Reducing meds

[desperation]

Over the last 2 years I have been trying to reduce meds as I am oversubscribed according to my blood tests. I am dreading going back to specialist as I have not been able to reduce anymore since July. Back to skin complaints, exhaustion and a hoarse voice. When asked if he could make me feel better the answer was he could prevent me having a stroke! What are the risks? I think I'd rather feel well and take the risk!

[Hidden]

Hello desperation,

I am sorry you are feeling so unwell.

It sounds as if your endo is treating you by blood test results alone and keeping you well within range. If you are showing signs of hypothyroidism you may be undermedicated.

Can you advise what meds you are taking and the dose?

Can you supply thyroid hormone blood test results complete with ranges ?

( numbers in brackets).

You haven't supplied blood test results since Dr Skinner diagnosed you years ago.

I know it can be a fight to obtain blood test results but without members will only be able to suggest you sound undermedicated.

Ask your doctors surgery to supply copies as the hospital should have informed them (if they are not automatically available online for you.) Alternatively you could ring your endos secretary and ask her to email you copies. ( I have to do this as I see an endo in another health trust.)

If people are unhelpful, be polite but stand your ground as you have a right to be advised of your test results.

Many members private test when their doctors are uncooperative. (Link below).

It would be prudent to have all nutrients and iron levels tested If you have been ill for much of the time. Ask your GP to test Vit B12, Vit D, folate & ferritin as deficiencies are common in people with low thyroid hormone. These are also required for good thyroid hormone synthesis. Again post results complete with ranges.

Thyroid meds will only work well if the dose, your nutrients & iron and cortisol (adrenals) levels are sufficient so it is a case of finding out what is wrong.

I hope you feel better soon.

Flower

Accessing your medical records

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You have a right to see your medical records under the Data Protection Act 1998. Guidance on The Data Protection Act 1998 can be found at:

ico.org.uk/for-the-public/p...

Private labs testing

thyroiduk.org.uk/tuk/testin...

Supplements known to help thyroid function

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Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

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[Hidden in reply to Hidden]

Admin flower can you advise me plz went on t3 instead of Levo 75 (20mgwhich I split4xdaily)1st dec had blood draw17 th dec level tsh (they not give me any more levels asked for copy) 0.50 normal no action is that a good level to be plz? Was hoping they would have done the other tests now on t3!! Like asking for gold! I'm not computer literate cannot remember how to start a post of my own that's why posted here sorry thanks x

[Hidden in reply to Hidden]

Flower 007 admin above post for you thank you

[Hidden in reply to Hidden]

mollymaid,

If you wish to post a question click on the orange button labelled " write a post" on the right hand side of screen.

Title would be the subject of your post & it is advisable (although optional) to click on the "community" under the "who is this post for ?" section.

According to your previous posts you are medicating Levo 75mcg and T3 20mcg and these are similar to my own meds.

Confirm in a new post what 0.50 refers to and include range (numbers in brackets) so members can offer a more informed answer.

When splitting T3 into four doses, be especially carefully not to take within four hours of calcium or iron, which may bind to hormones and prevent them from working.

Flower

……………………………………………………………………………………………………

Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

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[helvella Administrator Thyroid UK in reply to Hidden]

If you wish to post a question click on the orange button labelled " write a post" on the right hand side of screen.

It's green for me!

I think it might vary depending on, umm, something. I have had the trial colour scheme for weeks on my PC - but the old scheme on a phone. (I think - probably wouldn't notice if it changed.)

[Hidden in reply to helvella]

...[ ..depending on, umm, something ...].. lol

Very scientific ! !

Lucky you having a choice.

Flo

[shaws Administrator]

I am sorry you are left high and dry and I think you sound undermedicated. Never mind that the blood tests say you are oversubscribed - blood tests cannot speak - the person who is suffering is the one to say 'I don't feel well' 'I think I need more hormones' and to be told by the 'SPECIALIST' - no I cannot because your TSH is too low or whatever other excuse.

Follow Flower's advice and get a copy of your results and post on a new question. We have to use our own initiatives at times when we are not recovering. Even the addition of some T3 for instance can be a bonus and may help.

Maybe ask GP for a Full Thyroid Function Test if you've not had one recently. Say you are unwell. If he says 'no' ask if you can have a Free T3 blood test to show whether there is sufficient Active hormone in your blood to enable you to function normally. If you don't convert T4 to sufficient T3 we feel unwell. T4 is inactive and it's job is to convert to T3. If he still says no you can get a private one from Thyroiduk's recommended labs and get a small discount.

The only way to tell if we are on too much medication is that we will have signs of overstimulation, ie. very fast heart rate, too hot, sweats etc etc.

When you have a blood test for your thyroid hormones get the earliest possible and fast (you can drink water). Leave about 24 hours between your last dose of levo and the test and take levo afterwards.

[shaws Administrator]

When you get a blood test it should be the earliest possible and fast. Don't take levo for about 24 hours before the test and fast (you can drink water) and take it afterwards.

Always get a print-out of the results with the ranges for your own records and post if you have a query.

[Glynisrose]

Why reduce meds? Is your TSH suppressed? Thats not a bad thing!! Tell your doctor that you are happy with your level of meds regardless to what blood tests read. After all you are a person NOT a set of numbers.

[greygoose]

The 'specialist' is not your headmaster! You Don't have to dread going to see him. He is there to advise you, not dictate to you. You know that reducing your meds is going to make you feel ill, so just refuse. Just say NO!

It's your body, your life and your health. Don't let him ruin any of it for you. He is not in your body, he does not know how you feel. You have to tell him and you have to be firm. (Yes, I realise that might be a bit daunting, especially if you aren't used to asserting yourself, and with the usual hypo timidity, but it has to be done!)

Don't be afraid of him. What's the worst he can do to you? Shout at you? Shout back! lol

The first step to taking charge of your health is to get copies of your blood results - with ranges - every time you have a blood test. You need to know what was tested, and what exactly the result was. If he is only testing the TSH, then he has no right to tell you you are over-replaced. You are only over-replaced if your FT3 is well over-range. But, even so, symptoms are more important. If he hasn't even tested the FT3, then tell him to go take a running jump! No, seriously, just tell him that you will agree to reduce your dose IF your FT3 is over-range, and for no other reason.

I'm pretty certain he's only looking at the TSH, even if he did do the other tests - that's what they usually do. But a suppressed TSH means nothing on its own. And it is not dangerous to have a suppressed TSH. That's just bull***t and scare tactics. And ignorance. But you know better! So, take charge of your health and get yourself well!

Take care.