Desperate to feel well !!

[Lemondrizz1]

Hello everyone, I am still on my quest to feel well and am really hoping that you could take a look at my latest BT's - I have just had BT to check my Thyroid Levels after six weeks of a Levo increase from 50mcg to 75mcg - bt taken as you advise 9am with fasting and no Levo for 24 hours.

After four weeks I did begin to feel an improvement - with the fatigue beginning to lift and the lessoning of other symptoms - this was the first sign of any improvement in the past fourteen months. - however after another two weeks all the improvements have disappeared and I am now feeling just as ill as ever - It was suggested to me by Seaside Susie that some of my symptoms - in particular (severe Paraesthesia in my feet and legs, with burning pains on waking and also with a fizzy head and dizziness and nausea) - might well be caused by a B12 Deficiency and I have had Blood Tests to check this out - the GP has tried to assure me that they are within normal limits - even though I tried to explain that for optimum levels they were too low.

I also had an apointment with my consultant last week who was more ameanable to this possibility and was considering arranging B12 Injections for me - so am hopefull that this will be happening.

Serum TSH level 1.2mlU/L (0.3 - 5.5)

Serum free triiodothyronine level 4.2 pmol/L (3.1 - 6.8)

Serum ferritin level - above range - 673 ug/L (13.0 - 150.0)

Iron Studies Serum iron level - above range 27.7 umol/L Above high reference limit

Serum TIBC - 47 umol/L (45.0 - 72.0)

Serum unsaturated iron binding capacity - 19 umol/L

Transferrin Saturation - above range - 59% (15.0 - 45.0 - 72.0)

Fasting iron saturation > 45% suggests overload - Above high reference limit

Any comments or advice would be much appreciated please.

Many thanks

Lemonfizz

[Hidden]

hey. Has anyone ever suggested you add some t3 to your treatment? Your t3 is very low in range, do you know your T4 levels?

[Lemondrizz1 in reply to Hidden]

Thankyou Relentlesssearch

No - I have struggled to get an increase in my Levo to 75mcg - and after each bt - I get a note saying NFA - I have asked to be referred to an Endocrinologist - but have been told it is not necesary - I just feel as if I am slowly dying and no one has quite worked it out yet !!

Lemondrizz

[Hidden in reply to Lemondrizz1]

you may benefit from my t3 in your treatment, your ferritin levels are very high which suggest inflammation and conversion from t4 may be affected - is your GP understanding? Otherwise you can always self treat.

[SlowDragon Administrator]

There’s no Ft4 result

Was this not tested?

Ferritin is clearly extremely high

Approx how old are you?

Pre or post menopause?

Will flag results for radd , humanbean SeasideSusie for comments

[SlowDragon Administrator]

previous post…you said you were expecting vitamin D test result

Did you get that?

[Lemondrizz1 in reply to SlowDragon]

Many thanks Slow Dragon -

Approx how old are you?

I am 78 and until 14 months ago was very active with many classes and projects always on the go. Now I am hardly able to drag myself through each day.

There’s no Ft4 result - Was this not tested?

On each occasion my GP has asked for this - but it has not been done which is very frustrating - !!

Ferritin is clearly extremely high

This is the only constant thing in the past year - although it was slightly declining - but is now on the rise again. I have had numerous tests and proceedures to check for anything sinister in the way of inflamation - but still no answers !

14/9/22 Total Vitamin D 91.8 nmol/L > 50 sufficient.

Are you able to see my previous entries ?

I have asked to be referred to an Endo as it feels as if no one has any idea what is going on with me - and after all tests - there is a note NFA ??? Any further advice or comments will be much appreciated please.

Lemondrizz

[SlowDragon Administrator in reply to Lemondrizz1]

First step is to get FULL thyroid testing done

Vitamin D is good - do you supplement?

Have you folate and B12 tested?

You need TSH, Ft4 and Ft3 plus both TPO and TG antibodies tested

GP obviously can’t get lab to do full test, so like thousands of U.K. patients you will need to test privately

Presumably you have had CRP tested ?

Inflammation markers

which brand of levothyroxine are you currently taking

Do you always get same brand

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 plus both TPO and TG thyroid antibodies tested.

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am 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

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Or just thyroid test, no vitamins

medichecks.com/products/thy...

List of private clinics who will do blood draw if you would rather than DIY finger prick test

medichecks.com/pages/clinic...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

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

Once you have full results you can book a private consultation with Thyroid specialist endocrinologist

Vast majority of endocrinologists are diabetes specialists and useless for thyroid

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors 

[e-mail]

roughly where in U.K. are you

[radd]

Lemondrizz1,

I don’t understand your gastros’ diagnosis of Lymphocytic Colitis from elevated ferritin/iron labs. Ferritin is a front line acute inflammation marker and colitis induces large amounts of inflammation but also malabsorption issues usually resulting in reduced serum iron or even iron deficiency. Have you questioned this?

You can not eliminate haemochromatosis by genetic testing as there are too numerous variants and still more being discovered. They have just eliminated the common ones. Therefore, your labs and symptoms should dictate venesection to reduce some of that iron overload which judging by previous labs is continuing to raise. 

When we have high iron levels the T/S becomes a useful ‘true’ marker for iron toxicity when serum transferrin becomes completely saturated. Mine went up to 99% for years refusing to reduce and anything above 65-75% will produce a toxic fraction of plasma (non-transferrin-bound free iron). This proportion of iron having nowhere else to go will eventually start to settle in your organs. Ask to be referred to a haematologist for secondary iron overload asap.

You can’t control these disproportionate amounts of iron overload by diet but to prevent free radical damage I eat a very clean diet (brightly coloured veg), little meat/protein and supplement copious amounts of antioxidants such as Vitamin C and to a lesser degree E and A (beta-carotene), etc.

[Lemondrizz1 in reply to radd]

Radd - Many thanks for your reply and information

I don’t understand your gastros’ diagnosis of Lymphocytic Colitis from elevated ferritin/iron labs.

The diagnosis of Lymphcytic Colitis - was made from biopsies taken from a Sigmoidoscopy

and I am currently seven weeks through on a 10week course of Steroids to treat this.

You can not eliminate haemochromatosis by genetic testing as there are too numerous variants and still more being discovered.

I have already asked if there were any further tests regarding Haemochromatosis and have been told that it has definately been ruled out and nothing further can be done in that direction. My Gastroenterologist has also spoken with a haematologist to see if there was anything else that should have been looked at and they felt not ??

I have long since realised that you have to be your own advocate - but it has not been easy with the problems of severe brain fog and lack of concentration in trying to focus and comprehend a lot of the technical information - but thank you again for your help.

Lemondrizz

[radd in reply to Lemondrizz1]

Lemondrizz1,

Sorry, I perhaps didn't make myself clear. I am not doubting your Lymphcytic Colitis diagnosis (poor you, its awful ☹️) but am questioning your gastro's mistaken assumption as stated in a previous post, that this will raise both ferritin and serum iron.

There's strong possibility that raised ferritin will be related to the inflammation caused by Lymphcytic Colitis (even if this cause is not total) but serum iron would likely reduce due to the associated malabsorption issues (watery diarrhoea, etc) and it definitely wouldn't raise. There has to be another cause and there are many related to secondary iron overload.

Perhaps 'haemochromatosis' is proving the red herring and the key words you should ask for are further investigation into 'secondary iron overload"?

Also investigation into whether iron mechanisms are actually working effectively as high serum iron isn’t a guarantee, especially when high levels of inflammation are present. Have you had a FBC? ie RBC health & haemoglobin levels measured?

[SlowDragon Administrator in reply to Lemondrizz1]

Has anyone suggested getting rid of a pint of blood to bring iron levels down

I realise your above age range to just donate a pint

irondisorders.org/phlebotomy/

[SlowDragon Administrator]

High ferritin

High transferrin saturation

Have you been referred to Haematology for hemochromatosis evaluation

mayoclinic.org/diseases-con...

Hemochromatosis can affect thyroid levels too and the two may have generic link

redriverhealthandwellness.c...

thyroidproblemsdoctor.com/i...

pubmed.ncbi.nlm.nih.gov/182...

[Lemondrizz1 in reply to SlowDragon]

Vitamin D is good - do you supplement?

I take Cholecalciferol Vitamin D3 1000 per day - prescribed by my Rheumatologist for my Osteoporosis

Have you folate and B12 tested?

1/10/21 Serum vitamin B12 level - 249 ng/L (197.0 - 771.0)

17/5/22 Serum vitamin B12 level - 321 ng/L (197.0 - 771.0)

3/10/22 Serum vitamin B12 level - 270 ng/L (197.0 - 771.0)

1.10/21 Serum folate level - 13.8 ug/L (2.1 -26.8)

17/5/22 Serum folate level - 10.1 ug/L (2.1 -26.8)

3/10/22 Serum folate level - 8.9 ug/L (2.1 -26.8)

You need TSH, Ft4 and Ft3 plus both TPO and TG antibodies tested

Pre starting Levo

17/5/22 TSH 5.6 mIU/L (0.3 - 5.5)

17/5/22 SF T4 - 9.1 pmol/L (10 - 22)

27/5/22 Started 50mcg Levo

29/7/22 Serum TSH level 1.8mlU/L (0.3 - 5.5)

7/9/22 Raised Levo to 75mg

21/10/22 Serum TSH level 1.2mlU/L (0.3 - 5.5)

21/10/22 Serum free triiodothyronine level 4.2 pmol/L (3.1 - 6.8)

No T4 - although requested

27/5/22 Se thyroid Peroxidase ab 4.25 iu/ml (0 - 24.9)

No TG antibodies tested- Requested but not done.

29/7/22 Cortisol 384 nmol/L (133 - 537)

Hope this helps

Thank you Lemondrizz

[SlowDragon Administrator in reply to Lemondrizz1]

B12 and folate are both too low

very common to have low B12 over 60 years old

Do you have Low B12 symptoms 

b12deficiency.info/signs-an...

If you do, request GP test for pernicious anaemia before starting any B vitamins

Otherwise suggest starting on a separate B12 supplement first ….then after 2-3 weeks add vitamin B complex

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

To improve low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid 

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

How other member saw how effective improving low B vitamins has been 

healthunlocked.com/thyroidu...

[SlowDragon Administrator in reply to Lemondrizz1]

Suggest you get started on B12, then add separate vitamin B complex

After 6-8 weeks look at getting TSH, Ft4 and Ft3 plus both antibodies tested via Medichecks

Remember to stop taking vitamin B complex week before test

[Lemondrizz1 in reply to SlowDragon]

Thank you Slow Dragon

Again I had asked for pernicious anaemia test - but again not done -

I have a lot of the B12 symptoms especially Parathesia in my feet /legs and head - burning in feet and dizziness and have asked for B12 injections ?

I have started on B12 Drops - can I now have the PA test if offered ?

Thank you for all this information

Lemondrizz

[SlowDragon Administrator in reply to Lemondrizz1]

if your levels improve on vitamin supplements then by definition you are unlikely to have PA

See how symptoms and levels look in 2-3 months time

Pernicious Anaemia test is expensive and unreliable especially private testing

[Lemondrizz1 in reply to SlowDragon]

Thank you for this Slow Dragon

Sorry to be taking up so much of your time today -

Something very interesting has come to light this afternoon -

I had an appointment with my Gastroenterologist last Tuesday 18/10/22

and she wanted to do some more bloods - I have just requested a print out of these and one was for B12 - this was taken ten days after I had started the B12 drops when the level was 249 - and is now -

18/10/22 B12 Vitamin B12 - 567 ng/L (197-771)

As the B12 is now at a better level - but I still have the symptoms - could this be more attributed to Low Folate Levels ? - and should I continue with the B12 and get some Folate drops/tablets rather that the B Complex which contains Folate ?

Also - I have an appointment with my GP on 1/11/22 to discuss Levo levels - from my latest test -

Are you able to give any advice on - if my Levo should stay at 75mcg or raise any further please. My weight is now 45.3kg - so I think it might be about right (1.6per kg)? Especially if the symptoms are more connected with B12/Folate ?

I have also read that untreated Paraesthesia can be irreversible - how long would you have to have this before this was the case. Mine has been since Jan 22 -

I have just had a Dr's appointment with a new GP - discussing all my ongoing symptoms and he has agreed to consult a Haematologist with regard to the Raised Ferritin Levels -

Your advice im much appreciated.

Lemondrizz

[SlowDragon Administrator in reply to Lemondrizz1]

B12 blood test results usually respond quickly to addition of B12 supplements …..but might take much longer for symptoms to resolve

As you have Paraesthesia…..you could push GP for B12 injections but they are increasingly resistant to giving B12 jabs

Many many members take daily vitamin B complex indefinitely and some continue with separate B12 as well (especially if vegetarian or vegan)

Perhaps ask advice on PAS Healthunlocked

healthunlocked.com/pasoc

[Lemondrizz1 in reply to SlowDragon]

Thank you - really helpful - have done

Lemondrizz

[Lemondrizz1 in reply to SlowDragon]

Slow Dragon

Further to your information from yesterday -

Are you able to give me any advice re the following please.

I have an appointment with my GP on 1/11/22 to discuss Levo levels - from my latest blood test and if my Levo should stay at 75mcg or raise any further please. My weight is now 45.3kg - so I think it might be about right (1.6per kg)?

I am still experiencing symptoms and did feel an improvement about four weeks following the Levo increase to 75mcg - but then after another couple of weeks the symptoms all returned and I am now still feeling very unwell.

I would like to be as informed as possible when I see my GP so that I can get a forward plan.

Many thanks Lemondrizz.

[SlowDragon Administrator in reply to Lemondrizz1]

Serum TSH level 1.2mlU/L (0.3 - 5.5)

FT3: 4.2 pmol/l (Range 3.1 - 6.8)

Ft3 only 29.73% through range

Most people when adequately treated will have Ft3 at least 50-60% through range

without Ft4 result you can’t tell if your on inadequate dose levothyroxine or have poor conversion of Ft4 to Ft3

Suggest you get thyroid test including antibodies via Medichecks or Blue horizon

Or Monitor My Health test 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/

Test early Monday or Tuesday morning and last dose levothyroxine 24 hours before test

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

[Lemondrizz1 in reply to SlowDragon]

Many Thanks Slow Dragon really helpful.

I will need to do this as my GP's are saying that my Thyroid Levels are fine.

Despite Dr asking for T4 test it does not come back - surprised that this time they have sent T3 as usually only TSH !

Lemondrizz

[Batty1]

This site maybe of some interest.

labs.selfdecode.com/blog/co...

[Lemondrizz1 in reply to Batty1]

Many thanks Batty1 - an interesting site

Lemondrizz