Post thyroidectomy

[Mrsmcl]

Hi I had a TT for Graves/Hashis 4 weeks today . I attended a follow up last week with ENT as my scar was still very swollen and had fluid whilst there they took bloods to check my thyroid level . I got a call from them the next day to say I was to reduce my thyroxine from 150mcg to 125 mcg as my T4 was too high and TSH was not detectable . I do not know levels I’m afraid . Over the weekend I have had regular heart flutters/ palpitations. Sweating and can’t sleep I feel quite rubbish . I was on no thyroxine prior to surgery it had been stopped and I was placed on carbimazole a year which I took prior to surgery. My question is is it normal for your bloods to spike too high only 3 weeks after going back on thyroxine I would of thought I would be more in the hypo range as thyroid removed? How long will it take for the reduction to help relieve these symptoms do you think ? Sorry again lots of questions but any advice would be great. I’m worried it flares up my TED if it takes to long to get under control xx

[SlowDragon Administrator]

Which brand of levothyroxine are you currently taking

Have you had same brand since thyroidectomy

Do you take levothyroxine waking or bedtime

ALWAYS Test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Is this how you did most recent thyroid test

What were vitamin levels BEFORE thyroidectomy

What vitamin supplements are you currently taking

On levothyroxine we must have good vitamin levels

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

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

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

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Frequently necessary to test privately

As you have Graves and Hashimoto’s are you on absolutely strictly gluten free diet

If not, get coeliac blood test done BEFORE trialing strictly gluten free diet

[Mrsmcl in reply to SlowDragon]

Thanks for your reply . I am on accord brand of thyroxine been on this since TT I was faster prior to my bloods as I suspected they would take some I had taken my last dose more than 24 hours previous the hospital dr said my bone profile was in normal range no other checks were done .

The Gp reception said any bloods taken while at the hospital results go to hospital doctor not them ( I’m in Scotland) so would need to see if I could speak to his secretary for print out?

I don’t know what I was checked for vitamins last think possibly may but I will arrange private ones and coeliac test as advised .

[pennyannie]

Hey there again ;

Without knowing the results and ranges of this blood test it's impossible to say anything of any importance.

It is essential that you are dosed and monitored on your T3 and T4 blood test results and not your TSH :

Your HPT axis - your Hypothalamus/ Pituitary/ Thyroid feedbck loop doesn't work now and your feedback loop broken - as you have lost the " T " being your thyroid.

You are legally entitled to copies of all your blood test results, and access to all your medical records so I think that 's especially important in this period of your recovery, and, as mentioned to you before, we also need to see current levels of ferritin, folate, B12 and vitamin D.

It is still early days from your surgery but it's best to start to get copies of all blood test results so to monitor your dose alongside with your symptoms.

[Mrsmcl in reply to pennyannie]

Thanks for reply as I’ve said in last post I will try chase up my results but I am also thinking of asking my gps for all my hospital letters results etc back to 2007 when first diagnosed just to get an idea of what was happening with me at that time as I never fully understood it except I felt rubbish plus might help my recovery . I expect recent letters would show results on them also.

I will organise private tests for vitamins and coeliac the only thing I take is selenium. X

[pennyannie in reply to Mrsmcl]

Ok then - I look foward to further posts ;

There is the Thyroid Eye Disease charitable trust and I believe they can offer help and can signpost you to specialist TED outpost clinics throughout the country where your condition will be fully understood and managed.

The clinics liaise with the medical professionals dealing wth your thyroid hormone replacement as I think there is a definitive link between the eyes and one's level of T3 and T4 and dose of T4 - Levothyroxine.

So if you don't already know of this TED charity it's definately worth dipping into their website for additional help and information.

You might also find the Elaine Moore Graves Disease Foundation website of interest and Elaine has written one book solely on Graves Ophthalamopathy - though have to say I found Elaine's books a bit too technical for me to understand, and I think her website slightly easier on my brain fogged brain and mind.

[Mrsmcl in reply to pennyannie]

Thanks for the reply I will look into the websites you have suggested.

[tattybogle]

as i understand it .. it's not the high T4 that flares up TED, it's the graves antibodies. Having too high a dose of Levo (T4) doesn't (i don't think ) affect what the graves antibodies are doing ,one way or another.

So assuming your fT4 was over range solely due to dose being a bit high , and you have no thyroid left at all? to produce any of your own , then the level of T4 in your blood will come down gradually over about a week/two.

T4 in blood has a 'half life' of about 7 days. After about 7 days half of it is gone, after another 7 days half of that remaining half is gone, and so on. But it actually goes down quicker than that , because of course you've also used some up , and you've also excreted some.

If you'd wanted to get down to the level from 150 to 125 quicker than that , you could for example leave off a days dose and then start the next day on 125 .. I'm not suggesting you do, especially if you have already been taking the lower dose of 125 for a few day's. .. i'm just explaining the theory of it.

It will help if you find out your actual results [and ranges].. then you can see how over range your fT4 was on 150mcg .. your TSH won't tell you anything useful at the moment as it may stay very low for quite a long while after being hyper.

[Mrsmcl in reply to tattybogle]

Thanks for your reply and explaining it to me. The docs as much as they have been great with any issues like my wound just say take this stop that reduce this etc and on your way. Maybe I have been silly not to be more aware of the conditions I had and how best to treat them..... maybe too late now I have no thyroid! I will chase up actual results with endocrine they are calling me next week it was ENT that reduced the medication after taking the bloods last week. Thank you again

[san_ray70]

Pardon my ignorance but I thought they did not do this op. any more. I hope you feel better soon, I am on 125mg levo. but I do not have any symptoms. I was told by my doctor 16 yrs. ago I need to take these. Normally I do not take tablets, but I was told I would feel very ill without. My sister was diagnosed just after me, she refused to take levo. and spent a year feeling ill. Finally she decided to go back to her doctor, she now feels a lot better.

[Mrsmcl in reply to san_ray70]

Sorry do you mean they don’t do thyroidectomy any more? This surgery is still done for certain thyroid issues . Yes you need to continue the medication or you could potentially go hypothyroid which would make you feel unwell and other symptoms .

I am glad you are well and symptom free and your sister is keeping well .

Thanks for your well wishes x