Total thyroidectomy

[Mrsmcl]

I had a TT in Aug 21 for hashimotos which went to Graves’ disease and large multi modular goitre. Since surgery I was on 150mcg thyroxine which was reduced after 6 weeks to 125mcg and have been on that dose since . My last bloods showed that I was now possibly being over medicated but Gp said they would not be able to check my bloods again for 3 months and to continue on current dose. I feel pretty rubbish constant headaches fatigue heart flutters. I also have TED that began in 2017 and have had two flare ups since diagnosis I was told TT would help but there has been no difference since surgery my eyes are so dry, red sensitive to bright light and water terrible , if I rub them they sting . I’ve had to give up my job working with a computer screen to try help . My ophthalmologist has now referred me for an orbital decompression which I see a surgeon in June for. My question is it normal to be over medicated when you have no thyroid and it to have been all ok for 18 months? is waiting 3 months to long to wait to get them repeated im worried it causes my eyes to flare up worse I’m already very self conscious. Any advice would be great x

[Jaydee1507 Administrator]

Exactly what were your latest bloods with ranges for each test?

Did you test as per the protocol recomended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

You made a very similar post a year ago. healthunlocked.com/thyroidu...

What are you latest results for ferritin, folate, B12 & D3?

Have you tried a strictly gluten free diet?

Do you always get the same brand at each prescription?

[Mrsmcl in reply to Jaydee1507]

hi

I do not know the exact ranges it was the receptionist at surgery that gave results and what Gp said . I have had blood results checked since my last post when I went back to gp and got them checked I was told then it was all in normal ranges. ( ferritin etc) I did start feeling a lot better around 8 months after TT so just got on with things but last month or so I’ve started feeling rubbish again. I do gluten free diet and have cut a lot of things out my diet I know upsets my system I also do intermittent fasting as that has helped me lose some weight .Bloods were checked first thing and I fasted for them I had taken my pills more than 24 hours previously. I don’t take any supplements. Don’t always get same brand but always use same chemist .

[Jaydee1507 Administrator in reply to Mrsmcl]

Firstly the intermittent fasting may well be affecting your blood results. It tends to lower TSH and raise FT4. You need to let your GP know that you are doing IF.

You might be better off stopping IF for a while and getting your blood results/treatment right.

If you have had blood tests done for vitamins then go to your GP surgery and ask them to print the results off, same with latest thyroid results. You are legally entitled to a printed copy of your results. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception. Post results here when you have them. We do really need to see your FT3 which is really only available via a private test though. thyroiduk.org/help-and-supp...

Its highly likely you have low vitamin levels and your thyroid hormone wont be able to work well as a result. People in this group need to supplement vitamins continuously to feel well.

Recommend you pick a brand thats OK for you and get it written on your prescription.

Well done on going gluten free.

[Mrsmcl in reply to Jaydee1507]

ok thanks I will ask for results to be printed I’m actually due a medication review for a water tablet I take so will ask then to check my vitamin levels .

I didn’t know fasting could affect the blood tests I will try stop that until this gets sorted

Thanks my gut health is definitely lots better since going gluten free

[SlowDragon Administrator]

I do not know the exact ranges it was the receptionist at surgery that gave results and what Gp said . I have had blood results checked since my last post when I went back to gp and got them checked I was told then it was all in normal ranges

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

New blood test

Book early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Request that they test TSH, Ft4 and Ft3 plus vitamin D, folate, ferritin and B12

Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine

Work out which brand levothyroxine suits you best ……and always get same brand at each prescription

Come back with new post once you get copies of previous test results and new testing results

[pennyannie]

Hello again :

Please ensue that whatever lotion, potions, drops or spray you use to ease your dry, gritty burning, eyes that all are Preservative Free - even those prescribed by the NHS.

I too am very light sensitive and wear high density UV sunglasses when outside which have deep side arms so the sunlight can't break through there. Purchased mine from an RNIB shop while waiting to take my neighbour home as she was being checked out for macular degeneration.

I too was very self conscious but my damage declared as not bad enough for eye surgery and have to say that now I'm optimally medicated on thyroid hormone replacement and over a period of several years, the swelling and protrusion not so acute - unless of course, I'm jut resigned to it all and choosing to kid myself.

It is essential that you are not dosed or monitored on just a TSH reading which leads to these stupid comments made by doctors - to know if you are overmedicated they just need to run the full thyroid blood panel which is a of a minimum TSH, Free T3 and a Free T4 :

You can get private blood tests run yourself - check out the page on Thyroid UK - thyroiduk.org and Monitor My Health - a NHS laboratory can process a finger prick blood test done by you at home, and you receive the results and ranges in a few days.

Once with this information start a new question and we can then offer support with sound suggestions rather than guessing and waiting around for another 3 months with your health becoming further compromised.

When you are not optimally medicated your metabolism is slowed and you may well now have non optimal core strength vitamins and minerals and this in itself will be compounding your health as T4 - Levothyroxine. to work well and convert well into T3 within your body, needs you to have optimal levels of ferritin, folate, B12 and vitamin D.

So you could choose a venous blood draw, and arrange a nurse home visit to draw your blood and then we would have a much fuller picture with which to help advise you on for your next best steps back to better health.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg..

T4 - is a storage hormone and basically inert and needs to be converted by your body into T3 the active hormone that runs the body and said to be around 4 times more powerful than T4.

Some people can get by on T4 only :

Some people find that T4 seems to not wok as well as it once did - and by adding in a little T3 - Liothyronine they can restore their thyroid hormonal balance - making a T3 / T4 combination of medications.

Some people can't tolerate T4 and need to take T3 only :

Whilst others find their health restored better by taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.

[pennyannie in reply to pennyannie]

Sorry about the typos -

I knew I needed a catnap - better now -

and I've just reread my reply and now it should be word perfect :

I hope !! :

[Mrsmcl in reply to pennyannie]

aw looked fine to me thanks for your advice. I use Systane and hylo night I think their preservative free x

[pennyannie]

Should be printed on the product and packaging.

The physical, psychological and emotional distress that we experience is never spoken of :

You might like to dip into Elaine Moore - she has written extensively on Graves and Graves Ophthalmopathy both in books and through her website - The Elaine Moore Graves and Auto Immune Disease Education website - elaine-moore.com

[Mrsmcl in reply to pennyannie]

thanks I will . I’m not sure what surgeon will say about surgery but the ophthalmologist feels it’s the best option as my eyesight has deteriorated and I’m getting scarring on my cornea due to extreme dryness .

[pennyannie in reply to Mrsmcl]

Please try not to worry -

The Ophthalmologist knows what s/he is doing and when the time is right, which it appears to be, decompression surgery is the next step - it's all new to you, I get it, but they have done these procedures before and this is their day job - so rest assured you are in good hands.