Having problems with fatigue: I've been on... - Thyroid UK

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Having problems with fatigue

antiloquax profile image
29 Replies

I've been on levothyroxine since having my thyroid removed in 2018.Recently I have been feeling very tired and almost unable to function.

I do know that the brand I am getting changed to Teva at some point and I am wondering if this is something to do with it.

I've had blood tests and the GP tells me my levels are okay, but I am feeling terrible.

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antiloquax profile image
antiloquax
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29 Replies
SovietSong profile image
SovietSong

You will need results and ranges for TSH, T4 and T3 and also key vitamins for people to better advise.Most GP's now only test TSH and maybe T4 if your lucky.Most myself included end up private testing to get full panel. What Levo dosage are you on currently?

antiloquax profile image
antiloquax in reply toSovietSong

175mcg and 150 alternating.

Lulu2607 profile image
Lulu2607 in reply toantiloquax

Sometimes TSH is in range but something else might be out of range eg iron - low iron can cause fatigue and is quite common in hypothyroidism, even if you're not anaemic . Did the Dr do a full range of blood tests to see why you're tired. Altering your dose of levo won't help if you have a vitamin or mineral deficiency. Eg low vit B12, D, or iron. All common problems for hypos. I'm not as expert on the matter of vitamins etc as some are on this forum but I thought I'd make the suggestion. Have you had a full blood count done?

SovietSong profile image
SovietSong in reply toantiloquax

That's quite a large dose of Levo.If taking 175 on a Monday and alternating that's working out about 164mcg daily.Fatigue and other symptoms can be due to over or undermedication. The picture will be much clearer when you have your results and ranges.The important one is the T3 but as I said earlier we often end up doing a finger prick test as it's not tested by doctors.

DippyDame profile image
DippyDame

Please add reference ranges.... these vary depending on how each test machine is calebrated

I've had blood tests and the GP tells me my levels are okay, but I am feeling terrible.

GP sounds clueless....not unusual re thyroid conditions. Poor analysis of labs is common.

GP needs to listen to what you say about symptoms.

Your dose may be on the high side but not producing enough T3

I suspect your T4 to T3 conversion is poor......high FT4 with low FT3

You know your body better than anyone else....listen to it

If you still feel terrible something is wrong

What tests did this GP do?

You are legally entitled to request copies from surgery

Can you post these?

Basic test TSH, FT4 and FT3

Also essential to optimise vit D, vit B12, folate and ferritin.....have these been tested? Thse nutrients support thyroid function/ conversion

Have thyroid antibodies TPO and Tg been measured to check for thyroid autoimmune disease/ Hashimoto's

If correctly medicated you should not feel so unwell!

Ideally you need a full tyroid test to include all of the above

Many of us test privately...

thyroiduk.org/testing/priva...

Your GP is possibly testing TSH....maybe FT4.

TSH is not a reliable marker post diagnosis.

FT3 followed by FT4 are the important markers.

thyroidpatients.ca/2021/07/...

We're all here to help....just ask!

Good luck

Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.

To assess your hormone replacement we do need to see your latest blood results from the GP. Its likely however that they haven;t tested FT3 and sometimes not even FT4 in which case you would need to purchase a private test. This is what thousands in this group have to do to feel well.

You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

Vitamin levels are also extremely important to hypo people.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

antiloquax profile image
antiloquax

Thank you everybody! I will try to find the results. I have had iron, b12 & folate tests. They were ok.

Results from Feb.

T4 13.5

TSH 1.03

B12 566

Folate 16.6

Ferritin 27

SlowDragon profile image
SlowDragonAdministrator in reply toantiloquax

Please add ranges on these, especially T4 and folate

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

No vitamin D result?

What vitamin supplements are you taking

Ferritin is DEFICIENT

Insist GP do full iron panel test for anaemia

Are you vegetarian or vegan?

Teva brand of levothyroxine upsets many people

Teva is only brand that makes 75mcg

SlowDragon profile image
SlowDragonAdministrator in reply toantiloquax

As a bloke you would expect ferritin to be at least between 100-200

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...

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.

antiloquax profile image
antiloquax

Thanks. I am vegan. I can't find a vit D result.

SlowDragon profile image
SlowDragonAdministrator in reply toantiloquax

So as a vegan on levothyroxine you are ALWAYS going to struggle to maintain iron and ferritin without taking iron supplement

Three Arrows is highly effective, but derived from red meat so you may want to consider other iron supplements

Down to you to test FULL iron panel test 3-4 times a year to check iron is not going too high

Looking to improve ferritin to at least 100

It won’t be a quick fix …..Likely to take several months

SlowDragon profile image
SlowDragonAdministrator in reply toantiloquax

So get tested

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

SlowDragon profile image
SlowDragonAdministrator in reply toantiloquax

what’s top of range on folate

What B vitamins are you taking

Presumably daily B12 and separate vitamin B complex?

antiloquax profile image
antiloquax

Thank you, SlowDragon. I have been taking iron supplements (ferrous sulphate 200mg per day), so I am surprised my ferretin is so low.

SlowDragon profile image
SlowDragonAdministrator in reply toantiloquax

You must do full iron panel test

Test early morning fasting and stop iron supplements -5 days before test

Essential to take iron at least 4 hours away from levothyroxine and 2 hours away from all other supplements apart from vitamin C

Your Ft4 (levothyroxine ) result looks low ……please add range

On levothyroxine ONLY we typically need Ft4 at least 60-70% through range

Are you taking daily B12 and vitamin B complex?

SlowDragon profile image
SlowDragonAdministrator

if you are vegan are you on lactose free levothyroxine?

Only two tablet options currently available that are lactose free

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 - now called Vencamil - was previously called Aristo

healthunlocked.com/thyroidu...

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.

If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

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...

pennyannie profile image
pennyannie

Hello Antiloquax and welcome to the forum :

What was your diagnosis that resulted in your having a thyroidectomy please ?

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than than T4.

The thyroid is a major gland responsible for fully body synchronisation of your physical ability through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and ranges as without a thyroid the Hypothalamus - Pituitary - Thyroid - the HPT axis is down regulated as this circuit now not working as the thyroid is not there to complete the feedback loop.

T4 - Levothyroxine is a pro-hormone that needs to be converted in your body into T3 the active hormone that runs all your body's functions and we generally feel best when our T4 comes in the top quadrant of its range with the T3 tracking just behind at around 60-70% through its range.

No thyroid hormone works well until your core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels -

and all your results need to be at optimal levels, which we can advise on, and not just somewhere in a NHS range as some ranges are too wide to even be sensible.

Some people can get by on T4 only :

Others find T4 seems to stop working as well as it once did and that by adding in a little T3 - likely at a similar dose to that their thyroid once supported them with, they feel better and this T3/T4 combo restores their hormonal balance.

Some can't tolerate T4 and need to take T3 only - Liothyronine.

Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.

Currently in primary care your doctor can only prescribe T4 and you need a referral to an endocrinologist for any other thyroid hormone treatment option and I'm afraid financial constraints and CCG/ICB rules and regulations rather than medical need seem to be followed in various parts of the country.

First and foremost we need the ranges on these part blood test results -

your T4 looks much too low on most ranges we see -

and your ferritin - dire - everywhere I researched when very unwell with a ferritin down at 22 - suggested that ferritin needs to be at least over 70 - for any thyroid hormone replacement o work -

I am female in my 70's and now aim for a ferritin at around 100 - folate around 20 - active B12 around 125 ( serum B12 500 ++ ) and vitamin D around 125.

antiloquax profile image
antiloquax

I had a goitre that was affecting my breathing.

SlowDragon profile image
SlowDragonAdministrator in reply toantiloquax

Were you vegan before thyroidectomy

If yes how long before

And what supplements were you taking

antiloquax profile image
antiloquax in reply toSlowDragon

Thanks very much for your help. I've been Vegan since about 1993. I don't take B vitamins regularly.

Results
SlowDragon profile image
SlowDragonAdministrator in reply toantiloquax

Then you may want to consider at least a daily vitamin B complex so to ensure all B vitamins are optimal

Your folate appears quite good

Do you eat a lot of green leafy vegetables

Vitamin B complex best taken after breakfast

Igennus B complex popular option. 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...

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

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...

If vegetarian or vegan, may need separate B12 supplements as well as vitamin B complex if Serum B12 drops below 500 (or active B12 under 70)

academic.oup.com/nutritionr...

The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3

antiloquax profile image
antiloquax

This has the ranges on.

Test results
pennyannie profile image
pennyannie in reply toantiloquax

OK - so in this range of 7-17 your T4 is at 13.50 - which is 65% through the range -

so likely you will feel better with another dose increase as this in turn should increase your T3 which is the active hormone that runs the body .

If you are replying to someone especially you need to make sure you reply within their post using the reply button and you will see their name come up as you start your reply - as then they get notified there is a message for them to come back and read - rather than me just finding this by accident.

antiloquax profile image
antiloquax in reply topennyannie

Thank you.

antiloquax profile image
antiloquax in reply topennyannie

Thanks pennyannie and everybody. I saw a different GP who has ordered some more blood tests, including a cortisol test. Now I am wondering if I have Addison's disease. Anyway, we'll see.I do have some hyperpigmentation & vitiligo. I also sometimes have episodes when I get faint, dizzy & have clammy skin. I also get overwhelmed in social situations, can be hypersensitive to noise and have anxiety & depression. I have been prescribed several different antidepressants from 2008 onwards, including Lithium and was diagnosed with bipolar disorder. My thyroid problem (goitre) developed in about 2018. I am now wondering if I have Addison's

pennyannie profile image
pennyannie in reply toantiloquax

There is much research detailing how taking lithium can effect both thyroid and adrenal function and cause goitres.

pubmed.ncbi.nlm.nih.gov/350...

I would like to think you have regular follow ups by an endocrinologist :

antiloquax profile image
antiloquax in reply topennyannie

Thanks pennyannie. Sadly, no. But hopefully this GP will refer me or something.

antiloquax profile image
antiloquax

Ferritin.

Test results
pennyannie profile image
pennyannie in reply toantiloquax

I think a ferritin under 30 is classed as iron deficiency and further tests need to be run -

I had to have an endoscopy and colonoscopy before I was allowed to start supplementing:

I couldn't tolerate the NHS iron tablets and an alternative wasn't offered so I bought myself an iron bisglycinate supplement - there are several brands - which is not so harsh on the stomach nor as constipating.

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