Managed to get my last 2 blood results from docs
September:
Free t4 = 12.2 》 7.86-14.41
Tsh =3.77 》 0.35-5.50
Managed to get b12 and vitamin d tested too.
B12 =257 》150.00-750.00
Vit d =70.7 >50.00
Cholesterol = 7.6
December:
T4 =12 》 7.86-14 41
Tsh= 5.89 》 0.35-5.50
Cholesterol= 6.9
Currently awaiting endo to get in touch on latest results. .....health has deteriorated loads since been on meds ... side affects galore !!!
Any advice would be great
In september ... TSH(Thyroid Stimulating Hormone) was asking for more thyroid hormone.Most common 'healthy persons' level is nearer 1.
In December ....because it hasn't received any more , TSH is asking louder ie gone up further to 5.89
The solution is to increase Levo dose.
Hopefully GP will notice now that TSH has gone over range, but could have noticed on Septembers results, if they were looking carefully....
Hopefully.... gp wanted to increase straight to 100mg ..... I queried the big jump , now waiting for Endocrinologist to get in touch
Personally , i would rather increase in a more gradual way.If you've been on 25/50 recently , and have been on a low dose for years, then it would seem more sensible to increase now by just 25mcg, and then retest after 6 weeks to see the effect.
I now wait at least 8-10 weeks before i decide how i feel on a new dose.
There is a new suggestion to GP's that they should just start on full dose in some patient's, but that is more to do with saving money and time for them .
I think many Doctors are too heavy handed with how they adjust Levo dose, even 12.5 mcg up or down has a big affect on me, and it takes me longer than the 6 weeks needed to get a reliable TSH test, to settle into how it 'feels' on a dose.
I would say increase by 25mcg , retest etc. and when you are on around 75mcg than adjust in 12.5mcg increments.
This will cost them more money and time in appointments and blood test's, but is much more likely to find the right dose where you stay stable.
If you go straight to 100 , quite likely your TSH will overreact and go low , then they'll panic and reduce dose again , probably by too much, and have you up down and round the houses for a year.
The body's own way of adjusting thyroid hormone is very subtle , and tries it's hardest to maintain consistency..... Then Doctors come along and start over correcting all the time and just mess you up.
It's like trying to steer a truck worn worn out steering down the motorway, the way to keep it straight is with very, very small corrections on the steering wheel , the minute you make a big correction you are back to zig-zag ing across the lanes.
I've decided to increase to 50 daily instead on 25/50
Sound like a good plan, ... use your own brain for dosing decisions .... just use the Doctors for prescriptions , it seems that's all some of them are good for. 
p.s Try and keep to the same brand of Levo , it really does make a difference , even thought the chemists and Doctors roll their eyes at the suggestion.
I used to think that it didn't affect me , but in hindsight i was much better when i used to get the same brand every time, then they started changing brand at each repeat, and i eventually noticed that when i got Teva i'd start to feel much 'less good ' after about 3/4 days on it, and it would stay that way until the next prescription. When i got anything but teva, and i started to feel more like my better self within a couple or three weeks.
That's happened twice now , since i've been paying more attention, so now moved to smaler independent chemist that is willing to avoid Teva. (some people do really prefer Teva , it'a a bit of a 'Marmite' brand, probably because they are ?lactose free, and use mannitol as a filler)
When you change dose , don't change brand at the same time (tricky to manage , but it's worth the effort of insisting) otherwise you cant compare how you feel, it could be the dose , or it could be the brand.
Don't be to quick to decide if a new dose is right , improvement can happen slowly over months.
Hope you start to feel better , and a bit more in control of your treatment.
Finding this forum, and starting to understand your own blood tests was a good move ... it took me 17 years.
Thanks .... I was on teva for about 2 years and made me ill ..... I come off all medicine for 6 months and would of stayed off altogether but had a blood test and was told I could make myself ill if I don't take something....... currently been on eltroxin for 6 months
I think you need to test free T3.
As tattybogle says, your TSH is too high for someone on levo - and yet your free T4 is nice and high in range. My guess is that free T3 is lamentably low, and that's why TSH is high and rising and you're not feeling great. If that's correct you will likely benefit from a trial of lio (T3 meds).
It's possible but tricky to get lio on the NHS. I must be prescribed by an endo - but not many will because it's fiendishly expensive, has a short half-life (so it difficult to measure) and a lot of them st don't plain believe it does any good (and the thousands of us who feel brilliant on it are deluded / wrong / all suffering from a placebo effect.
So it would be worth getting the list of T3-friendly endos from Dionne at Thyroid UK - tukadmin@thyroiduk.org - and if my hunch about low free T3 is right, a separate post asking if anyone can recommend an endo near-ish to you. You don't have to see the nearest person - and be aware that they don't have to accept you after a referral from your GP - so some people see a private endo and get a private prescription; but NHS is obv cheapest if you can get it
Good luck x
He’s only on 25mcg/50mcg levothyroxine
So far too low dose to be considering T3 yet
Yes , I think I'll have to do a private test to get the full picture
Looking at previous post
Hi , the last 6 months I have been on eltroxin 50/25 alternative days.Vitamin d , b12 and testosterone have all been tested this year ..... all were in range b12 was at the lower end tho.
As I said then and will repeat again that is ludicrously small dose
Standard starter dose of levothyroxine is 50mcg-100mcg
You are woefully under medicated
Need immediate 25mcg dose increase in levothyroxine and bloods retested 6-8 weeks time
B12 is FAR TOO LOW
Any folate result?
What vitamin supplements are you currently taking?
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 improve B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
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 such low B12 result 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/vitamins/vit...
Vitamin D is still too low
Needs improving to at least 80nmol and around 100nmol maybe better
Ferritin needs testing
I've got a b12 supplement from Holland and Barratt.... only started to take it from this week ...... Not had a folate test
How much vit d would you recommend to take ?
Which B12 exactly
H&B own products are cheap for a reason
Recommended B12
amazon.co.uk/Jarrow-Methylc...
Recommend Vitamin B complex
amazon.co.uk/Super-B-Comple...
Its B12 1000ug...... ill look into the products you have suggested
Who makes it?
Exactly what brand?
Holland and Barratt timed release b12
This one
hollandandbarrett.com/shop/...
Contains Vitamin B12 (as Cyanocobalamin)
Perhaps alternate between this and
Cytoplan recommended B12 that contains methylcobalamin-adenosylcobalamin
cytoplan.co.uk/shop-by-prod...
Difference between the different B12 supplements
healthline.com/nutrition/me...
Yes this is the one ...... I shall order the other too
Cholesterol is high because you’re on far too small a dose of levothyroxine
nhs.uk/conditions/statins/c...
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Yes , I have read this too ..... I managed to bring it down through diet and exercise (when I had the energy to exercise)
Was this December test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?
Which brand of levothyroxine are you currently taking
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.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
Yes, I did test at 7,40am fasted and no dose for 24 hours
As you have Hashimoto’s are you on strictly gluten free diet
Probably need testosterone retested
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
TSH should be under 2
gponline.com/endocrinology-...
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
I'm not currently gluten free but its something I'm thinking about........ I was tested for gluten intolerance and it came back ok
Yes, because you can’t test for leaky gut and gluten
Only 5% are coeliac, but over 80% of Hashimoto’s patients find strictly gluten free diet helps or is essential because of leaky gut....rather than true intolerance
This completely inadequate dose has been going on over 3 years
Levothyroxine doesn’t “top up “ failing thyroid....it replaces it. This is why nearly every person will end up on, or near full replacement dose
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists.......
NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way 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
Yeah you are right....Its been going on far too long Like I said to the doctor this week I feel like I'm banging my head against a brick wall .... im so frustrated with it all .... I've felt well for a long time ..... its affecting me physically and mentally too. Also my marriage.
I might have to go down the private road but I'm concerned about costs .... I don't want to get so far and not being able to afford it
Will your GP increase dose by 25mcg as first step
And, very importantly go on increasing dose until you get on high enough dose
Many of us have to see an endocrinologist if GP won’t carry on increasing dose once TSH gets under 2
What approx do you weigh in kilo?
Multiply weight in kilo x 1.6 = likely dose levothyroxine you will need
You might need higher dose.....but unlikely to need less
Sometimes we can’t tolerate high enough dose .....then would need to look at adding T3 prescribed alongside levothyroxine (has to be initiated by endocrinologist)
Or some people, even if they can tolerate high enough dose, still have poor conversion of Ft4 to Ft3. Common problem with Hashimoto’s patients, but especially if also gluten intolerant
So again, would then need addition of T3 prescribed via endocrinologist
But before all that you need to get on high enough dose levothyroxine....at least 100-125mcg minimum
All four vitamins need to be OPTIMAL
Vitamin D at least over 80nmol and around 100nmol maybe better
B12 at least over 500
Active B12 over 70
Folate and ferritin at least half way through range
Roughly where in the U.K. are you?
Have you had list of recommended thyroid specialist endocrinologists from Thyroid U.K.
Hi , I've increased my self to 50mg daily instead of 50/25 alternative days .I know I need to be taking more but don't want to jump up too quickly. I currently weigh around 76kg so works out about 120mg I think.
When I was on tea brand I got up to 75mg and it was too much .... it made me really ill.
I've not got round to getting a list yet but will look into.
More likely it was the brand ......Teva makes thousands of patients very unwell
Which brand of levothyroxine are you currently taking?
Currently on eltroxin
Eltroxin and Mercury Pharma are exactly same brand
So 120mcg per day would work out as 125mcg x 6 and 100mcg x 1 per week
But you will need to increase dose slowly
Maintain optimal vitamin levels too
Possibly strictly gluten free diet
Yes gluten free after xmas is a definite...... I'd like to do it now but they'll be way too much temptation over the next 2 weeks 🍻
So how long have you been on 50mcg daily?
After 6 weeks Go up to 50/75mcg alternate days
Started on Wednesday
So wait at least 4-6 weeks before next step up
Thanks .... I think I'll do a private test around then first .... I had to say it but have lost faith with docs at the minute
I don’t think any medic can manage Hashimoto’s
Patient has to take control
There’s too many variables.
NHS only tests and treats vitamin deficiencies
We need to self supplement vitamins often continuously to maintain optimal vitamin levels
You need ferritin test too
Fortunately NHS via Monitor My Health is now doing cheaper TSH, Ft4 and Ft3 testing kit
Remember to stop taking vitamin B complex a week before ALL BLOOD TESTS
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
Down to you to insist at pharmacy on sticking on same brand levothyroxine.
Food intolerances obviously need to be managed by patient too
"I had to say it but have lost faith with docs at the minute"
That's not necessarily a bad thing .... i wish i'd lost faith in them and come here about 15 years ago, I might still have a business, and a van , and a social life.
Suggest you reread all these replies
Your gut symptoms are due to being under medicated
Are you now on strictly gluten free diet
Sounds like new endocrinologist is diabetes specialist
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