21 Sep 2021
TSH
21.3 mIU/L Range: 0.27 - 4.2 R
Free T3
2.6 pmol/L Range: 3.1 - 6.8
Free Thyroxine
15.2 pmol/l Range: 12 - 22
Thyroglobulin Antibodies
>4,000 IU/mL Range: 0 - 115 R
Thyroid Peroxidase Antibodies
200 IU/mL Range: 0 - 34 R
Folate - Serum
4.7 ug/L Range: > 2.9 R
Vitamin B12 - Active
193 pmol/L Range: 25.1 - 165
Vitamin D
123 nmol/L Range: 50 - 200 R
Ferritin
158 ug/L Range: 30 - 400
CRP HS (Inflamation)
1.5 mg/l Range: 0 - 5 R
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Welcome to the forum
Are you currently diagnosed as hypothyroid and taking any levothyroxine?
If yes, how much levothyroxine are you currently taking
See GP
You will need starting on levothyroxine (or dose increase in levothyroxine if already taking)
Standard starter dose of levothyroxine when over 65 years old is 25mcg
Bloods should be retested 6-8 weeks after each dose increase
Dose levothyroxine is increased slowly upwards in 25mcg steps until TSH is always under 2
Most people when adequately treated will have Ft4 in top 1/4 of range and Ft3 at least 50% through range
High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Have you had coeliac blood test done yet
Or are you already on strictly gluten free diet
I've been on Levo for 13 yrs okay. I take 100mg daily and it doesn't work. I've done everything you've mentioned.
It's not coeliac, it's not gluten. Simply put, Levo doesn't work and never has done.
Well 100mcg isn’t very high dose
How much do you weigh in kilo
Guidelines on dose levothyroxine by weight is at least 1.6mcg per kilo per day
As a male you’re likely under medicated
These results certainly suggest you are
Was test done after minimum 6-8 weeks on same brand levothyroxine everyday, and always taking levothyroxine on empty stomach and then nothing apart from water for at least an hour after
Which brand of levothyroxine do you normally take
No other medications or supplements within 2 hours
What other medications are you currently taking, if any
What vitamin supplements?
See GP for 25mcg dose increase in levothyroxine
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Likely to need further increase in levothyroxine after next blood test
100mcg of Levo is the max, over that and I get heart palpations. But the real issue is that Levothyroxine doesn't work and never has at any dose. My body doesn't convert sufficient T4 into T3, so your raft of questions is kinda redundant and most surely, my GP wouldn't even know to ask them! But I will tell you that I've always been underweight for my height (or maybe just small-boned), so something else is going on, most likely low cortisol resulting from extreme stress I went through some 20 years ago when I first experienced (in hindsight) hypothyroid symptoms).
Thus my queries here have been about alternatives like T3 (I can't afford NDTs unfortunately, my preferred choice, equvilent doses, reliable sources (which is why I put the blood results in the existing thread).
Have you tried splitting levothyroxine into 2 smaller doses waking and bedtime
Have you had cortisol and DHEA levels tested
regeneruslabs.com/products/...
cdn.shopify.com/s/files/1/0...
Or done Dio2 gene test
thyroiduk.org/deiodinase-2-...
Regenerus not currently testing Dio2 until later this month
There are endo’s who will prescribe T3 alongside levothyroxine
Have you tried T3?
Yes, I'm waiting for a cortisol test to arrive. A couple of yrs ago I managed to see an endo at St. Thomas' Hospital, here in London and what a complete waste of time that was!
BTW, I weigh around 64 kilos and am 5' - 10" BMI = 23 (if you believe in this kind of thing).
So if you had perfect gut function, great absorption and optimal vitamin levels, 100mcg levothyroxine might be high enough dose
Lactose intolerance often results in needing higher dose that typical
Since 100mcg levothyroxine clearly isn’t high enough dose you need to look at gut and malabsorption issues
academic.oup.com/edrv/artic...
Perhaps trialing liquid levothyroxine too via a recommended thyroid specialist endocrinologist
Alongside adding T3
"Lactose intolerance often results in needing higher dose that typical
Since 100mcg levothyroxine clearly isn’t high enough dose you need to look at gut and malabsorption issues "
I'm not lactose intolerant and whatever the current state of my gut, I've had hypothyroidism for 13 years and as I've said (for the umpteenth time) Levo has never worked. I have the same symptoms now as 13 years ago, namely no cold tolerance, a wild metabolism, dry skin, brittle nails, dry hair, plus no doubt a bunch more off the list. I might add, that as an experiment, a few months ago, I stopped taking the Levothyroxine for 6 weeks and the only change was I felt the cold even more so.
'Recommended thyroid specialist'? What's that? Shurely you jest (privately it would cost close to £500 as a DOWNPAYMENT!!)
Initial consultation is £250
Before consultation email over most recent results
A spreadsheet of all previous results and ranges
Plus short summary of thyroid journey so far
Private prescription enables access to Thybon Henning 20mcg tablets T3 at 50p per tablet
Typical dose of T3 is 2 or 3 x 5mcg dose per day
That’s around £11 per month
'Initial consultation is £250'? With whom? That's not the number I got when I made inquiries a couple of months ago and in any case, I don't have a 'spare' £250. As to T3, I've not found it in 5mcg doses, the smallest being 20mcg. But assume I take the dose you mention, how does that effect my Levothyroxine dose?
Because 5mcg is much more expensive most people get 20mcg tablets and cut into 1/4’s (5mcg)
Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
I am UNABLE to get my GP to send me to an endo, I've already stated that. Have you no idea what state the NHS is in? Private endo, I've already said I can't afford it.
Have you ever tried strictly gluten free diet?
Have you considered dairy or lactose intolerance as possible issues
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
bestpractice.bmj.com/topics...
Guidelines are just that ....guidelines. Some people need more some less
healthunlocked.com/thyroidu...
Been there, done that. None of the above.
Which brand of levothyroxine suits you best?
You might find my profile info helpful
Like many hashimoto’s patients, I have found adding SMALL dose T3 alongside levothyroxine is transformative
But vitamins need to be optimal first
And any food intolerances dealt with
I have no control over the brand and never have done and in any case, it makes absolutely no difference. My vitamins are fine, I have no food intolerances, so perhaps a mix of Levo and T3?
Different brands of levothyroxine are not bio equivalent
100mcg in one brand will give different results from 100mcg in another brand
Many, many people find different brands are not interchangeable
New guidelines for GP if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
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).
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, or Aristo (100mcg only) are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
beware 25mcg Northstar is Teva
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Posts that mention Teva
healthunlocked.com/search/p...
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.
GP can write specific brand on all future prescriptions
Watch out for brand change when dose is increased or at repeat prescription.
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, 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
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Bloody hell! Is this all necessary? As I said, I have no control over which Levo I'm prescribed, so going through all that is redundant, especially now when I can't even get an appointment for a (useless) GP.
Work out which brand levothyroxine suits you best and only accept that brand
Get GP to add note stating which brand on all prescriptions
If pharmacy is unhelpful, take prescription elsewhere
Extremely common to have to only get one brand levothyroxine
You don't think I've already tried that? And tried it for years, through 3 different GP practices.
Print out Government guidelines and get brand you want added to all your future levothyroxine prescriptions
gov.uk/drug-safety-update/l...
Small independent pharmacies are often more helpful
That's the problem; they're guidelines only. I don't know what planet you live on but it's clearly not the same one I do.
Government guidelines only issued this year ….because so many patients MUST have same brand
Personally I have always ensured I have exactly same brand for 25 years….it is perfectly possible
Might need to go to several different pharmacies before getting prescription
It doesn't work that way!! Go to different pharmacies? Demand the same brand? Like I said, what planet are you living?
Flaco, 'It doesn't work that way!! Go to different pharmacies? Demand the same brand? Like I said, what planet are you living?'
You absolutely CAN go to different pharmacies and request whichever brand suits you best. Many, many thyroid patients do just that and arrange with their local pharmacy to always fulfil their prescription with their preferred brand.
Hidden Several of your replies to SlowDragon have been really quite rude and on the aggressive side. SlowDragon has been extremely patient and tried hard to help you.
If you don't want the help being offered, simply refrain from posting and commenting please.
SeasideSusie
Fair enough. I just don't like being bombarded with 'facts'. Yes, agreed I won't bother any more.
If you haven’t tried strictly gluten free diet, you wouldn’t know if it might help or not
Same applies to lactose intolerance
The only way to know if you are gluten or lactose intolerant is to trial strictly gluten free and/or dairy free diet
I was utterly astonished to find I was gluten intolerant
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
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.
88% benefit from strictly gluten free diet
thyroidpharmacist.com/artic...
Going gluten free is a strategy that everyone with Hashimoto’s should try. In some cases, we see a complete remission of the condition; in other cases (88% of the time), the person feels significantly better in terms of bloating, diarrhea, energy, weight, constipation, stomach pain, reflux, hair regrowth, and anxiety.
todaysdietitian.com/newarch...
Many clinicians report that eating a gluten-free diet may help improve thyroid function in nonceliac gluten intolerance. “Getting gluten out is primary for patients with Hashimoto’s, even without celiac disease,”
Lactose intolerance is also very common with Hashimoto's
ncbi.nlm.nih.gov/pubmed/240...
Lactose intolerance was diagnosed in 75.9 % of the patients with HT
read.qxmd.com/read/24796930...
These findings show that lactose intolerance significantly increased the need for oral T4 in hypothyroid patients.
I've been tested coeliac, gluten and christ knows what else.
There’s no test for gluten intolerance
There’s Only a test for coeliac
5% of Hashimoto’s patients are coeliac
An additional 80% of Hashimoto’s patients find gluten free diet is helpful, or in many cases absolutely astounding improvement
The ONLY way to know if that includes you is to try it
Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
TSH obviously far too high
Ft4 too low
Ft3 below range
Folate low
What vitamin supplements are you currently taking
Yes and yes. Folate is within range. Vitamin D3/K2, zinc, magnesium L threonate, vit C, B12 every 3-4 days.
Is this Medichecks test?
Folate might be in range but it’s low
Rather than supplementing just B12
Instead supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help maintain 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 is a recommended option that contains folate, but is large capsule. You can tip powder out if can’t swallow capsule
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Have you had testosterone levels tested
Yes, the Medichecks test (no reverse T3 tho, apparently that's done in the US and it's taking too long).
I'm not taking vit B complex, but I'm taking too much B12, maybe because I eat a lot broccoli and yes I do take B12 after eating breakfast. And yes, I did stop taking B12 at least 2 weeks before I did the blood test.
as you say, maybe vitamin B complex instead. I'll check that one out.
Reverse T3 test is waste of time and money anyway
Suggest you try vitamin B complex instead of B12
Ensure you always get same brand levothyroxine at each prescription
Consider trialing strictly gluten free and/or dairy free diet
Look at getting Dio2 gene test
Test testosterone if not been tested
Get cortisol test done
Come back with new post once you get cortisol results
Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3
Likely to need to go private initially
Some private endocrinologist are currently doing consultations on zoom
tukadmin@thyroiduk.org
If test positive for Dio2 gene variation this might help get T3 prescribed on NHS
Agreed, RT3 test is kinda redundant, I'm just relaying what medicheck told but I know I'm not gluten intolerant, I simply don't have any of those symptoms when I eat food which contains gluten like bread for example.
Nor did I …..absolutely zero gut issues …not one
Turned out to be severely gluten intolerant….astonished
If there's no test, how did you find out? I've gone without bread, pasta, rice, noodles, made no dif.
Has to be absolutely strictly gluten free…..looking at all ingredients lists on everything, including pickles, sauces etc
Avoiding any cross contamination etc etc
Gluten free diet is Much easier these days
There’s loads of gluten free options available…..bread, beer, pasta etc …..in the “free from” section at supermarket
There’s some great gluten free beers and larger available….even at the pub
Eating out is easy too
Hardest is eating at friends or family
Gluten free bread needs to be in separate toaster
You can get a blood test for gluten and I've been tested for coeliac. So I assume you went without gluten for 4 weeks and I assume you still don't eat gluten? Hw has this affected your hypothyroidism?
Full details on my profile
Yes absolutely strictly gluten free since 2016
So what are you saying? That being gluten intolerant is why the Levo don't work? or that being gluten intolerant is why thyroid is wonky? Or, are you saying just what the NHS wants, that is, it's not the pill, it's me that's the problem? Yesterday, I read the latest NHS 'guideline' on treating hypo and it's a disgrace! And isn't this why ThyroidUK exists in the first place, because of NHS neglect?
So how did you find out?
Only made progress with fantastic knowledge and resources of thyroid U.K. and this forum
I joined forum in 2014/15
Saw just how common gluten intolerance was….day after day, members saying how gluten free had helped
I was prepared to try anything to avoid going back to life in wheelchair/mobility scooter
I don't eat processed food, AT ALL. My diet consists of fresh veggies, fruit, chicken, fish and duck and maybe the odd organic lamb. I eat a little rice and organic oats and fruit. I don't drink alcohol, I don't smoke.
Then just changing standard oats for oats in “free from” section
Have you had test for H pylori?
Can be trigger for Hashimoto’s
hypothyroidmom.com/hashimot...
It seems you're obsessed with gluten. Just because your gluten intolerant, it doesn't mean everyone else with hypothyroidism is also intolerant and yes, I have been tested for h pylori. My firm belief is that my hypothyroidism was triggered by stress. And the fact that I can't gain weight is explained most likely by low cortisol, which itself can be triggered by stress. So I reject the gluten cause.
Post closed as poster has left forum
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