Sick of feeling rubbish: Hey guys, I’ve had... - Thyroid UK

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Sick of feeling rubbish

Milyer
Milyer

Hey guys,

I’ve had hypothyroidism since I was 7, I’m now 24 and I’m on 150mg a day. I recently had my routine bloods and apparently it looks like my dose is too high.

I’m struggling to understand this, I actually thought my dose was gonna be too low. I’ve been feeling so tired lately, struggling with work. I’ve also been getting frequent headaches and finding it really difficult to focus. Currently I’ve got these headaches that are tingly and tight in the back of my head. L

I’m going back for some more blood tests in a couple of weeks to see if it’s consistent and to see if there’s another obvious problem. (Vitamin D, B12 etc)

I’m just wondering if anyone else has experience like this and ever found out how to feel a bit better.

11 Replies
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SeasideSusie
SeasideSusieAdministrator

Milyer

Do you have the results of your tests? If so please post them with their reference ranges (ranges vary from lab to lab). If we can see your results we may be able to help.

For a full picture we need to see:

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

If you don't have your results, pop along to your surgery and ask at the reception desk for a print out, don't accept verbal or hand written results as mistakes can be made, make sure you get a print out, it's our legal right in the UK to have our results and no charge can be made for them.

Milyer
Milyer in reply to SeasideSusie

I only had my TSH and FT4 done this time. My TSH was 0.08 (should be between 0.27 and 1) and my FT4 was 22.2 (I can’t remember the minimum, maybe around 12, but the max was 22 so only .2 over)

I didn’t know you could ask for print outs, or that there were other thryoid tests to be had!

I’m having the following tests done in a couple of weeks;

C reactive protein (CRPR)

Harmantinics profile (HAEM)

Liver function tests (LFT)

Lipid profile (LP) non fasting

Thyroid function test (TSH)

Urea and electrolytes (UE)

Vitamin D (VITDP)

Full blood count (FBC)

Harmoglobin A1c (HBA1C)

SeasideSusie
SeasideSusieAdministrator in reply to Milyer

Milyer

So withTSH: 0.08 and bottom of range 0.27 and FT4: 22.2 (12- 22), it's understandable that your GP wants to reduce your dose. However, although these results say to your GP that you are overmedicated, you are only overmedicated if your FT3 is over range but doctors either ignore this or are ignorant of it.

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

What you need is your FT3 testing before you agree to any reduction in dose. As you are symptomatic then it's possible you're not converting T4 to T3 very well. T4 is a pro-hormone and converts to T3 which is the active hormone that every cell in our bodies need. It's low T3 that causes symptoms.

Conversion can be poor due to a couple of things - first of all we need to have optimal nutrient levels for good conversion to take place which is why those vitamin tests are important. Selenium and zinc can help conversion. If nutrients are all at optimal levels and we still have high FT4 and low FT3 then we are just poor converters and may benefit from the addition of T3 to our Levo.

When you have those other blood tests done in a couple of weeks, see if they'll also do B12, Folate and Ferritin. Also ask what is included in the TFT, it's doubtful it will include FT3 and thyroid antibodies but you can always ask if they'll add them, chances are the lab may not agree to do them but you can try.

Post new results when you have picked up your print out, include the reference ranges so we can interpret them, and we can try and help you further.

Milyer
Milyer in reply to SeasideSusie

Thank you so much! I will post them when I get them, and I’m definitely going to mention t3 to my doctor next time. It sounds like a few people are on doses of this and I didn’t even realise it was a thing!

SlowDragon
SlowDragonAdministrator in reply to Milyer

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

Come back with new post once you get results and ranges and members can advise on next steps

Milyer
Milyer in reply to SeasideSusie

Update these are all out of the normal range:

Ferritin level is 10 ug/L (15.0-150.0)

TSH level is still 0.07 mlU/L 0.27-4.2)

Vitamin D is 43.0 nmol/L (50-125)

Serum c reactive protein is 7.2 mg/L (0.0-5.0)

Mean cell haemoglobin concentration 315 g/L (335.0-370.0)

My T4 level is 21.1 pmol/L ( 12.0-22.0)

SeasideSusie
SeasideSusieAdministrator in reply to Milyer

Milyer

Ferritin level is 10 ug/L (15.0-150.0)

Mean cell haemoglobin concentration 315 g/L (335.0-370.0)

For a full picture you need an iron panel (serum iron, ferritin, transferrin saturation % and Total Iron Binding Capacity) plus full blood count which includes Total White Cell Count, Haemoglobin estimation, Platelet count, Red Blood Cell count, Haematocrit, Mean Corpuscular Volume (MCV), Mean Corpuscular Haemoglobin (MCH), Red Blood Cell distribution width, Neutrophil/Lymphocyte/Monocyte/Esoinophil/Basophil Counts, plus the MCHC you've had done. From the two tests you posted results for these show:

Ferritin is below range. Low ferritin can suggest iron deficiency anaemia.

MCHC is below range. Low MCHC can suggest that red blood cells don't have enough haemoglobin and a lack of haemoglobin can suggest anaemia.

You should go back to your GP to discuss all this.

You can read about iron deficiency anaemia here to see if any of this is familiar:

nhsinform.scot/illnesses-an...

With a ferritin level of 10 there is no way that thyroid hormone can work properly, it needs to be 70+ (although your GP wont agree with this, they just like to see levels anywhere within a range).

Vitamin D is 43.0 nmol/L (50-125) = 17.2ng/ml

This is low, in the Insufficiency category. Your GP may prescribe low dose D3 to raise your level but once it reaches 50 he will be satisfied. However, even 50nmol/L is not enough so you may be better dealing with this yourself.

The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml).

To reach the recommended level from your current level, based on the Vit D Council's suggestions you could supplement with 4,900iu D3 daily (nearest is 5,000iu)

vitamindcouncil.org/i-teste...

Retest after 3 months.

Once you've reached the recommended level then you'll need a maintenance dose 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. 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/

Your GP won't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and 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.

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 tablets/capsules/softgels, no necessity if using an oral spray

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. 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 tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

afibbers.org/magnesium.html

Check out the other cofactors too (some of which can be obtained from food).

TSH level is still 0.07 mlU/L 0.27-4.2)

My T4 level is 21.1 pmol/L ( 12.0-22.0)

I take it these are your new thyroid results. As previously mentioned you need

TSH

FT4

FT3

Thyroid antibodies

No change in your dose of Levo should be made until you have FT3 tested at the same time as TSH and FT4 - Dr Toft's article quoted above explains this.

As you have such poor Ferritin and Vit D results, you also need B12 and folate testing as previously mentioned. You need the thyroid antibodies testing to see if you have Hashimoto's (autoimmune thyroid disease) which is a cause of poor nutrient levels.

If you can't get all these tests done with your GP then seriously consider doing one of the private tests mentioned above.

Serum c reactive protein is 7.2 mg/L (0.0-5.0)

This is an inflammation marker. Inflammation or infection at the time of the test can cause this to be raised. It can also be raised due to Hashimoto's, another reason to get thyroid antibodies tested - both Thyroid Peroxidase (TPO) and Thyroblobulin (Tg) antibodies.

It would be best to know if you have Hashi's before recommending a D3 supplement. Normally an oil based softgel such as Doctor's Best is very good for raising Vit D level and has superior absorption over tablets and capsules. When Hashi's is present then better absorption may be obtained from an oral spray (eg BetterYou) or sublingual liquid as these are absorbed through the mucous membranes in the oral cavity. However, if you wish to start supplementing D3 straight away, the oil based softgels should be OK. Don't forget D3's important cofactors mentioned above.

Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.

Milyer
Milyer in reply to SeasideSusie

Thanks so much for the information.

Ok so i did have more than this done, these were the only ones out of range.

My full results are as follows:

Urea and Electrolytes:

Serum sodium level 141 [133-146]

Serum potassium level 4.1 [3.5-5.3]

Serum urea level 4.1 [2.5-7.8]

Liver function tests:

Serum total protein level 73 [60-80]

Serum total bilirupin level 4 [0.0-21.0]

serum alanine aminotransferase level 11 [0.0-33.0]

serum globulin level 30 [18.0-36.0]

Serum lipid levels: (no ranges given)

Serum triglyceride levels 1.3 mmol/L

Serum cholesterol level 6.4 mmol/L

Serum HDL cholesterol 2.07 mmol/L

Serum cholesterol/HDL ration 3.1

serum non high density lipoprotein cholesterol 4.3 mmol/L

Blood heamatininc levels:

Serum folate level 6.3 ug/L [deficient if <3.9]

serum ferritin level 10 [15.0-150.0]

serum vitamin b12 level 328ng/L [197.0-771.0]

Thyroid function test:

Serum TSH level 0.07 [0.27 -4.2]

serum free T4 21.1 [12.0-22.0]

Vitamin D:

Serum vitamin D level 43.0 [50-125]

Routine biochemistry:

serum c reactive protein level 7.2 [0.0-5.0]

eGFR using creatinine per 1.73 sqm >90ml/min/1.73m^2

serum creatinine level 62 [ 44.0-80.0]

serum albumin level 43 [35.0-50.0]

serum calcium level 2.30 [2.2-2.6]

adjusted calcium concentration 2.30 [2.2-2.6]

inorganic phosphate level 1.26 [0.8-1.5]

alkaline phosphatase level 67 [30.0-130.0]

Haemoglobin A1c level

A1c level IFCC standardised 33 [19.0-47.0]

Full blood count:

Haemoglobin concentration 120 [110-147]

total white blood cell count 6.4 [3.5-9.5]

platlet count observation 301 [150-400]

RBC count 4.38 [3.75-5.0]

mean cell volume 87 [80-98.1]

haemotocrit 0.38 [0.32-0.43]

mean cell haemoglobin level 27.4 [27.0-33.0]

mean cell haemoglobin concentration 315 [335-370]

neutrophil count 2.83 [1.7-6.5]

lymphocyte count 2.44 [1.0-3.0]

monocyte count 0.66 [0.25-1.0]

eosinophil count 0.38 [0.04-0.5]

basophil count 0.05 [0.0-0.25]

automated nrbc 0.0

I mentioned T3 to my doctor and he basically said that TSH and T4 are used together to give us a picture, so that was a dead end.

He's reduced my dose to 125mg from 150mg as he says i'm thyrotoxic and that's whats making me feel so unwell. As well as fatigue from low iron stores and low vitamin D. I'm having a blood test in a couple of months to check my TSH and T4 levels again.

I'm not entirely sure what to do, i know you can get T3 done private for about £30.

My partner thinks i should wait a couple of months to see if things stable out and i feel better. Will my T3 levels change with the amount of thyroxine i'm on?

SeasideSusie
SeasideSusieAdministrator in reply to Milyer

Milyer

Serum folate level 6.3 ug/L [deficient if <3.9]

Although this is over the low level, this is still low. I'd want mine in double figures.

I do a full thyroid/vitamin panel every November with Blue Horizon. Last year my folate result with them was:

35.2 (8.83-60.8)

and 5 weeks before it was tested on the NHS and was:

17.1 >3.00

When a proper range is used it's recommended that folate should be at least half way through it's range. Mine was with Blue Horizon so at 17.1 with the NHS I consider that to be good, so you can see why I think yours is on the low side.

serum vitamin b12 level 328ng/L [197.0-771.0] - ng/L is the same as pg/ml

According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

So yours is low although your GP wont agree because it's within range (that's all they look for, they are not taught nutrition so in range is good enough for them, they have no concept of optimal levels). Many people with Total B12 in the 300s have needed to start B12 injections. You may want to check for signs of B12 deficiency here:

b12deficiency.info/signs-an...

and if you have any list them to discuss with your GP and ask for further testing for B12 deficiency/pernicious anaemia.

The test you've had is Total B12 and it's not particularly good. A better test is Active B12 which tests the B12 which is available to be taken up by the cells, not the total amount of B12. You probably wont get that done on the NHS but you can do it with Medichecks for £39 (less 10% discount with code THYROIDUK)

medichecks.com/vitamin-b12-...

Active B12 below 70 suggests testing for B12 deficiency.

If you do not have signs of B12 deficiency then a good quality B Complex will help raise your B12 and folate levels. Consider Thorne Basic B or Igennus Super B, both contain the bioavailable forms of active ingredients. Avoid cheap B Complex supplements containing folic acid and cyanocobalamin, go for melthylfolate and methylcobalamin.

Serum vitamin D level 43.0 [50-125]

Suggestions given in previous post to improve this.

serum ferritin level 10 [15.0-150.0]

mean cell haemoglobin concentration 315 [335-370]

The rest of your full blood count doesn't suggest iron deficiency anaemia.

Was Serum Iron tested?

You have low iron store (ferritin) so you need to know serum iron and there must be a reason for below range Mean Cell Haemoglobin Concentration so you need to discuss this all with your GP.

Other results in range and don't throw up any red flags.

I mentioned T3 to my doctor and he basically said that TSH and T4 are used together to give us a picture, so that was a dead end.

That's because they don't understand enough about hypothyroidism. It's T3 that is the most important hormone, the active hormone that every cell in our bodies need and low T3 causes symptoms. They are just not taught enough about thyroid disease to understand this. Even most endocrinologists are diabetes specialists and know very little about thyroid disease.

Serum TSH level 0.07 [0.27 -4.2]

serum free T4 21.1 [12.0-22.0]

He's reduced my dose to 125mg from 150mg as he says i'm thyrotoxic and that's whats making me feel so unwell.

You are not thyrotoxic. Thyrotoxicosis is where there is too much thyroid hormone in the blood, usually caused by overactive thyroid or Graves disease. Occasionally it's because a patient is taking too much thyroid hormone replacement, i.e. overmedicated. However, you are not overmedicated. This can only be proved if FT3 is tested at the same time as TSH and FT4. If FT3 is over range you are overmedicated. If it isn't then you're not. Your GP is going purely by your low TSH, which is what they are taught - "TSH is the only thing you need to consider, anywhere in range is fine, below range the patient is overmedicated". This is wrong. Look back at the quote from Dr Toft I gave in a previous reply further up the thread.

Unfortunately, doctors are brainwashed into thinking testing FT3 is irrelevant and dosing by TSH alone is keeping many patients unwell. This is why there are hundreds of us here do private tests to get a full picture and why some of us self medicate, it's the only way we can be well.

By reducing your Levo to 125mcg he is trying to get your TSH into range. What it will do, however, is lower your FT4 which in turn will lower whatever your FT3 level is (T4 converts to T3) and you will become even more unwell.

Will my T3 levels change with the amount of thyroxine i'm on?

Very likely. As your FT4 lowers then there will be less T4 to convert to T3.

I'm having a blood test in a couple of months to check my TSH and T4 levels again.

I'm not entirely sure what to do, i know you can get T3 done private for about £30.

Do not do FT3 test alone, it must be done at the same time as TSH and FT4.

If you use Medichecks FT3 alone costs £29. TSH/FT4/FT3 (Thyroid Monitoring test)costs £39. If you've never had thyroid antibodies tested then it would be a good idea to get those tested too and the Thyroid Check Plus does TSH/FT4/FT3/TPO and Tg antibodies and costs £49 currently as it's on special offer, normally it's £59.

All Medichecks tests can be purchased with code THYROIDUK for 10% discount if not already on special offer.

My partner thinks i should wait a couple of months to see if things stable out and i feel better.

I don't think you will without knowing if you have any further problems the full thyroid panel may show.

I'm not entirely sure what to do

It has to be your choice, but both SlowDragon and myself have pointed out the importance of full testing and it's absolutely essential to test FT3 along with the others.

When doing thyroid tests, we advise:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks 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 will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).

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

If you order more than one test from Medichecks, do a separate order for each test, that way you'll get a return envelope for each individual test and can do them when you want to. If you make one order for multiple tests you will get one return envelope as they will expect you to do them on the same day and return together and they may say you need a venous blood draw rather than fingerprick tests due to the amount of blood needed for multiple tests.

Hi, it happened to me. The higher the dose the more tired and anxious/depressed you will feel . It's very tricky. It would be best to lower the dose and add t3.

Milyer
Milyer in reply to hipolion

Thank you for your advice. Going to talk to my doctor about t3 next time and see if it’s something they’ll test.

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