Symptoms of under active thyroid : Hi I was... - Thyroid UK

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Symptoms of under active thyroid

Lesleyclyde profile image
14 Replies

Hi I was diagnosed with under active thyroid Jan last year GP only started me on medication march this year I lack vitamin D I'm prone to losing my voice awful fatigue aching limbs stiff neck IBS symptoms brain fog I was working full time I fell asleep at work I got written warning then I forgot to wear a mask during covid in the office they sacked me I was employed for 10 years my aching limbs are the worst symptoms I waiting for assesment for pip so I might be able to work part time

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Lesleyclyde profile image
Lesleyclyde
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Haze1975 profile image
Haze1975

Where do you come from. Because in England there are rules about been sake. Is a verbal warning, a written warning last for a year, then another written warning then the sake. Unless it’s under gross misconduct? I’d don’t think they can sake you for not ware a mask. They can ask you ware is your masks. I’d would get some advice on that, and fight them. You shouldn’t of been given the sake for not warring a masks, but given a warning about it.

Lesleyclyde profile image
Lesleyclyde in reply to Haze1975

Hi they said it was gross misconduct I had 2 meeting with HR while I was suspended I was exhausted new year's eve I was ready to end it all I felt so ill but I'm taking each day as it comes x

Haze1975 profile image
Haze1975 in reply to Lesleyclyde

That’s bad. They should of took in your health problems thou. The doctors will sort it out with a bit of luck. Xx

shaws profile image
shawsAdministrator in reply to Lesleyclyde

Follow the advice of jimh111 and I hope you get lucky because you probably knew nothing about a dysfunctional thyroid gland before being diagnosed. I, myself, had never ever heard about hypothyroidism but neither did any of the 'specialists/experts' I paid who I would have expected to at least heard the 'word' hypothyroidism. Not one could diagnose me with anything at all.

I knew nothing at all myself.

jimh111 profile image
jimh111

Hypothyroidism existing for one year or more which affects daily tasks (such are being able to concentrate, stay awake, remember things) is classified as a disability under the Equalities Act. Employers have to make reasonable adjustments for the disability. I would seek advice from your trade union, Citizens Advice or elsewhere.

Lesleyclyde profile image
Lesleyclyde

Hi the GP as signed my papers for me to take my pension early before age of 55 I'm thinking about it

shaws profile image
shawsAdministrator in reply to Lesleyclyde

Why not have an early retirement? We deserve it, especially if we've not been too well. Try to negotiate a reasonable deal with your company i.e. take early retirement.

SeasideSusie profile image
SeasideSusieRemembering

Hi Lesleyclyde

I'm sorry you lost your job due to your hypothyroidism, it sounds as though you are not being properly medicated for it.

I was diagnosed with under active thyroid Jan last year GP only started me on medication march this year

Why was treatment delayed for 15 months? Why were you not treated upon diagnosis?

What were your test results upon diagnosis? What dose of Levo did your GP prescribe to start with?

I'm prone to losing my voice awful fatigue aching limbs stiff neck IBS symptoms brain fog

As you are so symptomatic it's very likely you are undermedicated.

What dose of Levo are you currently taking?

When did you have your last thyroid function test?

Please post the results (including reference ranges as these vary from lab to lab) for your last test.

If you don't have your results, see if your surgery offers online access for test results (surgeries in England should offer this but not all do).

If online access is not available, ring the surgery and ask the receptionist for a print out of your results suggesting that you will pick them up the next day if that's convenient (or maybe they can email or post a copy to you if they don't want you going to the surgery due to Covid, my surgery allows results to be picked up).

Always advised here, when having thyroid tests:

* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH

* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can 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 can give false results (most labs use biotin).

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

Do you do your tests like this?

Also, do you take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

I lack vitamin D

Were all key nutrients tested - B12, Folate and Ferritin - as well as Vit D? If so can you post these results with their reference ranges, and unit of measurement for B12.

What was your Vit D level? Can you post that result and say if unit of measurement was nmol/L or ng/L.

Are you supplementing with Vit D? If so what dose?

Lesleyclyde profile image
Lesleyclyde in reply to SeasideSusie

Hi the GP said the thyroid might correct itself so no med s were given then I felt so ill I went to AE one night I'm on 50 micrograms levothyroxine I'm due a blood test next Tue my vitamin D level was 20 I'm on 50.000 invita D3 capsules also zapain 500mg tablets 2tablets 4x daily thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Lesleyclyde

How long have you been left on just 50mcg

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

50mcg is only a starter dose

Dose is increased slowly upwards in 25mcg steps until TSH is ALWAYS under 2. Most people when adequately treated will have Ft3 and Ft4 at least 50-60% through range

Absolutely essential to regularly retest vitamin D, folate, ferritin and B12

Have you had folate, ferritin and B12 tested yet?

Vast majority of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

If not had thyroid antibodies tested yet, request they are at next test

ALL Thyroid testing should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

SeasideSusie profile image
SeasideSusieRemembering in reply to Lesleyclyde

Lesleyclyde

Sometimes a raised TSH (which is what is used to diagnose hypothyroidism) can be due to a non-thyroidal illness, so after the first raised result the test should be repeated in 2-3 months time and if still raised then it would be classed as hypothyroidism, there was no need to leave you 15 months without treatment, that's just downright cruel.

50mcg is a standard starter dose, make sure you do your next next week as I've described above. If your test is booked for later than 9am, make up a reason not to attend and rearrange it for another day when you can have it done by 9am at the latest.

A couple of days after the test, your results will be available. If you have online access then check them, if not then ring the surgery and ask for a print out. You are welcome to post your results here for comment.

I expect (hope!) you will be given an increase in your dose of Levo, it should be 25mcg and you should arrange to be retested 6-8 weeks later to check your levels again and you may need further increases.

my vitamin D level was 20 I'm on 50.000 invita D3 capsules

So this is Vit D deficiency and you will receive a total of 300,000iu D3 as loading doses, I expect you will be taking 50,000iu for 6 weeks.

Once these have been completed you will need a reduced amount so you should make sure that you are retested after you have finished the loading doses so that you know how much you should then take going forward. Most doctors, if they continue prescribing, only give 800iu daily which isn't enough. If GP wont retest then do this privately (link below) and post your new result at the time for members to suggest a new dose to bring your level up to what's recommended by the Vit D Council/the Vit D Society - which is 100-150nmol/L - 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...

As you have Vit D deficiency it's quite likely that your other key nutrients could be low or deficient. Have you had the following tested:

B12

Folate

Ferritin

If not then ask for them. We Hypos often have low nutrient levels or deficiencies and we need them all to be optimal for thyroid hormone to work, so it's essential that they are tested and any low levels addressed. Please post these results when you have them, along with their reference ranges and the unit of measurement for B12.

Have you ever had thyroid antibodies tested? I'm wondering if you might have autoimmune thyroid disease, known to patients as Hashimoto's, as low nutrient levels are very common with Hashi's.

zapain 500mg tablets 2tablets 4x daily

As I'm sure you are aware, these are paracetamol and codeine, quite strong painkillers. What condition have these been prescribed for (sorry, not being nosy, just wondering if it's related to your hypothyroidism).

Remember to take these tablets 2 hours away from your Levo.

SlowDragon profile image
SlowDragonAdministrator

Sounds like your hypothyroidism has been very poorly managed

Bloods should have been retested 6-8 weeks after first abnormal thyroid results.

If TSH was above 5 on two tests or Ft4 below range you should have been started on levothyroxine immediately

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...

See flow chart on top of page 2

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

bestpractice.bmj.com/topics...

Guidelines are just that ....guidelines.

Some people need more …….some less

healthunlocked.com/thyroidu...

Lesleyclyde profile image
Lesleyclyde in reply to SlowDragon

Hi IV been on 50 MCG since begin of march thanks

SlowDragon profile image
SlowDragonAdministrator in reply to Lesleyclyde

So bloods should have been tested after 6-8 weeks after starting

Which brand of levothyroxine are you currently taking

Many people find Levothyroxine brands are not interchangeable.

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

But for some people (usually if lactose intolerant, Teva is by far the best option)

Teva, Aristo and Glenmark are the only lactose free tablets

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Teva poll

healthunlocked.com/thyroidu...

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.

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)

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