Worried about test results and what to do next?

[green-rose]

Hi, Im feeling really ill (exhausted, aching, mouth ulcers which won't heal, brain fog, extreme itching (I could go on but I wont ) I couldn't get a GP appointment for over a month so had some blood tests done privately and the antibody results have me worried:

TOTAL THYROXINE(T4) 107 nmol/L 59 - 154

THYROID STIMULATING HORMONE 3.45 mIU/L 0.27 - 4.2

FREE THYROXINE 13.7 pmol/l 12.0 - 22.0

FREE T3 4.3 pmol/L 3.1 - 6.8

Thyroid peroxidase ab's * 67.9 IU/ml 0 - 34

Thyroglobulin Antibody * 616.0 IU/mL 0 - 115

Any reassurance gratefully received - my mum died at my age from myelodisplastic syndrome arising from thyroid disease and although it's not hereditary, I’m still worried. Also, where do I go from here? What do i ask my GP? I’ve been tested loads for thyroid problems but only the basics so no diagnosis.

[SlowDragon Ambassador]

Your antibodies are most likely due to autoimmune thyroid disease also called Hashimoto's

TSH is on high side

Your FT4 is low

FT3 fairly low

Both Antibodies high

GP needs to test vitamin D, folate, ferritin and B12

These are frequently low as result of autoimmune thyroid disease

Getting vitamins tested and supplementing to improve can help with symptoms

Read as much as possible about Hashimoto's

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

[green-rose in reply to SlowDragon]

Thank you, I really appreciate your reply. Hopefully I will get an understanding GP

🙏

[green-rose in reply to SlowDragon]

Hi, so I have an endo apt next week as i still feel rotten- generally ill, sleeping like the dead so that when i get up in the night i actually fall into things, freezing cold but i haven't got a fever- in fact my temperature is low if thats even possible. Also have brain fog and for the last 3 weeks my skins so dry its falling off me - very unusual for me. My vitamins came back ok-ish. Vit d just in normal range, ferritin just above normal, folate was nearly at the high end if normal, b12 was ok. Other bloods and platelets looked ok apart from some low white platelets on one of them. Im kind of hoping the endos going to say ‘yes you have hashimotos and i will tell your scared nhs g.p. that its ok to prescribe t3/4.’ Is there anything i should ask the endo?

[SlowDragon Ambassador in reply to green-rose]

First thing is, do you have any actual blood test results on vitamins ?

if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

Within range is often nowhere near good enough, when we have autoimmune thyroid disease

Low B12 symptoms can occur if results are well within range,

So can you add actual results and ranges if you have them

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

[msmono in reply to SlowDragon]

Great advice, thank you. Although the actual G.P. I saw wasn't that helpful, the surgery has uploaded all my results in detail so I can take them to the endo.

[SlowDragon Ambassador in reply to msmono]

Suggest you put a post on here with all results and ranges

Members can advise on possible next steps BEFORE you see endocrinologist

Low vitamins always need improving

[Marz]

LOW B12 can be the cause of mouth ulcers and many other symptoms. Ensure you report back with results i a new post as Docs have the habit of declaring you fine /normal/OK when you are in range. It is where you are in the range that is key when Hypo ... around 500 would be a start.

[green-rose in reply to Marz]

I am going to brave the walk-in queue today so I will ask for that to be tested. You don’t recommend an endocrinology referral then? 🙂

[Marz in reply to green-rose]

Also ask for Folate - Ferritin - VitD to be tested too - as suggested by SlowDragon above ... Seeing an Endo may not be the solution at this stage. Read and learn as much as you can from this forum. Low vitamins and minerals can cause so many issues not recognised by your GP.

[SlowDragon Ambassador in reply to green-rose]

GettIng full vitamin testing, especially B12 and folate

Important to tell GP of your mother being hypothyroid. Autoimmune Thyroid issues more likely in close relatives

[msmono in reply to Marz]

My B12 is 131 which given that I take supplements and eat a lot of eggs and cheese (am vegetarian but not vegan) is surprising. Thank you for that info, that's interesting. I made a bit of a mistake because I didn't lay off the vitamin/mineral supplements in time as the Doctor didn't tell me I should stop and it only occurred to me two days before my blood test so don't know if this will have affected the results much.

[helvella Administrator in reply to msmono]

But is that a standard serum B12 test? Or Active B12?

[SlowDragon Ambassador in reply to msmono]

msmono

Is this B12 result from NHS? I.e. Serum test - if so it's EXTREMELY low.

If it's private Active B12 test - a result over 70'is find

[green-rose in reply to SlowDragon]

Hi, it’s nhs “serum vitamin b12” with a normal range of 131-800 so my G.P. Is taking this as normal.

[SlowDragon Ambassador in reply to green-rose]

B12 this low is very definitely not normal, especially when hypothyroid

Symptoms of low B12 are common when hypothyroid, with any results under 500

b12deficiency.info/signs-an...

See GP and request full testing for Pernicious Anaemia before very likely needing B12 injections or daily supplements

Have you had folate tested?

B12 and folate work together

Add folate result if you have them

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms, although a placebo effect cannot be excluded, as a number of patients without B12 deficiency also appeared to respond to B12, administration.

ncbi.nlm.nih.gov/pubmed/169...

Patients with AITD have a high prevalence of B12 deficiency and particularly of pernicious anemia. The evaluation of B12 deficiency can be simplified by measuring fasting serum gastrin and, if elevated, referring the patient for gastroscopy.

Low B vitamins can be linked with low vitamin D

drgominak.com/sleep/vitamin...

Full private testing including homocysteine and MMA

nutris.viapath.co.uk/pages/...

[green-rose in reply to SlowDragon]

Oddly my folate is high- just over normal at 21. Vit d is 51. Also, sorry but i seem to have two log-ins and user-names (this one and ms mono) god knows how I've managed that - my poor confused brain. Ill delete one😳

[SlowDragon Ambassador in reply to green-rose]

Assuming you are in the UK and vitamin D unit of measurement is in nmol

51nmol is low

GP will only prescribe to bring vitamin D up to 50nmol.

Aiming to improve by self supplementing vitamin D to at least 80nmol and around 100nmol may be better .







Once you Improve level, very likely you will need on going maintenance dose to keep it there.




Retesting twice yearly via vitamindtest.org.uk




Vitamin D mouth spray by Better You is good as avoids poor gut function.




It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

ncbi.nlm.nih.gov/pubmed/300...

ncbi.nlm.nih.gov/pmc/articl...

Our results indicated that patients with hypothyroidism suffered from hypovitaminosis D with hypocalcaemia that is significantly associated with the degree and severity of the hypothyroidism. That encourages the advisability of vit D supplementation and recommends the screening for Vitamin D deficiency and serum calcium levels for all hypothyroid patients.

[SlowDragon Ambassador in reply to green-rose]

Perhaps put a post on PAS healthunlocked about low B12 results and symptoms

Gambit62 may pop along from PAS healthunlocked to comment on your very low B12

[Gambit62 in reply to green-rose]

unfortunately the most GPs tend to have very little background in how tests they are 'interpreting' work ... and don't actually interpret them they just read off results.

The BCSH (British Committee for Standards in Haematology) had produced quite a good set of guidelines that cover the various tests, their accuracy and their limitations. Key issues in relation to your case likely to include:

a) serum B12 is only accurate to within 20% - so a reading at the bottom of the scale is quite possibly a reading that is significantly below the bottom of the range

b) serum B12 is looking at what is in your blood - so doesn't provide a guide as to whether your cells have sufficient B12 to run all the processes that involve B12

c) although B12 deficiency is classically associated with macrocytic anaemia this is a symptom (caused by cells in your bone marrow not having enough B12 to run the process that produces healthy red blood cells properly), it is only a symptom and something like 20% of patients with B12 deficiency don't actually present with macrocytic anaemia.

onlinelibrary.wiley.com/doi...

More support on the PASoc forum

healthunlocked.com/pasoc

[green-rose in reply to Gambit62]

Thank you so much. So much info to try and assimilate and all the time its in the back of my mind that my mum’s hypothyroidism went undiagnosed and untreated for so long. She developed myelodysplastic syndrome which her consultant said was likely connected to her thyroid-problems not being diagnosed also Sadly this was also diagnosed too late to be treated. So, this is worrying in so many ways. Thanks again for all the help.

[Marz in reply to msmono]

You need this sorting and quick. My B12 bumped along at around 300 for years as I took a B Complex long before I joined TUK. I live with consequences - of nerve damage from spinal issues. Did you look at the B12 link you were given ? - neurological symptoms come first ... check out the videos on the same link - under the heading Films.

[HMBradley53]

I think when you see you Dr he should test you for Lupus everything you described is just like Lupus symptoms. Im not saying it not your thyroid. But just ask to get tested for other autoimmune. Take pictures of thing like rash etc. To show your Dr

[green-rose in reply to HMBradley53]

Isn't there a rash with lupus though? I haven't got a rash.

[HMBradley53 in reply to green-rose]

Not everyone gets one. You should ask to have your ANA tested and tell your Dr you have symptoms of Lupus

[msmono in reply to HMBradley53]

Ahh ok, didn't realise that, thanks. Will try and get courage to go back to G.P.

[Myro]

How is with your iodine level? Even in Hashimoto case it is needed. It is to chose what is better. To take iodine or not to take. RAI and surgery is not bad choice if it is nesseary. Could be low iodine level good? I survived mixedemic coma. What are Iodine lack consequences?