Thyroid problem after thyroidectomy feeling ill... - Thyroid UK

Thyroid UK

137,647 members161,425 posts

Thyroid problem after thyroidectomy feeling ill always

jovon profile image
70 Replies

I had a total thyroidectomy last 2018 and i'm very ill at this time. Feeling weak and tired all the times. Anybody can help me please.

Written by
jovon profile image
jovon
To view profiles and participate in discussions please or .
Read more about...
70 Replies
Lalatoot profile image
Lalatoot

As scrumbler says jovon we need results and more info to offer advice. We feel very ill when our thyroid hormones are out of balance.

jovon profile image
jovon in reply to Lalatoot

Hi. I am taking levo 100mcg at this time but really i felt weak and tired all the times. Cannot sleep and have also shortness of breath.

jovon profile image
jovon in reply to jovon

My latest lab test my THS was 0.97

jovon profile image
jovon in reply to Lalatoot

My TSH 0.97

pennyannie profile image
pennyannie

Hello Jovon

Welcome to the forum.

Can you tell us why you had a thyroidectomy.

Was the reason cancer, or nodules, a goitre or maybe Graves Disease. ?

Are you still under the hospital for monitoring and medication or has your GP taken over these responsibilities ?

I also do not have a thyroid and managed by my doctor and had 6 monthly and then yearly blood test showing, as far as I am aware just TSH blood test results.

You are entitled to copies of your blood test results, and that is basically a bench mark for the people on here to look at and to try and establish if your results look ok for you.

We also ask for vitamin and mineral levels, and for ferritin, folate, B12 and vitamin D to be tested. Your doctor may have all these results and you may just need to ask for copies.

Alternatively you can arrange to have your bloods tested privately. The two main private companies, are Blue Horizon and Medichecks, and depending upon where you are in the country, they can even visit you at home to take your bloods for you, and there is more information on the Thyroid uk website, should you wish.

Once you have current blood test results of TSH, T3, T4, folate, ferritin, B12 and Vitamin D and the antibodies, post the results and ranges back on here and people better able than me will talk you through the results and what it all means.

jovon profile image
jovon in reply to pennyannie

Only latest TSH i have now 0.97. I am taking cobal B12 daily. Other than that nothing.

jovon profile image
jovon in reply to pennyannie

Last 2 years ago i was diagnosed of swelling goiter. When biopsy tested it was benign but can be cancerous as per doctor. So underwent total thyroidectomy. Since that time my health become bad and now coming worst everyday feeling weak, tired, shortness of breath and sleepless. Cannot sleep

jovon profile image
jovon in reply to pennyannie

As of this time im living here Saudi Arabia working.

pennyannie profile image
pennyannie in reply to jovon

Ok then, I 'm sure living in Saudi Arabia has it's challenges -

So, do you have medical cover or can you pay to have these blood tests as detailed above expedited ?

Without further information it's difficult knowing anything - when you discussed your symptoms with the doctor what did he suggest, and did he run some more detailed blood tests ?

jovon profile image
jovon in reply to pennyannie

Do they accept insurance?

pennyannie profile image
pennyannie in reply to jovon

I have no idea - if you're on contract over there, sometimes medical insurance is included in the salary package.

jovon profile image
jovon in reply to pennyannie

Yes salary package type. Everytime i go doctor i show my insurance card. How about if Cash is that acceptable and how much. After you get the full result of my blood test as you recommended. What happen next

pennyannie profile image
pennyannie in reply to jovon

I don't know the details of your medical/ salary package and so can't answer this question.

If you can get the blood test actioned, as detailed, post the results and ranges back on here, in a new post and people better able than me will talk yo through the results and recommend anything that needs to be actioned.

We can help you understand the blood test results and suggest what you need to do next.

jovon profile image
jovon in reply to pennyannie

Ok thanks i will do to see my doctor. Did you recieve blood test result sent to your email?

pennyannie profile image
pennyannie in reply to jovon

No, we have only received a TSH reading of 0.97 :

Some glucose readings and know you are supplementing B12 and that you are on Levothyroxine x 100/125 daily for hypothyroidism following a thyroidectomy about 2 years ago:

jovon profile image
jovon in reply to pennyannie

Do you have Whatsapp. I can send you there.

pennyannie profile image
pennyannie in reply to jovon

No I don't have What's Up - this website is all we have and everybody sees every post, question and answer.

jovon profile image
jovon in reply to pennyannie

Where are you from?

jovon profile image
jovon in reply to jovon

Actually all my tsh t3 and t4 are norma. But why im still getting this kind of ill.

Batty1 profile image
Batty1 in reply to jovon

Jovon, You need to post your most recent thyroid and vitamins labs with the ranges provided from lab paperwork. The ranges are usually after the results.

Are you taking 100mcg thyroid meds one day and the next day taking 125mcg?

How long have you been on these two thyroid meds and rotating them?

Why are you on 2 different thyroid meds?

jovon profile image
jovon in reply to Batty1

Hi Batty1. I was on 125mcg last year, then i switch to 100mcg this year being reduce the dosage as per doctor advice.

Batty1 profile image
Batty1 in reply to jovon

Ok. So your NOT rotating between the two doses as previously stated or we misunderstood......We still need the lab information including the ranges.

pennyannie profile image
pennyannie in reply to jovon

This is the Uk

jovon profile image
jovon in reply to pennyannie

Actually my tsh t3 and t4 are all normal but why im still getting this kind of feeling unwell.

pennyannie profile image
pennyannie in reply to jovon

Well what are your T3 and T4 ?

Sorry I dropped out just now - my laptop cut out :

jovon profile image
jovon in reply to pennyannie

Last 2 months ago i had T3 0.91 T4 11.27 and TSH 1.048

But lately the latest last 2 days only my TSH was 0.97. T3 and T4 not included

pennyannie profile image
pennyannie in reply to jovon

OK what were the ranges for the T3 and T4 ?

and should both be the Free T3 and Free T4 results.

jovon profile image
jovon in reply to pennyannie

TSH: 1.048 ul/ml

T3: 0.91 ng/ml

T4: 11.27 ug/dl

pennyannie profile image
pennyannie in reply to jovon

There should also be some numbers alongside these which are the ranges -

Free T3 ranges are generally around 3.1-6.8 and Free T4 range is generally around 12-22.0 :

pennyannie profile image
pennyannie in reply to jovon

I think these results are Total T3 and Total T4 results - do you have the ranges ?

It is better to work things out on Free T3 and Free T4 results and ranges ?

Can you look for these as well please.

SlowDragon profile image
SlowDragonAdministrator in reply to jovon

Please add the ranges on Ft4 and Ft3 results

Different laboratories have different ranges

Eg

Ft4 11.25(12-22)

Ft4 11.25 (9-19)

jovon profile image
jovon in reply to SlowDragon

T3: 0.91 ng/ml. Range: 0.87 - 1.78

T4: 12.27 ug/dl. Range: 6.10 - 12.20

TSH: 1.048 ulU/ml. Range: 0.380 - 5.330

jovon profile image
jovon in reply to SlowDragon

Sorry my T4: 11.27 ug/dl. Range: 6.10 - 12.20

SlowDragon profile image
SlowDragonAdministrator in reply to jovon

So your Ft4 is high , but Ft3 very low

Was test done soon after taking levothyroxine?

Or was last dose levothyroxine 24 hours before test.

Ft4 is 84% through range

But Ft3 is only 5% through range

Helpful calculator for working out percentage through range

So you are extremely poor converter of Ft4 to Ft3

Important to test vitamin D, folate, ferritin and B12 regularly

These need to be at good levels for good conversion

But many people, especially after thyroidectomy do need addition of small dose of T3 alongside levothyroxine

20% Patients with no thyroid can not regain full health on just Levothyroxine

ncbi.nlm.nih.gov/pmc/articl...

jovon profile image
jovon in reply to SlowDragon

This was done after 24 hours taking my levothyroxine. I tool levo at 4am then labtest done at 10am.

SlowDragon profile image
SlowDragonAdministrator in reply to jovon

4am to 10am is only 6 hours

Or did you mean 4am last levothyroxine and bloods 30 hours later

Next time adjust time of last levothyroxine to be 24 hours before blood test.

jovon profile image
jovon in reply to SlowDragon

Ah ok. So what i will do is not to take my regular 4am levo prior to my labtest. From how many labtest have done already im so used this way.

SlowDragon profile image
SlowDragonAdministrator in reply to jovon

We recommend that ALL thyroid tests are done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

If you normally take levothyroxine at 4am

Eg if test Monday 8am morning.....on Sunday morning don’t take levothyroxine until 8am

Monday 8am have blood test. Take levothyroxine dose straight after

jovon profile image
jovon in reply to SlowDragon

Ok next test i will do. Thanks. How can i manage my health now no good as really ill all the times

jovon profile image
jovon in reply to SlowDragon

Is there any medicine aside from levothyroxine?

jovon profile image
jovon in reply to SlowDragon

I need help badly

Lora7again profile image
Lora7again in reply to jovon

I don't suppose you could source some NDT? or are you unable to take it because of where you live or other reasons. A lot of people without a thyroid do better on NDT. There is also Thyro -Gold which is bovine NDT from the US.

jovon profile image
jovon in reply to Lora7again

Hi Lora

Thats my problem. I want to try NDT but im living here Saudi Arabia and its hard to find the source. Its not allowed here.

SlowDragon profile image
SlowDragonAdministrator in reply to jovon

Many people are forced to acquire T3 (liothyronine) or NDT themselves

Most NDT is from pigs, but some is from Beef

jovon profile image
jovon in reply to SlowDragon

Which one is good. From pig or beef.

SlowDragon profile image
SlowDragonAdministrator in reply to jovon

I am prescribed T3 liothyronine. It’s more flexible on being able to adjust tiny split doses of T3 alongside levothyroxine

I thought living in Muslim country pig thyroid would be disapproved/banned on cultural grounds ?

jovon profile image
jovon in reply to SlowDragon

I can take pig thyroid when i go back my country Philippines as no prohibited there.

jovon profile image
jovon in reply to pennyannie

From another clinic last 3 months ago. TSH: 1.52 uIU/ml normal

Free T4: 1.54 ng/dl high

Free T3: 2.50 pg/ml normal

jovon profile image
jovon

Hi. I am taking levothyroxine 100mcg daily. Sometimes 125mcg but still my condition bad. Feeling so weak and tired and even i have shortness of breath.

jovon profile image
jovon

My TSH was 0.97

pennyannie profile image
pennyannie

Ok, have you discussed these symptoms with your doctor and were some blood tests run ?

Is your doctor managing you B12 or are you doing this yourself ?

Do you live with someone ?

jovon profile image
jovon in reply to pennyannie

I have regular visit doctor every 3 months to see my bloodtest and all normal except this latest my glucose in blood showed 159 and my glucose in urine showed +4. My TSH 0.97

pennyannie profile image
pennyannie in reply to jovon

Well, I don't think everything can be normal for you as you say you are very unwell.

We really do need a full thyroid blood test panel to include TSH, T3, T4, ferritin, folate, B12 and Vitamin D plus the antibodies and inflammation markers as previously detailed.

Both Medichecks and Blue Horizon do this test if your doctor hasn't.

Normal doesn't actually mean anything in the overall scheme of things, we need the results and ranges to be able to identify why you feel as you do.

jovon profile image
jovon in reply to pennyannie

I have sent you the blood test result in your inbox.

pennyannie profile image
pennyannie in reply to jovon

We need a thyroid blood test panel to include TSH, T3, T4, ferritin, folate, B12 and

vitamin D - a TSH blood test in isolation means nothing and I can't comment on the

glucose numbers as I don't know enough about that speciality.

What has the doctor done to try and help you ?

SlowDragon profile image
SlowDragonAdministrator in reply to jovon

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

Is this how you do your tests?

jovon profile image
jovon in reply to pennyannie

Im living alone here but have friend by side.

pennyannie profile image
pennyannie in reply to jovon

If you are getting no help from your doctor, can your friend help you and take you to a different doctor, hopefully a specialist in endocrinology.

jovon profile image
jovon in reply to pennyannie

No they can't. I am working my own.

jovon profile image
jovon

My tsh 0.97

pennyannie profile image
pennyannie

If these breathing difficulties are a new symptom I suggest you talk urgently to the doctor as currently the whole world is experiencing a pandemic - Covid 19 - and some of the main symptoms are a high temperature, a cough and breathing difficulties.

jovon profile image
jovon in reply to pennyannie

I have this breathing difficulties before the covid 19 appered.

pennyannie profile image
pennyannie in reply to jovon

Your Total T3 is very low at under 4% through the range compared to your Total T4 which is at around 85% through the range, and from everything that I read I believe these two vital hormone need to be balanced and most people feel well when both T3 and T4 are both in the upper quadrants of the ranges.

I'm not too conversant with reading blood test results, especially Total T3 and Total T4 so shall wait and read and learn what the Administrator suggest you do.

Your conversion can be compromised if your vitamins and minerals are not optimal, so suggest you still get the ferritin, folate, B12 and vitamin D checked out.

Some people need to have both T3 and T4 thyroid hormone replacement prescribed in order to bring both the T3 and T4 into balance and the patient an acceptable level of wellbeing.

jovon profile image
jovon in reply to pennyannie

How can i balance my T3 and T4

jovon profile image
jovon in reply to pennyannie

How can i balance my T3 and T4

pennyannie profile image
pennyannie in reply to jovon

Good morning to you -

Levothyroxine is synthetic T4 - :

Liothyronine is synthetic T3 - :

I don't know if you can get Liothyronine in Saudi : It is a question for your doctor :

There are also tablets that contain a fixed amount of T3 and T4 - your doctor should advise you there as to what options you have :

It is also imperative that your vitamins and minerals are optimal and that your core strength is strong to help you through this phase :

You need medical advise there, now, and if your doctor doesn't know you need to see someone else with knowledge of thyroid health issues :

helvella profile image
helvellaAdministratorThyroid UK

You may not realise that you can edit, or delete, any posts or responses you have made here.

HealthUnlocked have produced some help for how to do this. You can find this here:

support.healthunlocked.com/...

When you edit the original post in a thread, you will also have the option to add (or remove) a single image. (To replace an image, remove the existing image, then add the new one.) This is the same process as writing a new post:

support.healthunlocked.com/...

I am pointing this out purely to ensure that you know your options. :-)

(If you make extensive changes, it is sometimes helpful to add a comment so that people can see that you have made changes.)

helvella profile image
helvellaAdministratorThyroid UK

Current advice is NOT to go to the Accident and Emergency department at a hospital for anything. (I think this applies across the whole UK.)

If there is urgent need, use the phone service - 111.

If it is critical and immediate dial 999.

The situation might be completely different in countries other than the UK.

helvella profile image
helvellaAdministratorThyroid UK

Just where you responded with "Card" because you had mistyped as "Car" or "Cars" or something!

Nothing of any significance. :-)

helvella profile image
helvellaAdministratorThyroid UK

At present, actually physically going to an emergency facility is probably a bad idea almost anywhere. Best plan is to ring - but who to ring will depend on the country. :-)

You may also like...

Thyroid surgery, but still feeling ill

working. Now, my bloods say Im ok, but I feel so ill, tired all teh time, crying, anxious, panic...

What illnesses can cause thyroid problems?

son has been ill for years but has never had a formal diagnosis. Over a period of time, his neck...

Still not feeling well 5 weeks after partial thyroidectomy 

I am feeling exhausted most of the time and feel I can't cope with any type of stress. I feel...

Struggling after total thyroidectomy 3 years ago and not feeling great since

really felt myself since removal. I can feel very down at times. Lately I have a lot of joint pain....

Feeling worse after partial thyroidectomy

after one night in hospital but in the last week I have been feeling gradually worse with a...