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Dollc86 profile image
26 Replies

Hi guys,

Hope you are all well, got more bloods done from gp since after nearly 9 months of levels all over the place swinging high and horrible symtoms apparently december my level came back to normal and now bloods last week show:

Tsh 4.34 range 0.35 - 4.94

T4 14.3 range 9.0 - 19.1

He stopped doing T3 the last few times for some reason!

Anyway I know without T3 it's difficult to tell, but can I ask what ye make of the other two. I'm still waiting to see and endo privately was referred in december? Still have very low moods and bad constipation ( but constipation is life long so not sure whether that's anything to do with it)

As regards the moods, B12 is apparently fine but he hasn't checked it this time either. Vit D was 40 last time but he only put me on 800 ui a day. Range was 50 which meant I was just below.

Any information appreciated.

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Dollc86 profile image
Dollc86
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26 Replies
Jaydee1507 profile image
Jaydee1507Administrator

How do you feel?

As you have said, no FT3 result but your TSH is clearly calling for more hormone. You need a 25mcg dose increase, would insist on that from GP.

How are you doing with vitamins? I see your GP has dismissed low B12 level but can you ask a different GP at same practice? It was very low as were folate and D3. GPs get no training in vitamins so don't understand the importance of good levels. Ask GP to check for pernicious anaemia unless you are vegan/vegetarian.

GP's never give us enough D3. You need to buy a good D3 with K2 to help it go towards your bones where it is needed. Use this calc to work out how much you need to take to get your level to 100.

grassrootshealth.net/projec...

Constipation may not be a lifetime issue. Mine was sorted out with a good dose of methyfolate. Low thyroid levels like yours wont be helping either.

Dollc86 profile image
Dollc86 in reply to Jaydee1507

Hey Jaydee,

Thanks for your reply. I'm feeling very anxious but not as anxious as when i was hyper, and very low as in a bit depressed but not sure if that's all to do with the thyroid. I also seen a gasternologist for my bowel issues they did bloods and I asked them about my b12 and he said it was fine. I'm taking well woman Vitamins which seem to have a good range in it. It has about 200 D in it aswell as the 800 gp has me on. I will ask him about going back upto 100 but he may say no as that was the dose I was on when I started swinging hyper, just wanting to get the app with endo but then she might not be any good either!

Jaydee1507 profile image
Jaydee1507Administrator in reply to Dollc86

As mentioned to you previously the vitamins you are taking are not a high enough strength to really help. Try a different doctor about the B12 because that could be causing you real issues.

If our vitamin levels are not OPTIMAL then our thyroid hormone won't work well. Its really important to focus on getting the vitamins and thyroid right. Low vit levels also affect your TSH and you won't be on the right Levo dose.

With vit D you also need to be taking K2 to help your body use it the right way.

Yeswithasmile profile image
Yeswithasmile

Hi

Your ft4 is marginally over 52% of the range so you may feel better with a raise. Especially as Jaydee1507 has mentioned, your tsh is still too high.

You do really need your ft3 result too though, again mentioned below and agreed that when they say ‘vitamins are fine’ it generally means they are within range which isn’t the same thing as fine 🙄.

Low mood and constipation are common symptoms of not being optimally medicated so I’d try and get a dose raise to try but I’d also get a t3 test too if you can. Think monitormyhealth are likely the cheapest at the moment.

tattybogle profile image
tattybogle

Hi Dollc . i just did summary of results/ dose changes but lost it by accident . darn it .

anyway , following your "overmedicated with symptoms" wobble last year (which was probably covid induced in my opinion) your dose was reduced gradually to 75mcg in october as fT4 was over rnage and TSH had become supressed.

on last test 2 months ago on 75mcg , the results suggested a small dose increase may needed because TSH had come back up from being supressed to 1.8ish , and fT4 was back in range about 15 [9-19]

These latest results definitely confirm that a dose increase is needed because TSH risen further to nearly top of range ad fT4 fallen a bit ,

If you /GP feel like being cautious , then ask for an increase to halfway between 75mcg and 100mcg

didn't your B12 look rubbish last test? .... ask SlowDragon to look at vits .

Dollc86 profile image
Dollc86 in reply to tattybogle

Thank you very much for your reply, I am definitely going to ask for an increase 😊

tattybogle profile image
tattybogle in reply to Dollc86

i'd say try getting GP to give 87.5mcg initially for a few months ( 75/ 100 alternate days, or if you prefer , cut a 25 in half to get same dose each day ) as GP will be more confident to agree to this ~ and work on improving vits as per slowdragon advice at same time .. better vits should hopefully help your body use the levo better.

SlowDragon profile image
SlowDragonAdministrator

previous post

B12 159 (120 - 650)

Foliate 5.0 (3.1 - 19.9)

Both are far far too low

What vitamin supplements are you currently taking

Optimal b12 at least over 500

Optimal folate at top of range

Low B12 symptoms 

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week 

B12 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

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

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

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

about 2 weeks after starting B12…..add vitamin B complex

Low folate

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

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 recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £20 

Try iherb if they deliver to Ireland

Dollc86 profile image
Dollc86 in reply to SlowDragon

Hi SlowDragon ,

Thank you for your reply. I started to take well woman original which seem to have high enough B vitamins in them. Again this blood test gp didn't bother to check any vitamins, I'd say he hasn't a clue because he told me supplements won't do much for me. Just trying to navigate this myself which is difficult. I'm going to ask for an increase in my levo, I don't think what I'm taking has folate I'll have to check does have folic acid. And also just still taking the Vit D doctor prescribes think it's called densun 800ui, I might be better just buying one myself with a higher dose.

Again thanks for your help

SlowDragon profile image
SlowDragonAdministrator in reply to Dollc86

Multivitamins never recommended on here

They don’t have high enough levels to improve low levels

And most contain iron which you shouldn’t supplement unless you’re low in iron

And iodine not recommended for anyone on levothyroxine

 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Dollc86 profile image
Dollc86 in reply to SlowDragon

SlowDragon oh really? I'm lost so, thought of it as a one stop shop. So should I take, separate B , D and anything else you could recommend?

SlowDragon profile image
SlowDragonAdministrator in reply to Dollc86

We post about this all the time

Many, many (most?) of us on levothyroxine, especially with Hashimoto’s, need to supplement a separate vitamin D, separate vitamin B complex and separate magnesium daily

Initially many need daily B12 as well as vitamin B complex when first improving low B12

Once B12 is over 500, then (unless vegetarian or vegan) likely to be fine on just a GOOD QUALITY vitamin B complex, vitamin D and magnesium

B vitamins at least 2 hours after levothyroxine. Best taken early morning after breakfast

Vitamin D mouth spray at least an hour away from levothyroxine

Vitamin D you swallow at least 4 hours away from levothyroxine

Magnesium best bedtime

or early evening…..if taking levothyroxine at bedtime as magnesium must also be at least 4 hours away from levothyroxine

Dollc86 profile image
Dollc86 in reply to SlowDragon

SlowDragon thank you very much for being so helpful it's awful the gp's don't know any of this!

SlowDragon profile image
SlowDragonAdministrator in reply to Dollc86

Medics only test for and treat vitamin deficiencies

On levothyroxine/when hypothyroid we need GOOD vitamin levels, that’s down to us as individuals to test for and supplement to good levels

In an ideal world your GP/endo might explain that

Vitamin supplements are not pharmaceutical products and there’s little profit in them ……it’s therefore not mainstream medicine…..

Similarly, with Hashimoto’s changing diet to gluten free and/or dairy free frequently highly effective but rarely suggested, even by thyroid specialist endocrinologists

SlowDragon profile image
SlowDragonAdministrator in reply to Dollc86

last vitamin D test result

Vit D 40 (25-50 insufficient)

800iu vitamin D isn’t anywhere near high enough dose

GP should prescribe 1600iu everyday for 6 months

NHS Guidelines on dose vitamin D required

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

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

suggest you buy your own vitamin D and increase to at least 2000iu or probably 3000iu daily and retest in 3-4 months

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...

But with Hashimoto’s, improving to around 80nmol or between 100-125nmol 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...

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...

Interesting article by Dr Malcolm Kendrick on magnesium 

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator

previous posts show you have Hashimoto’s

Are you on absolutely strictly gluten free diet

If not

A trial of strictly gluten free diet is always worth doing

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

Low vitamin levels affect Thyroid hormone working 

Poor gut function 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. 

 

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 or buy test online for under £20, just to rule it out first 

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

Hashimoto’s and leaky gut often occur together

SlowDragon profile image
SlowDragonAdministrator

common in early stage Hashimoto’s to have temporary, transient hyperthyroid results and symptoms as thyroid breaks down under autoimmune attack and releases excess thyroid hormones from cells as they break down

Thyroid becomes more hypothyroid after the attack

Dollc86 profile image
Dollc86 in reply to SlowDragon

I reckon so that I had a hashis flare up and they reduced my meds to 75 but he sticking me with that, but I wonder should I go back to 100 which is what I was on before I got sick.

SlowDragon profile image
SlowDragonAdministrator in reply to Dollc86

Get full thyroid test 6-8 weeks after any dose change or brand change in levothyroxine

How long since reduced to 75mcg

Dollc86 profile image
Dollc86 in reply to SlowDragon

They put me down to 75 in September, checked in November and then checked again 2 weeks ago with above results.

SlowDragon profile image
SlowDragonAdministrator in reply to Dollc86

Tsh 4.34 range 0.35 - 4.94

Ft4 14.3 range 9.0 - 19.1

So with this result you need dose increase in levothyroxine

Which brand of levothyroxine are you currently taking

Request 25mcg dose increase back to 100mcg

Initially suggest you increase to 87.5mcg

Retest in 6-8 weeks TSH, Ft4 and Ft3

cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Retest vitamin levels in 5-6 months

Dollc86 profile image
Dollc86 in reply to SlowDragon

SlowDragon thank you, I'm in Ireland so my brand is Eltroxin. I am going to speak with my doctor to ask for an increase and see how I go. You all have been very helpful thanks a million 😊

Dollc86 profile image
Dollc86 in reply to SlowDragon

Hey,

So just an update, asked my gp for more levo because of tsh being higher then last time 4.43 range .35 to 4.94. He said no I don't think that's needed because we don't want you to swing again now that it's back to normal. He said he will check it again in a month. I also went to my aunts friend she studies in neuropathic medicine, she had told me to start b12 spray I think it's like 1200mg a day and also selenium and zinc 1 a day, she said to try these for 6 weeks. My mood it's just so low and the anxiety is creeping back in, I'm seeing a phycologist but can't help but still think all this is my thyroid! I feel I will never get better.

SlowDragon profile image
SlowDragonAdministrator in reply to Dollc86

Obviously you need dose increase

Insist on 75mcg and 100mcg alternate days

(Averaging 87.5mcg per day)

Approx how much do you weigh in kilo

Meanwhile ESSENTIAL to improve vitamin D, folate and B12

Serum B12 at least over 500

Vitamin D at least over 75nmol

Folate at least half way through range

Ferritin at least over 70

Dollc86 profile image
Dollc86 in reply to SlowDragon

Yes that's what I thought but he doesn't think so, I mean the tsh jumped from 1.88 in November to 4.43 in February! He said there isn't any signs of hypo! I weigh 52 kilos my vit b12 was only 159 and am being told its normal, how don't they have a clue they are the doctors. I'm getting so frustrated.

SlowDragon profile image
SlowDragonAdministrator in reply to Dollc86

That’s EXACTLY why there’s over 130,000 members on here

Can you see different GP

52kilo x 1.6mcg = Approx 83mcg per day

So you possibly didn’t need 100mcg everyday

Though so some people need more than guideline dose of 1.6mcg per kilo per day

ESSENTIALLY to get vitamin levels optimal

I gave you in-depth advice/recommendations for B12, vitamin B complex, vitamin D and magnesium supplements

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