Blood test results advice please: My recent blood... - Thyroid UK

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Blood test results advice please

Pascinola22 profile image
22 Replies

My recent blood test TSH 6.42 (0.38 -5.3), FT4 9.4 (7.7 -15.1) done at 9.30am as it was the earliest I could get, only water beforehand. I do have night TPO antibodies.

Doctors have just asked for a recall in a years time but I am struggling with the symptoms now, fatigue, hair loss, brain fog, tinnitus, calcific tendinitis in both shoulders, weight has started to go up, too hot or cold & a few more. It is no doubt starting to affect me at work, just not sure what to do next. Any advice appreciated please.

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Pascinola22
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Jaydee1507 profile image
Jaydee1507Administrator

What ever is your GP thinking?

You've been above range for TSH since 2019 so what are they waiting for?

Do show your GP the NICE guidelines where it states:

1.5.4

Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and

symptoms of hypothyroidism.

nice.org.uk/guidance/ng145

Take someone along with you to your appointment if you think it would help. Try and pick a helpful GP to see where possible. You need to be pushy with them, in a nice way and dont stop asking for treatment.

Have you tested key vitamins & now supplementing to optimal?

Pascinola22 profile image
Pascinola22 in reply to Jaydee1507

Thank you for replying. I changed doctors 2 years ago as I moved & it’s been like staring over from the beginning. I do have 12 weekly B12 injections which I had to push for. I have been low in folate & have been supplementing on my own as no help from doctor. I am just at a loss with it all now & struggling. Trying to get an appointment at all isn’t easy. I will try hard & push for a trial of Levo. Thank you.

Jaydee1507 profile image
Jaydee1507Administrator in reply to Pascinola22

I can't imagine how terrible you feel, its shocking your GPs are ignoring your results.

I know its a real struggle when you have zero energy but this is one thing you have to do and make it work.

Many GPs think your TSH has to be over 10 to begin treatment but thats just not the case and you have more than qualified for the 6 month 'trial' as per NICE guidelines which they are supposed to follow.

How much folate do you tae and which type?

Have you tested and now supplementing D3?

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

What about ferritin and/or iron?

All of these vitamins are required for best use of B12 too.

Pascinola22 profile image
Pascinola22 in reply to Jaydee1507

My last folate test was in 2022 -3.7 (3.8 -25.0)

Ferritin 34 (11.0 -307)

Vit D - 78.

HB 126 (120.0 -150.0)

I take 5mg Folic acid.

Thank you, I am going to push now as I’ve had enough of feeling like this & waiting for them to do their job. I’m working full time & finding it exhausting at the moment.

Jaydee1507 profile image
Jaydee1507Administrator in reply to Pascinola22

I'm not surprised you're feeling exhausted. The longer you are hypo and not treated the worse the poor vitamin absorption becomes and you get more symptoms from that alone.

Ask GP exactly what it is they are waiting for to treat you with terrible symptoms and results above range since 2019. Show they the NICE guidelines. Good luck!

Folate is probably OK if you take 5mg folic acid.

Ferritin was almost deficient. Deficiency is less than 34. When was that test?

Ferritin should be around 90 - 100 for best use of thyroid hormone. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc

Link with ideas for dietary iron:

dailyiron.net/

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150. Most people need a minimum of 3,000iu per day.grassrootshealth.net/projec...

Pascinola22 profile image
Pascinola22 in reply to Jaydee1507

Thank you so much, I will go armed this time. The Ferritin test was also from 2022. If I raise my vit D etc levels is my TSH level likely to drop?

Jaydee1507 profile image
Jaydee1507Administrator in reply to Pascinola22

No your TSH wont be affected by vitamin levels but the way you feel will. Low ferritin is responsible for multiple unpleasant symptoms alone, I've attached a list.

We need optimal vitamin levels to help symptoms caused by low levels and also for thyroid hormone to work well.

low ferritin symptoms
Pascinola22 profile image
Pascinola22 in reply to Jaydee1507

Thank you! I have a lot to take in! I will ask doctor to test again maybe do I have something recent to go on.

Jaydee1507 profile image
Jaydee1507Administrator in reply to Pascinola22

That would be a good idea. It might be that you need an iron supplement but best to recheck it so you have an up to date result.

Try asking for a full iron panel while you're there.

I'm actually pretty angry on your behalf that your GP's have been dithering around for years for no reason while you've had to try and carry on your life. Really hope you get the right answer this time.

Pascinola22 profile image
Pascinola22 in reply to Jaydee1507

If not I will do a private test. But no doubt I’ll be pushing hard with doctor this time. You put a lot down to age etc. but enough is enough now. Thank you again for all your advice. Much appreciated.

SlowDragon profile image
SlowDragonAdministrator in reply to Pascinola22

The Ferritin test was also from 2022

So ferritin could be significantly lower now

Low vitamin levels, especially low ferritin often lowers TSH in effect hiding how much your thyroid is struggling

low ferritin will also make you feel exhausted

Aim to improve ferritin to around 70 minimum

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Pascinola22 profile image
Pascinola22 in reply to SlowDragon

I think I will do Medichecks test as I will wait forever from the doctors. So much to take in, I always thought that if you raised iron it would raise Ferritin. Thank you Slowdragon.

SlowDragon profile image
SlowDragonAdministrator in reply to Pascinola22

If you have low ferritin you may not necessarily have low iron

If you have inflammation ferritin can be false high and iron can be low

Pascinola22 profile image
Pascinola22 in reply to SlowDragon

Thank you SlowDragon. All very confusing. I will get my brain around it all.

Cornwaller profile image
Cornwaller in reply to Pascinola22

As others have said you need to be treated for your hypothyroidism. After that it might be worth reviewing your b12 injection frequency as many of us need more frequent treatment - for example does your well being gets worse the further after a shot. Additionally did you have loading doses? The PA forum on HU is a good source of information.

Pascinola22 profile image
Pascinola22 in reply to Cornwaller

It’s difficult to tell what is B12 or thyroid related at the moment. I did have loading doses over a 2 week period. I will check out the PA forum, thank you.

Cornwaller profile image
Cornwaller in reply to Pascinola22

The overlap in symptoms is so large and like you I find it difficult to separate them out. So I just ensure that both issues are adequately medicated and I am then well, or at least much better than I was.

Very best wishes to you and that your hypothyroidism is appropriately managed.

Pascinola22 profile image
Pascinola22 in reply to Cornwaller

Thank you Cornwaller. I am now on the list for a docs appointment in the next 3 to 4 weeks, not ideal but it gives me plenty of time to gather the information first.

SlowDragon profile image
SlowDragonAdministrator

if your GP won’t start you on levothyroxine see thyroid specialist

You’re clearly hypothyroid

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

Some people need a bit less than guidelines, some a bit more

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

Pascinola22 profile image
Pascinola22 in reply to SlowDragon

Hi SlowDragon,

Thank you for the advice. I will look into going private but not sure if I could afford it to be honest. I will try & push with GP first but can’t continue like this I weigh approx. 62 kg.

McPammy profile image
McPammy

Could you try a private route. If so, I’m sure they’d prescribe levothyroxine for you straight away. It’s absolutely dreadful that your GP is not helping you with your thyroid as when it’s struggling like yours you’ll have endless symptoms. I’d definitely try private. I went private only after my gp was useless and my high TSH was causing dreadful symptoms. It affected my work and my entire life really. As soon as I went private I got help straight away. My first consultation was £250 but after that was only £100 once a year for a consultation and a prescription. I needed T3 and was already on T4 levothyroxine. I’ve never felt better since optimising my thyroid levels. Your TSH should be between 1-2. Anything over 2.5 and you’ll be getting symptoms like you describe. GP’s wait until people get a TSH above 10 which I feel is criminal letting patients suffer that long to that level. My TSH was 36 when I finally got help. I felt like taking them to court but in the end I was just relieved to be well and didn’t. Thank the lord for private routes I thought. If you’d like the details of my endocrinologist who is very happy to do zoom, telephone or face to face consultations so no need to travel , please let me know by private message as we can’t mention Drs names on the open forum.

Pascinola22 profile image
Pascinola22 in reply to McPammy

TSH of 36, I can’t even imagine how you must have been feeling! may have to go down the private route, but will give my doctor a push & see what happens. I will pm you for details. Thank you!

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