British Thyroid Foundation Newsletter

[Guest guest]

The BTF Quarterly Newsletter, which I received yesterday

appears to be well on the RCP, BTF campaign to deny the existence of the

thyroid hormone triiodothyronine (T4). In all of the content, not one single mention of T3 or

comment regarding T3 has been made. Do they really believe if they

refuse to talk or write about T3 - they will eventually make it disappear ?

There is an article called " Case Study " supposedly

written by a woman who has an under-active thyroid for 12 years and suffered

with severe thigh and arm muscle pain and weakness (proximal myopathy). Despite

" adequate treatment with levothyroxine " she never fully recovered. Her

mobility is restricted in how far she can walk and what she can do. She saw a

consultant neurologist for a number of years who was " sympathetic " by

the told her there was no treatment available, as no research has been done

into continuing muscle symptoms in hypothyroidism, as it is a " RARE "

symptom.

She consulted a " self-styled 'thyroid expert' " who

told her she had clear signs of an adrenal problem and that this was adding to

her hypothyroidism symptoms. She said the saliva tests he recommended confirmed

this diagnosis. He told her to take adrenal glandular tablets, but she had to

stop her levothyroxine for 6 days to avoid an overdose situation, and then to

take half her normal dose of T4 with the adrenal tablets. She goes on to say

that as soon as she started the adrenal tablets her muscles went very painful

and weak. She could not get him on the phone for advice. Said her muscles got

worse and worse. After five days, she resumed her normal dose of levothyroxine

and stopped the adrenal tablets.

The BTF articles goes on to say in her misguided

attempt to make up the missing levothyroxine, she took extra for a few days and

seemed to be recovering, but then after 2 weeks, she suddenly got severe muscle

pain and weakness again, plus terrible painful cramps in her calf muscles. Apparently

she did speak to the " self-styled 'thyroid expert' " who told her she

was beyond his experience and offered to refund his fee. She said her GP

was unable to help her, so asked to be referred to a NHS thyroid consultant.

This took 6 weeks, during which time her muscle symptoms became even more

severe. She was bed bound for weeks, with extreme pain and weakness in her

thigh muscles and constant painful cramps in her calf muscles,. She says she

was left to cope with all this on her own and that it was a stressful ordeal.

She says her life has been a nightmare for the last year.

Since April 09, she has been virtually unable to walk. Although no longer

bed-ridden, she has severe muscle problems with pain and weakness and dreadful

stiffness, aches and inflammation. Still struggling to get around and can't do

housework or cook meals for herself.

She says that has cost her a whole year of her life, not to

mention the huge financial cost of paying for carers for months, plus the cost

of useless and misleading saliva tests.

She says to her bitter regret, she trusted " an

over-confident, self-styled 'thyroid expert' who only knew enough to wreck

my health and life, and left me to my ghastly fate " . She says her advice

is NOT to trust anyone outside of the properly accredited medical profession

and not to make her terrible mistake and trust other people's recommendations

of 'alternative' doctors and nutritionists.

The BTF Medical Adviser writes: My own comments highlighted

yellow. This lady has been taking levothyroxine for 12 years for

hypothyroidism but still had muscle problems which a consultant neurologist

could offer no help with. (So, it appears that levothyroxine alone was unable to take away her

pains she had suffered for all those years - perhaps if they had tested her

free T3 levels, they might have seen these to be low in the reference range,

given her a trial of either synthetic T3 or natural thyroid extract and seen

these pains and weakness disappearing - and given the poor women her health and

life back)

She was then told by the self -styled 'thyroid expert'

that she required adrenal replacement therapy on the basis of a saliva test. While

a saliva test may have indicated the possibility of adrenal failure (which can

indeed occur in the context of autoimmune hypothyroidism) further special

testing should have been performed to confirm the diagnosis. (So, they DO recognise the 24

hour salivary adrenal profile may show adrenal failure - but they still will

NOT acknowledge that it shows 'adrenal fatigue' or 'low adrenal reserve'. Also,

they do not say that further testing (presumably NHS) ONLY tests to see whether

the patient has 's Disease or Cushing's syndrome.)

After 12 years of levothyroxine therapy, I do not think

there was any indication to stop it while adrenal therapy was started. (Methinks this BTF Medical

Adviser needs to go back to school to learn about the adrenal/thyroid

connection. Doesn't he know that on the Patient Information Leaflet stuffed

into every box of levothyroxine there is a section that states " Before

taking levothyroxine, make sure you have told your doctor if you: are suffering

from a condition caused by an underactive adrenal gland " - and on another

PIL it states " Tell your doctor if you are suffering from a disease

causing decreased function of the adrenal glands: This BTF Medical Adviser is

downright dangerous.)

The cause of her current symptoms is not clear although

they do seem to be related to stopping her levothyroxine.

(Err -

pardon me, she has already told us she has been suffering these symptoms for

the past 12 years - isn't it possible she needs the active thyroid hormone T3.)

Currently, she still has symptoms even while taking an

appropriate dose of levothyroxine and I would have expected these to have

improved over time. So

- as the symptoms have not improved, what have you done to try to find the reason

WHY she was not getting better with your " appropriate " dose of

levothyroxine? She

has symptoms when she doesn't take levothyroxine and symptoms when she does.

Perhaps if this lady had taken her adrenal glandulars for more than 5 days and

followed the " self-styled 'thyroid experts " advice she just might

have got her health and her life back.

Unfortunately, recent consultant referrals at this stage

do not seem to have helped her. Awe - now, where have we heard that one before - I bet her recent

consultant referrals were to NHS endocrinologists who specialised in diabetes. Meanwhile,

the lesson from this very unfortunate experience is to consult doctors who are

accredited appropriately in endocrinology.

Unfortunately

mate, most of us here have consulted doctors who are " accredited

appropriately in endocrinology " and been left in a similar situation to

this poor women - that's why we end up seeking the support of thyroid forums

and others outside of the mainstream treatment protocol using levothyroxine

only. When will you learn?

Further comment from me would be putting my head on the chopping

block. What IS their game?

Luv - Sheila