Feeling anxious and tired: Hi, I have been... - Thyroid UK

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Feeling anxious and tired

gaellea profile image
18 Replies

Hi, I have been feeling constantly anxious with no apparent reason for the last 2 weeks. I have also started having tingling sensation in my left hand. Also feeling tired but that is nothing new.

TSH 1.3 (0.27 - 4.20)

T4 15.5 (12-22.00)

T3 3.5 (3.1 - 6.80)

B12 850 High (145 - 569)

Folate 32.6 (8.6-60.80)

HBA1C 33

Liver and renal function normal

I am on 100micro levothyroxine

Originally diagnosed with Graves 11 years ago and then Hashimoto a couple of years later.

Any advice on next step to take?

Thanks!

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gaellea profile image
gaellea
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18 Replies
SlowDragon profile image
SlowDragonAdministrator

Please add ranges on these results (figures in brackets after each result)

Until we have ranges, results are pretty meaningless

Looking like Ft4 and Ft3 are too low, but can’t be sure without range

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

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you currently taking

Where vitamin D and ferritin tested as well

Have you had coeliac blood test done

Are you on strictly gluten free diet

gaellea profile image
gaellea in reply to SlowDragon

Thank you very much SlowDragon. I have added the range. The blood test was done at 11.30am. Levo brand is Accord and always the same. I take D3 and Menopause multivitamin supplements. No coeliac test done recently but was done 3 or 4 years ago. I am not on a gluten free diet. I have a phone appointment with my doctor this afternoon, is there anything I should ask? Thank you very much.

SlowDragon profile image
SlowDragonAdministrator in reply to gaellea

FT4: 15.5 pmol/l (Range 12 - 22)

Ft4 only 35.00%

FT3: 3.5 pmol/l (Range 3.1 - 6.8)

Ft3 only 10.81%

Helpful calculator for working out percentage through range

thyroid.dopiaza.org

So results show you are under medicated and have poor conversion of Ft4 to Ft3

Most people when adequately treated on just levothyroxine will have Ft4 at least 50-60% through range and, ideally Ft3 at similar levels

First steps

1) get 25mcg dose increase in levothyroxine

Always test thyroid levels early morning, ideally before 9am to get the highest TSH (which is all most GP’s look at)

So TSH might have been around 2 at 9am

Approx how much do you weigh in kilo

guidelines on dose levothyroxine by weight

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

Also here

cks.nice.org.uk/topics/hypo...

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.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

greygoose profile image
greygoose in reply to gaellea

Multi-vits are never recommended on here. There are too many things wrong with them. But, the main problem is if they contain iron - which most of them do, that will block the absorption of almost all the other things. They also tend to contain iodine and calcium which you almost certainly don't need and can be dangerous in excess.

gaellea profile image
gaellea in reply to greygoose

Thank you very much Greygoose, I will stop the multivitamins.

greygoose profile image
greygoose in reply to gaellea

You're welcome. :)

SlowDragon profile image
SlowDragonAdministrator in reply to gaellea

Accord don’t make 25mcg tablets

So request 50mcg tablets and cut in half to get 25mcg

Multivitamins are never recommended on here

Most contain cheap poorly absorbed ingredients, and iodine (never recommended for anyone on levothyroxine unless tested and found to be deficient and under care of iodine specialist endocrinologist)

Suggest you stop multivitamins

get full iron panel test and vitamin D tested yourself

Test vitamin D twice year when supplementing

How much vitamin D are you currently taking

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...

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 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...

If testing iron, don’t take any iron supplements in the week before test.test early morning fasting and don’t eat iron rich dinner night before test

medichecks.com/products/iro...

Come back with new post once you get results

Lalatoot profile image
Lalatoot

Gaellea Anxiety was a big symptom for me both when I was hyperthyroid and then when I was undermedicated hypothyroid.Your GP will probably think that your results are ok. I would point out that TSH is not near the bottom of the range so there is room for an increase in levothyroxine as:

you are still symptomatic

FT3 is low in range

FT4 is not even half way through range

In short your thyroid hormone levels are lowl and causing symptoms.

gaellea profile image
gaellea in reply to Lalatoot

Thank you very much Lalaloot, I just had a chat with my doctor who seemed to think my result were ok within the range but she has agreed to increase my Levothyroxine. Thank you for your help.

Lalatoot profile image
Lalatoot in reply to gaellea

Glad you got an increase. I was undermedicated for 5 years and suffered anxiety and panic attacks - it was awful. What I lacked in thyroid hormones the body made up for with adrenalin so I could keep going.

SlowDragon profile image
SlowDragonAdministrator in reply to gaellea

Make sure you get FULL thyroid test

Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Most people when adequately treated will need Ft3 at least over 50% through range, often higher

Getting all four vitamins tested and at OPTIMAL Levels can help improve Ft3

SlowDragon profile image
SlowDragonAdministrator

Poor gut function with Hashimoto’s or Graves 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 a further 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

It’s ALWAYS worth trying strictly gluten free diet

As coeliac result is negative can consider trialing strictly gluten free diet for 3-6 months.

Likely to see benefits. Can take many months for brain fog to lift.

If no obvious improvement, reintroduce gluten 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.

Only make one change at a time or you can’t see what’s helping

gaellea profile image
gaellea in reply to SlowDragon

Thank you for all your detailed comments SlowDragon, it is extremely helpful. I will stop the multivitamins and have asked for a vitamin D and Iron test. I am 57 kgs. My doctor has increased my Levo by 25 with a further blood test in 3 months time. Hope it will make things better for me. Thanks again for your help.

pennyannie profile image
pennyannie

Hello Gaellea :

Interesting reading your back story :

Did you ever have the antibodies run for Graves Disease - usually shown as positive and over range TSI or TR ab ?

Hashimoto's starts in a very similar way to Graves and why it's imperative to have the unique antibodies for Graves run.

You are now hypothyroid, maybe your Graves has burnt itself out, and you are currently undermedicated.

The accepted conversion ratio when on T4 monotherapy is said to be 1 / 3.50 - 4.50 - T3/T4 with most people feeling at their best when they come in at around 4 or under.

So to find your conversion ratio you simply divide your T3 into your T4 and I'm getting yours coming in at around 4.42 so slightly out from centre.

We generally feel at our best when our T4 is in or towards the top quadrant of the range as this should in theory convert to a good level of T3 : as it is low T3 that causes the symptoms of hypothyroidism.

Currently your T4 is at only round 35% and your T3 trailing behind at around 11% and you will likely feel a lot better when on a higher dose of Levothyroxine.

No thyroid hormone replacement works well until your vitamins and minerals are up and maintained at optimal levels.

Your B12 looks a little high ?

Do you have a results and ranges for ferritin and vitamin D ?

gaellea profile image
gaellea in reply to pennyannie

Thank you very much pennyannie. To be honest I do not remember which test were done when I was diagnosed with Graves. Is there any test I should ask to monitor it now that I have Hashimoto and hypo? My B12 is high but might be due to the multivitamins I am taking. I am stopping them and will have a new blood test in 3 months. I have asked for an iron test and vitamin D. Meanwhile my doctor agreed to increase my Levo by 25mg so hope I will feel better. Thank you so much for your help.

pennyannie profile image
pennyannie in reply to gaellea

Graves is an auto immune disease that tends to wax and wane throughout one's life and though you can arrange a test for the antibodies there's little point now.

I have Graves and generally there is a referral to endocrinology and monitoring at the hospital for around a 15-18 month window as Graves is said to life threatening if not medicated.

Throughout this period there's generally a suggestion that if "" you do not do well " on the AT drug there's the alternative is a thyroidectomy or RAI thyroid ablation.

In fact I was told at my very first hospital appointment that I was to have RAI the following year, and I didn't know enough to say " No " - I was very well on the AT medication, and in fact more well then, than I am now.

Basically by taking such a drastic the medical intervention all that happens is that you still, obviously have the AI disease, but without a thyroid, it's now not a life threatening situation, and " easily managed " primary care !!!

There are many people on here who are taking AT medication long term and the most recent research is suggesting just that - though it is most likely the most expensive treatment option and likely why it's still not routinely offered by medical mainstream.

Just for interest : doubt you'll ever need to consider but:

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

The Elaine Moore Graves Disease Foundation website is the most well rounded website of all my findings - Elaine has the disease and strives to improve treatment for this poorly understood and badly treated auto immune disease.

Buddy195 profile image
Buddy195Administrator

Anxiety is definitely a symptom of having a thyroid condition for me and it flares when my medication is not optimal. I’ve also found that having B12, folate, Vit D and ferritin higher in the range also helps, as does supplementing with magnesium. It’s good to talk to others about your anxiety, either face to face or on the forum; you are not alone in having this symptom.

gaellea profile image
gaellea in reply to Buddy195

Thank you so much Buddy195, talking about anxiety has always been difficult for me but will try to get better at it. Hope you have it under control!

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