Results. I “should” feel normal 😕: So I’ve just... - Thyroid UK

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Results. I “should” feel normal 😕

mummytosix
mummytosix

So I’ve just come back from my doctors with my test results. I’ve been told that my levels are back in range so I should be feeling better (which I’m not)

My doctors will not test my bloods if I’ve fasted and not taken my Levo so these results are taken after a few hours after I’ve taken 50mg of Levo.

Can someone look at my results and maybe work out why I’m still feeling so awful. Also they told me that they work off the tsh levels, they don’t need to check my T4 every time.

24 Replies
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Also on a separate sheet I’ve got the results

CKD epi GFR value/1.73m2 mL/min 90-99999

epi-GFR interpretation result between 61-90=CKD stage 2-mild kidney dysfunction.

Is this anything to worry about because my doctor never even mentioned this.

humanbean
humanbean in reply to mummytosix

I can't actually see the result of your GFR test - I can only see the units of measurement and the range.

GFR (one measure of kidney health) tends to reduce as people get older. Young, healthy people usually have a GFR of > 90. But it is common for older people to have a level of 60 - 90. My husband has a level in the 50s, went to see his doctor about it, and was told it wasn't important. I don't know when doctors take action on GFR. Perhaps when it is in the 20s or 30s? But I'm only guessing.

A TSH of 4.05 is far too high for you to feel healthy. It needs to be much lower - say, 1 or lower. To lower TSH you need a higher dose of Levo.

The other glaring problem is that you are probably suffering from iron-deficiency anaemia and this is why your haemoglobin is in your boots. Your ferritin (stored iron) was only 10% of the way through the range when it was tested. To feel at their best most people need it around mid-range i.e. around 110 with the range you've given.

With low haemoglobin your blood cannot carry around enough oxygen for all your tissues, and this will make you feel awful.

humanbean
humanbean in reply to humanbean

Just noticed your red blood cell count (RBC) is below the range too - this is another indication that you are anaemic.

nhs.uk/conditions/iron-defi...

patient.info/doctor/iron-de...

What do you mean your doctor will not take your blood after fasting/not taking levo?

Your TSH is much too high. Should be under 1 for someone on levo.

SeasideSusie
SeasideSusieAdministrator

mummytosix

My doctors will not test my bloods if I’ve fasted and not taken my Levo so these results are taken after a few hours after I’ve taken 50mg of Levo.

Well, they're only going to know that if you tell them.

TSH: 4.05 (0.34-4.94)

Yes, your TSH is back in range but that is not a good indicator of thyroid status. FT4 and FT3 need to be tested as well, these are the actual thyroid hormones, you need to know if you have enough thyroid hormone circulating.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well.

This is where doctors are so ill-educated regarding treating hypothyroidism.

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3. You can obtain a copy of the article by emailing Dionne at

tukadmin@thyroiduk.org

print it and highlight question 6 to show your doctor.

You can also refer to NHS Leeds Teaching Hospitals who say

pathology.leedsth.nhs.uk/pa...

Scroll down to the box

Thyroxine Replacement Therapy in Primary Hypothyroidism

TSH Level .......... This Indicates

0.2 - 2.0 miu/L .......... Sufficient Replacement

> 2.0 miu/L ............ Likely under Replacement

Serum B12 level is good.

Folate, although in range, is too low, it's recommended to be at least half way through range. Include lots of folate rich foods in your diet, and consider a good quality B Complex, one containing methylfolate not folic acid.

Ferritin is way too low. Your very low haemoglobin, low RBC, low haematocrit, low MCHC and barely in rance MCH, together with a rather low in range ferritin, can all suggest anaemia. You need to discuss all this with your doctor.

You also need Vit D testing.

They asked me directly if I’d taken my Levo and they explained that they could only do my bloods if I’d taken it. Fasting wouldn’t be an issue because I can barely stomach anything anyway. They told me to keep taking my 50mg of iron and eat liver but I’ve doubled up on the dose today, there’s no way I could stomach liver 🤢

Can I insist the doctor does a vit D test?

SeasideSusie
SeasideSusieAdministrator in reply to mummytosix

Can I insist the doctor does a vit D test?

No, you can't insist. You can ask. Many doctors refuse on the grounds of cost or they say that everyone in the UK has a low level. But of course, you can't supplement with the correct dose of D3 if you don't know your level to start with. If the doctor refuses to test then assuming you are in the UK 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/

They asked me directly if I’d taken my Levo and they explained that they could only do my bloods if I’d taken it.

As I said, they'll only know you've taken it if you tell them. Get my drift?

there’s no way I could stomach liver

Have you ever eaten it? You can disguise it, cut up small, add to curry, cottage pie, bolognese, chilli, any meat dish. Look for recipes. Do you like liver pate? Black pudding? Iron rich foods listed here: cks.nice.org.uk/anaemia-iro...

Are you taking your iron tablets with 1000mg Vit C to aid absorption and help prevent constipation?

Are you taking your iron tablets 4 hours away from thyroid hormone replacement, and at least 2 hours away from other supplements and medication?

SlowDragon
SlowDragonAdministrator in reply to mummytosix

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Your GP is absolutely WRONG to say you must take Levothyroxine before blood test

email Dionne at Thyroid Uk for list of recommended thyroid specialists.....your obviously going to need to go over GP's head to make progress

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email

Dionne at

tukadmin@thyroiduk.org

Hay2016
Hay2016 in reply to mummytosix

Yes doctor of course I’ve taken it. Crossing fingers behind back as that goes against guidelines and is excuse to not increase levo which you need. Xx

So lie, and do it right: no levo for 24 hours and fast before blood test! Just tell them, "yes of course I've taken it"

SeasideSusie
SeasideSusieAdministrator in reply to Angel_of_the_North

Absolutely!

I’m struggling to stomach any food at the moment. I usually like liver pate but I retch at the smell at the moment. I’m eating brocolli, plenty of fruit and plain ham sandwiches. That’s about all I can stomach. No I haven’t been taking vit c and I’ve been taking my iron the same time as my Desogesterol pill 10pm at night. I take my Levo at 5 in the morning.

greygoose
greygoose in reply to mummytosix

Might be a good idea to take iron on its own, at least two hours away from everything.

If all they are testing is the TSH, taking your levo before your test is not going to change much. But, your doctor obviously has some queer ideas! It's if you get your FT4 tested that you should leave a 24 hour gap between the last dose of levo and the blood draw.

You are very under-medicated to have a TSH that high. :(

I called the doctors back and told the receptionist that I felt I needed an increase in my Levo. The doctor called back and agreed as a trial to up my Levo to 75mg. But they’ve prescribed me Teva instead of the North Star I was on. Will this make a difference?

Thankyou for all your advice, it’s just so much to take in and learn especially when your head feels a mush anyway 😕

SlowDragon
SlowDragonAdministrator in reply to mummytosix

Teva brand upsets many people

healthunlocked.com/search/p...

Suggest you take it back to pharmacy and ask for same brand as previously

Teva is ONLY brand that makes 75mcg tablet

To take 75mcg in North Star - you will have to cut 50mcg in half to take each day alongside 50mcg

academic.oup.com/jcem/artic...

Until better data become available, I will continue to follow the AACE/ATA/TES recommendations on LT4 treatment in my practice. Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

I just wonder what job your doctor trained for? He doesn’t seem to realise that you consult him with your symptoms and he’s supposed to treat them. Not do some voodoo test, then on the basis of the results, tell you you’re ok and send you home. It doesn’t matter what numbers are on his piece of paper, his job is to listen, then use the very expensive training that he had at the taxpayers expense, to get rid of your symptoms and make you well. How sad that you have to prompt him to increase dose, but glad he’s done it.

mummytosix
mummytosix in reply to Aurealis

The trouble is it’s not just one doctor. I’ve seen 4 different doctors so far in my practice, there’s never any available appointments to book with the same one, and each time I’ve had to start from scratch explaining my symptoms and how I’m feeling, it’s difficult to get much else in to my 10 minute appointment. 😕

Aurealis
Aurealis in reply to mummytosix

Yes I know. I’ve been there. It’s a nightmare. I can’t decide if they really don’t know what they’re doing or just having a laugh at our expense. The terrible thing is that even once you get well again, trust in doctors generally is irrevocably undermined forever. There’s a temptation to self diagnose and treat everything, because it’s easier than another conversation about why you’re not going to lower the dose / the need to ignore tsh / skin rash or whatever doesn’t mean I’m going to start slavishly following test results etc etc etc.

I had one doctor I trusted... until he stopped my T3 ... I doubt he even stopped to think what effect this would have on my emotional state, let alone my health :(

SlowDragon
SlowDragonAdministrator

Suggest you get FULL Thyroid and vitamin testing 6-8 weeks after your dose increase to 75mcg

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

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

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

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_...

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Why would you feel "normal" with those results? Ferritin far too low, plus low haemoglobin and low MCHC and rock bottom MCH - are you anaemic? Folate too low, TSH too high - most healthy people have TSH around 1.2 - and no thyroid hormone results at all. Doctor needs a clip round the ear!

I have never felt well,even when told bloods are normal.my gp let's me function slightly higher than result

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