Swings & Roundabouts: Hi Following on from last... - Thyroid UK

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Swings & Roundabouts

Galwayed profile image
12 Replies

Hi

Following on from last month's post when I requested blood tests from the doctor as I had been feeling so rough since November. My results were:

TSH 0.10 (0.27-4.20)

FT4 16.3 (10.5-22.0)

My doctor wanted to reduce my Eltroxin from 100mcg based on these but I refused until I had full private test as suggested by tattybogle . Those results taken same time in the morning, fasting and no levo for 24 hours are:

TSH 0.06 (0.27-4.2)

T4 109 (59-154)

FT4 19.1 (12-22.0)

FT3 4.4 (3.1-6.8)

TPEX 333.0 (0-34)

TGAB 105.0 (0-115)

I subsequently agreed to a reduction to 87.5mcg Eltroxin. I haven't had the crushing bone/joint pain in the last few weeks but the brain fog and fatigue are still there.

My question is, what is the TPEX result screaming at me and what can I do about it? Also on the original doctor's test my RBC 5.12 (3.8-4.8) and Haemoglobin 15.1 (12-15), should these be of concern? The doctor has asked for blood tests in 2 months but I suppose they won't be the whole shebang.

Many Thanks

Siobhan

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Galwayed profile image
Galwayed
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SeasideSusie profile image
SeasideSusieRemembering

Galwayed

TSH 0.06 (0.27-4.2)

T4 109 (59-154)

FT4 19.1 (12-22.0)

FT3 4.4 (3.1-6.8)

I subsequently agreed to a reduction to 87.5mcg Eltroxin. I haven't had the crushing bone/joint pain in the last few weeks but the brain fog and fatigue are still there.

There was no need to reduce your Eltroxin.

The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well.

Your TSH is suppressed (suppressed is below 0.1), your FT4 is 71% through range and your FT3 is just 35.14% through it's range.

TSH is a pituitary hormone which sends a signal to the thyroid, this is useful for diagnosis of thyroid disease but does not tell us our thyroid status once on thyroid hormone replacement (although doctors do tend to say it's the most important test and adjust dose of Levo by the result of the TSH).

FT4 and FT3 are the actual thyroid hormones, these are the results that tell us our thyroid status and, in particular, it's FT3 which tells us if we are overmedicated. Low FT3 causes symptoms. So although your FT4 is good, your conversion of T4 to T3 is producing a low amount of FT3 - poor conversion - so this is why you still have symptoms of brain fog and fatigue.

Things that can affect conversion of T4 to T3 are poor nutrient levels, these need to be optimal, and if these are optimal and conversion is poor then it usually means that we would benefit from the addition of some T3 to our Levo.

TPEX 333.0 (0-34)

TGAB 105.0 (0-115)

My question is, what is the TPEX result screaming at me and what can I do about it?

Thyroid Peroxidase antibodies are very high and Thyroglobulin antibodies are almost top of range. Raised antibodies confirm that the cause of your hypothyroidism is autoimmune, aka Hashimoto's which is where the immune system attacks the thyroid and gradually destroys it.

Fluctuations in symptoms and test results are common with Hashi's.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.

Galwayed profile image
Galwayed in reply to SeasideSusie

Hi SeasideSusie Thank you for such a comprehensive reply. These results are also from doctor's blood draw in Feb:

Serum Vit B12 573 pg/mL (197-771)

Serum Folate 14.6 ng/mL (3.9-26.9)

Serum Ferritin 131 ng/mL (13-200)

Vit D 124 (No range given)

These are while not supplementing as I had supply issues at the time. I did get Thorne Basic B but didn't start yet.

I thought I might be heading down the gluten free route as everything I eat causes a reaction, bloating and flatulence over the past few months.

Thanks so much for the sources, I will start reading right away.

I doubt the doctor will agree to a retest before 6/7 weeks so I can convince her to reinstate the 100mcg.

Siobhan

SeasideSusie profile image
SeasideSusieRemembering in reply to Galwayed

So your nutrient levels all seem to be pretty good although I would start using the Thorne Basic B as it wouldn't hurt to have your B12 level higher, it's not bad but according to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

When taking a B Complex we should leave this off for 3-7 days before any blood test because it contains biotin and this gives false results when biotin is used in the testing procedure (which most labs do).

Hopefully you can get your Levo increased back to what it was before, if so you should have your levels checked 6-8 weeks later (this should be the case after any dose change). Also if you supplement with selenium this may help conversion of T4 to T3, so see what your conversion is like when on the higher dose and if it's still poor it's worth considering adding T3.

Galwayed profile image
Galwayed in reply to SeasideSusie

I know! I was very surprised by these results! Sorry I meant to say Selenium was on my shopping list and I will now start the Thorne Basic B. Fingers crossed the doctor will agree to reinstate 100mcg if I tell her I'm going gluten free and trying to educate myself, and that the increase will help because Lord knows the battle to get T3 will be fierce. But if needs be I will self medicate. Anyway I'm jumping the gun. I will be back with new test results in June. Thanks so much for your help and knowledge as everSeasideSusie

tattybogle profile image
tattybogle

so.... has your bone pain improved since lowering slightly to 87.5mcg ?

if so, it might be an indication that you will continue to improve on 87.5 and perhaps 100mcg had become a smidge too much for your needs .. if some things have improved on lower dose i recommend you give it a reasonably long trial to check this out before you decide you want to go back to 100mcg. eg . at least 8 weeks and preferably 12 .

If 100mcg was 'a little too much' for you you can expect slow gradual almost imperceptible improvements in all sort of apparently unrelated things over e few months ... if it's not you'll start to feel increasingly undermedicated .. there's only one way to find out which .

Bloods are not so much use for making that decision , because some people only feel good when TSH is very low , but some do seem to feel better when it's a little higher , it's very personal where you feel best.. and you do have previous history of feeling ok when it was 3 ish .. so you could be one of them folk who doesn't like your TSH really low .

As for the Thyroid Peroxidase antibodies (TPex /TPOab) ... i wouldn't let them bother you to much.. ,i must admit to being a bit fatalistic about them myself ...i reckon they'll do what they're going to , and there may or may not be anything much you can do about them , and it may or may not make any difference to anything much even of you can..... But that's because i had TPOab of 2499 [0-50] when i was diagnosed. and 15 yrs later they were 'only' 195 without me ever having tried to anything at all to lower them .... i eat a reasonably healthy balanced diet, but nowhere near an 'autoimmune protocol' diet , i also eat gluten, and do all sorts of things i "shouldn't".. and yet my TPOab antibodies still went down massively anyway.

Galwayed profile image
Galwayed in reply to tattybogle

Hi tattybogle Yes I was surprised the leg pain went and I wasn't even taking magnesium. Yes I will definately wait 8 weeks for retest as it is possible 87.5 mcg is my sweet spot.I'm not worried about the antibodies, I just wanted confirmation of what I had. You must have been on the floor when your antibodies were that high! I assume your TSH was suspressed too? I will definately give the gluten free diet a go. I'm doing some research as we speak. I like your attitude! We will do our best but life is too short to obey all the rules all of the time!

tattybogle profile image
tattybogle in reply to Galwayed

"You must have been on the floor when they were that high ?"

I honestly don't think antibody 'level' relates to how we feel .

Granted i felt pretty lousy around the time of diagnosis when they were 2499 ... a couple of months later after i started levo they tested again and they were off the top of the chart at >3000 ....... but arguably i felt much worse than that around the time when they were 'only' 195. But when they were 195 i was a) 15 yrs older and b) had become overmedicated on my previously 'ok' 150mcg dose .

So in my experience ,more antibodies does not = feeling worse.

" i assume your TSH was supressed too ? "

When my antibodies were high ?.... no ....high antibodies doesn't = supressed TSH .

My TSH was only 6.8 when i was diagnosed , not much over range at all and my TT4 was in range , but i'd been increasingly unwell for 4 yrs by that point, while nobody thought to check my thyroid . my stupidly high antibodies probably did me a favour , as without them i might have had more trouble getting prescribed Levo straight away due to my TSH not looking so bad.

Just like antibody levels, TSH level doesn't seem to = how bad people feel.

Some people like i was are literally dragging themselves through the day /freezing cold/ barely able to speak when their TSH is still under 10 ..and some people are still bouncing around fairly happily with TSH 60/70 wondering why they have been having occasional 'funny turns' and why the GP is freaking out saying you have to start taking these Levo tablets immediately.

Galwayed profile image
Galwayed in reply to tattybogle

tattybogle Mad! It really does hammer home the point that we are not 'in range/fine results' but individuals who react differently according to our symptoms.

SlowDragon profile image
SlowDragonAdministrator

Insist that GP does coeliac blood test BEFORE cutting gluten out

Only 5% of autoimmune thyroid patients are coeliac, but further 80% find strictly gluten free diet helps or is essential

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

Galwayed profile image
Galwayed

Thanks SlowDragon I will ask. And it's best to test a stool sample rather than blood?

SlowDragon profile image
SlowDragonAdministrator in reply to Galwayed

Blood test

Followed by endoscopy if test is positive

Galwayed profile image
Galwayed

Thanks SlowDragon

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