Partial thyroidectomy surgery : Hi I have had a... - Thyroid UK

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Partial thyroidectomy surgery

Tjl90
Tjl90

Hi I have had a thyroid nodule for 5 years I had all thyroid tests and ultrasound and they came back normal. I had no other symptoms until it started to grow last year causing it to press on my windpipe you could see it sticking out of my neck..I was sent for another ultrasound and they said it was double the size and that I would be having surgery I go in next month to have a partial thyroidectomy....My thyroid function is still normal but I now have pernicious anemia I am not sure if the symptoms I am havin is linked to my thyroid or PA or both? are they linked? My doctor is not very good at explaining things.....my main symptoms have been tiredness, muscle weakness, pain in my hands and arms ( I’m a nail technician not helpful 🙈) restless legs, palpitations, pain and itching in my ears ( I know weird 🙄)

47 Replies
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shaws
shawsAdministrator

I believe P.A. and Hypothyroidism are not linked but both are autoimmune diseases and if we get one, we can develop others.

At present I have four.

Tjl90
Tjl90 in reply to shaws

I’m sorry to hear that....I don’t know weather I’m just being paranoid every symptom I have I link to my thyroid because of the size of the nodule. Xxx

Saying your thyroid tests are 'normal' is pretty meaningless. Do you have the actual numbers: results and ranges? 'Normal' just means 'in-range', but the ranges are too wide. So, it's where in the range the results fall that counts.

Most importantly, have you had your thyroid antibodies tested? That will tell you if you have the autoimmune version of hypothyroidism: Hashimoto's thyroiditis - aka Autoimmune Thyroiditis. If you have PA, then you probably do have Hashi's.

So, if you haven't got your results, I would advise you to get them. You need to know exactly what was tested, and exactly what the results were. :)

Tjl90
Tjl90 in reply to greygoose

Thank u I will request a copy Iv not seen the numbers myself the doctor just said normal each time iv had them. Xx

greygoose
greygoose in reply to Tjl90

Yes, it's a good idea to get into the habit of requesting a print-out every time you have a blood test. And keep your own records, noting what you're taking at the time, and how you feel. :)

shaws
shawsAdministrator in reply to Tjl90

Do you follow this method when having a blood test for your thyroid hormones:-

1. The earliest blood draw.

2. Fasting.

3. Allow a gap of 24 hours between last dose of hormones and test and take afterwards.

4, Always get a copy of your results and make sure the ranges are stated.

Tjl90
Tjl90 in reply to shaws

No I havnt done those steps previously as I only just started to research I’m abit anxious so I didn’t want to stress myself out reading too much into it. I’m going in for my pre-op on Thursday I’m unsure if they take bloods then but my appointment is in the afternoon would u recommend still fasting until my appointment? Xx

shaws
shawsAdministrator in reply to Tjl90

Don't worry and go ahead and get your pre-op and if they do take bloods also don't worry.

At least you know in future how to get the best results from your blood tests.

The TSH varies throughout the day, i.e. highest early a.m. etc. and lowers during the day. Always get a print-out for your own records. It seems to be the only 'number' the doctors look at i.e. TSH. It is from the pituitary gland not the thyroid gland and it rises as it tries to 'flag up more hormones' when we're struggling.

Our vitamins/minerals also have to be optimal.

Tjl90
Tjl90 in reply to shaws

Thank you for all your advice I will ensure to follow those steps when having my next thyroid test 😊 can I just ask if my vitamin levels are low will that affect my thyroid function results xxx

shaws
shawsAdministrator in reply to Tjl90

I believe that low vitamins/minerals can affect us. B12 and Vit D, in particular are pro-hormones rather than vitamins and have important functions in the body. Low B12 could mean someone has a deficiency or another Autoimmune Disease, i.e. Pernicious Anaemia so it's important we know everything is optimum.

Tjl90
Tjl90 in reply to greygoose

I have my results and it doesn’t look like a full thyroid test has been done at all I really don’t understand it so if anyone could help me out I’d really appriciate it

March

Serum Tsh level 1.23mu/L [0.3-4.5]

Serum amylase. 49 u/L [<100.0]

Serum c reactive pristine -less then 5mg

Serum thyroid peroxidase antibody

14ku/L [<34.0]

November

Serum tsh level 1.53mu/L [0.3-4.5]

B12 folate 111pmol/L [145.0-569.0]

Serum folate 4.0ugl [3.9-26.8]

Sodium ferritin level 8ug/L

I hope this is right if I need to correct anything or I’m missing anything let me know xxxxx

greygoose
greygoose in reply to Tjl90

In March they only tested your TSH and antibodies. Totally inadequate. Your TSH wasn't too bad, but that doesn't tell you very much. You need the FT4 and FT3. And, one negative antibody test does not prove that you do not have Hashi's.

In November, your B12 was below range. Which one would expect as you have PA. So, I imagine you're having B12 injections? Are you also taking a B complex daily? If not, you should. Your folate is only just in-range, so you need a B complex with methylfolate to bring it up.

Your ferritin is practically non-existant! What is your doctor doing about that?

Tjl90
Tjl90 in reply to greygoose

He said that my iron was really low is that ferritin? I have just received my first 5 b12 injections and I am taking iron tablets he said nothing else about it. Will this affect my surgery? I am not currently taking b complex but I will certainly give it a try thank you so much for your help xxx

greygoose
greygoose in reply to Tjl90

Sort of. Ferritin is a protein that stores iron. So, you need to have good stores that your body can dip into when it needs to. Did he do a full iron panel? If not, insist on having that to find out if you're actually anemic. I don't know if it will in any way affect your surgery, you'll have to ask him.

You need to take the B complex because all the Bs work together and should be kept balanced. Just taking one b vit probably won't work very well. Also, you do need to increase your folate, which is also a B vit.

Tjl90
Tjl90 in reply to greygoose

The more I think about this the more confused I am 😫 tell me if I’m overthinking this but should I not at least have t3 and t4 test done before they remove it? They have only ever done an ultrasound and tsh which I always thought they did a full thyroid function test,.. Is this normal?

greygoose
greygoose in reply to Tjl90

They most certainly should do FT4 and FT3 to get a base-line, but that would have no effect on the need for surgery. There's nothing that can be done to reduce the nodule, and if it's pressing on your wind pipe and affecting breathing and swallowing, then it has to go. But, if I were you, I would insist that you want full thyroid testing first.

Tjl90
Tjl90 in reply to greygoose

Ok great thank u so much for all your help I really do appriciate everyone taking time to comment with my many questions I will mention to my doctor on Thursday about having these done before my op xxxxx

greygoose
greygoose in reply to Tjl90

You're welcome. :)

SlowDragon
SlowDragonAdministrator

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.

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.

Most likely GP has only tested TSH which is completely inadequate

As you have PA it’s more likely to have other autoimmune disease,so essential to test thyroid antibodies and vitamins

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

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Get copies of recent test results.....see exactly what has been tested and equally important what hasn’t been tested yet

Ask GP to test vitamin levels and antibodies if not been done

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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...

For thyroid including antibodies and vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Tjl90
Tjl90 in reply to SlowDragon

Hi thank you so much for all that useful information I will do as u say and keep copy’s of all my results to monitor myself I am going to collect my blood results today so I will post all that information later..... when I had full bloods and what the doctor said is a full thyroid function test ( I have no idea what that means) he did say my vitamin d was low but that i could manage myself with vitamins but I had to have the b12 injections. I have also been having stomach problems ( bloating, nausea, grumbling and that empty feeling which has only come on more recently. Should I go back to my go about this? I feel like he thinks I’m a hypochondriac and really hate going xxx

Hi thank you so much for all that useful information I will do as u say and keep copy’s of all my results to monitor myself I am going to collect my blood results today so I will post all that information later..... when I had full bloods and what the doctor said is a full thyroid function test ( I have no idea what that means) he did say my vitamin d was low but that i could manage myself with vitamins but I had to have the b12 injections. I have also been having stomach problems ( bloating, nausea, grumbling and that empty feeling which has only come on more recently. Should I go back to my go about this? I feel like he thinks I’m a hypochondriac and really hate going xxx

Marz
Marz in reply to Tjl90

SlowDragon will not have seen your Reply as you inadvertently replied to yourself 🤔

Tjl90
Tjl90 in reply to Marz

Sorry brand new here will sort it thanks 😊 x

Marz
Marz in reply to Tjl90

I have tagged her so no need to do anything ! No worries we were all new once !

Hi there. I m having same symptoms like you plus I have burning sensation in my palms and soles. Could you please tell me how they found out you have PA? I mean which test can be done to know this?

I had subtotal TT in 2013 Due to multinodular goiter.

Now my doc asking to go for endoscopy for bloating/ grumbling stomach.

Have lost weight and no appetite.

Please let me know your B12 levels

Thanks

Hi I had a full blood count which showed low b12, low iron and vitamin d I believe PA is when the body does not absorb vitamins correctly b12 comes from animal sources foods and I eat quite a lot of meat so I knew it wasn’t my diet. The tummy issues I think are maybe an intolerance caused by PA after reaseraching more into it. I am waiting for my go receptionist to call me back to collect or email over my results today xx

Marz
Marz in reply to Tjl90

PA is auto-immune and Intrinsic Factor and Parietal cell anti-bodies are present. Sadly test are often negative even when PA is present.

SlowDragon
SlowDragonAdministrator in reply to Tjl90

Low B12 isn’t always due to PA

EXTREMELY common to have low B12, folate, ferritin and vitamin D due to being hypothyroid, especially if cause is autoimmune thyroid disease also known as hashimoto’s, diagnosed by high thyroid antibodies

As you have low B12, low vitamin D .....you also need folate and ferritin and iron tested

Gut issues are common with hashimoto’s.....bloating, IBS etc

Often improves on strictly gluten free diet

Getting thyroid levels optimal too

ALWAYS get actual results and ranges on every test

Frequently GP will only test TSH, this is completely inadequate

Tjl90, after the partial thyroidectomy you will almost certainly need to take thyroid hormone, and you may need to fight with doctors to get it. It is well worth starting to learn about thyroid blood tests, how to evaluate your levels and how to dose thyroid hormone straight away.

Becoming hypothyroid by an operation is quite a serious condition to be going into. Although doctors will very much under play it and tell you life will continue exactly as before. It's likely you'll be quite a bit more tired and have a lower capacity afterwards, even if you're one of the lucky ones and get on smoothly with hormone.

Hi there. Agreed fully. I had no symptoms and by chance doc asked me to have a scan ,result came in multinodular goiter multiple fnas done results inconclusive or benign. Consult 3 docs got advice to remove. feel not a good advice.

For docs it's a routine and take it casually but for patients its life changing decision.

Hockeyman, did you end up having the operation? Really sad story :( Mine was for cancer, and if I knew then what I know now I'd probably still have tried to hang onto it at least for a few years. It's heartbreaking when people have the thyroid removed for very little reason and then are very sick afterwards.

Tjl90
Tjl90 in reply to SilverAvocado

If it wasn’t choking me i wouldn’t having it removed... I think it’s quite worrying that it has been in my throat 5 years with no issues then all of a sudden it grows and I have a list of other symptoms I’m not saying it will be easy I respect everyone’s opinions on this as I really don’tNo what I’m getting myself into but the thought of that nodule turning cancerous terrifies me.

SilverAvocado
SilverAvocado in reply to Tjl90

In terms of danger of cancer, it's quite low. Benign thyroid nodules are very common, and thyroid cancer is pretty rare.

Nodules are often associated with autoimmune hypothyroidism, which again is a very common illness. Your symptoms are very likely caused by being hypothyroid. Thyroid cancer is said not to really cause hypo symptoms.

I agree that pushing on the wind pipe can be a good reason to have the op, but it's important to have some knowledge about it and know what to expect before you go in. Doctors can be hugely unsympathetic to the illness afterwards.

Unfortunately I did listen to doc and now hypo and dependent on levo for life.

I feel I was not well informed and like you said all docs underplayed my concern.for them it's a minor thing. Later I realised I could have partial TT instead of total.

I am not against them but the way info should be passed to patient is very important to have a right choice.

SlowDragon
SlowDragonAdministrator in reply to Hockeyman

If patients have to have TT they should be guaranteed prescription for T3 if just levothyroxine proves insufficient

Current UK treatment is scandalous.....Being told by endocrinologists to buy an essential daily medication over the internet without a prescription is unacceptable

Nodules can be affected by hormone imbalances and oestrogen plays a part in auto-immune conditions, which are often familial so you may find you have family members with these or other AIs. Datis Kharrazian does say that PA frequently follows Hashimoto's but in my family it has also been seen the other way around. I had a partial thyroidectomy for a benign nodule 8 years ago and my results are still 'normal' so no treatment although lots of symptoms. 2 useful books when you feel up to it are Why Do I Still have Thyroid Symptoms (Datis K.) and Martyn Hooper's What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency. Your symptoms could be either, but getting vitamins and minerals optimal may help too as well as considering going gluten free (after testing for Coeliac). Best wishes with the operation.

Tjl90
Tjl90 in reply to bookish

Thank u so much I’m so glad ur levels are normal after surgery that is really reassuring although it is a nightmare trying to get a diagnosis when u know there is something not quite right I hope u get it all sorted and feel better soon xxx

SilverAvocado
SilverAvocado in reply to Tjl90

I believe Bookish put the word normal in quotation marks partly to indicate that you can still experience symptoms and be quite ill when blood test results appear to be normal (or are interpreted as normal by ignorant doctors).

I did indeed! Best wishes

bookish
bookish in reply to Tjl90

Thanks for the good wishes. I'm afraid I did mean that I feel far from normal - the more you can find out to help yourself the better. Personally, now, I wish I had known more before the operation, but I can't say whether or not I still would have had it. Like you, I had increasing discomfort from the nodule, swallowing, sleeping etc and my father was struggling with the same thing so we had the ops within a few weeks of each other. He seems fine and I'm not, but I too have other auto-immune conditions to complicate the picture. Losing gluten, dairy etc from my diet has helped me a lot. Cheers

I had the same problem about 22 years ago. Then 8 years later the other half started growing from left to right. But my then doctor kept on asking me if all right with my husband. My answer I came because I'm finding it difficult to breathe and eat. But he dismissed what I was saying. . So I wrote to the thyroid foundation. They sent me a letter to give to my doctor. He then send me to hospital. There I had a scan. Three days later the left hand thyroid was removed. The doctor said it was the biggest he had seen. I was told if I delayed Coming to hospital I would have died. . They also took my calcuim gland out. If I don't have calcium in my body I will slip into a coma. So much for doctors that know nothing about how the thyroid gland works.

What an awful experience.

Omg that is awful bless you 😫 wow so lucky you didn’t listen to your doctor and went back......... they make u feel really stupid I actually feel like a hypochondriac and I can see my doctors eyes roll when I wall in 🙈 how are u coping now do you have no thyroid at all? Xxx

I have a lot of it hing in my ears and had an ultrasound scan and diagnosed Sjogrens Syndrome also auto immune x

Tjl90
Tjl90 in reply to MichelleHarris

Did u have an ultrasound on your ears? that’s one of the symptoms that has been ignored with me and it’s so weird it feels like something in my ears and sometimes I get sharp pains too xxxx

MichelleHarris
MichelleHarris in reply to Tjl90

I had an ultrasound of all my neck up to my ears, so my salivary glands and Thyroid x

thank u il speak with my consultant on Thursday xxxx

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