Advice please I’m chasing my tail here and gett... - Thyroid UK

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Advice please I’m chasing my tail here and getting nowhere.

18 Replies

Can anyone advise me on these test results please,ive tried hrt but had to stop due to side effects and I’m just so unwell with raised lymph nodes in abdomen,seen haematologist had loads of bloods tested which he said were fine and had 2 MRI scans done over 5 month period and no cancer alerts but still no reason given for raised lymph nodes,I’m wondering now given all my other symtoms if it’s thyroid related and how can I find a half decent consultant who knows their stuff and is capable of joining the dots up to get me a diagnosis I’m so fed up being ill.

IgA 1.97 range 0.70-4.00

Thyroid function tests

Free T4 15.4pmol/L range 11.0-26.0

TSH 2.21uU/ml range 0.35-4.50

Free T3 4.7 pmol/L range 3.9-6.8

I’m new here and at a bit of a loss feeling overwhelmed.can anyone advise if I need further testing and which tests

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18 Replies
Lora7again profile image
Lora7again

I think your thyroid is struggling and your T4 and T3 are too low and your TSH should be around 1. Have you any vitamin levels for us to look at? You need to test your vitamin D, B12, iron and ferritin and folate levels. All these can be low with people who have thyroid disease and give you symptoms. For example when I was first diagnosed with Graves' disease 10 years ago my vitamin D was 7 and my ferritin was very low. My hair was dropping out and my nails were lifting off their beds and I felt really ill. Unfortunately my GP thought it was the menopause because I was 48 and for 2 years I was given hormone patches and the Mirena coil which made me worse. I also paid to see a private dermatologist which cost £150 and she said female pattern baldness and suggested rogaine. Not one of these Doctors spotted my TSH was 0.002 and my T4 and T3 were too high. All these years later after suffering another relapse and being bedridden for 2 years did anyone in the NHS treat me so I had to take my health into my own hands and buy Thyroid S from Thailand. I am now in my second remission and my TSH is 0.70 and I think that is slightly hyper but my doctor thinks it is normal. I will be doing my own private blood test in January because my own GP will only test the TSH which is not a good indicator of thyroid function. Sorry if I have rambled on but there are so many people who have untreated thyroid disease in the world and you in my opinion are one of them

in reply to Lora7again

Good morning thank you both so much for your replies and it’s great to know I’m thinking along the right lines I’ve spent so much time having scans and tests done both privately and on nhs and ok it’s great that nothing terminal has shown up but it’s not reassuring me completely because I still feel unwell and suffer so badly with health anxiety that I have no normality in my daily life it’s so not me.

I did have low ViT d which I was given a 6 week high dosage from gp for last year but not been tested again he was more interested in putting me on statins and we had a big row over this.My cholesterol was 7 but I’m post menopause so I expected it to be higher my ferritin levels are too high almost 300 when tested twice but this could be as a result of the inflammation in my body I guess gp said don’t worry not that bad?? I did get tested for haemochromotosis came back negative.coeliac test negative but I’d already been gluten free so not really a valid test. My b12 was 349 ref range 197-771 and serum folate 8.0 ref range >3.0. These tests and thyroid tests were done private by the menopause consultant I was seeing at the time.

I’m gluten free and lactose free as far as is possible and my diet is good but could probably be better.

I’m sorry to load you with this I do realise you have your own health issues and I’m so grateful you’ve taken the time to reply I will now take steps to try and resolve this and get a diagnosis thank you again from my heart and I wish you good health and happiness for 2020 when it arrives.x

SeasideSusie profile image
SeasideSusieRemembering in reply to

Hidden

I did have low ViT d which I was given a 6 week high dosage from gp for last year but not been tested again

It sounds like you were given loading doses which is 300,000iu D3 over a number of weeks. These are only given where Vit D deficiency is present. When we are diagnosed Vit D deficient then supplementation is generally for life; however when we reach a certain level GPs will no longer prescribe and we need to buy our own supplement which many GP omit to inform the patient. They also tend not to re-test after loading doses are completed, which is utterly stupid.

What would be the best idea is for you to retest your Vit D now. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml).

When you have the result of your new test, come back and I will point you in the direction of how to find the dose you currently need to reach the recommended level, and what you then need to do to maintain that level. I will also give you information about the best form of D3 to take and the important cofactors needed when taking D3.

My b12 was 349 ref range 197-771 and serum folate 8.0 ref range >3.0.

When were these tests done? Both appear to be low at time of testing.

Did you start taking any supplements?

Do you have the unit of measurement for B12 - pmol/L or ng/L or pg/ml.

All vitamins can be tested with a thyroid/vitamin test bundle with either Medichecks or Blue Horizon who both offer private home tests which can be done either by fingerprick or venous blood draw (extra cost). Please say if you'd like details.

in reply to SeasideSusie

Thanks so much for replying during this busy time for everyone I so appreciate it.the b12 range was ng/L the folate test was ng/mL my apologies for not listing.I wasn’t advised to supplement.these tests were done at nuffield by meno consultant at my request.

My last d3 test I had done was 139 after that initial load supplement and I did buy d3 /k2 combined oral spray which I took for a few months but lapsed taking it around 3 months now as I’ve been having so many tests/scans done and can’t seem to cope with so much going on.most recent was colonoscopy with biopsies all clear and I have kidney stones and small cyst in kidney.sorry to load this but these consultants keep telling me one thing wouldn’t effect another thing and I shouldn’t have pain here because scans show no reason etc and I’m so wound up and overwhelmed with the fact that no one seems to do joined up thinking they’ll only focus on their particular field ie I ask would high ferritin be caused by inflammation in body from stones or kidney cyst,perfectly logical questions to me but totally rebuffed by them.All I’m hoping to achieve is a diagnosis but I get passed around or completely dumped so I try and work out what to do next myself and so it goes on and on.

I had a severe head injury 3 years ago after another bout of dizziness in the garden resulted in a fall and my short term memory is awful as is my conversational skills I can’t find the word I need mid sentence and it humiliates and frustrates me .I work hard at trying to research things but my memory and capability is not good and I’ve no one to bounce things off hence my long boring post sorry but it just feels so good getting this all out of my headspace.

SeasideSusie profile image
SeasideSusieRemembering in reply to

Hidden

I’ve no one to bounce things off hence my long boring post sorry but it just feels so good getting this all out of my headspace.

Don't worry, the more we know the more we can hopefully unravel the situation.

I had a severe head injury 3 years ago after another bout of dizziness in the garden resulted in a fall and my short term memory is awful as is my conversational skills I can’t find the word I need mid sentence and it humiliates and frustrates me

This could be significant. Trauma to the head can affect the thyroid, possibly by affecting the pituitary or hypothalamus which in turn means the signal to make thyroid hormone doesn't get passed onto the thyroid. Not saying I'm correct, I'm not medically trained, but it could possibly be involved.

My last d3 test I had done was 139 after that initial load supplement and I did buy d3 /k2 combined oral spray which I took for a few months but lapsed taking it around 3 months now

Can you get a new Vit D test now, let's get this back on track. If your doctor wont do it then you can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public, cost is £29:

vitamindtest.org.uk/

or part of the thyroid/vitamin bundle mentioned below.

Come back with new result.

My b12 was 349 ref range 197-771ng/L. ng/L is the same as pg/ml so the following applies:

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."

folate 8.0 ref range >3.0

Although this is over the low limit, it is still quite a low result.

I would first of all check to see whether you have any signs of B12 deficiency here:

b12deficiency.info/signs-an...

If you do have any signs then list them to discuss with your doctor and ask for testing for B12 deficiency and pernicious anaemia.

If you don't have any signs then my suggestion would be to take a good quality B Compex with bioavailable ingredients - methylcobalamin and methylfolate. This will help raise both B12 and folate levels. Recommended here are Thorne Basic B or Igennus Super B. Give it 3-4 months, retest and see where levels are then, post on the forum for comment.

I have kidney stones

These can be caused by taking D3 but no, or not enough K2. Not saying yours are, but worth bearing in mind.

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

afibbers.org/magnesium.html

Free T4 15.4pmol/L range 11.0-26.0

TSH 2.21uU/ml range 0.35-4.50

Free T3 4.7 pmol/L range 3.9-6.8

With a normal healthy person, one would expect to see TSH no higher than 2, with Free T4 mid-range-ish. Your TSH is on the highish side and your FT4 is only 29% through it's range so your thyroid results aren't particularly good.

When were all these tests done?

I would suggest getting the full thyroid/vitamin panel done now to get your current levels for everything. We have two recommended labs which are very popular here:

Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func... You can use code THYROIDUK for a 10% discount on any test not on special offer

or

Blue Horizon Thyroid Check PLUS ELEVEN bluehorizonmedicals.co.uk/t...

Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:

For the fingerprick test, Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)

Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.

B12 - Blue Horizon does Total B12. Medichecks does Active B12.

Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)

When doing thyroid tests, we advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

[* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.]

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (both Medichecks and Blue Horizon advise to leave Biotin/B Complex off).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

in reply to SeasideSusie

Hi again seasideSusie.thank you so much for taking the time to be so thorough in your advice you are a wonderful patient human being.

I’ve booked the tests via the link you gave me to Medichecks so I’ve just got to wait on the pack coming then if I go to my local Superdrug nurse they will draw the blood for me.

You’ve given me such good practical advice and I won’t do anything right now until I’ve done the bloods and gotten my results then I’ll repost if that’s ok and get your opinion.

Massive thank you again.take care xx

SeasideSusie profile image
SeasideSusieRemembering in reply to

You did order the venous blood draw kit didn't you? They send everything the nurse will need to draw the blood, it's a different kit from the fingerprick one.

in reply to SeasideSusie

Yes the full venous kit thank you.

Marz profile image
Marz in reply to

Have you had anti-bodies tested ? See my post below ...

in reply to Marz

Hi Marz sorry no I’ve not had any antibodies tested but I’m going to arrange these things next week now that you guys have helped my train of thinking.because the medics keep telling me everything’s normal it’s thrown me off but I’ll try now and put logical steps back in place to get some answers and a diagnosis it’s very overwhelming.thank you so much too.

Marz profile image
Marz in reply to

We were all like you once upon a time - reading and learning 😥 Always remember normal is an opinion and not a result. Your Doc means your result is in range but it is where you are in the range that is key !

in reply to Marz

Thank you Marz I feel now I’m getting somewhere thank you for your support.

Batty1 profile image
Batty1 in reply to Marz

Marz, What a great line "Normal is an opinion not a result".

Marz profile image
Marz in reply to Batty1

🥰

Marz profile image
Marz

I would rule out Hashimotos by having the antibodies tested - TPO and Tg. The NHS rarely test both. Private testing available through Thyroid UK - see link below ... click onto About Testing. If you have more questions please ask.

thyroiduk.org

in reply to Marz

Well I’ve been yesterday to Superdrug for the nurse to draw my blood needed for medichecks testing I went straight away to post office with it,£6.50 to post next day delivery nearly had kittens at the counter lol.

I just got an email saying the labs had received it this morning and would email me as soon as tests were completed,wasn’t that super fast and great service to all concerned.

I will post as soon as I get them and hopefully you great people will give me your opinion on the results and advise me what steps to take next,I’m learning more and more every day from this forum bless you all.x

Marz profile image
Marz in reply to

Start a new post with results. May get missed here !

in reply to Marz

Will do thank you Marz x

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