total thyroidectomy, 20 years ago: Hi I’m I 5... - Thyroid UK

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total thyroidectomy, 20 years ago

Geet123 profile image
23 Replies

Hi

I’m I 55-year-old white male. I had a total thyroidectomy approximately 20 years ago it was removed because it grew very large and was choking me , it had grown down into my chest cavity, and also around my trachea.

I take 150 µg of levothyroxine per day. Apparently I’m in the normal range. I find myself struggling on a daily basis with fatigue and depression.

I also have a low resting heart rate late 40s, early 50s per minute. My basal body temperature is approximately 36 first thing in the morning.

I’m finding things a little harder, the older I get .

I’m trying to find information about optimal thyroid range rather than normal. Any help or advice would be welcome.

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Geet123
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23 Replies
greygoose profile image
greygoose

Hi Geet123, welcome to the forum. :)

Optimal is not a number, it's how you feel. If you still don't feel well, then you aren't optimal, no matter what your numbers say.

Have you had full thyroid testing?

TSH

FT4

FT3

vit D

vit B12

folate ferritin

All sorts of things could be going wrong with your treatment, and that's the where the blood tests come in. So, give us the numbers you've got - results and ranges - and we'll see if there's something obvious.

Geet123 profile image
Geet123 in reply togreygoose

Good morning greygoose Thank you for your reply.

I’ve not had a blood test for awhile I’m not sure if it’s the correct thing to do, but these are my test results from my patient notes

Test result Bone profile;Urea and electrolytes;Serum lipid levels;Liver function tests;FREE T3;25OH VITAMIN D (GP ONLY);VITAMIN B12;FOLATE (SERUM);Thyroid function test;FERRITIN Report, Abnormal, Need to speak to doctor (Patient Informed). Review not applicable

Coded entry Serum folate level (42U5.) 10.77 ng/ml [> 4.12]

Please note new folate method and cutoff:

Probable deficiency - <4.13 ug/L

Indeterminate 4.13 - 6.13 ug/L

Replete >6.13 ug/L

If the patient cannot be fasted be aware that a folate rich meal,

eaten less than 3 hours prior to venesection, may increase serum

folate concentrations. Information about this test

Coded entry Thyroid function test (X77Wg) Information about this test

Coded entry Serum vitamin B12 level (XE2pf) 362 ng/L [211 - 911] Information about this test

Coded entry Serum free triiodothyronine level (XaERq) 5.5 pmol/L [3.5 - 6.5] Information about this test

Coded entry Serum total 25-hydroxy vitamin D level (Xabo0) 53.1 nmol/L

Ranges below relate to TOTAL 25-OH Vitamin D

Below 30 nmol/L is deficient

30 - 50 nmol/L: may be inadequate in some people

Above 50 nmol/L: is sufficient for almost the whole population

There is some evidence that levels nearer 75 nmol/L may be beneficial

for the frail elderly at risk of falling (see CUH Trust Guideline)

Above 500 nmol/L: Toxicity likely

For advice on management please see NOS publication :

Vitamin D and Bone Health: A Practical Clinical Guideline

for Patient Management and/or CUH Trust guidelines Ca

and Vitamin D supplements to adults with GFR>30mL/min/1.73m2

Coded entry Serum TSH level (XaELV) 0.2 miu/L [0.35 - 5.5] - Below low reference limit Information about this test

Coded entry Bone profile (44Z2.)

Coded entry Serum albumin level (XE2eA) 41 g/L [35 - 50] Information about this test

Coded entry Serum ferritin level (XE24r) 100.2 ng/ml [22 - 322]

A normal ferritin may not exclude iron deficiency if levels are at the

lower end of the normal range or in the presence of inflammation. Information about this test

Coded entry Serum free T4 level (XaERr) 17.8 pmol/L [10.5 - 21] Information about this test

Coded entry Serum C reactive protein level (XaINL) < 4 mg/L [0 - 9]

Please note change of method and reference interval. For further

information please contact the Biochemistry Duty Doctor. Information about this test

Coded entry Serum alanine aminotransferase level (XaLJx) 26 iu/L [10 - 49] - Please note change to ALT reference range. Information about this test

Coded entry Serum HDL cholesterol level (44P5.) 1.11 mmol/L Information about this test

Coded entry Serum LDL cholesterol level (44P6.) 4.48 mmol/L Information about this test

Coded entry Serum triglyceride levels (XE2q9) 2.21 mmol/L [0 - 1.7]

Above high reference limit; Please note change of method and reference interval. For further

information please contact the Biochemistry Duty Doctor. Information about this test

Coded entry Serum cholesterol level (XE2eD) 6.6 mmol/L Information about this test

Coded entry Serum cholesterol/HDL ratio (XaEUq) 5.9 mmol/mmol Information about this test

Coded entry Serum total bilirubin level (XaERu) 19 umol/L [0 - 20] Information about this test

Coded entry Serum alkaline phosphatase level (XE2px) 48 iu/L [30 - 130] Information about this test

Coded entry Serum albumin level (XE2eA) 41 g/L [35 - 50] Information about this test

Coded entry Serum non high density lipoprotein cholesterol level (XabE1) 5.49 mmol/L

Coded entry Liver function tests (X77WP) Information about this test

Coded entry Serum calcium level (XE2q3) 2.26 mmol/L [2.08 - 2.65] Information about this test

Coded entry Urea and electrolytes (X77Wi) Information about this test

Coded entry Serum sodium level (XE2q0) 142 mmol/L [133 - 146] Information about this test

Coded entry Serum potassium level (XE2pz) 4.4 mmol/L [3.5 - 5.3] Information about this test

Coded entry Serum inorganic phosphate level (XE2q4) 0.88 mmol/L [0.8 - 1.5] Information about this test

Coded entry Serum alkaline phosphatase level (XE2px) 48 iu/L [30 - 130] Information about this test

Coded entry Serum adjusted calcium concentration (Xabpk) 2.31 mmol/L [2.2 - 2.6]

Coded entry Serum creatinine level (XE2q5) 79 umol/L [62 - 115] Information about this test

Coded entry eGFR using creatinine (CKD-EPI) per 1.73 square metres (XacUK) ≥ 90 mL/min

NICE no longer recommends adjusting eGFR for adults of

African-Caribbean or African family origin (NG203, updated August

2021).

Coded entry Serum lipid levels (XE2q7) - Please see NICE CG181: Lipid Modification Guidelines. Information about this test

I was told by my doctor that I was slightly overmedicated, but as I was stable for years, they left it as it was originally went to the doctor because I felt fatigued depressed.

The doctor decided that I was a typical for sleep that you sent me on a trial. The result from that was less than one episode per night, so another words I didn’t have it.

I was told I was fine🙁

After reading everybody else posts I can see that the only way forward is to get retested as a starting point.

Thank you

greygoose profile image
greygoose in reply toGeet123

Serum folate level (42U5.) 10.77 ng/ml [> 4.12]

Folate could be higher. Absolutely useless just saying > 4.12 because the scope is too wide. Folate should be in double figures and yours is only just in double figures, so if it were me, I'd want it higher.

Serum vitamin B12 level (XE2pf) 362 ng/L [211 - 911]

Much too low. The bottom of the range is much too low. B12 should be at least over 550.

So, if I were you, what I would do is get some subligual methylcobalamin (B12), 1000 mcg, and take that for a couple of weeks. Then, get a good B complex - i.e. one containing methylcobalamin AND about 400 mcg methylfolate - and take that as well as the sublingual B12. That should bring your folate up nicely. Then, when the pot of sublingual B12 is finished, just continue with the B complex as a maintenance dose. Thorne does a good B complex, as does Igennus.

Low B12 like yours can cause a whole heap of problems, and symptoms that resemble thyroid symptoms.

Coded entry Serum free triiodothyronine level (XaERq) 5.5 pmol/L [3.5 - 6.5] Information about this test

Serum total 25-hydroxy vitamin D level (Xabo0) 53.1 nmol/L

Above 50 nmol/L: is sufficient for almost the whole population

Almost all the whole population, but not for those that are hypo! We need it higher. And yours is only just over 50. It would be better around 100. But, I can't advise you on what to take for that because I don't have the experience.

Serum TSH level (XaELV) 0.2 miu/L [0.35 - 5.5]

Low, but too bad. You won't be able to raise it without lowering your thyroid hormone levels, and that will make you feel even worse. It's really all about how you feel, not about the numbers, as doctors think. The numbers are just a rough guide.

Serum ferritin level (XE24r) 100.2 ng/ml [22 - 322]

A bit on the low-side. Try eating more iron-rich food, like liver once a week, or liver paté, or black pudding.

Serum free T4 level (XaERr) 17.8 pmol/L [10.5 - 21]

Only 69.52% through the range. Could be higher. Plenty of room for an increase if you can persuade your doctor. And, if you still have symptoms, he should give you at least a 12.5 mcg increase. But, try and raise your nutrient levels a bit first, that might help.

Serum C reactive protein level (XaINL) < 4 mg/L [0 - 9]

That's fine.

I was told by my doctor that I was slightly overmedicated

Your doctor doesn't know much about thyroid, does he. He's only looking at the TSH. But, once the TSH gets below 1, it's a very poor indicator of thyroid status. He should be at least looking at the FT4, which is far from being too high - and, ideally at the FT3, but they don't test that! - and taking your symptoms into consideration, which they rarely do because they don't know what they are! Altered sleep patterns are hypos symptoms. But, they tend to treat all symptoms as separate diseases. Sigh.

Anyway, no way are you over-medicated. If anything, you are under-medicated. But, probably time you had more testing done.

Geet123 profile image
Geet123 in reply togreygoose

Thank you

I’m going to get a test booked as soon as possible. I feel these tests are more than a year old😬

greygoose profile image
greygoose in reply toGeet123

Good idea! :)

SlowDragon profile image
SlowDragonAdministrator in reply toGeet123

How long ago were these test results

Serum vitamin B12 level 362 ng/L [211 - 911]

Serum vitamin D level 53.1 nmol/L

B12 and vitamin D far too low

What vitamin supplements are you taking

Suggest you get thyroid and vitamins retested

FT4: 17.8 pmol/l (Range 10.5 - 21)

Ft4 69.52% through range

FT3: 5.5 pmol/l (Range 3.5 - 6.5)

Ft3 66.67% through range

Show’s remarkably good conversion

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

Geet123 profile image
Geet123 in reply toSlowDragon

This test possibly over a year old

I don’t use any supplements , but I’m going to

I’ve never really looked into things I should be doing to help myself

feel like a naughty boy

It’s time to pull myself together

greygoose profile image
greygoose in reply toGeet123

You're not alone in that. Very few people ever do 'look into things'. They just trust their doctor that he knows what he's doing and has your best interests at heart. It's not always true - especially where thyroid is concerned because so few doctors know anything about it. But, if you're brought up to believe that doctor knows best, it's very difficult to go against that... Until, one day, it suddenly dawns on you that this person in front of you hasn't got a clue! And is making it all up as he goes along. That's when most people think 'hey, wait a minute, maybe I should be taking more interest in what's going on and how all this works!'

I was lucky that that day came pretty early for me. I'd never liked doctors due to the way they treated me - or didn't treat me - as a child. And, having my own children - three horrible pregnancies - confirmed that in the main, they weren't nice people. But about three months into my thyroid journey I realised they were also pretty ignorant!

So, don't beat yourself up about it. It's not the past that's important, it's what you do about it now that counts. :)

Geet123 profile image
Geet123 in reply togreygoose

Thank you for that you took the words, Right out of my mouth I was brought up to trust my doctor

greygoose profile image
greygoose in reply toGeet123

Well, I think that a generation or so ago, doctors were more trustworthy. Before all this modern technology, doctors were taught to diagnose by symptoms. These days, with all the blood tests, xrays, and god knows what else, they aren't taught symptoms so much anymore. So, maybe out parents and great-grandparents were able to trust them. But these days, we just aren't. Sad, but true.

Geet123 profile image
Geet123 in reply togreygoose

Hi Graygoose

as recommended, I’ve had an advance thyroid blood test done by Medicheck I have included the results , quite different from last year. If you wouldn’t mind, please could you share your thoughts with me.

thanking you in advance G

Inflammation

CRP HS

13 Dec 2023

0.969

mg/L

< 3 R

0

3

Iron Status

Vitamins

FOLATE - SERUM

13 Dec 2023

21.5

nmol/L

> 7 R

7

35

VITAMIN B12 - ACTIVE

13 Dec 2023

53.5

pmol/L

37.5 - 188 R

37.5

188

VITAMIN D

13 Dec 2023

43.1

nmol/L

50 - 250 R

50

250

Thyroid Hormones

TSH

13 Dec 2023

0.088

mIU/L

0.27 - 4.2 R

0.27

4.2

FREE T3

13 Dec 2023

4.6

pmol/L

3.1 - 6.8 R

3.1

6.8

FREE THYROXINE

13 Dec 2023

23.3

pmol/L

12 - 22 R

12

22

Autoimmunity

THYROGLOBULIN ANTIBODIES

13 Dec 2023

13.8

kIU/L

0 - 115 R

0

115

THYROID PEROXIDASE ANTIBODIES

13 Dec 2023

<9

kIU/L

0 - 34 R

greygoose profile image
greygoose in reply toGeet123

13 Dec 2023

CRP HS 0.969 mg/L < 3 R

Vitamins

FOLATE - SERUM 21.5 nmol/L > 7

VITAMIN B12 - ACTIVE 53.5 pmol/L 37.5 - 188 R

VITAMIN D 43.1 nmol/L 50 - 250 R

Thyroid Hormones

TSH 0.088 mIU/L 0.27 - 4.2 R

FREE T3 4.6 pmol/L 3.1 - 6.8 R

FREE THYROXINE 23.3 pmol/L 12 - 22 R

Autoimmunity

THYROGLOBULIN ANTIBODIES 13.8 kIU/L 0 - 115 R

THYROID PEROXIDASE ANTIBODIES <9 kIU/L 0 - 34 R

Your vit B12 is too low.

FT3 below mid-range, FT4 over-range, you are a poor converter.

Antibodies negative.

What happened to the iron status?

Geet123 profile image
Geet123 in reply togreygoose

Sorry I missed that

Iron Status

FERRITIN

13 Dec 2023

198

ug/L

30 - 400 R

Vitamin D is low too

greygoose profile image
greygoose in reply toGeet123

OK, ferritin is fine. Yes, vit D is low.

Geet123 profile image
Geet123 in reply togreygoose

🙂

jgelliss profile image
jgelliss in reply togreygoose

👏👏👏👏👏GG you are so so right. Being in range is not always Optimal. It's how one feels that makes one Optimal. Thank you GG for being a Great Advocate and Educator for us .

greygoose profile image
greygoose in reply tojgelliss

You're very welcome, jgelliss. :)

SlowDragon profile image
SlowDragonAdministrator

Do you always get same brand levothyroxine at each prescription

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, and on levothyroxine

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

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

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Geet123 profile image
Geet123 in reply toSlowDragon

Hi and thank you so much for getting back to me

most of the time I do you get the same thyroxine however I’ve just changed to pharmacy2U and so I have to wait-and-see what they send

And with yours and other peoples advice, I’m going to get a test full thyroid and vitamins etc as a starting point

Thank for all the links

I’ve known for years I’ve not felt right. The more more information I read more symptoms. I realise I have. I am so relieved. I found this forum as information seems very straightforward on here rather than the jargon. I’ve been reading on the Internet.

I will keep on reading to other peoples posts for info

when I have my test resultsI will post them once again. Thank you very much.

I have also replied to grey goose they did ask do I have any numbers. I did post my last blood test from my patient note not sure if I should’ve done this but I find it very difficult to decipher and understand😊

SlowDragon profile image
SlowDragonAdministrator in reply toGeet123

I literally just replied as you posted this

Yes get tested and see what thyroid and vitamin levels are now

Hashihouseman profile image
Hashihouseman

without knowing your blood test results for all thyroid vitals but from being the same age and gender and having experienced similar symptoms I would guess you are over medicated with T4 and have insufficient T3. I had / have chronic bradycardia and levothyroxine only treatment makes that unresolveable and unstable because insufficient T4 fails to raise fT3 whereas high levels of T4 reduce intra cellular T4 - T3 conversion also causing chronically low fT3 which particularly affects the heart. The best I can do is aim for absolutely normal levels of T3 T4 and TSH this means them being optimal for you NOT JUST ANYWHERE IN THE LAB RANGE! I would guess that for you that is about 15 fT4 4.5 fT3 and 1-2 TSH and for me is only then that I get control of low heart rate and prevent AFib.

Decant profile image
Decant

Hi and welcome from another man, 56 yo, with thyroid zapped 20 years ago (hot nodules in my case). If mucked about with so much over the years including T4+T3, NDT and how T4+T3. Energy is ok but I'm now on antidepressants but that's as much to do with my situation as health. My energy isn't great and I have to fight to avoid napping. Just background.

One thing, as a man particularly, you could look at is not testosterone levels. They drop gradually as we age and you might get low. DON'T BOTHER along the NHS, get a private test. Mrdichecks do one (expressive) that covers all the testosterone markers AND all the thyroid and vitamin markers that people on this site ask for. Ask for the doctors report (included at no cost).

NHS treatment threshold is above an endocrinology limit, so there is legally scope for private treatment.

Do your own research. I went on TRT for 4 months and it mad no difference to me. I was clutching at straws.

You can also look at exercise, sleep hygiene and improving nutrition. I went plant based years ago and my energy improved. Now I focus on healthier food, less sugar, less processed crap.

For me, it's the holistic changes, including coming to terms with my age and some work on my mind.

Happy to chat.

Geet123 profile image
Geet123 in reply toDecant

hi and thank you for reaching out to me. Your story is interesting. I will take your advice and do some more research and I will stay in touch and let you know how I get on

Thank you

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