Reduced Medication by GP

[MrsAitchbee]

Hi there

I have had an underachieve thyroid for the past 11 years and have been on 100mcg of Thyroxine for a good number of years. Three times now I have gone for my regular blood test and it has shown I am taking too much thyroxine and my dose has been reduced to 75mcg and within a week I hit the deck running feeling dreadful! They put me back up to 100 and my next blood test is fine!!! GP has reduced it again saying its dangerous to have too much to 75 and now I feel horrific! My last blood test showed Free T4 21.2 TSH 0.08 .....just taken myself to docs for a repeat to see how the reduced thyroxine has effected me. A few years ago I had a scan and it showed I have nodules on my thyroid. Was assured it was nothing to worry about...can these nodules produce hormones and that be the reason I am showing over medicated. Thanks for reading this ....off for a lie down!

[shaws]

Welcome to our forum,

The first thing I would do is change your doctor. The worst thing they can do is adjust doses up/down according to the TSH alone and disregarding patients' clinical symptoms.

Did you take levothyroxine before your blood tests? If so, make a new appointment to have another blood test. Do NOT take levo before it and have it as early as possible. Also ask for Free T4 and Free T3 (might not do this). Leave around 24 hours between a thyroid gland blood test and taking levo.

If we took to much levo we would soon be aware and reduce it ourselves without even going to the GP. The only danger of levothyroxine or any other thyroid medications, is if the dose is too low, which is far more common. Also, always get a print-out of your blood test results with the ranges for your own records and so you can post if you have a query. Labs differ in their ranges so that's why we need them. Also get a Vitamin B12, Vit D, iron, ferritin and folate if you've not had them done recently. We are usually low in these.

[MrsAitchbee in reply to shaws]

Hi there Thanks for the speedy reply. This is a new doctors here in Devon...both previous doctors have just reduced without asking how I was!!! No never take any meds before a blood test.I know for sure that this practise will not do extra blood tests. Is it worth paying to have the full range of blood tests done and taking them to the docs?

[shaws in reply to MrsAitchbee]

No, I doubt it will have any affect as they will stick to the awful guidelines by the British Thyroid Association, where they don't recommend anything other than levo and only go by the TSH. You could maybe look into getting a Free T3 done - I am not sure how it will cost. I believe Blue Horizon do a 'pin prick' test and you can get a small discount by using Thyroiduk's code.

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

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

You will have to look into caring for yourself. This is an archived link and you can click on any topic that interests you.

web.archive.org/web/2010103...

Get a print-out of your latest blood tests with the ranges and post them on a new post for comments.

[Hennerton]

I would guess that you are not converting the Thyroxine very well into T3 - the useable hormone. If you can have a new blood test for free T3, free T4 and TSH, it will probably show that your T3 is bottom or under reference range and your T4 is high in range. This high T4 gives you a low TSH, which is why they keep reducing your dose. I had this problem and saw an Endo privately who prescribed T3 to be added to a reduced dose of T4. It was the best money spent and my GP then followed up with repeat prescriptions on the NHS. It is worth a try. Louise Warvill has a list of Endos who will give T3. I believe.

[MrsAitchbee]

Wow Hennerton thank you so much for the info...Did your gp give you the relevant blood tests or did you have to pay for them privately? How do I contact Louise Warvill for the lists of Endo's??

[shaws in reply to MrsAitchbee]

email [e-mail] for a list of doctors. This is a link which you may find useful.

hormonerestoration.com/Thyr...

[Hidden]

Or you could save alot of money and aggravation with the nhs and source your own ndt.

[Glynisrose]

Blood tests alone are about as useful as a chocolate rocket to the sun and back! If your doctor doesn't go by your symptoms then you have to it helps to keep you sane!! NEVER let your doctor reduce your meds based on blood results alone, the NHS cannot force treatment on you and NO doctor can change or lower your meds without your permission, DO NOT GIVE IT TO THEM!! To simply say nothing is (in their book) tacit agreement so you have to speak out.

[MrsAitchbee]

I really feel like crying right now!! I have been on reduced meds for almost 3 weeks and have felt so horrible dragging myself around so I took myself off to the nurse and had a further blood test done. I asked the doctor who is new to me to call me today with the results. My Free T4 is down from 21.2 to 18.1 and my TSH has gone from 0.08 to 0.13. He said he thought I wasn't feeling well because my body needs to recalibrate with the reduced medication! Told me his aim was to get me down to 0.35 and that if I didn't stay on the lower dosage I would suffer a heart attack and broken hips because of the higher dosage...he said this about 6 times and I told him I felt he was bullying me into taking the lower dose. I suggested that it should be about how I am feeling rather than the blood test and he refused to accept that. He then said well its up to you if you want to increase your dose but its my duty to tell you you will have a heart attack and break bones if you do!!! Crying now...sorry but I feel so bloody frustrated! He then told me that they can't do blood test every week and suggested he was surprised they hadn't got their knuckles wrapped for doing me a second blood test!