GP messing about with dose: My endo got me... - Thyroid UK

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GP messing about with dose

Vanesha profile image
9 Replies

My endo got me stabilised on 150mcg levothyroxine for hypothyroid diagnosed 2013 and I get a phone call from my GP telling me to reduce

My body doesn't know whether it's coming or going and my thyroid has started to swell, I am getting cold again and eyes are dark and puffy.

I am sure this wouldn't have happened if my GP didn't get involved but am I wrong and I'm not wrong why did the GP have to get involved? Why did my dose have to get messed about the way it did?

I am very upset about what has happened and no idea which way to turn next

Thank you

(150mcg levothyroxine, fasting, early morning and leaving 24 hours between dose and blood draw)

Aug 17

TSH 0.03 (0.2 - 4.2)

Free T4 20.7 (12 - 22)

Free T3 3.9 (3.1 - 6.8)

(100mcg levothyroxine, fasting, late afternoon and leaving 24 hours between dose and blood draw)

Oct 17

TSH 8.2 (0.2 - 4.2)

Free T4 13.3 (12 - 22)

Free T3 3.9 (3.1 - 6.8)

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Vanesha profile image
Vanesha
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9 Replies
Kes8 profile image
Kes8

If I was you I'd ring/write your endo and urgently get him to contact your GP and increase your dose again.

I would also write to your GP (Mine tend to be more helpful when everything is written down!) stating any symptoms you have, and that your reduction in levo has resulted in worsening biochemistry. I would CC in the endo.

I would request that they contact you immediately to arrange a appointment to discuss the blood test results and what they going to do about it.

Perhaps also suggest that any future dose changes should only be after discussions with yourself and your endo.

Vanesha profile image
Vanesha in reply toKes8

Thanks my endo sends my GP letters and they CC me into them but the GP does not take action on what has been written. They just write comments saying no action needed. They also do not contact me about bloods either.

Nanaedake profile image
Nanaedake

YOu might get a quicker dose increase by visiting another GP in your practice and pointing out you are now very undermedicated and need an immediate dose increase while you try to contact your Endo. Point out that in August your FT3 and FT4 were in range so you were not overmedicated and the GP should not have altered your dose.

Levothyroxine dose should only be altered by 25mcg at a time or you will feel very unwell. In fact, some people only tolerate a 12.5 mcg increase or decrease at a time.

Increase your levothyroxine by 25mcg and restest in 4 to 6 weeks and increase again and repeat until your TSH is 1.0 or a little lower and your FT3 is still in range.

In fact in August your FT3 although in range was rather low which shows you did not have much active thyroid hormone in your body. You may have vitamin deficiencies and they are probably greater now that you have become hypothyroid. Vitamin deficiency is very common with thyroid disease. INsist your GP test B12, folate, ferritin and vitamin D when you have your next blood test.

You need to know and understand whether you have thyroid antibodies and therefore have Hashimotos thyroiditis. That can make your blood test results fluctuate. If you understand about your condition you will be able to manage it better with or without the Endo.

If you write to your Endo, copy your GP into the letter. You may not want every dose change to be controlled by your Endo if he/she is not very accessible. You need to learn more about your own condition and exert some control to manage your condition more effectively. If you understand how thyroid hormone works you will know whether your GP is giving sound advice or not and you can resist senseless changes and insist GP contact the Endo first.

it sounds like your GP doesn't understand thyroid hormone and thyroid disease at all.

By the way, always have your blood tests fasting and first thing in the morning taking levo after your blood test.

Vanesha profile image
Vanesha in reply toNanaedake

No idea what my antibodies mean. Thyroid peroxidase antibodies 404.5 (<34) thyroglobulin antibodies >1300 (<115) and all bloods are done fasting and early morning and I take levothyroxine after blood test. Thanks

bluebug profile image
bluebug in reply toVanesha

Means you have autoimmune thyroid disease.

greygoose profile image
greygoose

Because some doctors have a god complex and enjoy the power! But yours certainly doesn't know what he's doing. He saw the suppressed TSH and panicked, because he doesn't know much about thyroid.

And, I have to say, that even in August, you might have been 'stabilised' on 150 mcg levo - not really a very helpful word when it comes to thyroid! - but you were still hypo. Your FT3 was rock bottom, because you are a very poor converter. What does your endo say about that?

Vanesha profile image
Vanesha in reply togreygoose

Previous endo says I am a poor converter, the one I am currently seeing has not mentioned anything about conversion. Thanks

greygoose profile image
greygoose in reply toVanesha

Incredible as it may seem, not all endos think it's important.

bluebug profile image
bluebug

I am aware you are new to this forum so unfortunately you wouldn't have been aware of all the information posters are giving you.

Anyway in future if you are being treated by a specialist for anything, you as a patient should always "politely" ask the GP why they aren't following the specialist's advice if they try and alter your treatment. Make it clear you will kick up a fuss if the treatment plan is altered.

Yes sometimes the specialist is wrong, but if you are not having any problems with the treatment plan the specialist has given then challenge the GP. GPs are not specialists, which is recognised in law, and they also don't want patients who will kick up a fuss either directly or indirectly by ending up as an emergency admission in a hospital.

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