At the moment I take 75mcg thyroxine. My tsh is just under normal, uk. My t4 is 17.
Trouble is I now have chronic fatigue, no sleep, muscle and bone pain and my brain finds it difficult to concentrate and I go into a sort of trance where an hour can just zip past. Has this happened to anyone?
Just testing TSH and Ft4 is completely inadequate
75mcg levothyroxine is very low dose
Do you always get same brand of levothyroxine
Which brand
What vitamin supplements are you currently taking
When were vitamin levels last tested
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
And Vitamin D twice year
Low vitamin levels are extremely common, with Hashimoto’s
Ask GP to test vitamin levels or test privately
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Also vitamin D available as separate test via MMH
Or alternative Vitamin D NHS postal kit
I use also medicheck and that's how I found out I had high tpo. I know t3 but too tired to go to it at mo. Its 4. Something.I take activas thyroxine always.
I take vitd 1000 iu but not getting on well with the pill cause I have gastritis. Rheum say she get gp to prescribe liquid.
I eat vit c every day. Its 10. 30 pm here.
B12 is ok and I have mouth spray to add more.
No pernicious aenemia
Got osteoporosis and ana levels are high in blood work.
Found these results from Feb 2020
Serum vit b12 331ng/L (145 - 910 ng/L)
25 hydroxy vid d (slm10740) A normal 61.3 (50.00 250nmol/L)
Folate 8.6ug/L (3.00 - 20ug/L)
Ferritin normal 48ug/L (10.00 - 150.00ug/L)
Have you had testing done again since?
Aiming to maintain optimal vitamin levels
Vitamin D at least over 80nmol and around 100nmol maybe better
B12 at least over 500
Folate at least half way through range and higher may be better
Ferritin at least half way through range
Vitamin D
Have you tried Vitamin D mouth spray by Better You
This is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average
Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol
grassrootshealth.net/projec...
Are you also taking a daily good quality vitamin B complex?
Not just B12
To improve low folate
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
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 is another option that contain folate, but is large capsule
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...
Low B12 symptoms
b12deficiency.info/signs-an...
With B12 result below 500, recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
B12 sublingual lozenges
amazon.co.uk/Jarrow-Methylc...
cytoplan.co.uk/shop-by-prod...
healthunlocked.com/thyroidu...
healthline.com/nutrition/me...
Only add one supplement at a time and then wait at least 10-14 days to assess before adding another
Yes, vid d only 67 now. With taking tablets (so hard to take them as a. I don't know if they're getting in and b stomach doesn't agree with them. That's why we're trying liquid.B12 has gone up a bit but it's not that as it was 999 some years ago, about 4years but it didnt improve how I was feeling . Endo says I have chronic fatigue and I can phone him anytime. He's an old codger now.
Try vitamin D mouth spray, avoids gut issues amazon.co.uk/BetterYou-Dlux...
Obviously medics are dosing according to TSH, and this is leaving you under medicated
Many Hashimoto’s patients have very low TSH when adequately treated
Most important results are always Ft3 followed by Ft4
Ft3 should be at least 60% through range
Likely to need addition of T3 prescribed alongside levothyroxine
But first step is to get all four vitamins optimal and trial absolutely strictly gluten free diet
I tried Armour but made me feel worse endo dont seem to want me to take t3. He certainly isn't offering it.Thanks for your advice. I'm gonna but mixed b's and spray d
Suggest you work on improving low vitamin levels for at least 6-8 weeks
Then get FULL thyroid and vitamin testing done privately
Will almost certainly see that you are under medicated and probably very poor conversion of Ft4 to Ft3
Yes vast majority of endocrinologists don’t want to prescribe T3....but that doesn’t mean you don’t need it
But BEFORE considering adding T3 you need all four vitamins at optimal levels
And likely to need strictly gluten free diet....and certainly need to trial it first
Roughly where in the U.K. are you?
Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3
NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is always under 2
When adequately treated, TSH will often be well under one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
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 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
Have you had coeliac blood test done before?
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 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.
It's worth finding out your T3 but assuming it is 4 something, why not suggest a 25mcg raise in dose to Doctor - it could make a world of difference. Try it for six weeks then retest to check you're not (too) over range and see how you feel.
He tried me on Armour 2 years ago but it was not good for me and I certainly didnt feel better. Although t3 went from 2.8 to over 4. He would not give me man made t3.Not allowed, apparently.
Wish I could. Do you mean t4??
Yes I meant raise in Levo. For many it will bring up T3 level as well as t4. Small raises - even 12.5 - can have a significant effect.
Yes I took 100 mcg today. Thanks for your reply. Take care.
I had underactive thyroid for thirty years and was fine then the pharmacy gave me Teva brand took it for seven weeks and have all the symptoms you have kept going to my GP who kept saying my blood test was fine went private and my thyroglobin antibodies were 4000 had a ultrasound and my thyroid is very small and have a nodule I still haven’t been told what is wrong that was in 2018.
Sorry to read that. I agree about teva sh..I have tried Armour but that certainly didn't agree with me. So back on t4 75mcg endo says he can't offer t3 man made ?? But I go to his chronic fatigue clinic.
Just a thought...perhaps he wouldn’t have any patients at the chronic fatigue clinic if he prescribed T3. 
I'm sure. Lol. Can they prescribe in uk. I was under the impression it was too expensive for nhs or anyone for that matter?.
T3 is very expensive in the UK which seems to be the main reason it is not prescribed. Another reason is that some doctors do not understand its function. Basically, yes, it can be prescribed in the UK and some people do get T3 from their GP.
I would like to have some. Maybe when my endo phones me, which will be soon, I'll ask.Do you have it?
Just wondered what you said to be able to have it
I was being treated by the great Dr P and he suggested that I introduce some T3 to my NDT and keep a diary of the results. Gradually I decreased the NDT and added more T3 until I was on T3 only as this was at the point that I felt most well. For some time my GP prescribed T3 for me and I got it through the nhs, then bizarrely I was told by my GP that I was not hypothyroid at all and they stopped my T3. I’d had so much trouble with various GPs and lack of hypothyroidism diagnosis that I didn’t bother to argue and just bought my T3 privately; which is where I am today.
Are you ok then?? I'd like some too if endo won't help. Although I'd have trouble if I don't know how to source it.
Unless extremely petite you are likely under medicated on 75mcg levothyroxine
Approx How much do you weigh in kilo?
guidelines on dose levothyroxine by weight
Even if we 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 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...
I'm 5ft 1inch and weigh 61 kg. Naughty girl I just went up to 100 from 75 thyroxine today. Tganjs.
So 100mcg levothyroxine should be about right dose
Getting all four vitamins at optimal levels should help reduce symptoms
Strictly gluten free diet often gives astounding improvements too.....the only way to know if it will help you is to try it .
But not yet .....get settled on new dose levothyroxine first
Perhaps look at gluten free diet in 2-3 months
I'm already gf. Thanks for your help.😊
So if gluten intolerant it’s highly likely you will need addition of small doses of T3 prescribed alongside levothyroxine
All four vitamins need to be at good levels before starting T3
Typically T3 prescribed is 3 x 5mcg daily
I get my T3 prescribed on NHS ...more on my profile
Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3
NHS and Private
tukadmin@thyroiduk.org
Thanks
So in 6-8 weeks time strongly recommend getting FULL thyroid and vitamin testing done
See exactly what your Ft4 and Ft3 levels are
all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
List of private testing options
thyroiduk.org/getting-a-dia...
Often cheapest
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins
cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
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