Hyper/hypothyroidism: I was diagnosed with graves... - Thyroid UK

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Hyper/hypothyroidism

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9 months ago•6 Replies

I was diagnosed with graves disease in april laat year and started on medication. No information was condition other than overactive thyroid. Thank goodness for google. Finally got an appointment endocrine a few weeks ago who advised that iv been medically induced to hypothyroidism. Was advised told to reduce carbimazole to 20mg. Mean while gp wanted me to stay on 40mg plus take levothyroxine so sent my anxiety sky high. Iv followed endocrine consultants intructions though. Can someone advise how long it takes to rectify the overmedication? Im struggling with all this

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6 Replies

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FallingInReverse9 months ago

Welcome to the forum! We can help!

But first we need to know a little about you.

Can you provide your latest blood test results, with ranges, date and time of day they were taken and how you prepped (fast? When was last med dose.)

For each test let us know what meds you were on, how much, and for how long at the time you tested.

We’d be looking for

1) TSH

2) Free T3

3) Free T4

Plus these vitamins if you have them:

4) ferritin

5) folate

6) B12

7)Vit D3

And these antibodies tests - whichever you have if any:

1) TRab

2) TSI

3) TPOab

4) TGab

PurpleNailsAdministrator9 months ago

Welcome to forum

Firstly get copies of your blood test results. Online or printed with lab range.

You need to know what doctors are testing & what the results are. Often doctors diagnose Graves by low TSH but it’s important FT4 & FT3 are tested & the correct antibodies are run to confirm you have continuous hyper Graves. (TSI & TRAb confirm Graves) TPO & TG antibodies are also positive with Graves but will be high with Hashimoto’s.

Hashi can start with transient high but ultimately hypothyroid.

40mg carbimazole it a moderately high starting dose. You’d expect your initial FT4 & FT3 to be very high and in vast majority of cases by 6 weeks it’s necessary to reduce dose - usually by half.

If you stayed on 40 mg since April (10 month?) in not surprised you are medically induced hypothyroid. (I hope I’ve mis understood that?)

Usually adjusting carbimazole to bring FT4 & FT3 to the right level works for most, if levels fluctuate or the FT4 :FT3 balance is disproportionate then doctors consider both a high doses of carbimazole with a Levo replacement. (Block & replace)

Specialist usually manage hyper not GPs.

It’s difficult to predict how long it takes to reverse hypo induced by carbimazole. Firstly we don’t know how severe your levels have become. We don’t know how fast your thyroid will produce new hormone / how fast you metabolise those hormones & we won’t know how the medication adjustment will affects you. It could rise quickly & need adjusting again. Everyone is very individual when it come to how levels are affected.

What I can say is it likely to take weeks / months to return to “normal” and symptoms can linger a while after blood test “tell” doctors it’s “normal”. So give yourself time & try to be patient. Track your own results to make sure it’s the right treatment progress for you.

Ask for folate,ferritin, B12 & vitamin D be tested if not already as these can be affected.

There are private options for blood test if doctors refuse. (Finger prick test at home)

pennyannie9 months ago

Hello Scruff and welcome to the forum :

Graves is an Auto Immune disease for which there is no cure and something has triggered your immune system to turn and attack your body rather than defend it as nature intended.

With Graves the immune system tends to attack the thyroid and or eyes - two major organs - and the symptoms experienced can be upsetting and a challenge - both visually, and physically mentally, emotionally, psychologically with your brain in over drive with your body feeling broken.

What symptoms are you dealing with ?

There is generally a genetic predisposition with a family member maybe a generation away from you with a thyroid health issue and though no two peoples journey with Graves is the same - stress and anxiety seem to be common triggers.

With Graves disease you can have either blocking or stimulating antibodies attacking your thyroid at any given time and these can interchange causing a myriad of symptoms and its a bit like being on a roller coaster without any of the fun.

Graves is considered life threatening if not medicated and the treatment is an Anti Thyroid drug and all this drug does is block your new daily thyroid hormone production and dose dependant slowly your existing T3 and T4 levels should start to fall back into range with hopefully your symptoms relieved.

The NHS generally allocate a treatment window with the AT drug of around 15-18 months within which time scale the AT is adjusted down as your T3 and T4 levels dictate every 6 - 8 weeks as you go through this first phase of Graves with the hope that your thyroid reverts to normal function without the need for any drugs.

Some people like yourself are treated with Block & Replace where the AT drug is prescribed at a much higher level to fully block your new daily thyroid hormone production BUT a measured dose of T4 is prescribed so your T3 and T4 remain within the range and you do not fall too far through the range and suffer the equally disabling symptoms of hypothyroidism.

When metabolism runs too fast as in hyper - or too slow as in hypo - the body struggles to extract key nutrients through food no matter how well and clean you eat - and your core strength vitamins and minerals are liable to nose dive through their ranges causing you further unnecessary ill health - so please arrange for your ferritin, folate, B12 and vitamin D to be run - as these need to maintained at optimal levels which we can advise on as some of the NHS ranges are too wide to even be sensible.

We do now have some research on Graves which is a poorly understood and badly treated auto immune disease :-

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

The most well rounded of all I read is that of Elaine Moore's books and now her website - though think the website currently down - elaine-moore.com - though all too late for me as I was treated with RAI thyroid ablation back in 2005 and became much more unwell some years later and when I started researching for myself my own health problems.

9 months ago

Thank you so much for your reply. Im sorry to hear that things became worse after the treatment. Do you feel like you? Its my tsh levels that arent settling. Currently im like a sloth where as before i was always on the go. Iv had all bloods taken that you listed and everything was fine. I have had probs with my potassium levels falling 3 times in last yr...dont know if connected.

pennyannie• in reply to9 months ago

The TSH level is the least important reading at this point in time -

You need to be dosed and monitored on your Free T3 and Free T4 readings -

Too high a T3/T4 for you - and you will experience symptoms of a faster than your normal metabolism - and said to be ' hyper ' thyroid - just as -

Too low a level of T3/T4 for you - and you will experience symptoms of a slower than normal metabolism for you and said to be ' hypo ' thyroid :

Added to this confusion some symptoms of hyper and hypo can sit in both these extremes of thyroid hormone production and especially with Graves as we have blocking and stimulating antibodies circulating in our blood at any given time both of which vie for control of the thyroid - and if we wait long enough generally can burn each out - leaving us feeling pretty much normal again.

That is why we take the Anti Thyroid medication to semi- or fully block our thyroid production and play for time while we wait for our immune system response to calm down again -

it's a bit like a plane arriving early and waiting for a landing slot and circling above the airport and killing time until being given permission to land.

Please post what these results and ranges actually say as ' fine ' means nothing and an opinion and if ' like a sloth ' your T3 and T4 are likely too low and the AT drug needs adjusting down.

When replying to someone to need to make sure you reply in their post and that their name comes up as you start writing - as then they get notified there is a message waiting for them - otherwise it's pot luck if they see your reply - so it's not that you are being ignored :

P.S. Do you have online access to your medical records held at the surgery ?

It may just help you to arrange this is not as then you can access your information when it suits you and not be reliant on another person's interpretation of them :

Bagl9 months ago

Welcome.Levothyroxine takes a while to rectify thyroid issues. In my case I had a tsh of 100 and it took me about 7 months to bring it to less than one.

My advice is stick to the guidelines of your doctor and take it a day at a time and you will be OK.

Regards

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