Ongoing fatigue following thyroidectomy due to cancer

[keedwell]

In 2019 I had a full thyroidectomy and RAI treatment due to cancer. Since then I have had problems with fatigue, which I understand is not unusual after this type of treatment. I was given125mcg Levothyroxine initially but this caused near hyperthyroidism, I am at present on 100mcg but find I am still feeling very fatigued. Also the results of recent blood tests show my Vitamin D and Iron levels to be reduced, which I understand can be a sign of hypothyroidism. My GP has now advised me to take fairly high levels of Vitamin D and Iron but I am reluctant to mask what may be the cause of the deficiencies and feel it would be better to increase my levothyroxine dose. Has anyone experienced similar ongoing issues?

[greygoose]

I was given125mcg Levothyroxine initially but this caused near hyperthyroidism,

What do you mean by 'hyperthyroidism'? Do you mean a low TSH? High FT3? Hyper symptoms?

Of course, it didn't really cause 'near hyperthyroidism', because you can't be hyper without a thyroid. You could have been over-medicated, but are you sure you were? Because now it sounds as if you're under-medicated.

I am reluctant to mask what may be the cause of the deficiencies and feel it would be better to increase my levothyroxine dose.

Taking iron and vit D supplements won't 'mask' anything. Being hypo means having low T3. Low T3 can reduce the secretion of stomach acid. Low stomach acid means difficulty digesting food and absorbing nutrients. And, you need your nutrients optimal for your body to use thyroid hormone correctly.

Of course, if you're under-medicated, as shown on blood test results, you do need to increase your levo. But that does not guarantee improved nutrient levels. Most hypos are on supplements for life, I'm afraid.

[keedwell in reply to greygoose]

Thanks for your reply. The dose of Levothyroxine was reduced from 125mcg to 100/125mcg as my consultant was concerned there was a danger of over-replacing and essentially making me hyperthyroid. My TSH is suppressed at <0.05 as TSH is a growth factor for thyroid cancer. My FT4 is 18 pmol/L, which I understand is normal, I do not know what my FT3 level is.

I was interested to see that most hypos are on supplements - this has never been mentioned to me. My decision is to whether to request an increase in Levo back to 100/125 (which should take me back out of the hypo range), or stick with 100 and take supplements, the objective is to try to get back to some sort of normal life where I don't feel fatigued etc.

[greygoose in reply to keedwell]

Another useless doctor! You cannot become hyper if you are hypo, it is a physical impossibility. Therefore, levo cannot make you hyper. You could be over-medicated but only if your FT3 is well over-range. As they do not test your FT3, they cannot know if you are over-medicated. Where is this man's logic? Did he leave it behind when he entered med school? lol

TSH is not a growth factor for cancer. It has no effect on the cancer itself. But, TSH stimulates the thyroid - Thyroid Stimulating Hormone. If the TSH is too high, the stimulating could cause any remaining thyroid tissue to regrow a little - not much, I hasten to add - but enough to cause the cancer to return. That's why it has to be zero.

I've never had a doctor mention supplements, either. They don't know anything about nutrition because they don't do it in med school. I only learnt about the importance of optimal nutrients by coming on forums like this one.

[keedwell in reply to greygoose]

A complicated subject, but thanks for input on the forum things may become clearer.

[greygoose in reply to keedwell]

A very complicated subject, yes.

[SlowDragon Administrator]

Welcome to the forum

Which brand of levothyroxine are you currently taking

Do you take levothyroxine waking or bedtime

Many (most?) thyroid patients need to supplement vitamin D, vitamin B complex and sometimes B12 or iron too

What are your most recent thyroid results

Please add results and ranges…..vitamin results too if you have them

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

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we MUST Have good vitamin levels

Low vitamin levels suggests you are possibly under medicated

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

Link about thyroid blood tests

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

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

[keedwell in reply to SlowDragon]

Thanks for the information. I am under strict control of my consultant and the thyroid clinic as their main concern is that the cancer does not return and to assist this the TSH level has to be supressed, at present 0.05. Any other considerations are understandably secondary. The information shared on this forum will help me to understand the options.

[SlowDragon Administrator in reply to keedwell]

Then you have an advantage that the consultant will prescribe high enough dose levothyroxine

We need GOOD vitamin levels for good conversion of Ft4 to Ft3

Many thyroid cancer patients need the addition of T3 (liothyronine) prescribed alongside levothyroxine, if Ft3 remains low

Difficult, but not impossible to get T3 prescribed on NHS

Some CCG areas are worse than others

First step is to get full thyroid and vitamin testing done

See exactly what levels are like

Only test early Monday or Tuesday morning, ideally before 9am and last dose levothyroxine 24 hours before test

Better to always get same brand levothyroxine at each prescription

Come back with new post once you get results

[PurpleNails Administrator]

Do you have any results?

For thyroid you need TSH. FT4 & FT3.

Most feel well if TSH around 1 and FT4 (& FT3) top 3rd of range.

Is your TSH kept low?

More importantly what is your FT4 & FT3. These, particularly FT3 are what govern the symptoms.

Don’t trust a verbal “ok, normal or in range”by GP. The lab may not have tested everything & in range is far from optimal.

You need to track you own results to know where you are well.

[keedwell in reply to PurpleNails]

Thanks for the information. I am under strict control of my consultant and the thyroid clinic as their main concern is that the cancer does not return and to assist this the TSH level has to be supressed, at present 0.05. Any other considerations are understandably secondary. The information shared on this forum will help me to understand the options.

[pennyannie]

Hello Keedwell and welcome to the forum :

Can I just add that a fully functioning working thyroid would be supporting you daily with trace elements of T1, T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

T4 is a storage hormone and needs to be converted by your body into T3 the active hormone which is said to be around 4 times more powerful than T4 with the average person needing to convert/find around 50 T3 daily just to function.

Your ability to convert the T4 into T3 can be compromised by low levels of your core strength vitamins and minerals especially those of ferritin, folate, B12 and vitamin D and conversion can also be compromised by inflammation ( CRP ), depression, any physiological stress ( emotional or physical ) dieting and ageing, so whilst we can't do things about all of these we can ensure we support and supplement where necessary to shore up our bodies as best we can.

It is essential that you are dosed and monitored on your T3 and T4 blood tests results and these should be within the ranges and balanced at around a 1/4 ratio - T3/T4 - and we generally feel at our best when our T4 is up in the top quadrant of it's range as this should convert to a decent level of T3 in around the 5's and over 50% through the range.

The thyroid is a major gland responsible for fully body synchronisation including your physical, emotional, mental, psychological and spiritual well being, your inner central heating system and your metabolism.

Some people can get by on T4 - Levothyroxine only :

Some people find that T4 doesn't seem to work as well as it once did and need the addition of a little T3 - Liothyronine - to replace that ' lost ' by having had a thyroidectomy :

Some people can't tolerate T4 - Levothyroxine and take T3 - Liothyronine only :

Whilst other people find themselves better restored 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 down into tablets referred to as grains, and the original treatment for hypothyroidism and use successfully for over 100 years.

Currently T4 levothyroxine is the treatment prescribed in primary care and if you wish to try alternative options you will need to be referred to an endocrinologist to be assessed on the NHS as to your medical needs.

Obviously going private may well give you other options but first and foremost we need to see a full thyroid panel to include your TSH, T3, T4 antibodies, inflammation and the ferritin, folate, B12 and vitamin D results and ranges.

I suggest you start reading up as you are likely in information overload now, and it takes time for things to fall into place and understand and this is where we all start off when coming on this amazing forum and finding a way forward with better health.

You might like to dip into Thyroid UK the charity who support this forum and start reading around all things thyroid - it is a bit of a jigsaw puzzle but once you get a couple of corners out the rest will fall into place and your journey to better health begins,

thyroiduk.org

[keedwell in reply to pennyannie]

Thanks - lots of useful information coming from the forum. I am under strict control of my consultant and the thyroid clinic as their main concern is that the cancer does not return and to assist this the TSH level has to be supressed, at present 0.05. Any other considerations are understandably secondary. The information shared on this forum will help me to understand the options.

[pennyannie in reply to keedwell]

Yes, I totally understand - just start reading around as your situation is not unique and there are other posts on here from people in a similar situation.

We are a patient to patient forum and we learn from each other and find ourselves here when our health and well being are not restored as promised and this amazing forum can help us get back on track.

[keedwell in reply to pennyannie]

Thanks so much - it has helped already to know that there are others in a similar situation and who understand the issues - and frustrations!