advice on results please!!: Hi, I recently had my... - Thyroid UK

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advice on results please!!

2hope profile image
24 Replies

Hi, I recently had my bloods done with monitor my health on 10/01/24 and the results indicated low folate and thyroid levels not optimal. I then spoke to my GP but they dismissed the private tests and asked for me to have my bloods done again which I had done on 25/01/24 only because I got the appointment two weeks later. Today I rang for my results and I was told by the receptionist that all bloods have come back normal, no concerns. I don’t know what to do, it makes me cry, I don’t feel normal. I have been feeling dizzy lately, extremely exhausted, severe pain in neck and shoulders, gaining weight (even after giving up chocolates which was my weakness) and waking up with a puffy face and eyes. Where do I go with this, the private tests say one thing and the GP surgery say another. I will be making an appointment with my GP and try talking to her and will also ask for my results so I can see what miracle happened in these few days except me feeling worse. Can anyone suggest what do I do please.

These were my results from 10/01/24 in case anyone needs to know. I will be getting a copy of my recents ones too

Monitor my Health:

TSH - 0.66 (12 - 22)

Т3 - 3.9 (3.1-6.8)

74 - 14.1(12-22)

Vitamin D -103 nmol/L

HB - 220g/L

Ferritin 60ug/L

TSAT - 10% low

Active B12 - 131 pmol/L

Folate 4.5 ug/L

Update: I have received the blood results from my surgery and it doesn’t make sense, especially the folate, how can there be a huge change in two weeks, also t3 and t4 haven’t been done, only TSH.

Haemoglobin estimation 128 (115-165)

serum vitamin B12 - 453 ng/L (211 - 911ng/L)

Serum Folate 11.88 ug/L. (>5.38)

Serum Ferritin 31 ug/L. (15 - 291)

Serum TSH level 0.61 (0.35-5.50)

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2hope
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24 Replies
Forestgarden profile image
Forestgarden

Hi there, your results do indicate you could have an increase in your levo. Your t4 is fairly low, as is your t3. All your gp is interested in is your tsh, and if that is 'within range', then they'll insist no change needed. Once you get your actual results back from the gp, and assuming the tsh is similar, you'll need to go back and insist firmly that your symptoms indicate you are still hypo and that you want an increase in your levo. Keep a diary of your symptoms to back you up. You'll need to help them see that as your tsh is not suppressed, you can handle a levo increase. If that fails ask for a referral to an endo. Be firm! I'm sure someone will be along to comment on your vits

2hope profile image
2hope in reply to Forestgarden

I will try to be more firm, its so hard they are rigid in their ways, I wish they listened to how the person was feeling rather than be so dictated by the results.

Yoll profile image
Yoll in reply to 2hope

I ask for a TRIAL to see if my symptoms improve.

SovietSong profile image
SovietSong

T4 only 21% through range and T3 just 27%.Pain in shoulders and weight gain/puffy face due to water retention were two of my main symptoms when undermedicated.How much levo are you currently taking?Unfortunately like most of our GPs they only look at TSH.Like Forestgarden said you will have to be firm and take action if you want to get well.Is there another GP you could possibly see at surgery?

2hope profile image
2hope in reply to SovietSong

I am currently taking 100mg levo. I have see. Two different GP’s and their stance is the same. I used to take 125mg but they reduced last year because at the time they said my TSH was suppressed even though I still felt under medicated. Now I feel worse, I will speak to my GP and try convincing her.

SovietSong profile image
SovietSong in reply to 2hope

My TSH was over 8 but GP refused an increase as it wasn't over 10!!Last time I had bloods my TSH was 0.09 and best I felt for long time.Too much emphasis is put on TSH reading.As someone else commented write down all your symptoms and go well prepared.Push for 125mcg daily for 8 weeks then retest again.

TiggerMe profile image
TiggerMe

Others have hit the nail on the head.... if you feel uncomfortable asking for an increase you can say that you have been advised by Thyroid UK, even better if you can send your Surgery a direct message (possibly through their website?) then you can write everything down without feeling pressured 🤗

2hope profile image
2hope in reply to TiggerMe

Thank you TiggerMe I will do so, hopefully they take me serious.

TiggerMe profile image
TiggerMe in reply to 2hope

You may need to be quite firm and insistent that your would like at least a 'trial' increase, often a good move as they see this as a temporary thing 😏

SlowDragon profile image
SlowDragonAdministrator

Today I rang for my results and I was told by the receptionist that all bloods have come back normal, no concerns.

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

Normal doesn’t necessarily mean optimal

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone 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.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still 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.

your monitor my health test result clearly shows you need next dose increase in Levo

Get hold of GP results as first step and then push (politely insist ) on 25mcg dose increase in Levo

Do you always get same brand levothyroxine at each prescription

How much do you weigh in kilo

Guidelines on dose Levo by weight is approximately 1.6mcg per kilo of your weight per day

2nd step

Start improving 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

healthline.com/nutrition/fo...

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)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

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 folate supplement (eg Jarrow methyl folate 400mcg)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

2hope profile image
2hope in reply to SlowDragon

I will request for my blood results, in the past they have printed them off after asking mg GP. I am also hoping that my doctor will agree with the 25mg increase even if she agrees for an initial 8 weeks for now. I will be ordering the B Complex and try to improve my low folate. Thank you so much for helping out.

Noelnoel profile image
Noelnoel in reply to 2hope

Obtain results prior to your appt so you’re fully informed and prepared before seeing GP because MMH and NHS results may just be different enough for him/her to have the upper hand. Unlikely but possible. Also will give you enough time to post them here again

Receptionist does not require GPs permission to issue what you’re legally entitled to. I live a short walk from my surgery so I turn up and get them on the spot. If they’re busy I wait. It’s useful to have paper copies, you can make notes on them for personal records such as time done, dosage during that period, existing symptoms, weight, etc

Bearo profile image
Bearo in reply to Noelnoel

I always find the receptionist won’t print test results until they’re sure the GP has seen them and doesn’t feel a need to discuss them with you. And they’ll never let you have the results prior to an appointment to discuss said results, which I find particularly annoying as you have to go for the consultation unprepared.

Noelnoel profile image
Noelnoel in reply to Bearo

You’re correct about the receptionists hanging onto them until GP has had a chance to see them and that’s only right but you’re entitled to them thereafter

SlowDragon profile image
SlowDragonAdministrator

Low TSAT

en.wikipedia.org/wiki/Trans...

A low transferrin saturation is a common indicator of iron deficiency anemia

Ferritin can be falsely high due to inflammation

Suggest you get FULL iron panel test

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 test

Medichecks iron panel test

medichecks.com/products/iro...

2hope profile image
2hope in reply to SlowDragon

Thank you SlowDragon I have just ordered the iron panel test so will hopefully get to see what it happening. I am currently not taking any iron supplements.

Sat2 profile image
Sat2

monitor my health are the Royal Devon University Healthcare NHS Foundation Trust) and the tests are done to the same standards as all NHS labs, they can’t dismiss them on the grounds of probably not being accurate because they are “private” tests.

Flaxjax profile image
Flaxjax in reply to Sat2

They shouldn't dismiss them but my GP did even though I had the blood draw done by phlebotomist at local hospital and test done by monitor my health. They wanted it repeating and only did TSH so a totally pointless waste of time and NHS resources 🤷

Sat2 profile image
Sat2 in reply to Flaxjax

Have a good look at the NICE guidelines on what they should be testing and when, if your complaining of symptoms they should be testing TSH & T4, although it does say consider and not MUST unfortunately.

1.4.3 For adults who are taking levothyroxine for primary hypothyroidism, consider measuring TSH every 3 months until the level has stabilised (2 similar measurements within the reference range 3 months apart), and then once a year.

1.4.4 Consider measuring FT4 as well as TSH for adults who continue to have symptoms of hypothyroidism after starting levothyroxine.

Doris11 profile image
Doris11

If it wasn’t for this forum I’d be in the same boat! They have been extremely helpful. Good luck and if you don’t feel up to standing up to your GP can you take someone with you? Also quoting the NICE guidlines may help? I was told by my Gp that I have too much time on my hands (supposedly a joke!)

Lottyplum profile image
Lottyplum

After reading+agreeing with all the comments, one thing I would say is that MMH is an NHS lab+I would ask why GP wouldn't accept their results?! To me it's more arrogance+belittling of patients!! Gets on my wick! (Northern saying). Don't be pushed around. If no movement in their part, ask for Endo appt. Let them know you're no pushover! Onwards+upwards.

dunestar profile image
dunestar

Low folate can make you feel very unwell even if you are within range. I was very unwell with low folate and was told by the GP that my levels were perfectly adequate. They wait until you are totally on your knees before they do anything.

Katherine1234 profile image
Katherine1234

I would be very poorly with folate that low. B12 cannot absorb without folate. Folate is needed for our DNA and every cell in the body, including brain. Low folate can make you very fatigued and have obsessive thoughts. I am hypothyroid too. The 2 conditions can run parallel. Your T3 is very low, which is the one that supplies energy. I am on T3 as well as T4. I would ask your doctor for a referral to an endocrinologist.

2hope profile image
2hope

i have updated my results if anyone can share their insight.

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