Full thyroidectomy

[Flower1703]

Hi everyone my consultant rang me last week to tell me that my levels have gone dangerously high again and he told me that he has put in an urgent referral for operation to remove the thyroid gland, I knew this was coming but I am really scared now but I know this needs to be done for me to feel normal again. Does anyone have any idea how long I would have to wait for an urgent referral? And had anyone had it done and were there any complications??

[SlowDragon Administrator]

Are you currently taking on Carbimazole?

You’re legally entitled to copies of your blood test results

Did you get ACTUAL results from previous tests

healthunlocked.com/thyroidu...

You need

TSH

Ft4

Ft3

Have you had TSI or Trab antibodies tested to confirm Graves’ disease

Or TPO and TG antibodies for Hashimoto’s

Essential to test vitamin D, folate, ferritin and B12 too

What vitamin supplements are you currently taking if any

Have you had coeliac blood test done yet

[SlowDragon Administrator]

Looking through all your previous posts and all replies asking you what tests you have had

You have never actually added any thyroid or vitamin results

[Flower1703 in reply to SlowDragon]

I did ask my doctors for results but they said they couldn't give them to me like I said in my previous posts.

[SlowDragon Administrator in reply to Flower1703]

That would make me extremely suspicious

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

Ring receptionist and make a subject access request for all your thyroid blood test results

They must give you printed copies of your blood test results within 3-4 days

DJR1 gave you lots of advice in earlier posts about getting your

[Flower1703 in reply to SlowDragon]

My consultant told me on the phone the other day but can't remember but I can remember him saying that either my t3 or t4 was 81

[helvella Administrator Thyroid UK in reply to Flower1703]

Agreed - write or print a subject access request.

Emphasise that your previous requests should have been treated as SARs. And that this imposes a time limit on them to comply.

[helvella Administrator Thyroid UK in reply to helvella]

This is the Information Commissioner's Office guidance on Subject Access Requests:

ico.org.uk/your-data-matter...

[SlowDragon Administrator in reply to Flower1703]

They can not refuse

You are legally entitled to copies of your results and ranges

Put In written request to the practice manager for all your blood test results since diagnosis

[Helen161]

Hi Flower1703,It took around a week for mine although I was already in hospital as I'd had a reaction to carbimazole. They let me go home for a few days and then I was back in for my thyroidectomy.

I was back home within two days but unfortunately had some problems with hypocalcemia.

Apart from that I had to be careful when swallowing food for a while but other than that I had no other complications and I healed well.

[Flower1703 in reply to Helen161]

Thanks Helen 😊 I don't think it will be long now if they've put in an urgent referral. Did u have any pain afterwards Helen x

[Helen161 in reply to Flower1703]

No not much, don't think I even took pain killers after I got home. Just drink plenty of water when you eat and choose soft foods or soup for a week or so afterwards. Good luck with you're op. Every thing will be fine 🙂

[PurpleNails Administrator]

The Doctor has diagnosed you with Graves as you said you have very high levels, but you never confirmed your results and of you have had thyroid antibodies tested.

What is your TSH, FT4, FT3, TSI or TRAB. Do not accept what doctors tell you *check the results yourself*

What dose of PTU are you currently taking, have you had adjustments? 400mg is the maximum dose. Could your dose be adjusted to improve levels.

You were due to have a CT scan. What did this reveal?

It’s had to predict how fast referrals are made. Hopefully you will have answers soon.

Many people have had an thyroidectomy but It is a major surgery your doctor must go through all the potential complications with you no matter how rare they are.

Once your thyroid is removed it is permanent & irreversible and you will become hypothyroid. Some struggle with this but doctors view hyper as life threatening and hypothyroid not dangerous and easily managed by GP.

[Flower1703]

Oh my god 🤣 I've only asked how long an urgent referral would take for operation

[PurpleNails Administrator in reply to Flower1703]

Each hospital will vary so it’s hard to predict how fast your referrals will take.

This may be of some help, a patient leaflet on thyroid surgery, the hospital may give this you or something similar

btf-thyroid.org/thyroid-sur...

Read through in advance so you think of any points you want to discuss with your doctor you make a note of it.

There’s also this

thyroiduk.org/if-you-are-hy...

[Flower1703 in reply to PurpleNails]

Thanks 😊

[nellie237 in reply to Flower1703]

Hi Flower1703,

I think that what people here are saying is:-

a) Endocrinologists can tend push for Hyperthyroid patients to either have the thyroid removed or RAI because they can then discharge you to your GP for treatment with Levothyroxine. ie Quickest option to get you off their books.

b) Many people regret having surgery/RAI and wish that they'd given it more time because they learned after they'd had the surgery that it can become stable, and remain that way for years, and they've ended up on Levo.

[Flower1703 in reply to nellie237]

I know what your saying but I aint getting on with the medication I keep forgetting to take it but my consultant did offer for me to either stay on medication, rai or surgery and that what I chose to have because I have a very enlarged goiter in my throat and in only 34 years old and its making me very ill with depression and everything I look like I've got a melon in my neck so thats why I chose surgery

[Jazzw in reply to Flower1703]

If you keep forgetting to take your medication, are you going to be ok remembering to take levothyroxine every day? You’ll get into quite a pickle if you forget to take that every day.

Have they mentioned you’ll be on medication for life once your thyroid is removed?

Forgive us for being cautious—doctors can be incredibly gung ho when it comes to removing thyroids and getting you off their case lists.

The truth is, replacement hormones can never completely replicate what a thyroid does for you. It can take a while to find the right dosage of replacement thyroid hormone and if you’re used to having lots of thyroid hormones sloshing about, the sudden removal of them may hit you rather hard.

[PurpleNails Administrator in reply to Flower1703]

I was dreadful for remembering to take my medication at first. I know I took double one day, at least once. Then getting the timings right was impossible. In the end I got a pill organiser & downloaded an app on my mobile, which reminded me which medicine to take & when.

Spreading everything out throughout the day consistently help a lot. It also helped remind me to drink plenty of water frequently, something I would also forget! The app I used gave you a pretty picture at the end of each day - if you ticked off every medication.

[Jazzw in reply to PurpleNails]

That sounds great. I definitely could have used something like that!

[SlowDragon Administrator in reply to PurpleNails]

App sounds great

Which one is it?

[PurpleNails Administrator in reply to SlowDragon]

“MyTherapy” it was free app.

I had on my smartphone which I take everywhere with me but have just checked it’s available on iPad too.

There several others to choose from. Search for “ medication tracker organiser reminder alert” find one to try.

[Flower1703 in reply to PurpleNails]

Its also the tablets I'm on propylthiouracil the after taste in your mouth is so bad it makes me feel sick

[PurpleNails Administrator in reply to Flower1703]

Extremely doubtful antibodies would have been included on an initial test. They are not routinely tested and there would usually have to be high suspicion & history of hyper levels before a specialist can order a trab or tsi.

It is possible doctors are going by the image of the thyroid CT scan? Was it an uptake scan?

If you have difficulty with the taste of pills try putting them far back on the tongue and drink a full glass of water. Using a straw might help. Brush teeth immediately after. The minty flavour will help mask any after taste.

[Flower1703 in reply to PurpleNails]

It was a ct scan with contrast if that makes any sense

[PurpleNails Administrator in reply to Flower1703]

Did you have a letter saying what contrast was used? & did you have to avoid contact for a day after the scan?

I had a radioiodine injection and thyroid scan. The district patterns determine what parts of the thyroid are functioning or not.

I have because I had hyper level but was negative for autoimmune. It revealed a autonomously function nodule.

I would obtain a copy of the report as the specialist will usually review the images later and write a summary of the findings.

[nellie237 in reply to Flower1703]

I don't know much about goitres. I definitely had one years ago when I was diagnosed hypo, but I only noticed it occasionally, so very different from yours.

I have read a lot of posts on here though, and it seems to me that everybody is different. Mine didn't seem to hang around for very long. others have posted that theirs seems to have increased in size once on medication whether they are taking Levo or anti-thyroid meds, but whether/how they resolved is uncertain as people tend to post for help, but not so much when things get better.

Lots of people who don't regularly post, do still read and help where they can. If you make a new post asking if anybody's 'melon' size goitre has resolved without surgery, you might find that you get some really good answers. or you may not. I think that it is worth asking, but you need to know if you have Hashi's or Graves. Of course if its Hashi's you'll end up on Levo at some point whatever you do, but Graves......??

My daughter is the same age as you and was diagnosed a few years ago with Hashi's like me, also without noticeable goitre, although she did go through a period of being hyper 1st. She is 5'9" and went down from her usual UK size 12 to a UK size 4- 6 at 1 point whilst eating quite unbelievable quantities of food. She also isn't very good at taking her meds, and as a consequence is now wearing size 18.

[SlowDragon Administrator in reply to nellie237]

A high number of Hashimoto’s patients start off being temporarily “hyper” as thyroid is initially under attach

…yet so many medics seem totally unaware…and just assume it’s Graves’ disease

[Flower1703 in reply to SlowDragon]

My consultant have said I've got graves disease from having my first ever blood test at my doctors and I had a ct scan

[SlowDragon Administrator in reply to Flower1703]

Have you got weekly pill dispenser and app to remind you to take your medication everyday

[SlowDragon Administrator in reply to Flower1703]

To confirm Graves’ disease you need to check they tested TSI or Trab antibodies

TSH can be low with Hashimoto’s or Graves

[Flower1703 in reply to SlowDragon]

Is this any good

Bd

[tattybogle in reply to Flower1703]

This just shows a pretty high fT4 level 71.3 [11.5 -22], but it doesn't show whether it's cause is Graves ( TRab (or TSI )antibodies continuously causing too much T3 to be produced), or a hyper functioning Nodule (also producing continuously too much T4), or a fluctuation caused by Hashimotos' hypothyroidism (damaged thyroid chucking out lots of T4 all at once that will then go down on its own as it get's used up ie. not continuous)

The only blood test to prove Graves is to test the antibodies "TRab" or "TSI"

[PurpleNails Administrator in reply to Flower1703]

Neither TSI or Trab has been tested.

I can see the FT4 of 71.3 (11.5 - 22.?). The range is cut off photo.

Yes the FT4 is extremely high which shows hyperthyroidism.

You mention a scan with contrast. This may have been a thyroid uptake scan so this can show if the entire thyroid is over functioning and the pattern distinguishes it from other conditions. Ask for copy of the scan report.

Have you heard any more from the surgical team?

Have you tried pill boxes & alarm to help you take medication on time?

[Flower1703 in reply to PurpleNails]

No haven't heard anything as yet and yes I'm finally taking my meds regularly ive put a alarm on my phone😆 I have my ct scan report if you would like me to upload that and see if you can understand it because I aint got a clue

[PurpleNails Administrator in reply to Flower1703]

Is there a summary report? Share if you can.

[Flower1703 in reply to Flower1703]

This is my ct scan report

Ct

[Flower1703 in reply to Flower1703]

Any idea what it means

[PurpleNails Administrator in reply to Flower1703]

This was a neck CT with contrast but not an uptake scan (that assesses thyroid function)

The report states previous Graves diagnosis. They are checking the goitre, size & health of the thyroid is and where it is growing.

The thyroid is uniform appearance. The tissue of the thyroid are normal, no sign of nodules or damage but very swollen. The reference about about minimum extension downwards but more swelling upwards is describing where it is most swollen. It’s pressing on your wind pipe slightly. (Stenosis) but not causing it to be moved out of line (no deviation)

The associated thymus (gland in upper chest. which produces white blood cells) has hyperplasia (means enlargement) has a known association with Graves’ disease.

Now you are taking medication consistently are you feeling any better?

[Flower1703 in reply to PurpleNails]

Thanks for explaining that to me. and no no better as yet and can't sleep and I'm constantly itching the tops of my fingers and toes it's driving me crazy

[PurpleNails Administrator in reply to Flower1703]

Insomnia very common with Graves & high thyroid levels.

Is the itching new? It could be a allergic reaction to medication. If mild you can take anti histamine.

The drowsy ones don’t affect me but I used to take at night in the hope they would help me sleep. I have allergic sinusitis.

If more troublesome be sure to mention to doctor.

[Flower1703 in reply to PurpleNails]

I had it when I was taking carbimazole but then stopped and went onto propylthiouracil the itching stopped but back like a vengeance for the last 3 weeks, I did tell my gp but he told to tell my consultant on the 14th

[PurpleNails Administrator in reply to Flower1703]

I find this sort of thing very annoying. GPs are too willing to pass everything off to specialist.

My GP tries to do this too, even with things that are clearly unrelated.

If it this itching is severe you should not have to wait for weeks until you have appointment. The GP should be dealing with issues outside of appointment if they truly can’t they should be liaising with specialist.

My GP now gets me to contact the specialist direct, usually I have to leave messages with the department secretary & once I’ve heard back from the specialist I go back to GP again.

[Batty1 in reply to Flower1703]

Wear a watch that has alarms that you set to remind you to take your medications and once you take your medications on a steady bases for a few months then consider having a thyroidectomy.

I promise you once you lose the thyroid and your labs look acceptable to the doctors they will throw you away no matter how bad you tell them you feel.

[Flower1703 in reply to Batty1]

Thankyou for your advice batty

[SlowDragon Administrator]

Absolutely agree with Jazzw and PurpleNails

If you have your thyroid removed, (which may be necessary)

After surgery you will need to be on daily medication for rest of your life ….often if need T3 as well as levothyroxine, you may need to remember 2 or 3 doses per day

If your not taking your current medication everyday this is why your levels are haywire

Get a weekly pill dispenser and an alarm/app on phone

Request GP test vitamin D, folate B12 and ferritin, if not been tested yet

Extremely common to have low vitamin levels with Graves’ disease

[Flower1703 in reply to SlowDragon]

I am taking vitamin d and folic acid also

[SlowDragon Administrator in reply to Flower1703]

On prescription?

How much vitamin D?

How long on folate acid?