Thyroid results feeling dreadful

[Holiday12345]

Hello my recen thyroid tsh is 1.6 T4 is 14 (range 9-21) (Unfortunately has breakfast before as I didn’t know I was getting blood test that day). ferritin 59, d3 56, folate 9, b12 700 (Last August antibodies 950 (ref 1-19). Sorry that’s all the testing they did for thyroid 🤦‍♀️. But I’ve been on 50mg levo since last october (tsh was 5.5). Ive recently been feeling the fatigued , tremor shaky way again doc just days fine although I hoping to get a phone appt with endo in next month or two. Doc did say you can sometimes get tremor feeling etc when numbers are good. Any advice? (Apart from that could be hormones I’m 52), b12 May be functional deficency as I was taking berrocca. Previous MMA urine test showed it was low. Many thanks

[SlowDragon Administrator]

See/contact GP for next 25mcg increase in levothyroxine

Ft4 is low in range, no Ft3 tested

Even if we don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Vitamin D is too low, but not low enough for GP to prescribe

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

Some areas will prescribe to bring levels to 75nmol

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 dose vitamin D required

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

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/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 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

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

Government recommends everyone supplement October to April

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

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

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...

Importance of vitamin D for fighting Covid

moxafrica.org/post/the-vita...

[SlowDragon Administrator]

Do yourself a favour and ditch the Berocca

Get a decent quality vitamin B complex

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

thyroidpharmacist.com/artic...

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

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

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)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Only add one supplement at a time and wait at least 2 weeks to assess any changes before adding another

[SlowDragon Administrator]

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 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

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...

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.

Why gluten intolerance can upset cortisol levels

kalishinstitute.com/blog/gl...

[Holiday12345 in reply to SlowDragon]

Hello SlowDragon thank you for the replies I’ll have a good read through it! Yes I can recommend the better you Vit D spray it’s the only thing that has nudged my level stuck at 40 no matter what (also that and going on levo) I’ve managed to get it up will keep going. The gluten thing too think I had the celiac test before and was negative but I’m wondering and past couple of months in lockdown diet has changed and eating a lot of bread that I don’t normally eat. Re the levo started last October tsh 5.5 next test 3.8 then 2.6 then last one 1.6 ... will it keep reducing on the 50mg or should the doc increase it so that it goes down quicker ? I’ve managed to get a phone appt with endo in 3 weeks. Nothing was ever mentioned about Hashimoto... is that because of high antibodies? (Although did say vaguely something about high antibodies causing a person to develop underactive thyroid eventually) From your experience does trembling feeling shaky fit in with Underactive thyroid? Many thanks for your replies.

[SlowDragon Administrator in reply to Holiday12345]

UK Doctors just call Hashimoto’s autoimmune thyroid disease...and usually completely ignore the “autoimmune” aspect ...as they don’t understand it and have no specific treatment for it

Levothyroxine dose should be increased up after each 6 weeks test (or started at full replacement dose) or increased up as fast as can be tolerated

Trembling is associated with adrenal glands. As you have been left on far too low a dose for far too long adrenal glands have to try to over compensate for lack of thyroid hormones

Daily vitamin C can help support adrenals

Or daily adrenal cocktail

stopthethyroidmadness.com/a...

As an example....if, when perfectly healthy, your own thyroid made the equivalent of 125mcg levothyroxine....and this metabolism is controlled by pituitary sending messages - TSH (Thyroid stimulating hormone)

Then as your thyroid starts to fail (usually due to autoimmune thyroid disease) ....you might get diagnosed when your thyroid has reduced output to roughly equivalent of 75mcg levothyroxine

Pituitary has noticed there’s a drop in thyroid hormones in the blood....(that’s Ft4 and, most importantly, the active hormone Ft3) ....so to try to make more thyroid hormone ...pituitary sends out stronger message to thyroid - TSH rises up

When GP starts you on 50mcg ....initially you feel a bit better ....as you have 75mcg from your own thyroid and 50mcg levothyroxine

But (here’s the bit most GP’s don’t understand)....levothyroxine doesn’t “top up” your own thyroid output.....well it does very briefly....but the pituitary very soon “sees” the levothyroxine in the blood....and TSH starts to drop

So at the end of week 6 ....TSH has dropped a lot. Your thyroid takes a rest ....has a holiday

So at this point you are now only mainly using the 50mcg levothyroxine....which is actually a dose reduction down from managing on 75mcg from your own thyroid before you started on levothyroxine

So you start to feel worse .....and are ready for next 25mcg dose increase in levothyroxine

Modern thinking ....and New NICE guidelines suggests it might actually be better to start on higher dose .....but many medics just don’t read guidelines ....and many patients can’t tolerate starting on more than 50mcg and need to increase slowly. Starting on 50mcg and stepping dose up in 25mcg steps, retesting 6-8 weeks after each increase. But we still very often need to increase up to full replacement dose

With Hashimoto’s Common to need high dose vitamin D to improve vitamin D levels. Plus magnesium is important co factor

Many people find Levothyroxine brands are not interchangeable.

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.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. 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

Teva and Aristo are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

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).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

[Holiday12345 in reply to SlowDragon]

That explains it really well I didn’t understand about the body stopping producing its own when you take tablet. That’s really helpful thank You so much for that