Looking for advice after recent blood tests - Thyroid UK

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Looking for advice after recent blood tests

nellie1972 profile image
22 Replies

Hi all, I have been on 150mg levothyroxine for years and now the doctor is saying i may need to reduce due to my results but Im constantly exhausted and in pain and have even taken to sticking notes up in the house as reminders for things. To me, the results dont make much sense so any advice before i go back to the doctors would be greatly appreciated.

Serum TSH 0.23 mu/l

Serum free T4 11pmol/l

Serum ferritin 11ug/l

Serum folate 3.7ug/l

Serum vit B12 167 pmol/l

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nellie1972 profile image
nellie1972
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22 Replies
radd profile image
radd

nellie,

Welcome to our forum.

All numbers look low but it is difficult for members to comment without the ranges. Can you provide the numbers in brackets as ranges vary according to area//testing lab.

nellie1972 profile image
nellie1972 in reply to radd

Sorry :(

Serum tsh range (0.35-4.7)

T4 (7.8-21.0)

Vit b12 (115.0-1000.0)

no ranges on ferritin and folate

SeasideSusie profile image
SeasideSusieRemembering

nellie1972 The reason your doctor is saying you may need to reduce your dose is because your TSH is low. Without the range it's not possible to say if it's under range, if not it's very close to the bottom. However, TSH isn't the most important test but doctors don't seem to know that and generally tend to dose by TSH unfortunately.

The aim of a treated hypo patient is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges.

Again, without the range it's not possible to be completely accurate, but your FT4 also seems to be very low. The FT3 is actually the most important test but is rarely done. T4 is the storage hormone and has to be converted to T3 which is the active hormone and is needed by every cell in our bodies.

From the ranges we normally see on here you do seem to have nutritional deficiencies, check your results with their ranges and if I'm right then the following suggestions apply -

Ferritin needs to be half way through it's range, with a minimum of 70 for thyroid hormone to work. The range we typically see is around 20-150. If yours is under it's range, and actually because it appears to be very low anyway, you should speak to your GP as iron infusions might be warranted. Also ask for a full iron panel to be carried out.

B12 is recommended to be at the very top of it's range, even 900-1000. I believe yours is actually below range. Anything less than 500 can cause neurological problems.

Folate I also think is below range.

B12 and Folate work together. As they both appear to be under range (or extremely low), again please see your GP and ask to be tested for Pernicious Anaemia. Also, pop over to the Pernicious Anaemia Society forum here on Health Unlocked for advice healthunlocked.com/pasoc . Don't take any supplements until you've had further advice.

nellie1972 profile image
nellie1972 in reply to SeasideSusie

Thank you..I have posted the ranges in a reply to Radd. At the time of testing I was on 2 iron tablets a day and have now increased to 3 and I queried my B12 and she said it was absolutely fine :(

SeasideSusie profile image
SeasideSusieRemembering in reply to nellie1972

Unforrunately, GPs know virtually nothing about nutrition as they aren't taught it. Your B12 is not fine, it is within range but far too low. Pop over to the Pernicious Anaemia Society forum here on Health Unlocked for further advice healthunlocked.com/pasoc . Give them your B12 and Folate results and they will advise what to do, they may possibly say ask to be tested for Pernicious Anaemia.

To help your ferritin along, if you're not vegetarian then eating liver once a week will be a good idea, either as a meal or in casserole, cottage pie, curry, bolognese sauce, etc.

Your GP does seem to be going by TSH, which is under range. Your FT4 is now as low as I though as your range starts lower than a lot we see on here, however it is still too low.

B12 is low enough to seek advice from the Pernicious Anaemia forum as mentioned.

SlowDragon profile image
SlowDragonAdministrator

Would be a good idea to also check level of vitamin D. Very common to be low vitamin D with hypo.

Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results.

If you have Hashimoto's then you may find adopting 100% gluten free diet can really help reduce symptoms, and lower antibodies too.

Selenium supplements can help reduce symptoms and improve conversion.

You do not need to have ANY obvious gut issues, to still have poor nutrient absorption or low stomach acid or gluten intolerance.

Your low levels of folate, ferritin and B12 suggest you have poor absorption and/or gluten issues going on.

nellie1972 profile image
nellie1972 in reply to SlowDragon

I am taking vit D supplements and also take ranitidine and lansoprasole for my stomach. My GP surgery want £10 per printout of my results so I have to wait until I see a certain doctor to get my results printed as she likes the fact that i am interested. FBC was done and a urea/electrolytes test which all have been marked no further action

SeasideSusie profile image
SeasideSusieRemembering in reply to nellie1972

What rob dogs!! Whenever they say that to you just ask for the figures and write them down, with the ranges, or ask them to show you the screen and make a note of them

nellie1972 profile image
nellie1972 in reply to SeasideSusie

The receptionist told me they charge due to the fact the results are private...pretty strange really as she was reading them and they are my results not hers...needless to say she wasnt amused when the doctor left a printout with my new prescription haha :)

SeasideSusie profile image
SeasideSusieRemembering in reply to nellie1972

Stupid woman, they're not private, they're yours - Data Protection Act 1998.

They are allowed to make a charge but it should really only reflect the cost of paper and printing if you only want the last test done.

They can charge £10 and that actually covers a print out of all your records held electronically.

At least your GP is more helpful that the snotty receptionist.

helvella profile image
helvellaAdministratorThyroid UK in reply to SeasideSusie

Quite, SeasideSusie,

I *think* ownership of the records is technically vested in the Health Secretary. That is, they most certainly are NOT the property of the doctors themselves. And this ownership is simply a useful fiction - they are supposed to exist and be maintained for the benefit of the patient!

nellie1972,

If I had to write them down from the screen, somehow my speed of writing would be v..e....r...........y slow. And I just might spend a while going back and forward and re-checking my notes. :-)

Wouldn't do any good at all, but would make me feel better.

shaws profile image
shawsAdministrator in reply to nellie1972

£1 would be more like it to run off a sheet of paper. £10 is astronomincal.

SlowDragon profile image
SlowDragonAdministrator in reply to nellie1972

PPi's inhibit uptake of lots of vitamins

nhs.uk/Conditions/Anaemia-v...

Masses of posts on here about PPi's, and often is not high acid. When hypo common to be low acid

Spareribs profile image
Spareribs

As SlowDragon says - PPIs such as lansoprasole stop you absorbing vital minerals

Your GP should not ignore low B12, ask to get tested for Pernicious Anaemia in case.

article from GP's Pulse magazine....

pulsetoday.co.uk/clinical/t...

J :D

nellie1972 profile image
nellie1972 in reply to Spareribs

Thank you....my aim is to go armed with enough information to stop them fobbing me off, I'm fed up of the sympathetic look and the offer of more blood tests with no solution. I worry that all my medications are getting together and cancelling each other out but without my lansoprasole i get really poorly.

Spareribs profile image
Spareribs in reply to nellie1972

Hubby was prescribed omeprazole, it states it should not be taken long-term - & it took him an agonising month to come off it. He now manages it by avoiding eating stuff like bread, pastry etc. & occasionally has dilute apple cider vinegar - yes sometimes acid stops extra acid production (the stomach needs acid!)

Please note I'm no medic, and am in no way recommending anyone stop their meds, it is just an example. J :D

Astridnova profile image
Astridnova

You have my sympathies. With such low B12 it is no wonder you are sticking notes up to remind yourself of things. I would expect you to be feeling exhausted and in a lot of pain. You can take B12 sublingual in doses of 5000mcg; just hold them under your tongue and you will bring your blood levels up within a few weeks. Generally this works where they used to have to give you intramuscular injections. If you don't supplement your B12 you risk becoming crippled and permanently brain injured. Have a look at this article and films interviewing doctors and nurses here: candobetter.net/node/4463 "Incurable Alzheimers or treatable B12 deficiency".

Stemar profile image
Stemar

What's your Vit D level , my memory was terrible last year , found out I had hyperparathyroid problem but also very low vit D ...my memory improved once I had got that level up but didn't completely until I had the parathyroid tumor removed

nellie1972 profile image
nellie1972 in reply to Stemar

They didnt test vitD this time but I take colecalciferol 2 times a day (500mg/400iu) :)

janveron1 profile image
janveron1

Where is the Free T3?

janveron

Clutter profile image
Clutter in reply to janveron1

Janveron,

FT3 is rarely tested in primary care unless TSH is <0.03 because they are looking for signs of hyperthyroidism not low FT3 in hypothyroid patients.

dolphin5 profile image
dolphin5

Considering how low your FT4 is, I would expect your FT3 to be low - or very low. It's likely that you need more T4 not less. Whatever you do, don't agree to a drop in your dose - I believe that they can't make you drop it. Ask for your FT3 to be measured next time you have a blood test.

T3 is the active hormone - the one all your cells need. T4 is primarily a storage hormone, and little use to your body until it has been converted to T3.

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