Will i ever feel any better?: Hi everyone im new... - Thyroid UK

Thyroid UK

118,501 members137,408 posts

Will i ever feel any better?

ntrainer78 profile image
ntrainer78

Hi everyone im new on here,thankyou for having me. Im 42yrs old and have been unwell since having my son 6yrs ago by emerg c section. I was diagnosed with thyrotoxicosis and pres carb,after 6mnths was told to stop as levels normal however my symptoms didnt improve,flu like feeling,all over pain,palpatations,insomnia,hair loss,gastro issues,weakness,joint and muscle pain,unable to walk or stand for more than a few minutes,no libido,dry skin,freq urination. Was diag by endo with Chronic widespread pain and pres copious amounts of pain meds which made my weight balloon and also mild adrenal insuffuciency and placed on hydrocortisone. 2 yrs ago began vomiting,shaking,fever,diahrea,constipation,sever dehydration,i was bed ridden for 4mnths and in an ambulance 4 times. Docs couldnt find a cause,i was unable to take any meds as vomiting so much and losts 8 stones in a yr. I was like this for 6mnths but flu like and all other symptoms remained once id recovered this mystry illness(didnt go back on pain meds or cortisone). 4 mnths ago went back to gp(yet again) feeling so ill,my weight is slowly creeping up again despite not over eating and my TSH was 6.7 so placed on 25mcg daily,i already knew i was positive for anti body and multi nodule groitre from prev endo,i was also given folic acid. All my other vits were fine as ive been supplimenting with no impro to my sympt and my hormones and adrenals were fine. My results from last wk were TSH 5.6 and normal T4,im now on 50mcg (since 2wks ago) but i feel so so ill,like im dying. Im too ill to do anything and have had no life for the last 6yrs just sat on the sofa,luckily my hubby is amazing,will i EVER feel any better? Plz help,have ordered some selenium to see if that helps.

26 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

You sound like you have really been through the mill

Did you loose a lot of blood at C section?

Standard starter dose of levothyroxine is 50mcg….so you were started very slowly, but sounds like possibly other issues going on too …Eg adrenals

Bloods should be retested 6-8 weeks after each dose increase in levothyroxine

Which brand of levothyroxine are you currently taking?

Not everyone can tolerate different brands of levothyroxine

All my other vits were fine as ive been supplimenting with no impro to my sympt and my hormones and adrenals were fine.

Meanwhile have you recently had vitamin D, folate, ferritin and B12 levels tested?

Please add most recent results and ranges

Also high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

Have you had coeliac blood test done yet?

If not get tested BEFORE considering trial on strictly gluten free diet

The aim of levothyroxine is to increase dose slowly upwards in 25mcg steps until TSH is ALWAYS under 2

Most important results are always Ft3 followed by Ft4. Ft3 at least 60%through range. Often TSH will be well under one when adequately treated, often below range

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid.

Thanks for your reply,yes my vit d was normal,same with folate,cortisone,as were my hormones and calcium etc. My folic acid was low so given tabs and my b12 was elevated,i jad been taking b12,b6,d3,ferrous sulphate,zinc and magnesium for 3 mnths prior to bloods. Have had colonoscopy and shows inflammation but nothing else and diag with IBS. I am on levothyroxine,doc said i would feel better with in a couple of weeks,4 months on and i still feel extremely ill

SlowDragon profile image
SlowDragonAdministrator in reply to ntrainer78

Normal is not a result …it just means results are within range. That’s not optimal.

Please add actual results and ranges on vitamins

IBS suggests gluten intolerance is likely

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

Low vitamin levels affect Thyroid hormone working and tend to lower TSH

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.

Why gluten intolerance can upset cortisol levels

kalishinstitute.com/blog/gl...

Thankyou,i dont know the actual levels yet and have a telephone app with doc on tues,the receptionist just said they were "acceptable NFA needed" and that b12 was 24 and tsh was 5.6 (was 6.7 b4 starting 25mcg of levothyroxin) my main symptom is pain and flu like

SlowDragon profile image
SlowDragonAdministrator in reply to ntrainer78

Never accept a receptionists verbal opinion

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Optimal vitamin levels are

Vitamin D at least around 80nmol and around 100nmol maybe better

Serum B12 at least over 500

Folate and ferritin at least half way through range

If not had all four tested, get missing ones tested alongside coeliac blood test

On levothyroxine TSH should be ALWAYS be below 2

If over 2 you will need next 25mcg dose increase in levothyroxine

Many Hashimoto’s patients only feel well with Ft3 at least 60% through range, high Ft4 and extremely low TSJ

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

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

New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"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)."

(That’s Ft3 at 58% minimum through range)

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

SlowDragon profile image
SlowDragonAdministrator in reply to ntrainer78

Which brand of levothyroxine are you currently taking ?

You won’t improve until on a decent level of levothyroxine….we have to start slowly and increase dose slowly upwards in 25mcg steps

50mcg is only standard STARTER Dose

Levothyroxine doesn’t top up failing thyroid it, it replaces it, so it’s important to get blood retested 6-8 weeks after each dose increase and to get on to high enough dose as fast as tolerated

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

bestpractice.bmj.com/topics...

Guidelines are just that ....guidelines.

Some people need more ….some need less

healthunlocked.com/thyroidu...

Extremely common to need to start on low dose and increase levothyroxine up SLOWLY.

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

So book retest for early morning at 6-8 weeks after each dose change or brand change in levothyroxine

It just says levothyroxine sodium 50 mcg tabs by company MA Holder,Teva Uk Ltd. I weigh 88 kilos (14st) and am 5.2 "

SlowDragon profile image
SlowDragonAdministrator in reply to ntrainer78

Teva brand upsets many many people

Were you on Teva when on 25mcg tablets?

Difficult at this stage to know if it’s the brand or being hypothyroid causing issues

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.

New guidelines for GP if you find it difficult/impossible to change brands

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)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Yes ive been on the same brand since started,i take upon waking with water on an empty stomach and dont have anything to eat drink or other medications for 2hrs or so. I no longer take b12 and b6 just zinc,magnesium and vit d3 at bed time. I have bloods app in 6 wks time and will be speaking to gp on tues. I will reg for online so i can see what it says

SlowDragon profile image
SlowDragonAdministrator in reply to ntrainer78

Do you suspect you might be lactose intolerant?

If yes…Teva or Aristo are lactose free

If no….request new prescription and get different brand.

Suggest you try Mercury Pharma (Advanz) as they make 25mcg, 50mcg and 100mcg tablets

SlowDragon profile image
SlowDragonAdministrator in reply to ntrainer78

So likely to need several further increases in levothyroxine.

Likely to eventually need somewhere around 125mcg or 137.5mcg levothyroxine per day …possibly a little more…or a little less

But we have to increase SLOWLY upwards

Ok thankyou so much 😊

SlowDragon profile image
SlowDragonAdministrator in reply to ntrainer78

Come back with new post once you get vitamin results

I will do,thankyou 😊

receptionist just said they were "acceptable NFA needed" and that b12 was 24 and tsh was 5.6 (was 6.7 b4 starting 25mcg of levothyroxin) my main symptom is pain and flu like

Glad you’ve found us. As others have already commented, your hypothyroidism looks very undermedicated.

Can I just check—B12 wasn’t really 24 was it? Is there a number missing?

ntrainer78 profile image
ntrainer78 in reply to Jazzw

Well thats what i thought? She said the upper range is 20 and mine was 24,i think she must be reading something wrong

Jazzw profile image
Jazzw in reply to ntrainer78

Yes I think so too. :) Would be well worth finding out what that result is too. Very very common for people with undermedicated hypothyroidism to have low B12. It might still be in range but if it’s low in range you’re likely to feel doubly awful.

I think you need natural progesterone cream you can buy it online Biovea is one I can recommend it must have progesterone usp in the ingredients

ntrainer78 profile image
ntrainer78 in reply to Lizzo30

Thankyou,docs tested my hormone levels as i thought i was maybe perimenopausal. Tests came back satisfactory levels,do u think it may help anyway?

Lizzo30 profile image
Lizzo30 in reply to ntrainer78

Yes definately - Biovea is a genuine brand - natural progesterone cream must have progesterone usp in the ingredients you can only buy it online it must be natural bio identical

Jazzw profile image
Jazzw in reply to Lizzo30

I think it’s a bit too soon to be worrying about that. As all hormones are interconnected, it’s probably best for ntrainer78 to get thyroid levels sorted first.

Lizzo30 profile image
Lizzo30 in reply to Jazzw

Postpartum hashimotos is associated with low progesterone after giving birth

Jazzw profile image
Jazzw in reply to Lizzo30

Of course it is. But correlation is not the same as causation. And there’s nothing in what the poster has said that demonstrates she actually has Hashimoto’s—you’ve made an assumption. Nothing wrong with that—we do it all the time—but you can’t say that natural progesterone is going to help without knowing far more about this situation than you do.

ntrainer78 profile image
ntrainer78 in reply to Jazzw

My anti bodies were positive when i eas first diagnosed with thyrotoxicosis 5yrs ago,im now hypo but doc hasnt said it is hashimotos but will ask him when i speak to him

Jazzw profile image
Jazzw in reply to ntrainer78

It probably is. Periods of hyper followed by hypo very often are.

ntrainer78 profile image
ntrainer78 in reply to Jazzw

The endo did say my body was attacking my thyroid gland

You may also like...