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Sorry! More test results!

Hashibegone profile image
9 Replies

Hi … this is my first post but have spent hours reading others posts and learned so much! (But forgotten most of it!!!)

I am 61 years old…was diagnosed with Hashis May(ish) 2020 and when first started taking Levo started to feel human again. I had left it for soooooo long telling myself I had a bit of anaemia or something before finally going to the docs when I could no longer function. Anyway, long story short, my GP’s now tell me I’m ok as my levels are ok! I just wish someone would tell my body the same as I feel awful! Tired, no motivation, aching arms, stiffness to most joints/muscles, nil energy levels…I can’t think of the same thing for more than 3 seconds without forgetting what I was thinking about so try not to enter into conversations, no s.term memory, and so on and so forth… just like so many of you lovely ppl! I would be so happy if anyone can point me in the right direction of what to do for myself….

Medichecks 05/07/2021

TSH 2.48 (.27-4.2)

FT4 18.6 (12-22)

FT3 4.2 (3.1 6.8)

Folate 13.3 (>2.9)

Ferritin 60 (13-150)

Active B12 58 (25.1-165)

Blood test taken before food and 24hrs after levo (75 weekdays 100 weekends)

No vitamin supplements for two weeks prior to test.

Thank you in advance for any input xx

PS… I fell asleep momentarily, about 5 times while typing this! Arrrrrrgh :-(

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SeasideSusie profile image
SeasideSusieRemembering

Hi Hashibegone

TSH 2.48 (.27-4.2)

FT4 18.6 (12-22)

FT3 4.2 (3.1 6.8)

The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges, if that is where you feel well.

Your TSH is far too high for someone on Levo and suggests that you need an increase in dose, your FT4 is 66% through it's range and your FT3 is just 30% through it's range.

I would ask your GP for a 25mcg dose increase and retest in 6-8 weeks. To support this use the following information

From GP Notebook

gpnotebook.com/simplepage.c...

Target level for TSH during thyroxine therapy

Fine tuning of the dose could be necessary in some patients

* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary

From GP online

gponline.com/endocrinology-...

Under the section

Cardiovascular changes in hypothyroidism

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

From the British Thyroid Foundation:

btf-thyroid.org/thyroid-fun...

How can blood tests be used to manage thyroid disorders?

.....

Occasionally patients only feel well if the TSH is below normal or suppressed. This is usually not harmful as long as it is not completely undetectable and/or the FT3 is clearly normal.

There are also certain patients who only feel better if the TSH is just above the reference range. Within the limits described above, it is recommended that patients and their supervising doctors set individual targets that are right for their particular circumstances.

.....

Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication 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).*"

You can obtain a copy of this article from Dionne at ThyroidUK:

tukadmin@thyroiduk.org

print it and highlight Question 6 to show your GP.

If GP is reluctant, point out that your TSH is over the recommended level and you may be one of those patients who may need your TSH at the lower end of it's range.

Folate 13.3 (>2.9)

This range is 2.9-14.5 and folate is recommended to be at least half way through range. Are you supplementing with folate/folic acid or a B Complex?

Active B12 58 (25.1-165)

Active B12 below 70 suggests testing for B12 deficiency according to Viapath at St Thomas' Hospital:

viapath.co.uk/our-tests/act...

Reference range:>70. *Between 25-70 referred for MMA

There is a link at the bottom of the page to print off the pdf to show your GP.

Do you have any signs of B12 deficiency – check here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.

Ferritin 60 (13-150)

Ferritin is recommended to be half way through range although some experts say that the optimal ferritin level for thyroid function is between 90-110 ng/ml.

You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet

bda.uk.com/resource/iron-ri...

Don't consider taking an iron supplement unless you do an iron panel, if you already have a decent level of serum iron and a good saturation percentage then taking iron tablets can push your iron level even higher, too much iron is as bad as too little.

Hashibegone profile image
Hashibegone in reply to SeasideSusie

Hi SeasideSuzie. Thank you for your reply and all it’s brilliant info…I will write down all the points I need to bring up with my doctor if I can manage to get another appointment. I will have a fight on my hands to get my dosage raised as I just know they will talk over me when trying to give my reasons. Being over 60 I need to ask for her to aim for TSH of 0.4 or just above don’t I… I have been taking Multivitamins and just checked the level of Folic acid = 200ug B1= 14ug B2=4mg Biotin =50ug Iron =10mg (and just as a btw they have iodine in them 150ug) I stopped taking them 2 weeks before my medicheck blood test. Also in the meantime, I read on here that multivitamin use can be bad for hypothyroid ppl… I would love some advice on which b complex to take also the best vitamin D to take as I feel there are so many on the market which will have fillers that may be bad for us? I know we’re not allowed to advertise on here but maybe some hints on which are best tolerated are allowed? Oh my this is all so complicated… what would we do without you fantastic ppl on here???

SeasideSusie profile image
SeasideSusieRemembering in reply to Hashibegone

Hashibegone

I will have a fight on my hands to get my dosage raised as I just know they will talk over me when trying to give my reasons.

This is the problem with phone appointments, I have a GP who does this. If you can't get a face to face appointment what I would do in your situation is send in some supporting "evidence" in advance.

Leave out the GP Notebook one as it mentions 0.4-2.5 for the TSH target and your TSH just fits within the upper limit of that range. Just send in the GP Online one which uses 0.5-2.0 plus the British Thyroid Foundation and Dr Toft items and emphasise the fact that they all mention that lower TSH is necessary for some patients and you'd like to try a higher dose of Levo and see if you feel better with a lower TSH. Say you'd like a trial to see how you get on. If the GP has got this in writing beforehand you'll save time by not having to explain it and you can just discuss having an increase, just make sure that at the start of your telephone appointment you ask the GP if they have read the information you sent in advance, explain that you sent it in beforehand to save time during the actual appointment.

Being over 60 I need to ask for her to aim for TSH of 0.4 or just above don’t I…

No, not particularly, what makes you think that? I can't see anything in those quotes that refers to that.

I have been taking Multivitamins and just checked the level of Folic acid = 200ug B1= 14ug B2=4mg Biotin =50ug Iron =10mg (and just as a btw they have iodine in them 150ug)

Multivitamins aren't recommended here. They contain too little of anything to help with low levels or deficiencies, they tend to contain the cheapest, least absorbable and wrong forms of ingredients and usually contain things we need to test for first before supplementing, eg calcium, iron, iodine.

Iodine solution used to be used to treat hypERthyroidism and can make hypOthyroidism worse. 150mcg iodine is the recommended daily intake for an adult and in the UK we can easily get this from our diets with milk, yogurt, cod, haddock, scampi, etc.

When a multi contains iron it affects the absorption of everything else, iron needs to be taken at least 2 hours away from all other supplements and medication.

I would love some advice on which b complex to take also the best vitamin D to take as I feel there are so many on the market which will have fillers that may be bad for us?

Please don't take a B Complex at the moment. You need to sort out your B12 first, you really need testing for B12 deficiency as explained above. Did you check for signs of B12 deficiency with the links I gave?

If you do not have any signs then you could supplement with a sublingual B12, one with bioavailable forms of B12. I took this one as it has two bioavailable forms - methylcobalamin and adenosylcobalamin

cytoplan.co.uk/vitamin-b12-...

We need a B Complex when supplementing with B12 as this keeps all the B vitamins in balance. I like Thorne Basic B, again it has the bioavailable forms. If you look at other brands look for the words bioavailable or bioactive and it should contain methylcobalamin and methylfolate. Be aware that if any B Complex adds Vit C then the Vit C keeps the body from using the B12 (Igennus contains Vit C). Vit C should be taken 2 hours away from Vit C.

I would imagine that just using one pot of B12 will be enough to raise your level above the 70 limit then you could just continue with the B Complex.

Vit D: 53nmol/L

This is low, only just in the adequate category. The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L.

To reach the recommended level from your current level, you could supplement with 4,000-5,000iu D3 daily.

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.

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.

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.

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

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

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.

By the way, it's fine to recommend supplement brands on the forum.

Hashibegone profile image
Hashibegone in reply to SeasideSusie

Thank you again SeasideSuzie…. I think I may have been getting confused by the second point in the GP notebook where it says about young ppl tolerating very low TSH, because it then goes on to say that ppl over 60 should have their dose reduced by 25?ugAs far as the B12 deficiency list, I do have some but definitely not many of those symptoms, I have tended to ignore them and just blame it all on my thyroid/TSH etc.

I will follow your advice closely on starting my vitamins, and retesting and do more research from your links to vitamin deficiency/use info….

I have emailed tuk and asked for Dr Tofts report and will get more info prepared to send off to the GP, good idea to send it on ahead! You made me feel better (in the nicest possible way) to know Gp’s talk over you too, someone so knowledgeable! I thought it was just because I must come over as a gibbering fool who can’t find the right words! I will leave you in peace now, but I will update in a few months. Once again, Thank you very very much!

SeasideSusie profile image
SeasideSusieRemembering in reply to Hashibegone

Hashibegone

I think I may have been getting confused by the second point in the GP notebook where it says about young ppl tolerating very low TSH, because it then goes on to say that ppl over 60 should have their dose reduced by 25?ug

Ah, OK. I hadn't read that far (or if I originally did I'd forgotten!). I pick and choose the helpful bits!

I don't see why people over 60 should have their dose reduced, we need what we need and there are studies to say that low TSH doesn't cause osteoporosis and atrial fibrilation if your GP ever comes back with that although you are a very long way from that situation.

SlowDragon profile image
SlowDragonAdministrator

was vitamin D tested

Did you miss the results off ?

What vitamin supplements are you currently taking

Have you had coeliac blood test done yet?

If not, request GP test

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...

Assuming coeliac 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...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

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.

hypothyroidmom.com/how-to-l...

Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.

Hashibegone profile image
Hashibegone in reply to SlowDragon

Hi SlowDragon! I feel so humbled that you have replied aswell as SeasideSuzie… I can’t believe, as you rightly pointed out, I left the vit D result off! It was 53 (50-200) I have replied to SeasideSuzie telling her about me taking a multivitamin. It has 20ug of vit D3. I have not had a Coeliac test ever, and must admit I keep noticing how we should all go gluten-free but I suppose I’m in denial as my guts appear to be in perfect working order and give me no known problems….and being veggie and looking at all the extra things I won’t be able to eat fills me with dread :-) however, this is where you all come in, and your massive ability to motivate ppl! I was thinking I would try very hard to get a raise in my Levo, give it 6 weeks then after testing, go on the dreaded diet and see the difference that makes? What do you think? I will do it, after all it is the universal rule! ;-) I’m determined to try my very best for improvement and getting ‘me’ back! I would just like to see the results as they happen…..Btw do you think that lowering you TPO’s slows down the destruction of the thyroid? I have seen the Italian study mentioned here before… I’ll get the coeliac test ordered tonight… no good asking my doc.

Thank you so much once again for your time in helping us

SlowDragon profile image
SlowDragonAdministrator in reply to Hashibegone

We never recommend multivitamins on here….far too little of what we need, as shown by your extremely low vitamin D and B12

Plus multivitamins contain iodine, not recommended for anyone with Hashimoto’s

As a vegetarian you will need daily B12

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

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B is an option that contain folate, but is large capsule. You can tip powder out if can’t swallow capsule

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

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...

Low B12 symptoms

b12deficiency.info/signs-an...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

As vegetarian likely to need to continue to supplement B12 continuously

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

healthunlocked.com/thyroidu...

healthline.com/nutrition/me...

SlowDragon profile image
SlowDragonAdministrator in reply to Hashibegone

So obviously vitamin D is too low

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some 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...

NHS Guidelines on vitamin D supplements

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

But with Hashimoto’s, 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

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

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

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

Calculator for working out possible dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

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...

2 good videos on magnesium

healthunlocked.com/thyroidu...

Vitamin D and Covid

Notice how much vitamin D many of these medics are taking

vitamind4all.org/letter.pdf

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