.

T3 conversion etc: When my mum failed to respond as well as she'd hoped to the

T4 replacement, I told her about the role of T3 etc and suggested she have a

conversion test done but again, nothing doing. It was watching how poorly she

was doing on T4 that made me get myself tested.

Tell your Mum that TPA has a membership of over 2070 - WHY?

Mainly because these members remain ill on the NHS one and only thyroid hormone

replacement because the doctors refuse to give their patients a choice of

treatment if synthetic levothyroxine doesn't work for them. We reckon there are

approximately over a quarter of a million people in the UK alone who are

remaining ill on T4 only, and who need to start taking the ACTIVE thyroid

hormone T3. Every cell in your body and brain requires T3, without T3 we die. A

large minority are UNABLE to convert the inactive T4 to the active T3 for many

and varied reasons. Doctors are not taught about this. See attachment.

As for anyone else in the family with thyroid

issues or an autoimmune disease: There's Rheumatoid Arthritis (paternal aunt

and grandmother). No thyroid issues apart from my mum as far as I'm aware.

Then tell your GP about this and any other autoimmune disease

suffered by any member of your family.

Luv - Sheila

1 of 1 File(s)

Why thyroid hormone stops working (2).doc

[Guest guest]

Hi Sheila,

Will be much shorter this time as I'm not feeling so bright and have had to rest

at work today for the first time in several weeks. Is it the ME or is it the

drop in thyroid hormones? A rhetorical question - I'm just praying this hyper

episode doesn't come at a high price. I can't face another period of being

housebound.

See our FILES section accessible from the Menu on the Home Page of this forums

web site. Scroll down the list until you see the 'folder' 'Discounts on Tests

and Supplements' and open the 'Genova Discounts' File and follow the

instructions exactly.

I've looked and looked but I can't find the heading called Files - should it be

in the left hand section?

Your Mum just needs to write a short letter to her GP asking him to let her have

her last thyroid function test results together with the reference range for

each test. She doesn't have to offer an explanation why she wants them - these

are hers by law. A doctor cannot withhold them from her.

I'll tell her, thanks.

Re: T3 - she's aware that Armor has better results because I can remember how

annoyed she was when she wasn't given the option to use it. She hasn't been

feeling bright enough to do the research. I'll point her to the site and this

board.

Then tell your GP about this and any other autoimmune disease suffered by any

member of your family.

Thanks, Sheila, I will, however, I've become used to being failed by them since

falling unwell in '08, I'll be amazed if they start acting different. They took

5 weeks to give me the results of my last tests which showed me to be hyper - so

I continued to over-medicate. I'm currently waiting on the Practise Manager's

report. Anyway, there I go digressing again when I'm hanging and need to get to

bed.

Thanks for your help x

[Guest guest]

You have obviously gone to the wrong web site , I am talking

about THIS FORUM WEB SITE thyroid treatment

.. On the Home Page there, you can see FILES in the Menu on the left.

Regarding requesting information and blood test results etc from

your doctor, from now on, make a habit of putting all your requests in writing.

If they don't follow up on your requests, then tell them you are happy to take

this matter further as they are there to work WITH their patients, and

make them well, and not to work AGAINST them. Drop a line to the Practice

Manager and let her/him know that you are still waiting for the report. The

more we keep on at them, the more chance we have of getting a better service.

Luv - Sheila

See our FILES section accessible from the Menu on the Home Page of this forums

web site. Scroll down the list until you see the 'folder' 'Discounts on Tests

and Supplements' and open the 'Genova Discounts' File and follow the

instructions exactly.

I've looked and looked but I can't find the heading called Files - should it be

in the left hand section?

Thanks, Sheila, I will, however, I've become used to being failed by them since

falling unwell in '08, I'll be amazed if they start acting different. They took

5 weeks to give me the results of my last tests which showed me to be hyper -

so I continued to over-medicate. I'm currently waiting on the Practise

Manager's report. Anyway, there I go digressing again when I'm hanging and need

to get to bed.

_._,___

[Guest guest]

Hi Sheila,

Yes, I did go to the wrong site - there is an organisation called Thyroid

Patient Advocacy which confused me. I'll look into the tests.

I don't have an issue getting copies of test results, there was just an almighty

cock up this time round where they failed to alert me to the results at all. I

shall do as you suggest and write to the Practise Manager so it's on record that

I made the request and that I'm serious about it. When I spoke to her last

Friday, she apologised for the stress and anxiety it must have caused and I

pointed out that next to the heart and muscle issues and the fact I'd been left

to overmedicate a further 5 weeks, stress and anxiety were the least of my

concerns. It's like they're on a different planet! God help us if they shift

responsibility for NHS Services to GPs..

I wrote to Dr Myhill yesterday to say what's been happening since December and

let her know my GP's response to the thyrotoxicity. She's told me that the GP

is being complacent, I need to stop taking the levo and seek urgent referral to

an endo. Could you send me the list of recommended endos please.

Many thanks,

Sue

[Guest guest]

There are a few Thyroid Patient Advocacy forums, and they all

belong to me (us). We have our main thyroid forum, i.e. this one, then we have

our Chattery, where you can go and chat about anything under the sun apart from

thyroid disease, then we have LABGAB which is for the scientists and legal beagles

so we don't get bogged down with too much scientific jargon on this forum. Then

I have a TPA Demonstration forum, which anybody can join by writing to me and I

will send an invitation. This is about TPA deciding whether or not we need to

demonstrate in London or elsewhere and how best this should be done - problem

is, nobody appears interested enough to take part - only 8 people showed any

interest. Then I have another forum which is just for the Trustees of our

Charity and the Working Party Committee where we can discuss things privately

and make decisions on what needs to be done. None of these forums, apart from

this one, are available on the search engines as they are for members and staff

of TPA only.

I guess when you joined, Lilian sent you invitations to join the

others in case you wanted to, but this and the chat forum are the two main

one's that will likely be of interest too you.

I have now sent you the list of recommended doctors Sue. Hope

you find one you can work with happily.

Luv - Sheila

Yes, I did go to the wrong site - there is an organisation called Thyroid

Patient Advocacy which confused me. I'll look into the tests.

I wrote to Dr Myhill yesterday to say what's been happening since December and

let her know my GP's response to the thyrotoxicity. She's told me that the GP

is being complacent, I need to stop taking the levo and seek urgent referral to

an endo. Could you send me the list of recommended endos please.