Re: GP, fatigue, lack of care/concern, help needed

[Guest guest]

Jen,

Besides treating by symptoms as well, is he treating by only one blood test.

Has he done all the tests. Just the TSH does not work. My TSH is below range but so is my T3 and my T4 low. On TSH alone I am 'normal' but together with the other tests it is agreed I am under medicated.

Lilian

[Guest guest]

> Help! Should I just try increasing it on my own and see how I feel?

>

Hi Jen, I was in the same situation as you and in desparation I did

exactly what you are considering.

If you look at the patient information leaflet which comes in your

pill pack it might say something like the doseage should be

increased by 50mcg every X weeks until optimum doseage is achieved.

Being cautious, I first increased the dose by 25mcg (half a pill)

for a few weeks and when I still didn't get any negative reactions

nor positive ones either, I then upped my dose to 100mcg. Still no

nasty side effects so I stayed on 100mcg until my next GP

appointment.

I told the GP I was taking twice the doseage he had originally

prescribed as the patient information leaflet indicated I should.

Fortunately he accepted this and has now formally upped my

prescription to 100mcg.

My problem now is it has taken an unofficial dose of 150mcg to

finally see off most of my symptoms. My GP had refused to raise my

dose to 150mcg at the last appointment even though I said that I was

still symptomatic on 100mcg, though in a far better condition even

so.

Currently I feel 80% better than I had been back in March so I am

glad I raised my dose. I'd like to try 175mcg to see if I can get

nearer to 100% better but will wait until my October GP appointment

to broach the subject.

If I hadn't taken the initiative in the first place I KNOW I would

still be stuck on 50mcg and be just 30% better. The daft thing is,

at the time, I was convinced that that 30% improvement was as good

as I was ever going to get and almost put up with it.

Everyone's body is different so be sensitive to what yours tells

you. Err on the side of caution to be safe. I had my recent blood

test results at hand when I upped my dose, so I knew my TSH levels

still needed to drop and my T4 was still low. If my T4 had been at

an acceptable level I would not have risked raising the dose.

Hope this helps,

Tracey

[Guest guest]

It was at this sort of point in my own treatment (although on 125 of

T4, but with " normal " blood tests for TSH and T4) that I gave my Dr the

rant that said " why, if T4 was supposed to replace what I was not

making myself, could I not do anything outside work and not even pull

my weight at work, let alone pull my weight by doing housework " and

then some more and demanded a referral to Dr S. Dr S put up my T4 by

stages to 200 which I went onto 2 1/2 weeks ago, and even on 150 I felt

tons better.

I don't know what my current bloods would show, or even care very much.

I think I will buy a digital thermometer and take my temp as has been

written about quite a lot recently.

Any chance you could see someone helpful?

Kat

> Saw my gp this afternoon and told him how tired I still was, very

> fatigued slept most of Mon and Tues to recover from being at friends

> wedding on Saturday (drove up Fri and back Sun). Also that I still

pass

> out most afternoons.

>

> Says my last blood test showed things were normal so he won't

increase

> my levothyroxine from 50mg. I'm fed up (would have used another word

> but didn't know if it was allowed). I thought they were supposed to

> treat to symptoms as well as numbers?

>

> Help! Should I just try increasing it on my own and see how I feel?

>

[Guest guest]

Tracey,

You wrote:

>

> ... If I hadn't taken the initiative in the first place I KNOW I would

> still be stuck on 50mcg and be just 30% better...

The dose response is definitely not linear. The closer you get to your

optimum dose (when you finally start to feel better), the smaller the

titration increment should be to avoid the sort of hyperT experience

that reported earlier this week. As you get closer, you should be

sure to allow the full stabilization period between tests, about six

weeks. So the doctor has a point.

OTOH, if you are still symptomatic, you have a good argument that you

are not close to the euthyroid range yet and could tolerate a faster pace.

Chuck

[Guest guest]

You need to write a letter to your GP with a copy to the Head of Practice and ask for a referral to an endocrinologist because you are suffering too much and need the advice of an expert in thyroid disease. List all of your symptoms and signs. To check on these, have a look at the list on our website www.tpa-uk.org.uk and click on 'Hypothyroidism's and then click on 'Symptoms and Signs' in the drop down menu. Also, take your basal temperature before you get out of bed and before you drink anything in the morning for about 4 or 5 days, and list these also. Normal temperature is around 98.4. If your temperature is 97.8 (and it could be much less) this is an indication your metabolism is running low. Write these down under your symptoms. Write down also whether there are any members of your family who have a thyroid or autoimmune problem.

Ask in the letter for a FULL thyroid function blood test. This should include TSH, Free T4, Free T3 and a test to see if you do have antibodies to your thyroid if this has not already been done. Ask also to have your ferritin (stored iron) level checked, together with B12, vitamin D and electrolytes. I would put in a stamped addressed envelope for a reply and ask him/her to respond as soon as possible as you are no longer able to continue to function with your present symptoms without further investigation into what is the cause of your symptoms if you don't have a thyroid problem. The letter will then have to go into your medical notes. It might make the GP re-think your treatment protocol. The average dose of levothyroxine in the UK is around 125 mcgs.

Unless you have a heart problem, a dose of 50 mcgs is very unlikely to be of any help in getting rid of your fatigue, nor any other symptoms, and the fact that your GP is refusing to increase it is only prolonging your illness. This shows your GP is not the right person to be looking after you under the circumstances as s/he does not know enough about hypothyroidism and how it should be treated, so you must get a referral to a thyroid specialist. If s/e refuses to refer you - and s/he might not - then you may want to consider chancing your doctor to one who actually cares about his patients.

Luv

> Saw my gp this afternoon and told him how tired I still was, very > fatigued slept most of Mon and Tues to recover from being at friends > wedding on Saturday (drove up Fri and back Sun). Also that I still pass > out most afternoons.> > Says my last blood test showed things were normal so he won't increase > my levothyroxine from 50mg. I'm fed up (would have used another word > but didn't know if it was allowed). I thought they were supposed to > treat to symptoms as well as numbers?> > Help! Should I just try increasing it on my own and see how I feel?>

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[Guest guest]

Thanks everyone for the advice. I may try increasing the dose myself

but watching out for the symptoms (I have a good book). Thanks Sheila I

may give myself to my next gp appointment in 4 weeks time and then see,

but go armed with everything I need. I'll buy a pill splitter today.

Does it need to be an oral thermometer to take my temp or does an in

ear digital one give the same reading?

I can see why he might be cautious as I have had my high bp meds

changed recently and we're still trying to find the optimum dose for

that. That though doesn't explain the fact that the fatigue has not

improved. I had even thought that I'd stopped losing my hair in the way

I had then in the shower yesterday it seemed worse again.

The joys of being hypoT.

One thing I did find out last weekend was that I can wear my contact

lenses again with little/no discomfort. I only have daily disposables

that are mainly used for holidays so I can wear nice sunglasses but

last December in Australia I found no end of problems with them, but I

wore 2 pairs over the weekend and things were so much better. And as I

said the blurry vision has improved.

[Guest guest]

I agree Chuck, which is why I am holding my horses at this stage. I

have been on 150 mcg (on a 100mcg prescription) for some months now

and 100 mcg (on a 50mcg prescription)prior to that. Having recovered

well so far I don't want to compromise my progress. My mum had to

take a dose of 200mcg before she even got to the level of wellbeing

I have now, so I appreciate I have been fortunate.

The GP should be able to see how much better I am since he last saw

me though I know I'm still not all the way there. The only real

issues for me now are the inability to lose weight in spite of a

major exercise program, active lifestyle and sensible diet and the

random attacks of fluid retention. A severe one will limit my

mobility and cause me to become clumsy. Fortunately as time

progresses these attacks are becoming more infrequent. Maybe the 150

mcg is my optimum dose and it will take some time more on it for the

weight issue to level off. I'm seeing what the GP will say on this

one. I finally have my quality of life back and just need time to

give me the confidence its not going to vanish overnight again.

The real breakthrough has been in my body's ability to handle

psychological stress. Last week, for example, was a living

nightmare - we had the police round 3 times, my 10 year old was

excluded from school for 5 days, I had 2 job interviews followed by

a rejection for my dream job, the family goldfish started to go

through death throes and my daughter left home for university. I've

also had to deal with a glut of unpleasant letters including one

concerning a forthcoming tribunal to resolve the aftermath of

government computer cock-up. I haven't collapsed yet nor even

started to feel ill which is truly amazing as that was how I

typically used to be affected!

Somehow I've had the energy and focus to be able to cope with it all

without the usual kick-back of total physical and mental exhaustion.

I feel much stronger all round - hey, even my eyebrows have grown

back!

Tracey

> >

> > ... If I hadn't taken the initiative in the first place I KNOW I

would

> > still be stuck on 50mcg and be just 30% better...

>

> The dose response is definitely not linear. The closer you get to

your

> optimum dose (when you finally start to feel better), the smaller

the

> titration increment should be to avoid the sort of hyperT

experience

> that reported earlier this week. As you get closer, you

should be

> sure to allow the full stabilization period between tests, about

six

> weeks. So the doctor has a point.

[Guest guest]

Hi Chuck

What still confuses me is I used to take 150mcg, but wasnt 100% well on it, now I take cortisone and 75mcg seemed too much, but then again I only stayed on 50mcg for 6 days before increasing it to 75mcg because I thought I could increase quicker having been on 150mcg previously. Do you think this was why I had the racing heart episode because I increased too quick and going slower now and back on 50mcg will be best for a now, I wonder if I will ever be able to increase it or if 50mcg will be my dose> > ... If I hadn't taken the initiative in the first place I KNOW I would> still be stuck on 50mcg and be just 30% better...Chuck

[Guest guest]



You can only live in hope , that 50mcgs will be your dose. Just wait and see and don't worry about this at this stage. Just keep plotting your temperatures.

Sheila

Hi Chuck

What still confuses me is I used to take 150mcg, but wasnt 100% well on it, now I take cortisone and 75mcg seemed too much, but then again I only stayed on 50mcg for 6 days before increasing it to 75mcg because I thought I could increase quicker having been on 150mcg previously. Do you think this was why I had the racing heart episode because I increased too quick and going slower now and back on 50mcg will be best for a now, I wonder if I w

ill ever be able to increase it or if 50mcg will be my dose

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