Feel rotten all the time: Hello you great people... - Thyroid UK

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Feel rotten all the time

Summerlove profile image
21 Replies

Hello you great people out there.

Could you advise. Diagnosed hypothyroid 2016 been on Levo 50mcg for most of it. I know you will say that’s too low. My TSH 1.65 (0.:5-4.94) T3 3.85 (3.1-6.8) Free thyroxine 18.4 (12-22) the T3 & Free T4 done via medichecks I have learnt from here my T3 is low ? Poor conversion?

Symptomatic, brittle nails, tinnitus, aches & pains, pains in calves wake me at night, dry eyes, skin, constipation, high cholesterol 5.8 and HBa1c 38 but has been as high as 42

I don’t drink, don’t smoke and walk 10,000 steps a day I am 5 years post menopause with a BMI of 20 I have tremendous anxiety which I never had before

My recent concern is my FBC

My lymphocytes are always low, 1.47 (1.50-4.50)

In the past I’ve had low MCHC, low folate, low RBC but never all at same time. Currently my Haemocrit is low 0.36 (0.37-0.47)

I have tried ferrous sulphate in the past but after a week I feel agitated apparently this can happen

My Vit D is always insufficient B12 middle of range & ferritin same

Does anyone have any ideas why I feel rotten with nausea most days I would be most grateful

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Summerlove
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SeasideSusie profile image
SeasideSusieRemembering

Summerlove

the T3 & Free T4 done via medichecks

What was the TSH when the FT3 and FT4 were done? You can't take one result from one test and the other results from a different test, they all have to be done from the same blood draw to make any sense.

When you do your thyroid tests, do you do them as we advise:

* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH

* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

Low lymphocytes can suggest an infection amongst other things, whether yours are low enough for that I don't know.

Low haematocrit can suggest anaemia, but is 0.01 below the range low enough for that, I don't know.

Have you discussed these with your GP?

My Vit D is always insufficient B12 middle of range & ferritin same

So what have you done to address the insufficient Vit D?

What are the results/reference ranges for these?

Summerlove profile image
Summerlove in reply to SeasideSusie

Hi there Thank you

My TSH taken at the time with Medichecks was 3.23 (0.27-4.2)

6 weeks later with GP it was lower.

I had bloods as you recommend and do not take biotin

I have taken vit D 10mcg but to be honest I do not take it all the time.

Haven’t discussed results with GP

Take Levo same time every day on empty stomach etc

SlowDragon profile image
SlowDragonAdministrator in reply to Summerlove

Please add actual results and ranges on vitamin D, folate, ferritin and B12

On levothyroxine we always need OPTIMAL vitamin levels

Being under medicated for thyroid, results in low vitamin levels

Low vitamin levels tend to lower TSH as low vitamin levels results in poor conversion

Was GP test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

See GP and Request 25mcg dose increase in levothyroxine

Meanwhile you need to work on improving vitamin levels

Have you had thyroid antibodies tested?

Anxiety is common hypothyroid symptom

Summerlove profile image
Summerlove in reply to SlowDragon

Thank youB12 103 (37.5-150)

Ferritin 133 (13-150)

Vit D 42 (50-200)

Thyroglobulin antibodies 135 (<115)

Thyroid Peroxidase 138 (<34)

March 2022

Yes tests early as recommended

SlowDragon profile image
SlowDragonAdministrator in reply to Summerlove

Ferritin is good, but can be deceiving…as inflammation can raise ferritin and iron levels can be low

Might be worth doing full iron panel test

Iron panel test should be done fasting early morning, and don’t eat iron rich meal night before test

Vitamin D needs improving to at least around 80nmol and around 100nmol maybe better

GP should prescribe 1600iu everyday for 6 months

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But likely to need at least 2000iu-3000iu daily as you have thyroid disease

GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7. One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Roadrunnergreg profile image
Roadrunnergreg in reply to Summerlove

Here's an excellent presentation on vitamin D youtu.be/NuWC2d0mTbo

By some of your other symptoms, do you have say candida Lyme etc, also do you have stomach/digestive issues, if so you're likely low in Stomach Acid and Digestuve Enzymes, even with a healthy gut digestion can take upto 60% of your/our energy alone never mind anything else..

This is on top of slowdragons comments

Hope that helps

SeasideSusie profile image
SeasideSusieRemembering in reply to Summerlove

Summerlove

My TSH taken at the time with Medichecks was 3.23 (0.27-4.2)

T3 3.85 (3.1-6.8)

Free thyroxine 18.4 (12-22)

So from your Medichecks test we have the above. The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges. Your TSH is too high, your FT4 is 64% through range (room for improvement) and your FT3 is a mere 20.27%

Calculator here: thyroid.dopiaza.org/

We can't tell about conversion until your TSH is below 1 with the highest possible FT4, and optimal nutrient levels, so for now the most obvious step is to increase your Levo dose. 50mcg is a starter dose, if you have been on this most of the time since 2016, what dose changes have you had and what results were they based on?

6 weeks later with GP it was lower.

With test done under exact same circumstances as the Medichecks test and as outlined above?

Have you had thyroid antibodies tested?

I have taken vit D 10mcg but to be honest I do not take it all the time.

10mcg = 400iu. This will not raise an insufficient level. It's a child's dose, it's not enough to raise the level of a sunburnt flea. Even 800iu is only a maintenance dose for someone with a decent level already.

Have you got the results/ranges for all your nutrients?

Summerlove profile image
Summerlove in reply to SeasideSusie

Thanks have posted ranges

SeasideSusie profile image
SeasideSusieRemembering in reply to Summerlove

March 2022

B12 103 (37.5-150)

This is a good result, we suggest 100 plus for Active B12.

Ferritin 133 (13-150)

This is a good result providing there is no inflammation or infection present. It's always a good idea to have CRP tested when testing ferritin as CRP is an inflammation marker and ferritin can be raised when inflammation or infection is present. Ferritin is recommended to be half way through range although some experts say the optimal ferritin level for thyroid function is 90-110ug/L.

Vit D 42 (50-200)

This is very low. The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L.

To reach the recommended level from your current level, you could supplement with 4,000-5,000iu D3 daily and you'll need to ensure you take it regularly. Your 10mcg/400iu is of no use.

Retest after 3 months.

Once you've reached the recommended level then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.

D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc. 90-100mcg K2-MK7 is enough for up to 10,000iu D3.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.

For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.

For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.

If looking for a combined D3/K2 supplement, this one has 3,000iu D3 and 50mcg K2-MK7. The company has told me the K2-MK7 is the Trans form

natureprovides.com/collecti...

It may also be available on Amazon

Magnesium helps D3 to work. We need magnesium so that the body utilises D3, it's required to convert Vit D into it's active form, and large doses of D3 can induce depletion of magnesium. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

Thyroglobulin antibodies 135 (<115)

Thyroid Peroxidase 138 (<34)

These raised antibodies confirm autoimmune thyoid disease, aka Hashimoto's, which is where the immune system attacks and gradually destroys the thyroid, this is the most common cause of hypothyroidism.

Fluctuations in symptoms and test results are common with Hashi's which is why you've had a different result with your GP test.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.

If your test was done with Medichecks, was CRP included? Hashi's can cause inflammation which would be reflected in the CRP result.

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies and may be why your Vit D is low.

Summerlove profile image
Summerlove in reply to SeasideSusie

Thank youCRP 0.42 ( 0-5)

I will try some K2 as you suggest.

SeasideSusie profile image
SeasideSusieRemembering in reply to Summerlove

So no inflammation, therefore your ferritin is a good result.

It's not a case of trying some K2, it wont do anything to your Vit D level, it has a specific job to do regarding calcium. You need far, far more D3 than you have been taking and you need to take it daily without fail, all outlined in my reply above.

Summerlove profile image
Summerlove in reply to SeasideSusie

Thank you l meant I will buy some K2 along with D3 as you suggest. I have never had K2 before It’s all been very helpful

shaws profile image
shawsAdministrator

If you take B12 supplements I hope the GP first made sure you do not have 'pernicious anaemia'. The reason is that if you have P.A. you have to have regular B12 injections for life because your stomach will have changed and you cannot absorb B12 from food.

JAmanda profile image
JAmanda

I find I have to really work hard to get up and keep up my folate, magnesium etc. so I have to religiously supplement and carefully take t4 and t3 well spaced from vitamins and food etc. it’s a job! And I take a fair amount of meds to get my T3 high in range. All of this has meant my energy levels are pretty perfect. Got annoying pain issues still but I can go out in the evening and have fun and live my life.

Workingitout profile image
Workingitout in reply to JAmanda

I have found joint pain is linked with eating white potatoes for me. I avoid nightshades such as these, peppers, aubergine, tomatoes etc. Might be worth a try to see if it helps?

JAmanda profile image
JAmanda in reply to Workingitout

Interesting, thanks.

Ajva profile image
Ajva

That’s a very low starting dose of levo. You should not be left on that for years. I would go back to your Dr and get an increase as most your levels are ok but could do with another increase to 75mg. Your t3 and t4 could do with a bit more medication to raise them.

53plus profile image
53plus

Summer love

I don’t often post but I used too feel exhausted all the time I started to take Co-Enzyme Q10 with vitamin B1 started on 50mg now take 100mg day really helped me. And I use supermarket brand in fact found the best (for me) from Wilko (in Uk)

Summerlove profile image
Summerlove in reply to 53plus

Ah thank you for that

silverbelle51 profile image
silverbelle51

I can't address most of what you have posted , but has anyone even considered it might be your Adrenal Gland and not your thyroid. I have a valued friend who works in impressive places who told me when I too was struggling that often the Adrenal is ignored when it should be first considered because that greatly impacts the thyroid. I am on the way to resolving my issues, so I am sharing for your consideration.

Ave-Fenix profile image
Ave-Fenix

Hi, I'm Vivian, your free T4 Is too high! Maybe you can be suffering with hipertiroidism, or Graves. Be careful go to tour doc. for further testa to confirm what I suspect.

Bye.

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