Thyroid testing post partial thyroidectomy

[Bs9rab]

Hello All, I had a partial (just over half) thyroidectomy on June 1st 2018. I had stage 1 papillary carcinoma on my right lobe. I currently have a colloid (benign) nodule on my left remaining lobe. My ENT surgeon is not interested in thyroid function testing until I show symptoms of hypothyroidism, which I am not happy about. I am currently 8 weeks 3 days post op and awaiting a GP appointment to request blood tests. I will ask for TSH, FT4, TT4, FT3, vitD, folate, ferritin and B12. Is this correct and is there anything else I should request please? Thank you very much for reading this post. I appreciate any advice that can be offered.

[SlowDragon Administrator]

Definitely ask for all these, but sadly unlikely that they will do them all.

But Ask GP. Often lab refuses even when GP requests

private testing is available for any that aren't done

All thyroid tests should be done as early as possible in morning and fasting . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

[Bs9rab in reply to SlowDragon]

Thank you very much. Do I need antibodies testing if I have had them done previously (normal range) and my surgery was due to thyroid cancer not autoimmune disease please?

[Bs9rab in reply to Bs9rab]

I paid privately to have these tests done prior to surgery. How long since the first ones were done should I have them repeated do you think please? (Talking about vitD etc please).

[SlowDragon Administrator in reply to Bs9rab]

So how long ago were these tested.

What were the actual results and ranges and what supplements are you taking?

Vitamin D, folate, ferritin and B12 all need to be optimal

[Bs9rab in reply to SlowDragon]

Thank you I will check when exactly it was. May I think.

[SlowDragon Administrator in reply to Bs9rab]

Vitamin D should be at least 80nmol but 100nmol likely better

Folate and B12 need to be towards top of range

Ferritin at least half way in range

[Bs9rab in reply to SlowDragon]

Thank you. I edited and it seems to have made a new post.

[Bs9rab in reply to SlowDragon]

17th May. Will try and attach results

[SlowDragon Administrator in reply to Bs9rab]

You can edit post to add one photo

[Bs9rab in reply to SlowDragon]

Thank you. Was struggling with that.

[Bs9rab in reply to SlowDragon]

Supplements: raw b complex, Rosita Cod liver oil, liquid B-12.

[SlowDragon Administrator in reply to Bs9rab]

You don't need antibodies testing but it comes as part of the thyroid bundle of tests

[Bs9rab in reply to SlowDragon]

Thanks

[Kell-E]

With thyroid cancer the standard treatment is usually to give thyroid meds until TSH is suppressed so that any remaining cancer cells are not stimulated to grow. Your ENT sounds incompetent.

[Bs9rab in reply to Kell-E]

It was stage one, fully encapsulated with no vascular involvement. I am considered ‘cured’ so I wonder if this is why?

[Kell-E in reply to Bs9rab]

If it was less than 1cm then the British guidelines only recommend lobectomy. In the US they want a TT and RAI and suppressed TSH. Probably overkill. But the not checking your levels until you present as hypothyroid...that's just nuts!

[Bs9rab in reply to Kell-E]

It was 18mm

[Kell-E in reply to Bs9rab]

So, your tumor was almost 2cm...

Here are the official guidlines:

onlinelibrary.wiley.com/doi...

For TSH suppression recommendations see page 50.

For no recommendation of RRA from page 38:

ALL CRITERIA BELOW SHOULD BE MET

• Tumour <1cm unifocal or multifocal

• Histology classical papillary or follicular variant of papillary

carcinoma, or follicular carcinoma

• Minimally invasive without angioinvasion

• No invasion of thyroid capsule (extra thyroidal extension)

[Kell-E in reply to Bs9rab]

Even the no RRA group still needs TSH in the low range, which is going to be difficult if it isn't monitored!

From the guidelines for papillary thyroid cancer page 50:

Patients who have not received radioiodine remnant ablation

(RRA) because they fall in the ‘no indication for RRA’ group

(Chapter 9.1), do not require TSH suppression and the serum

TSH should be maintained in the low-normal range between

0.3 and 2.0 mU/l (4, D)

[Bs9rab in reply to Kell-E]

Thank you very much. Will have a look. The consultant said my TSH needed to be below 2, but also said I didn’t need monitoring - which didn’t make sense. I’m starting to feel like I need to see another consultant.

[Kell-E in reply to Bs9rab]

Well, not to freak you out, but that should give you some leverage to get testing and some thyroid hormone supplementation! Yeah, I think you are right about seeing another consultant.

[Bs9rab in reply to Kell-E]

Looking at the info for my condition, it would appear that the there is no conclusive evidence for or against RRA in my case. I understand why the MDT made the decisions they did. However, I still think my dr hasn’t given me the info I require going forward (nor did he when I was going through the diagnosis etc). Thank you very much for your help.

[Kell-E in reply to Bs9rab]

You are right. The chart is a bit convoluted, and you don't fall into the yes, no, or maybe categories But the not testing your levels is completely illogical. On several fronts.

[Bs9rab in reply to Kell-E]

Yes, I feel that way too. I was told only 15% of people require levo after a hemithyroidectomy, therefore it wasn’t necessary to do as I’d most likely be ok. I’ve already noticed changes though and I feel even without changes it is negligent not to monitor.

[Pascha1 in reply to Kell-E]

I am not so sure they can supress the TSH if you still have T4 naturally converting, thats something she would need to ask The Endo about..

[Kell-E in reply to Pascha1]

Sorry, I don't follow....why do you say that?

[Pascha1]

I think you will have to be strong and demand TSH T4 T3 testing as I was left for 20 years after only with a TSH test and that was showing signs it was struggling, They never once took into consideration my symptoms and was left quite unwell for years and when i did get treated I was left for a further 14 yrs with a Tsh of 4.5 which is too high when on Levo,, If you feel symptomatic at anytime ask for a full thyroid panal to be done and get blood results post on here and many will help you on them'

Do not trust you GP as they in my case have proved to be useless, ..

If you are still with The Endo Get the Endo to put it in writing at what level will they treat you if you go Hypo and symptoms to look out for , and ask him to answer within 14 days of getting letter for him to reply with all this info before he lets you back into care GP who may be clueless like many on the thyroid

I was not told of symptoms to look out for and no internet back then,, but I think after destroying part of your thyroid they should have the decency to tell you what to look out for !

I would hate for anyone to struggle as i have after sub Thyroidectomy

you will go probably go Hypo thyroid later on in Life, Im not sure how much you have had taken out, it was 20 years before i got treated but i look back and was definitly hypo not long after surgery.....

Their is very little anywhere to read on part or sub thyroidectomys, I cant find anything at all about treatment after

So insist your Endo puts it in writing so if you get put in care of GP a letter confirming what should be tested from Endo could make sure they test thyroid properly TSH T4 at least and T3 if he can put that , you are living with a bit of Thyroid missing so it is the least they can do,, I think they will test you yearly once stabilised after op..

By getting all this in place you will not be left to struggle as I did

you get full Thyroid panal done else like me you will only get TSH tested which is wrong and your symptoms ignored

Learn everything you can about thyroid disease and you can be in control of it all then an arm yourself with as much info as you can..

Good luck for good health in the future x

[Pascha1]

You are entitled to a second opinion to any consultany Endo of your choice if you are in England,, Scotland Wales or N ireland

[Bs9rab]

Thank you Pascha1 for all this info. I don't have an endo and despite feeling very unwell, my ENT has just sent a letter to my GP telling him *not* to prescribe Levo as I am still within reference range.