Underactive - worse on thyroxine - help deperately needed

[Guest guest]

Please can anyone offer any advice at all. I am desperate for some help and

don't know where to turn. I seem to be going round in circles. Has anyone

experienced problems with thyroxine?

I have an underactive thyroid– diagnosed 1986. No named diagnosis – I was just

prescribed thyroxine.

Ever since that time I have struggled with thyroxine treatment. I seem to get

worse when taking it. For many earlier years I didn't take it at all for that

reason. I used to take occasional diazepam 2mg to calm the symptoms [no longer

prescribable]. Over the last 10 years or so have been on T4 25 mcg – which 2

gps have tried to slowly increase [25/50mcg alt days] still feel worse as dose

goes up. I have been told I must build up tolerance to it. Following are

symptoms on thyroxine, which I have shown to my doctor.

Very nervous/anxious,

Very depressed and withdrawn – want to hide away

Very irritable and edgy

Angry –explosive

Feeling Very hot[temperature low]

Eyelids twitching

Pressure in throat

4 years ago I moved and changed doctors and things went from bad to worse.

I am very unwell all the time now although I still just about manage to work –

only because I am self employed and do not have set hours.

My life is very compromised by feeling so unwell.

My known TSH tests have been 6.8 [Nov 08] 5.9 [feb09] and 3.8 [feb10]. The last

reading appears better as I was taking 50mcg for 2 weeks prior to test.

Latest Blood tests [Feb 2011]show a TSH of 7.76 and Serum free t4 - 14, Serum

free t3 4.4 - Ferritin 45, B12 - 825. Also anti bodies peroxidase –370.

These have never been measured before.

In the past 2 years I have been getting worse and been diagnosed with

Gastric erosions/ acid reflux/Stomach Ulcers

Irritable bowel disease/ chronic diarrhea/piles

Breathing difficulties/ chronic pulmonary

Depression and Anxiety

Fibromyalgia

Plus the ongoing underactive thyroid.

For the above I have had different medicines prescribed – most of which have

made me feel worse. Also physio appointments.

I have asked if it was possible to try t3 – but my gp says that isnt indicated

by my test results. He will not refer me to a specialist until I have tried

upping thyroxine again for 4 months. He says I am depressed and need his

tablets. I do not do well on antidepressants and have been taking st johns

wort. So we are stalemate there.

So am now back to taking 25/50 mcg alt days and already feeling pressure in

throat – which has also been sore. I have been advised to take propranalol to

counter any other unpleasant symptoms.

Are there any thyroid specialists in England that don't just say take the t4!

Sorry to go on – Any help or advice would be gratefully received. I

Suzanna

[Guest guest]

Suzanne - there are a great many of us who have had trouble with

synthetic thyroxine. This is because thyroxine is a mainly INACTIVE thyroid

hormone that MUST convert to the active thyroid hormone triiodothyronine (T3). It

is T3 that every cell in your body and brain needs to make them function. There

are approximately 250,000 (yes, quarter of a million) people in the UK alone

who have problems taking T4 only and who should be taking some form of T3,

either synthetic, or that found in natural thyroid extract but the NHS refuse

to recognise this because the British Thyroid Association and the Royal College

of Physicians tells doctors and medical schools that everybody can convert. T4

is not even a hormone, it is a pro-hormone that converts through the liver,

kidneys, skin, brain and other thyroid hormone receptors throughout the body to

T3. Without T3 we die.

There are also many associated conditions that go along with the

symptoms of hypothyroidism that must be diagnosed and treated, before even

thyroxine is given. One of the main causes of Thyroid hormone being unable to

be absorbed at cellular level is low adrenal reserve. Another cause is systemic

candidiasis. Another one is mercury poisoning caused through amalgam fillings.

Seven more causes are low levels of ferritin, vitamin B12, vitamin D3, magnesium,

folate, copper and zinc, and you can ask your GP to test you for these. When

the results come back, ask your GP for them together with the reference range

for each test done and post them here on the forum, and we will help with their

interpretation.

You can go to our FILES section on our forum http://health./group.thyroid treatment

and click on FILES. On the Page that opens, click on 'Medical Questionnaires'

and complete the Adrenal one, the Candida one and the Magnesium one and answer all

the questions there. See how you score, and if high, you should, if at all

possible, get the 24 hour salivary adrenal profile from Genova Diagnostics and

also get tested by them too to see whether you have candida antibodies. (You

can get information about these from the 'Discounts on Tests and Supplements

File' - just follow the instructions to claim your discount by being a

TPA member.

If these turn out positive, we will then tell you what you need

to do, but it really is a fact that unless and until these are treated, your

thyroid hormone simply cannot work.

Have you taken your basal temperature before you get out of bed

in a morning for say, 4 or 5 days. Do this and let us know what they are.

Your latest TSH of 7.76 shows that you are, indeed, very

hypothyroid, but again, your ferritin level of 45 is very low and you must

start on a course of some form of elemental iron to get this raised up as soon

as possible to between 70 to 90 in the range. B12 is OK. You are suffering with

Hashimoto's Thyroiditis with TPA antibodies of 370.

It is going to do no good you upping your thyroxine as your GP

suggests until these other associated conditions have been dealt with. Your GP

is NOT a specialist in thyroid disorders and he has no right to deny you a

referral to one who is. I have sent you my list of doctor who know more about

thyroid disease than your average endocrinologists. Write to your Head of

Practice and say that your doctor is refusing to send you to a specialist of

your choice and would he/she please take appropriate action as you are

unwilling to be left so ill without being given a proper diagnosis or given a

choice of thyroid hormone replacement.

Ask to be referred to one of the doctors on my list as this is

your right and your GP cannot force you to see one in your area.

Luv - Sheila

Latest Blood tests [Feb 2011]show a TSH of 7.76 and Serum free t4 - 14, Serum

free t3 4.4 - Ferritin 45, B12 - 825. Also anti bodies peroxidase –370.

These have never been measured before.

I have asked if it was possible to try t3 – but my gp says that isnt

indicated by my test results. He will not refer me to a specialist until I have

tried upping thyroxine again for 4 months. He says I am depressed and need his

tablets. I do not do well on antidepressants and have been taking st johns

wort. So we are stalemate there.

So am now back to taking 25/50 mcg alt days and already feeling pressure in

throat – which has also been sore. I have been advised to take

propranalol to counter any other unpleasant symptoms.

Are there any thyroid specialists in England that don't just say take the t4!

__

[Guest guest]

hi Suzanna

Sorry i am at work and cannot write much but you should ask for a referral

elsewhere, on this board you will see the name dr peatfield mentioned a lot. He

practices as a nutritionist not a GP (anymore) but may be able to help you.

One thing i came across today is that too much estrogen can affect thyroid

hormone receptors: http://www.migraine101.com/thyroid.htm

" Estrogen Dominance (too much estrogen) causes hypothyroid by lowering the

thyroid receptor sensitivity, NOT by lowering the thyroid blood levels. Taking

progesterone cream and avoiding xenoestrogens and phytoestrogens wakes up the

thyroid receptor after 3-6 months and the hypothyroid goes away. Weight falls

off without dieting or exercise. Sugar cravings go away. Hair begins to thicken

for most people. "

Just a thought, i have heard several hormones can be involved in all this, not

just one. I have symptoms of hypothyroid but like you i cannot tolerate much

thyroid hormone, but unlike you i don't have a high tsh.

this article says that people with mercury toxicity etc can have problems with

thyroid too - the article is based on Dr Mark Starr's book 'type 2

hypothyroidism' in that i believe he said that environmental toxicity can give

stop people from tolearting thyroid

http://www.21centurymed.com/?page_id=12

have you ever looked into your adrenal function? that might affect your abiltiy

to tolerate thyroid too. if you check out the main tpa site you'll see more

info on this: http://www.tpa-uk.org.uk/associated_conditions.php (click on

adrenals and thyroid disease)

there are some thyroid glandulars that are reputed to just have t3 in them, such

as gta-forte and gta-forte II but i don't have personal experience of them and

don't know if they're any good

hope this helps a little

Chris