latest thyroid results : I’ve been on... - Thyroid UK

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latest thyroid results

Mag999 profile image
21 Replies

I’ve been on levothyroxine since august last year as a trial having begged my gp to try despite my tsh being only slightly raised I had all the clinical signs

Initially I felt better but since January I’ve been going downhill with my energy again. Last tests showed my t3 hadn’t really changed while t4 was top of range and tsh very suppressed.

after advice on here I booked second lots of tests to see if t3 moved after a solid 3 months of levo

Results in:

TSH 0.05 (0.27-4.2)

T3 3.62. (3.1-6.8)

T4 20. (12-22)

Ferritin 30.7 (13-150)

B12 113(37.5-150)

D 61 (50-200)

TGA 15 (<115)

TPA<9 (<34)

I still can’t get my vitamin d and ferritin up despite supplementing, b12 has dropped a bit too despite injecting

I believe this suggests I don’t convert t4 very well and should be on some form of t3. What are my next steps with gp or do I have to find private source? I have the thyroid Uk list if anyone can recommend someone in southeast Uk please message.

thanks in anticipation of help and support which has been fabulous and without which I don’t know where I’d be.

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Mag999
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21 Replies
SlowDragon profile image
SlowDragonAdministrator

Was thyroid test early morning and last dose levothyroxine 24 hours before test

How much levothyroxine are you taking

Which brand of levothyroxine

How much vitamin D are you taking

Are you also taking and magnesium or vitamin K2

Ferritin is extremely low

Are you vegetarian or vegan

Pre or post menopause

You need full iron panel test for anaemia if not done one

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 

Medichecks iron panel test 

Test early morning and fasting. Don’t eat iron rich dinner night before test

medichecks.com/products/iro...

SlowDragon profile image
SlowDragonAdministrator

Post with results from 3 months ago shows ferritin and vitamin D have reduced since then ….and Ft3 dropped further

healthunlocked.com/thyroidu...

So you need to increase dose vitamin D.

Try increasing levothyroxine to 75mcg and 100mcg alternate days. Perhaps try splitting levothyroxine dose ……taking half dose waking and half dose at bedtime

Retest in 6-8 weeks. Night before test, if splitting dose levothyroxine, delay bedtime dose levothyroxine until AFTER blood test.

Working on improving ferritin levels with lots of red meat, liver, black pudding etc .

Ferritin ideally at least over 70

Are you taking daily vitamin B complex as well as SI B12

Ideally all four vitamins at optimal levels before adding T3 or trying NDT

List Specialist thyroid doctors and endocrinologists who may prescribe T3 or NDT

healthunlocked.com/thyroidu...

Mag999 profile image
Mag999 in reply toSlowDragon

yes was early morning and no levo for 24 hours. I’m on 75mcg and gp won’t increase it with my tsh so suppressed

I’m vegetarian and post menopause which is a whole other story

On a vitamin an and d combo at 200%rda on nutritionist recommendation.

No b complex yet as I absorb so poorly. Nutritionist working on gut issues

Will look at iron panel thanks

I have had 3 lots of tests done and t3 hasn’t moved and I’ve got worse I have been supplementing for 3 years and just can’t seem to get to an optimum level.

SlowDragon profile image
SlowDragonAdministrator in reply toMag999

So as vegetarian you will almost certainly need to supplement iron to maintain good levels

Get full iron panel test done ASAP

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin 

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Effective supplement 

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin 

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Heme iron v non heme

All vegetarian iron is non heme and harder to absorb

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary 

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

Low Iron implicated in hypothyroidism 

healthunlocked.com/thyroidu...

Ferritin range on Medichecks 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

SlowDragon profile image
SlowDragonAdministrator in reply toMag999

Thyroid levels

You either need to self source an increase in levothyroxine or get T3 added

Both options will suppress TSH further.

On replacement thyroid hormones TSH is largely irrelevant.

You need to see a thyroid specialist who understands this

LEVO DOSE SHOULD NOT BE DETERMINED BY TSH

Diogenes/Toft paper:

bmcendocrdisord.biomedcentr...

healthunlocked.com/thyroidu...

The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:

Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis

February 2020 Journal of Clinical and Translational Endocrinology 19:100219

DOI: 10.1016/j.jcte.2020.100219

LicenseCC BY-NC-ND 4.0

Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich

LlINK TO PAPER: 

ncbi.nlm.nih.gov/pubmed/320...

sciencedirect.com/science/a...

SlowDragon profile image
SlowDragonAdministrator in reply toMag999

Exactly how much vitamin D are you currently taking

It’s clearly not enough

With thyroid disease we frequently need higher dose vitamin D than typical

Personally, with Hashimoto’s and gluten and dairy intolerance I need 4000iu daily in summer and 5000iu daily in winter as a maintenance dose to maintain vitamin D between 100nmol-125nmol

And I needed even higher dose for 6-8 months when improving low vitamin D up from insufficient level

Strongly recommend you start a daily vitamin B complex to balance B vitamins

SlowDragon profile image
SlowDragonAdministrator in reply toMag999

I have been supplementing for 3 years and just can’t seem to get to an optimum level.

Levothyroxine doesn’t top up failing thyroid, it replaces it. Essential to be on high enough dose to maintain good Ft4 and Ft3.

You either need higher dose levothyroxine or addition of T3 prescribed. Initially worth trying increasing levothyroxine

Low Ft3 results in low stomach acid. Low stomach acid results in poor nutrient absorption

Vegetarian diet inevitably results in low B12, low iron and low ferritin……but especially when hypothyroid

Low vitamin levels result in poor conversion of Ft4 to Ft3. High Ft4 results in low TSH

Mag999 profile image
Mag999 in reply toSlowDragon

thanks for all the above, I will increase vit d and look at b complex with nutritionist she has been v helpful but says useless me taking an array of supplements till I improve my digestion but seems it’s a bit chicken and egg with low t3 lowering stomach acid ( which I tested for and is low)

Helpful to know not to worry about tsh so much also.

My gp is very helpful but won’t go outside any nhs guidelines. Will discuss with her as she is always interested in what I bring back from the forum

SlowDragon profile image
SlowDragonAdministrator in reply toMag999

On T4 only therapy

ncbi.nlm.nih.gov/labs/pmc/a...

In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.

Improving low vitamin levels should improve poor conversion, resulting in lower Ft4 and higher Ft3 and ability to then increase levothyroxine further

On levothyroxine plus T3 prescribed alongside TSH likely to drop lower, typically to 0.01

pennyannie profile image
pennyannie

Hello Mag :

Yes you are right your conversion of the T4 - Levothyroxine into T3 is not good.

You can check how well you convert by dividing your T4 by your T3 :

I'm getting yours conversion ratio coming in at 5.52 .

The accepted conversion ratio is said to be 1 - 3.50 - 4.50 T3/T4 with most people feeling at their best when they come in this ratio at 4 or under.

No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal and i know from experience I feel at my best with a ferritin at around 100 : folate around 20 : active B12 75++ ( serum B12 500++) and vitamin D at around 100.

Your ferritin is much too low - i had investigations and a full iron panel when my ferritin was at 22 - all was ok - and then I started with a prescription iron tablet that made matters worse and wasn't offered an alternative so started buying my own and slowly I managed rebuild through supplementing and eating liver twice weekly - i felt marginally better when ferritin crept over 45 and then it was another few months and I after I passed 70 everything started to fall into place and the thyroid hormone replacement taking effect.

How much Levothyroxine were you put on last years and did you have blood tests every 6-8 weeks and your T4 dose increased as needed to build up your level of T4 ?

Mag999 profile image
Mag999 in reply topennyannie

thanks for your info, I’m veggie but thinking I may have to try medicinal meat atlowest possible level to improve things as I’m at rock bottom.

I’m on 75 mcg levo not been increased as firstly blood tests hard to come by and each time my t4 was top of range it’s only having my t3 results that they haven’t insisted on reducing my dose.

I clearly need to up all my vits and minerals so will get on with that. Thanks for your reply

Spoticus profile image
Spoticus in reply topennyannie

Apologies for jumping on someone else’s post , I just wanted to ask you what iron replacement you used . I have the same problem with my iron prescription from the Gp & need an alternative. ?

SlowDragon profile image
SlowDragonAdministrator in reply toSpoticus

Several members have mentioned improving iron on Three arrows iron supplement

Older Post here discussing lots of different options

healthunlocked.com/thyroidu...

If taking any iron supplements essential to do full iron panel test 3-4 times a year. Don’t just test ferritin levels

You can have high iron and low ferritin

Medichecks iron panel test 

medichecks.com/products/iro...

Mag999 profile image
Mag999 in reply toSlowDragon

I am confused as my haemoglobin is normal but low ferritin, and it’s been low for years so not sure why that hasn’t translated into low haemoglobin. how do you get your iron stores up without raising haemoglobin? I have got iron panel results coming this week

SlowDragon profile image
SlowDragonAdministrator in reply toMag999

You need full iron panel test

Iron

Total iron binding capacity

Transferrin saturation

Ferritin

medichecks.com/products/iro...

Test early morning and fasting. Stop any iron supplements a week before test

If only ferritin is low than you can only increase by eating iron rich foods in diet

pennyannie profile image
pennyannie in reply toSpoticus

I started buying Gentle Iron - but probably any iron bisglycinate will be suitable as it's softer on the stomach and bowel

I also ate liver twice a week and took sachets of liquid iron Spatone ;

i now supplement with a 200g tub of chickens each week which I make into a pate and take around a spoonful a day with a dollop of Hellman's to help this medicine go down.

tattybogle profile image
tattybogle

these may be useful for conversations with GP about low TSH :

healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.

arTistapple profile image
arTistapple

A note about ‘managing’ GPs. I have found if I stick to one complaint, I get a better hearing. I supplement with written letters too which are added to my file. Not necessarily acknowledged but in my file. I have been mismanaged for so long I feel this is important, gives me a little bit of control. GPs sort of go off in all different directions if you give them too much info at once. It looks like it’s ‘helpful’ but I think now it’s cleverly disguised panic. Panic about what exactly? Panic to get one out of their office! This happens to our overall detriment.

Mag999 profile image
Mag999

I am lucky mine is helpful but I take your point and have written letters to clarify my situation. It’s hard when multiple issues are going on which are linked but the nhs doesn’t see it that way. I’ve been sent to multiple specialists for various aspects of low vitamins/hypothyroidism as my gp says there are no old fashioned generalists anymore.

You end up feeling like a collection of body parts and no holistic overview is taken.

arTistapple profile image
arTistapple in reply toMag999

Yes I always think that there is no more ‘wholistic’ illness than hypothyroidism. Doctors are probably the last people on the planet to see or understand this. Each individual symptom needs ‘diagnosis’ and drugs (more or less) or some other intervention specific to each condition spotted. No, most of our symptoms really are because of the hypothyroidism; if only doctors realised this. Symptoms are clues to where our meds are, or are not. No wonder there has been a huge rise in alternative or complementary medicine. I truly fail to understand them not knowing more about hypothyroidism. The waste of money in the NHS because of lack of education of doctors must be massive. Just treat us properly and a huge bill within NHS could be reduced markedly. Of course they would then have to prescribe T3 in some cases. What is that old saying? Destroyed ships all for halfpenny worth of tar. Or something like that.

dunestar profile image
dunestar

Your Vit D is slightly better than mine. I've been advised to try a liposomal version as Vit D is fat soluble. May be more expensive than "normal" versions.

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