Got my test results. T3 out of range. Advice on... - Thyroid UK

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Got my test results. T3 out of range. Advice on talking to doctors?

beanenjoyer profile image
21 Replies

Hi all, I just got my most recent blood test results. I'm so happy I convinced my doctor to test T3 because I'm 100% sure they would have blown me off otherwise with these results (the dreaded "normal range"). I was pretty close to intentionally skipping my meds to push it out of range at this point...

I'm seeing a new doctor next week that I've never seen before (the one I know who was good to me last time is on leave and her next appt is in over a month). So I have no idea how receptive they will be.

But I am quite certain I need an increase in levo or maybe even a T3 prescription. And it looks like my ferritin is super low again, so will need to sort that out. I got prescribed ferrous fumarate before, but it really upsets my stomach, so thinking of asking for something else.

I'm 27 years old, Hashimoto's and currently on 75mcg levothyroxine. I've been having more noticeable fatigue etc recently.

Please share any self-advocacy advice/resources!

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beanenjoyer
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21 Replies
McPammy profile image
McPammy

You definitely could do with some T3 looking at your results. And also some ferritin or something similar. I take T3 and ferris fumerate due to low blood results previously. My symptoms was really bad fatigue and lack of energy and strength. I had a multitude of symptoms really. Once I got the T3 my life changed dramatically in a very good way. I hope you get a trial of combined T4 plus T3 at the very least. If they refuse the T3 probably on cost grounds I’d go private to obtain it through a private endocrinologist. I had to do that. It’s changed my life from being unable to walk to now going the gym 4 times a week and I’m now full of energy and life.

beanenjoyer profile image
beanenjoyer in reply toMcPammy

I'm so glad T3 helped you! I hope I can at least get a T4 increase and maybe some iron supplements, and then we can see about T3. I'm going to try to arm myself with as much knowledge as possible.

Britpol profile image
Britpol

you are right about having to increase your T3 level. I would just like to draw your attention to your high platelet count. I had this problem but doctors ignored it until I had a thalamic stroke , because my blood vessels are too narrow and my blood was too thick ( my conclusion). So, they put be on anti platelet medication . My thyroid responded badly to it ( I was experiencing thyroid storm symptoms at night) and eventually I had to have the thyroid out, but before then I sourced a natural blood thinner, Gingko Biloba which, unlike synthetic blood thinners, have not produced any side effects for me. You can buy ginkgo biloba anywhere but I am using a pure version, Gingko Royal, brand. Good luck!

beanenjoyer profile image
beanenjoyer in reply toBritpol

Yeah, I've had a consistently high platelet count pretty much every time I've ever been tested. But because it's only slightly high they've never brought it up. My blood pressure is fine / actually tends to run low (I have postural hypotension). I do have extremely small veins, getting blood out is a struggle.

SlowDragon profile image
SlowDragonAdministrator

Was this last test done early morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

High TSH over 2, and low Ft4 and Ft3 shows you need 25mcg dose increase in levothyroxine

Free T4 (fT4) 10.4 pmol/L (7.7 - 15.1) 

Ft4 only 36.5% through range

When adequately treated your Ft4 (levothyroxine) will be at least 60-70% through range

Ft3 will increase as Levothyroxine dose rises

Approximately how much do you weigh in kilo

Guidelines on eventual daily dose is likely to be approximately 1.6mcg Levo per kilo of your weight per day

beanenjoyer profile image
beanenjoyer in reply toSlowDragon

Thank you! I'll push for an increase. Do you have a link to the official guidelines that I could show to my doctor?

I'm about 88kg at the moment. Have been losing weight over the past year (tl;dr was pre-diabetic, got put on metformin and changed my diet, it helped me lose weight for the first time in years.)

The test conditions were met except for the before 9AM one (it was just after 10am though, so not too far off).

SlowDragon profile image
SlowDragonAdministrator in reply tobeanenjoyer

So 88kilo suggests likely eventual daily dose levothyroxine might be approximately 140mcg Levo per day

Metformin tends to lower TSH -

cureus.com/articles/50564-e...

your GP may be unaware

Many medics incorrectly only look at TSH for adjusting dose Levo. Essential to always test TSH, Ft4 and Ft3

As the dose levothyroxine increases over coming months, you might find it easier to loose weight

With Hashimoto’s it’s ALWAYS worth trying strictly gluten free diet

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator in reply tobeanenjoyer

How long have you been left on just 75mcg

Which brand levothyroxine are you currently taking

insist politely on 25mcg dose increase to 100mcg

Retest again in 2-3 months time

Meanwhile get vitamin levels tested

Come back with new post once you get results

beanenjoyer profile image
beanenjoyer in reply toSlowDragon

Thank you very much! The metformin study is super interesting, I will mention that for sure.

I've been on 75mcg for about 4-5 years. Random generic brands, whatever the pharmacy gives me.

Already dairy free (mostly), not coeliac. Food is a struggle so idk what I would eat on a gluten free diet. I will consider it if things do not improve after getting meds and iron sorted.

beanenjoyer profile image
beanenjoyer in reply tobeanenjoyer

Also, is there a reputable source for the weight x 1.6 guideline?

SlowDragon profile image
SlowDragonAdministrator in reply tobeanenjoyer

I've been on 75mcg for about 4-5 years. Random generic brands, whatever the pharmacy gives me.

Very poor care to have left you on such an inadequate dose so long

as you are dairy free INSIST on lactose free levothyroxine

At 100mcg you have two options Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet.

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

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

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).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

vitamin levels

Essential to test B12, folate and Vitamin D as well

Have these been tested

What vitamin supplements are you taking

For good conversion of Ft4 to Ft3 we must have GOOD Vitamin levels

Ferritin is terrible - very common when on inadequate dose levothyroxine

Are you vegetarian or vegan

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

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

Stop iron supplements 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

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...

Posts discussing Three Arrows as very effective supplement

Great replies from @FallingInReverse

re ferritin and Three arrows

healthunlocked.com/thyroidu......

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great reply by @fallinginreverse

healthunlocked.com/thyroidu...

Iron patches

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...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Iron deficiency without anaemia

healthunlocked.com/thyroidu...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

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...

Really interesting talk on YouTube, link in reply by Humanbean discussing both iron deficiency and towards end how inflammation can also be an issue

healthunlocked.com/thyroidu...

Inflammation affecting ferritin

healthunlocked.com/thyroidu...

Updated reference ranges for top of ferritin range depending upon age

healthunlocked.com/thyroidu...

Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:

Females 18 ≤ age < 40. 30 to 180

Females 40 ≤ age < 50. 30 to 207

Females 50 ≤ age < 60. 30 to 264l

Females Age ≥ 60. 30 to 332

Males 18 ≤ age < 40 30 to 442

Males Age ≥ 40 30 to 518

The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.

beanenjoyer profile image
beanenjoyer in reply toSlowDragon

Omg, thanks for all the links! Will look into all this.

Zazbag profile image
Zazbag

Before considering adding T3 you should be on a higher dose of levo. 75 mcg is very low and your T4 result isn't very good either. Increasing your levo will increase both your T4 and your T3. Once you're on a dose of levo where your T4 is about 75% in the range and you've managed to increase your vitamin levels (you should have an easier time absorbing iron if you're on a higher dose of levo), if your T3 is still abysmal that would be the time to consider adding T3. Do you have results for your vitamin B12, vitamin D and folate by any chance?

In terms of iron supplements, there is one called ferrous gluconate that is meant to be very gentle on your stomach. I would try that in the highest dose you can find, and don't be afraid to take twice the dose per day. Make sure you take it with vitamin C to promote absorption, and at a different time of day to your levo (at least 4 hours apart).

beanenjoyer profile image
beanenjoyer in reply toZazbag

Hi! I don't have results for the other markers you mentioned, no. This is just a test from my GP, who initially only ordered TSH and full blood count. I bullied them into adding T4 and T3. I'll bring those up once I see the doc, but honestly they are so stingy on tests that it feels like a lost cause (and I almost feel bad about asking because it feels like I'm wasting NHS resources).

If they don't agree I might honestly consider a private test. Maybe it's time to stop cheaping out on my health and accept that I have to spend money :/

Zazbag profile image
Zazbag in reply tobeanenjoyer

Your health needs are just as important as anyone else's, and you're not responsible for the demise of the NHS. Demand the care you pay for as a taxpayer, and don't take no for an answer. If your GP doesn't listen, find one who does. It's not necessary to go private as a first resort.

beanenjoyer profile image
beanenjoyer in reply toZazbag

Thank you. I was going to see a specific GP who previously was sympathetic, but she's on leave and very booked up. I'm trying to find a local group of people with thyroid conditions to see if anyone knows good doctors. No luck so far.

Zazbag profile image
Zazbag in reply tobeanenjoyer

If your usual GP is good but frequently isn't available, meaning you have to settle for an inferior one, then it's worth looking for another GP. You want someone who listens, shows respect and is knowledgeable enough to treat Hashimoto's. This may mean calling around a few GP surgeries (look on Google Maps for surgeries near you and check the reviews). When you call or visit them, ask the receptionist "Hi, I have an underactive thyroid and I'm looking for a GP with experience treating hypothyroidism and who listens and believes what I say. Please can you recommend someone from this surgery?" The response you get will tell you everything you need to know about whether to register at that surgery.

beanenjoyer profile image
beanenjoyer in reply toZazbag

Yeah, that's why I am trying to see if there are people in the area who also experience this. Thyroid issues aren't that uncommon so there must be. That said, I'm with one of the biggest GP practices here and they're currently merging with another, so my doctor options are about to expand. I also have other chronic conditions and the doctors there have been good for them, so I'm happy to stay for now and see a few different doctors from here if necessary.

beanenjoyer profile image
beanenjoyer in reply tobeanenjoyer

Thanks for the script though, I might use that!

Zazbag profile image
Zazbag in reply tobeanenjoyer

It worked for me and now I have a fantastic GP.

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