thyroidectomy

[Marleys_Ma]

I’m new here and just wondered has anyone else had a thyroidectomy and still feel rubbish?

[SlowDragon Administrator]

Welcome to the forum

Yes, it can be tricky getting right levels of replacement thyroid hormones and all vitamins at good levels

Please add most recent results and ranges if you have them

How much levothyroxine are you currently taking

How long on this dose

Do you always get same brand levothyroxine at each prescription

Are you taking levothyroxine in morning or at bedtime

Always on empty stomach and then nothing apart from water for at least an hour after

No other medications or supplements within 2 hours

Some like calcium, iron, magnesium, vitamin D, PPI or HRT at least 4 hours away

ALWAYS test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Important to test vitamin D,folate, ferritin and B12 at least annually. More frequently if they need improvement

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

[Marleys_Ma in reply to SlowDragon]

thank you for your speedy and informative reply, I feel I don’t have anyone to talk to about this that understands.

I had my most recent bloods done at the hospital last Saturday but don’t have a copy of them. Nurse rang me on Monday and advised that my levels were ok and to continue taking 125mcg of levothyroxine. I have been on this dose for two months and previous to this I was on 100mcg since my operation in February.

I take my levothyroxine at about 6am each morning and take my other medications approximately two hours later.

Good question on if it’s the same brand everytime, I’m not sure and didn’t think to check that! I’ve so much to learn.

[SlowDragon Administrator in reply to Marleys_Ma]

so first step is to find out

A) what’s been tested

B) what results and ranges are

C) test anything not tested recently

D) find out what brand levothyroxine you are currently taking, Many people find different brands are not interchangeable

You say your other medications…..2 hours later

What else are you currently taking/prescribed ?

Meanwhile suggest you read posts here regularly

You will soon learn, your very definitely, not alone

But you must also remember, many people do very well and you probably won’t find them hanging around a thyroid forum

[Marleys_Ma in reply to SlowDragon]

I will call doctors on Monday and get print out of my most recent bloods.

The 100mcg tablet is aristo and 25mcg tablet is wockhardt.

My other medications are fluoxetine, folic acid and omeprazole.

I will definitely keep following all the posts as I’d like to learn how to live comfortably with this.

Thanks again for all your advice 😊

[SlowDragon Administrator in reply to Marleys_Ma]

Omeprazole is a PPI to lower stomach acid

Any PPI should be at least 4 hours away from levothyroxine

Many hypothyroid patients already have LOW stomach acid

PPI tend to lower vitamin levels

How long have you been taking a PPI

Obviously folate levels are low if already prescribed folic acid

Thousands of posts on here about low stomach acid 

healthunlocked.com/search/p...

But never assume you have low stomach acid 

healthygut.com/4-common-bet...

Web links re low stomach acid and reflux and hypothyroidism 

nutritionjersey.com/high-or...

stopthethyroidmadness.com/s...

thyroidpharmacist.com/artic...

 How to test your stomach acid levels 

healthygut.com/articles/3-t...

meraki-nutrition.co.uk/indi...

huffingtonpost.co.uk/laura-...

lispine.com/blog/10-telling...

Ppi 

Omeprazole will lower vitamin levels

low magnesium

gov.uk/drug-safety-update/p...

low B12

webmd.com/heartburn-gerd/ne...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes 

gut.bmj.com/content/early/2...

Iron Deficiency and PPI 

medpagetoday.com/resource-c...

futurity.org/anemia-proton-...

onlinelibrary.wiley.com/doi...

sciencedirect.com/science/a...

[SlowDragon Administrator in reply to Marleys_Ma]

Aristo is lactose free

Are you lactose intolerant?

If not ….It might be better to try different brand

[Boltie]

I have my thyroidectomy done over 7 yrs ago. On 175mg daily, for the first 6 months I was very poorly.

I has series of blood test done and they discovered I have another underlining condition. My condition have improved and I am on another medication for my Lupus.

If you are still poorly, I would advise you to contact your GP and ask for blood test for any other conditions.

First of all, you need to know the level of the inflammation in your body that should indicate the type of blood test needed.

[pennyannie]

Hello Marleys_Ma and welcome to the forum :

and the answer is Yes - and you are in the right place to off load, learn and get yourself back on track to better thyroid health.

A fully functioning working thyroid would be supporting you daily with trace elements of T.T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg with T3 said to be about 4 times more powerful than T4.

Synthetic T4 - Levothyroxine is a storage hormone which your body needs to be able to convert to T3 which is the active hormone which runs all your bodily functions from your physical, through to your mental, emotional, psychological and spiritual well-being, your inner central heating system and your metabolism.

Your own ability to convert the T4 into T3 can be compromised by non-optimal levels of ferritin, folate, B12 and vitamin D, inflammation, antibodies, and depression, dieting, ageing and any physiological stress - either emotional or physical - can also down regulate your T4 into T3 conversion.

Some people can get by on T4 - Levothyroxine only :

Some people need a little T3 - added into the mix to replicate that little bit lost by having lost their own natural T3 thyroid hormone production.

Some people can't tolerate T4 and need to take T3 - Liothyronine 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 into tablets referred to as grains and the original treatment for hypothyroidism and used successfully for over 100 years.

There is a lot to understand and first and foremost we do need to see some blood test results so to advise on your next best steps back to better health.

If you dip into Thyroid UK - the charity who support this amazing patient to patient forum - you can read around all things ' thyroid ' and where you will also find a page of private companies who can run the appropriate full thyroid blood tests for you, some even offer a nurse home visit to draw your blood, which can take some of the stress off yourself.

When you have back the results simply start a new post detailing the results and ranges and you will be talked through what they all mean and what your next best steps back to better health and where we all start off.

thyroiduk.org

[Brightness14]

Hi I had a thyroidectomy back in 2015 it did take several months to feel well again. I was started on 100mcg Levo then 112.5 Levo I did put on 10 lbs in weight. I then joined this site and started myself on NDT. There is a lot to learn it does take time but you can feel well again. Mostly having a full thyroid blood tests plus vitamins and minerals.

[Batty1]

Im also Thyroid-less (cancer) and its a very long and lonely road. You should get a copy of your blood test results and post them here and have you asked endo for T3? I couldn’t get on with just T4 meds I was a mental mess with severe mood swings and the weight gain has been horrible I can eat just air and gain weight which is starting to level out a bit (took 6 years).

[Marleys_Ma in reply to Batty1]

Thanks for the reply, sorry to hear you’ve had issues as well. I’ll get a copy on Monday and post them up. Honestly I didn’t know to ask about the T3, I understand the mood swings, they can be awful! I just feel for my family who have to put up with it 😢

[Batty1 in reply to Marleys_Ma]

Look up and read about T3 medication without a thyroid its best to be on both T4 and T3 some people can survive on T4 only after thyroidectomy but I bet that number is very small.

I had extreme mood swings after I was put on T4 only. My moods would switch on a dime and my poor mother was terrified of me when my moods would spiral out of control…. Normally Im easy going.

[shaws Administrator in reply to Marleys_Ma]

I have taken T3 alone for some years now but have never, ever had mood swings. I feel well and symptom free on T3 only.

When first diagnosed and given levothyroxine, I developed awful palpitations and cardiologist was considering putting an implant in my heart 'to see what was going on'. Just then T3 was added to a reduced T4 and I immediately felt better and I eventually stopped T4 and am now prescribed T3 alone.

[LAHs]

Just my personal experience here:

The practice here in California (by enlightened Endos) is to put the post thyroidectomy patient on T3 only for about three months. While I was not impressed with my endocrinologist she did, at least, get that one right. I felt wonderful for three months. She then told me, "You are doing very well, it's time to start you on the really good stuff." And from that day onwards for about two years I experienced all of the horror stories one reads about. The "Good stuff" she referred to was levothyroxine. Getting all of the variables, T3, T4, and TSH into her ranges was/is an impossibility and low TSH was not allowed! I struggled for two years, read a lot, and joined this forum where I learned about NDT. I am now normal and healthy on an NDT called Armour. Sadly each individual has to fight this battle to satisfy their own requirements with the help of this forum, keep reading, experimenting and follow your levels via private blood tests. I doubt your Endo will be of much use, it is a hard realisation when it becomes obvious that your doctor doesn't have all the answers - but they don't.

Oh, and in case you are thinking that all is well on this topic in California, it is not. We have the same proportion of uneducated endocrinologists as any where else in the world. I was lucky and absolutely desperate to get myself back into normal operations. I went completely manic on the topic for about three years - but did get there eventually.

[shaws Administrator in reply to LAHs]

I am glad you were able to recover your health and it is wonderful to feel well again.

When I was given levothyroxine (T4) when first diagnosed I had an awful time but was fortunate, eventually, to be prescribed Liothyronine (T3) and it resolved my problems. Some people find it helps but some others don't and many doctors would only prescribe levothyroxine as liothyronine was more expensive.

We used to have an alternative but it has been withdrawn by the NHS, i.e. NDTs - (natural dessicated thyroid hormones from animals' thyroid glands) even though it saved lives from 1892 onwards.

We did not have blood tests in 1892 but doctors seemed to be knowledgeable about clinical symptoms and how best to diagnose and resolve our them due to NDTs alone.

[Kapuna in reply to shaws]

Greetings from Hawaii! Endocrinologists seem to be lockstep about the TSH. I did find one who put me on both levothyroxine and liothyronine and if my current docs would leave me alone I’d be happy. Thyroid problems run in my family. My grandfather, mother, daughter, and I have lived with problematic thyroids. I did a DNA test for genealogy and found a potential problem area. But the medical community here is not into genetic testing.

My biggest problem deals with what my mother went through. At about my age (79) her doctor told her she was hyperthyroid (based on her TSH) and cut back her meds. She became hypothyroid and was miserable and depressed, What scares me the most is that she died of interstitial lung disease that was likely caused by hardening of the arteries, which hypothyroidism can exacerbate.

[shaws Administrator in reply to Kapuna]

I'm sorry about your Mother and we don't expect doctors to make mistakes that causes an early demise but it does happen.

My Mother had a similar problem and her GP's decision to withdraw her B12 injections (she had pernicous anaemia) - caused stomach cancer.

Mother had regular B12 injections until GP told her she needed no more. Both my sister and myself thought that was 'good' but the GP was wrong.