Re: frustrated newbie!

[Guest guest]

Hello Diane

Poor you, going through Graves and now going through Hypo with

disinterested medical staff. May I first assure you that I know where

you are coming from, and I feel so do the majority on this forum

unfortunately.

One of the more experienced will give you the story on the TSH etc.

I just came in to say welcome, and I hope you get as much benefit from

the advise here as I have done.

luv and God bless

Dawn

[Guest guest]

Thank you for your support and response Dawn and I hope so too. I am

realising through this forum that I am very ignorant to the major

facts of both Graves and Thyroid disease and as it seems my doctor is

so flippant, it is time to stop trusting 'they know best' and take

positive action to inform myself. No wonder so many of us self

diagnostic!

If anyone can recommend a good NHS/other endocronologist in the

Lancs/Manchester area, I would be grateful.

Cheers

Diane

>

> Hello Diane

>

> Poor you, going through Graves and now going through Hypo with

> disinterested medical staff. May I first assure you that I know where

> you are coming from, and I feel so do the majority on this forum

> unfortunately.

> One of the more experienced will give you the story on the TSH etc.

> I just came in to say welcome, and I hope you get as much benefit

from

> the advise here as I have done.

>

> luv and God bless

> Dawn

>

[Guest guest]

Hi Diane,

I see you're 'named after' the dams up in Derbyshire!

HC is hydrocortisone, Armour is the dessicated porcine thyroid

(gland) dried and standardised, originally made by the 'Armour' meat

packing company.

The hyper due to an overdose of thyroxine sounds as though your

adrenals weren't up to snuff...in need of HC to get you back on

course.

Signed off before being stable is a little on the negligent side and

you may need to ask PALS in the local area to investigate why your

endocrinologist doesn't know the symptoms that you are having due to

insufficient ?T3 production....constipation shouldn't be a problem if

your gut is getting what it needs by way of thyroid meds.

Did the endocrinologist do any tests for adrenal function?

Did you live in an area with fluoridated water or does the local

water supply contain fluoride naturally (from lead mining areas ~

fluospar)?

best wishes

Bob

>

> hi

> i am 40 year old who is hypothyroid (i have graves disease) having

> had radioactive iodine 18 months ago. since then my tsh has

> fluctuated between 0.01 to its present 5.75. (t4 20.05 - now 16.84)

> despite me never having stablised yet, my endo signed me off

> as 'stable' 3 months ago. this despite being severly hyper last

> summer due to overdose of levothyroxine and now feeling

increasingly

> unwell recently (my bowel motions have definitely slowed, is this

> normal?). i have asked twice recently if i should increase my

> thyroxine but i get brushed off with an almost impatient 'you are

> signed off you should go through your gp now'. i dont feel i should

> be signed off and feel an increase from 75 mcg to 100 is needed

> immediately. i have just recently read that the states have reduced

> their tsh based hypothyroid diagnosis from 5 to 3 which would mean

i

> am way over! what are peoples opinions of this and have the UK

> followed? where can i find an endo in my area who i can trust is

> acting in my best interests and who will take me seriously?

> there are lots of terms here i do not know about i.e. HC and Armour

> what are these?

> thanks for any help or advice

> diane

>

[Guest guest]

EDITED TO REMOVE MESSAGES PREVIOUSLY READ - SHEILA

___________________________

Hi Bob

Thank you for responding. My name is my marital name so

unfortunately, it is not my genes that can claim the link to the

lovely dams, though I hasten to add there is also a place called

Bamford in Lancs too! Thanks for the info.

The hyper due to a lack of HC (I am beginning to fit this puzzle

together)makes sense. I had two weeks of such prolonged and severe

panic attacks I thought I would have hospitalise myself. I had no

idea my TSH was so low and that I was on double the dose of

thyroxine I should be! How do you find out what your HC levels

are/should be? Is this also through the doctor?

I will certainly approach PALS as I feel aggrieved by my treatment

so far. I do not really know about T3 and how it affects you but am

learning all the time (I have just ordered the Shomon book on

living well with hypothyroidism, is this a good one to read?) I am

not aware of ever having adrenal tests. Are these always important?

I have regular TSH and T4 tests only. I do not know about the water,

how would I find out?

Thanks again for your help.

Diane

>

> Hi Diane,

>

> I see you're 'named after' the dams up in Derbyshire!

>

> HC is hydrocortisone, Armour is the dessicated porcine thyroid

> (gland) dried and standardised, originally made by the 'Armour'

meat

> packing company.

>

> The hyper due to an overdose of thyroxine sounds as though your

> adrenals weren't up to snuff...in need of HC to get you back on

> course.

>

[Guest guest]

Dear

have you actually asked your GP for an increase in your L-thyroxine. Also, ask him to test your Free T3. T3 is short for Triiodothyronine. This is the active hormone that makes every cell in your body function. Your L-thyroxine (T4 for short) is an inactive hormone which normally converts in the liver to the active T3. Unfortunately, the mainstream medical establishment don't seem to believe that such a problem exists, but it does, I am living proof of one hypothyroid suffer who took L-thyroxione alone and who was not converting. If your GP refuses to test your Free T3 (this is the amount of T3 floating around in your blood" you can get it tested yourself privately through NPTech Services (have a look in the FILES section of this forum and scroll down until you find 'NPTech Services'). That tells you the tests they do and the prices they charge. If you are not converting, your Free T3 will be low and you will need some synthetic T3 (Liothyronine) added to your L-thyroxine to help your body to function as it should.

Armour Thyroid, USP is a natural desiccated pig thyroid extract. Because it is natural and pretty close to the human thyroid (though not entirely) it contains all the thyroid hormones your body requires i.e. T4, T3, T2, T1, T0 and calcitonin (which is good for your bones) and many people who don't do well on the synthetics, do extremely well on Armour. However, because it has never required a license, doctors are reluctant to prescribe it because should anything go wrong and you try to sue them, their medical insurance doesn't cover them. However, some of us have been lucky, me for one, and I do get my Armour on an NHS prescription, and more doctors are coming round to realising this is a good medication. If you go to our Files and near the top, read the response from TPA-UK to the British Thyroid Association's Statement on Armour Thyroid and T4/T3 combination therapy. They wrote misleading and sometimes incorrect information and we are now asking them to update their statements to show the correct information. This is important, because doctors go by what the BTA state. You will learn all there is to know about Armour and the true facts. You might wish to take a copy (sorry for the length of the paper) to show your doctor if that becomes necessary.

Post your most recent blood results here together with the reference range for each test. The fact that you are finding you are becoming constipated could be a symptom of under treated hypothyroidism, so you need to watch that. If you are refused an increase, could you see a private specialist who knows about thyroid problems? The only other thing you could try is to mention to your GP that you are considering increasing your dose of thyroxine by 25 mcgs to see if that would help with your symptoms, and would he monitor you. Let us know what he says.

HC is short for Hydrocortisone. Many hypothyroid people suffer with low adrenal reserve. You will also see mentioned NAE - which is short for Nutri Adrenal Extra, which is a supplement we recommend in the first place for those with low adrenal reserve. You will pick up the jargon, it can be a pain, but keep asking and we will try to help you.

Luv - Sheila

hii am 40 year old who is hypothyroid (i have graves disease) having had radioactive iodine 18 months ago. since then my tsh has fluctuated between 0.01 to its present 5.75. (t4 20.05 - now 16.84) despite me never having stablised yet, my endo signed me off as 'stable' 3 months ago. this despite being severly hyper last summer due to overdose of levothyroxine and now feeling increasingly unwell recently (my bowel motions have definitely slowed, is this normal?). i have asked twice recently if i should increase my thyroxine but i get brushed off with an almost impatient 'you are signed off you should go through your gp now'. i dont feel i should be signed off and feel an increase from 75 mcg to 100 is needed immediately. i have just recently read that the states have reduced their tsh based hypothyroid diagnosis from 5 to 3 which would mean i am way over! what are peoples opinions of this and have the UK followed? where can i find an endo in my area who i can trust is acting in my best interests and who will take me seriously? there are lots of terms here i do not know about i.e. HC and Armour what are these?thanks for any help or advicediane

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[Guest guest]

I have sent you the names of three and their addresses privately .

hope these help.

luv - Sheila

>

> Thank you for your support and response Dawn and I hope so too. I am

> realising through this forum that I am very ignorant to the major

> facts of both Graves and Thyroid disease and as it seems my doctor is

> so flippant, it is time to stop trusting 'they know best' and take

> positive action to inform myself. No wonder so many of us self

> diagnostic!

> If anyone can recommend a good NHS/other endocronologist in the

> Lancs/Manchester area, I would be grateful.

> Cheers

> Diane

>

>

>

>

[Guest guest]

Hi

To test to see whether you have low adrenal reserve, go to our FILES from the Home Page of this forum and click on NPTech Services. You can see the tests they do and the prices they charge. You should send for the 24 hour salivary Adrenal Profile kit. This comprises four little test tubes and four little straws. You place the straw in your mouth and the other end in one of the test tubes and spit down it until you get in as much spit as you can. You do this test at 8.00a.m. - 12.00 Noon, 4.00p.m. and then again at midnight. This tests to see where your cortisol and DHEA are at these 4 specific times during the day. The STIM test them do at the Hospital will only test to se where your cortisol levels are at one time during the day and this is not a good test. Sadly also, the NHS do not recognise low adrenal reserve, all they check for is to see whether you are suffering the extremes of 's disease and Cushing's syndrome. We have to look after ourselves in this way.

If you are found to be outside the ranges, then we can help you with recommending what you need to take tol boost your adrenals. If you do have low adrenal reserve, your body cannot absorbed the thyroid hormone replacements, in the same way as if you have low Ferritin (stored iron) and/or Candida Albicans. All three of these conditions have to be treated first before you start taking L-thyroxine, as many of our members here are learning.

As stated previously, T3,(triiodothyronine) is the active hormone that makes our body work. L-thyroxine is inactive and converts through the liver to T3. You will learn more about this as you read through the information on our website www.tpa-uk.org.uk or in our FILES on this forum.

Keep asking questions , you will get there and see the light.

Luv - Sheila

The hyper due to a lack of HC (I am beginning to fit this puzzle together)makes sense. I had two weeks of such prolonged and severe panic attacks I thought I would have hospitalise myself. I had no idea my TSH was so low and that I was on double the dose of thyroxine I should be! How do you find out what your HC levels are/should be? Is this also through the doctor?I will certainly approach PALS as I feel aggrieved by my treatment so far. I do not really know about T3 and how it affects you but am learning all the time (I have just ordered the Shomon book on living well with hypothyroidism, is this a good one to read?) I am not aware of ever having adrenal tests. Are these always important? I have regular TSH and T4 tests only. I do not know about the water, how would I find out?Thanks again for your help.Diane

..

No virus found in this incoming message.Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.8/1362 - Release Date: 06/04/2008 11:12

[Guest guest]

Hi Diane, you are now going hypo, the rise in the TSH test shows this , you may very well need an increase of medication. the TSH test is not a very good indicationof your thyroid , go by the FT3. tell you doctor that you are not well and you will not go away until this problem has been resolved. angel.

for Good helps you make a difference

[Guest guest]

Hi Diane,

It can be hard to stabilise a dose of T4 after RAI, If your TSH

isn't stable then of course you should not be signed off. A TSH after

treatment should not be as high as 5.75 this is over the cut off point of

5.5. Most healthy non hypo folk have a TSH of around 1.0. 75mcg T4 is far

from a total replacement dose which is usually around 125 to 150mcg T4.

Go see you doc and if he won't increase ask to see another endo elsewhere

this one won't get you well. USA TSH range is 0.3 to 3.0.

Subject: frustrated newbie!

hi

i have just recently read that the states have reduced

their tsh based hypothyroid diagnosis from 5 to 3 which would mean i

am way over! what are peoples opinions of this and have the UK

followed? where can i find an endo in my area who i can trust is

acting in my best interests and who will take me seriously?

there are lots of terms here i do not know about i.e. HC and Armour

what are these?

thanks for any help or advice

diane

------------------------------------

Messages are not a substitute for professional medical advice. Always

consult with a suitably qualified practitioner before changing

medication.

[Guest guest]

Many many thanks to Sheila, Dawn, Bob, Angel and for taking the

time to respond to my previous posts. There is some great advice and

information and plenty of food for thought. I got an appointment with

my GP today (amazingly) who agreed my dose needs upping (I had asked

my endo who had refused, saying she wanted to wait and see if it was

definitely a trend!!!)and who will also refer me to a one of the

doctors on your list Sheila. RESULT! I have an appointment to see him

next week again as my blood pressure is low and will discuss some of

the tests you mention (including the T3). I will also go armed to my

next endo and you bet I will be putting in a complaint to PAL about

the blase treatment by the present one. Incidentally, in the last two

years I have had a lump removed from my breast and have two more being

constantly monitored and biopsied. I was told I was infertile last

year and will remain biologically childless. I tried IVF which failed

due to my very high oestrogen levels (we are now hoping to adopt,

which we are very excited about!) - now, to me ALL of these problems

have always been linked and seem to be hormonal based, yet everytime I

have brought this up with my GP, my breast consultant, my gynae's and

even my endo - all of them have denied there is a link - which I

cannot believe! This endo even said 'ooh I get lumps in my breast all

the time, breast mice I call them, there is nothing to worry about!'.

Yep, about sums up that particular doctor dont you think?

Thanks again all!

I will keep reading and asking but for a while, will try to digest the

massive amount of info i have gratefully just received.

Cheers

Diane

[Guest guest]

Hi

Read the following. Many hypothyroid women have Fibrocystic breast disease and looks like this could be your problem. I also had this, but since treated with Armour, the lump that I had has disappeared now completely. You are probably oestrogen dominant (again, many hypothyroid women are) and need to add some natural progesterone cream which you rub into some soft part of your body daily. There is a thread on this topic going on right now. You are probably not able to produce children because you are not being treated correctly

http://www.caringmedical.com/media/article.asp?

Fibrocystic breast disease is the most common breast disease and is clinically apparent in about 50% of women. Clinically, the cystic lesions are usually multiple and bilateral and are characterized by pain and tenderness, particularly premenstrually. The disease usually occurs in the pre-menopausal years with a cessation of symptoms post-menopausally, unless exogenous estrogens are administered.The condition is believed to be due to a relative or absolute decrease in the production of progesterone or an increase in the amount of estrogen. Estrogen promotes the growth of mammary ducts and the periductal stroma. Patients with fibrocystic breast disease improve dramatically during pregnancy and lactation because of the large amount of progesterone produced by the corpus luteum and the placenta and the increased production of estriol, which blocks the hyperplastic changes produced by estradiol and estrone.Any female medical condition that is worsened by estradiol is generally improved by progesterone, as they have opposing actions. This is one of the reasons natural progesterone is used so freely by natural medicine practitioners. We find fibrocystic breast disease is best treated by measures that lower estradiol levels, as discussed previously. Sometimes women are given the diagnosis of mastalgia. Mastalgia is a fancy medical term for breast pain for which we have no clue as to its origin. Mastalgia is one of those hidden complaints that women have but do not talk about. Mastalgia is quite common, breast pain is the most common complaint for which women with breast symptoms present to the primary care physician.Typical medical treatments for nondescript breast pain range from hormone manipulation (with menopause-inducing drugs) to various surgeries, including removing part of the breasts. A method of lowering estradiol that is especially helpful in fibrocystic breast disease is administering iodine in the form of supersaturated potassium iodine or Lugol's solution. Iodine is needed by the body for proper thyroid function, so thyroid hormone levels should also be checked. For some women, the problem is not cysts in the breasts but breast pain, coming from a musculoskeletal structure such as the ribs or sternum. Natural medicine solutions are the best options, including Prolotherapy.

Have a look also at http://www.associatedcontent.com/article/218462/thyroid_problems_and_their_affect_on.html and there are many Internet websites telling you about the difficulty in becoming pregnant if you are hypothyroid.

Luv - Sheila

Many many thanks to Sheila, Dawn, Bob, Angel and for taking the time to respond to my previous posts. There is some great advice and information and plenty of food for thought. I got an appointment with my GP today (amazingly) who agreed my dose needs upping (I had asked my endo who had refused, saying she wanted to wait and see if it was definitely a trend!!!)and who will also refer me to a one of the doctors on your list Sheila. RESULT! I have an appointment to see him next week again as my blood pressure is low and will discuss some of the tests you mention (including the T3). I will also go armed to my next endo and you bet I will be putting in a complaint to PAL about the blase treatment by the present one. Incidentally, in the last two years I have had a lump removed from my breast and have two more being constantly monitored and biopsied. I was told I was infertile last year and will remain biologically childless. I tried IVF which failed due to my very high oestrogen levels (we are now hoping to adopt, which we are very excited about!) - now, to me ALL of these problems have always been linked and seem to be hormonal based, yet everytime I have brought this up with my GP, my breast consultant, my gynae's and even my endo - all of them have denied there is a link - which I cannot believe! This endo even said 'ooh I get lumps in my breast all the time, breast mice I call them, there is nothing to worry about!'. Yep, about sums up that particular doctor dont you think?Thanks again all!I will keep reading and asking but for a while, will try to digest the massive amount of info i have gratefully just received.CheersDiane

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[Guest guest]

Good Post Shiela.

It wasn't long ago since I posted about pain in my breasts, like

someone sticking needles throught them, now I can see from this how

common it is and that it was probably from my muscle problems

Cheers

Dawnx