16 weeks after going up to 50 levothyroxine (2 × 25 wockhardt) these are my levels
Serum TSH level 2.23 mIU/L [0.27 - 4.2]
Serum free T4 level 17.1 pmol/L [12.0 - 22.0]
8 weeks ago I took my levothyroxine before my test - I remembered not to this time
GP is very resistant to me having more
50mcgs Levo is still only a starter dose. The idea is to increase dose, retest after 6-8 weeks and titrate upwards until the TSH is at or below 1 and symptoms resolve.
Free T4 (fT4) 17.1 pmol/L (12 - 22) 51.0%
Your FT4 is only 51% of the range and I would expect it to be upwards of 70%+ when fully replaced.
We haven;t seen your FT3 either as the NHS rarely if ever test it. You need to know if you're converting to FT3.
Show your GP the NICE guidelines where it states an approximate final dose can be calculated by weight in kilos x 1.6. nice.org.uk/guidance/ng145
Try asking different doctors at the same practive for a 'trial increase'. This often goes down better.
Have you had vitamins tested yet and what were the results?
What are you supplementing with?
at bedtime works well for them.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
I supplement with aggressively B12 & D, I also take iron/methyl folate/magnesium/potassium/uniquinol/k and a probiotic
Its essential t test vitamin levels to ensure you're taking enough.
When they test my D & B12 I get told to take less, so they won't test any more frequently than yearly
They refuse to test the others occasionally - folate in Feb was over 20 no range given but under 3 is deficient
Recommend you get the NHS app if you're in England so you can easily see your results. You need to get GP reception to give you access to results on it. Otherwise always ask for a print out of your results from reception.
You're headed in the right direction with supplementing but its important to understand you need to supplement the right amount, especially of non water soluble vitamins like vit D, iron, magnesium, potassium.
Excess vit D can cause health problems. mayoclinic.org/healthy-life...
How much are you taking? Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150.grassrootshealth.net/projec...
Magnesium needs to be taken 4 hours apart from Levo as it can cause absorption issues.
Iron in excess can cause health problems. healthline.com/nutrition/wh...
Article about why not to supplement potassium. Recommended to get it from food sources only. health.harvard.edu/staying-...
For B12 & folate its usually recommended to take a good methyl B complex which keeps all the B's in balance as they all work together.
B complex suggestions: Slightly cheaper options with inactive B6:
amazon.co.uk/Liposomal-Soft...
Contains B6 as P5P an active form:
bigvits.co.uk/thorne-resear...
healf.com/products/basic-b-...
Explanation about the different forms of B6:
helvella.blogspot.com/p/hel...
B complex comparison spreadsheet:
healthunlocked.com/thyroidu...
Suggest you get your levels tested and adjust supplements as necessary. Post results in a new post for members to comment.
In Feb
Serum 25-Hydroxy vitamin D3 level 118.0 nmol/L; <25 nmol/L deficient
25-50 nmol/L may be inadequate in some
>50 nmol/L sufficient for most people
D as a spray with K2
Serum vitamin B12 level > 2000 pg/mL [197.0 - 771.0]; Above high reference limit - i inject hence the methyl folate, I've worked out adsorption isn't my problem storage/use is
I cant eat most of the potassium foods suggested and my potassium and zinc were low a while back (2014?) So I started supplementing- I forgot zinc in my list of supplements
I take floradix twice a week as supplementing daily isn't ideal
So vit D is fine. Never reply on a doctors judgement where vitamin levels are concerned. They get no training in the subject.
B12 over range isnt an issue at all as any excess gets excreted via urine.
If injecting B12 especilly a B complex would be recommended to ensure you have enough of all the other B's to use it properly.
If taking zinc you should also take copper as they need to balance.
List of potassium rich foods: webmd.com/diet/foods-rich-i...
Suggest you get an iron panel run to check iron levels.
maybe/ maybe not .... depends on how you are feeling on 50mcg .
but as your TSH is still over 2 ,and there is still room in the range to increase fT4 level. then if you would like to try an increase to see if it improves how you feel/ cholesterol etc , then you can keep pestering GP using those references recommending GP's to keep TSH below 2/ 2.5 in all patients on levo that i gave you in previous posts: see my reply on here : healthunlocked.com/thyroidu...
I'm sorry im going on about it - I don't feel listened to at the surgery
I've sent in a request for a trial of 75 - I feel so anxious even using the econsult
you have absolutely no need to apologise, to anyone ... if your GP's were listening to what you tell them in the first place, and kept their knowledge of treating hypothyroidism more up to date, then you wouldn't have to go on about it to anyone.... cos even if they couldn't fix everything , you'd at least feel looked after and safe in their hands. and be able to have an intelligent thoughtful discussion with them about your treatment .
Not being listened to , like intelligent adults who know what we are experiencing, is what makes us all feel so insecure and anxious about dealing with GP's.
Keep going Katy Mac ,be persistent , you're just doing what you need to .
Thanks tattybogle thought I was going mad there for a minute but I think I've worked it out
I've taken photos from those articles and sent them to myself on WhatsApp putting the link in too - so hopefully I will find them when the GP rings on Friday
Recently I was talking to student doctors as a training exercise and it was noted by them how many times I wasn't believed by the doctors (with my pregnancy/conception dates - my daughter was born 3 weeks late/an ectopic pregnancy again dates were not believed/my husbands medications/my medications etc)
I believe myself to be a poor patient as the things I say are consistently ignored or not believed - as I am the only consistent element over many interactions it can only be me that is the problem
I'm speaking to a pharmacist rather than a gp - not sure if that's a good thing or not
I explained that my symptoms hadn't really changed
I still was tired, dry mouth, dry eyes, cough, bit anxious, heart palpitations, high cholesterol, high ish BP
She immediately wanted those check and I explained they had been
I said I dont have health anxiety about being ill but I do about talking to professionals about my health
I said that I probably wasn't intending on getting high on thyroid, & a certainly couldn't sell it on street corners and if I was taking too much I'd recognise the symptoms and stop
I mentioned the go online and gp notebook and nice
She said she would check with the go
Then rang back and the gp said no
I am crying
Very sorry to hear you're getting no help from the GP.
There is plainly no good reason why the GP could not allow you to try either:
~ 87.5mcg (achieved by taking 100/ 75 alternate days... or cutting a 25 in half to get 87.5mcg daily if you find alternate dosing is a problem)
~ or 100mcg daily
this would be expected to lower TSH a bit and raise fT4 a bit .... but as TSH is currently over 2.it is unlikely to fall below range with a relatively small increase to 87.5mcg or 100mcg . and since fT4 is only 51% , is very unlikely to go over range with such a small increase.
So .......
since they have refused to help you , despite you making a very good case for it ,backed up with evidence , and there being no reason to be concerned that trialing an increase would cause you any harm, or send your result out of range.... then some would advise seeing a differnt GP , but personally i've never been one for playing musical doctors , so if it was me i'd use the :
'do it first and ask permission later' option.... (which i what i have always done ever since diagnosis):
(this obviously depends on you having enough tablets in hand to take the dose you want for 6 wks so it does require some forward planning ... you may have to wait a few months until you've build up enough spare levo to try this ~ get hold of it however you can , "leave some on holiday by accident "and need a replacement for it ... get repeat prescription slightly early .... whatever it takes. )
~ decide what dose you want to try, take this consistently for at least 6 wks,
then preferably get private blood test to see TSH / fT4 / fT3 yourself first , before deciding how to proceed with GP ( MonitorMyHealth is about £30) ..
assuming TSH and fT4 are still within range, then inform GP surgery that you have "tried taking increased dose for 6 wks to see if it helped my symptoms". ( they will of course not like this , but they will have little option but to do their own blood test to see what horrific fate has happened to your bloods as a result of going against their advice)..... and when their result come back as TSH still in range and fT4 still in range .. and if you inform them that you feel somewhat better on this dose .... they will have no grounds to tell you to go back down ... and they will usually then agree to increase the prescription to what you are taking, even if reluctantly (well mine have always increased it anyway)
simples ....
obviously if you increase to 87.5 or 100 and it does take you TSH below range , or your fT4 over range , then this back door method of getting a raise is not going to work , cos they'll say "told you so, now go away and do what you're told" ...
but, cross that bridge if you come to it .... you probably won't have to , i would be extremely surprised if 87.5mg sent your bloods out of range .... and i also think it's pretty unlikely on 100mcg .... but neither your GP , nor you , can know the effect of 87.5mcg or 100mcg on your TSH or fT4 levels without trying it.
Sending you a hug ((((((( x ))))))))
I'm only on 50 so I guess 62.5 or 75 is the next step
Can I buy it on the black market? Abroad? I only get 4 weeks at a time
I will be asking the gp I speak to whoever that is
The e consult form takes so long
I wish Dr House was real or there was a specialist "look at everything going on" type dr
yes correct 62.5mcg or 75mcg
sorry ,i don't know why i thought you were taking 75mcg .
it is possible to buy levo without prescription, some members do ~ put a new post up clearly asking for reputable Levo sources , request any replies are sent to you by p.m , (they must not be posted on the open forum.. Admin will close the post for you to make sure no one does).
you need to keep you wits about you though , unfortunately Scammers may well contact you on here , we are a prime target for them .... so if you get sent any recommendations for sources it is very important that you P.M an admin and ask if they have any feedback good or bad about that supplier before considering parting with any money. PLEASE READ THIS POST : healthunlocked.com/thyroidu...
you could also get it 'legit' , eg private prescription from eg. roseway . this will cost you more , but avoids the prospect of getting ripped off, and roseway consultation costs seem much more reasonable than most private places. Several members now use roseway for this purpose . so again , put a post up asking for more info from those who use them.
There is every possibility that upping my levothyroxine won't make me feel better but if there is any chance it could I'd like to try
Atm I can ask for more thyroxine privately as we are living on a greatly reduced budget as I cantbwork but if that changes I'm there!
My script for tomorrow
I'd really like to try levothyroxine at 75, I'm feeling quite a few symptoms currently (dry eyes, dry mouth, horrid dry cough, my throat is sore to touch on the outside, anxious, heart palpitations, tiredness, my skin & hair are not right)
I understand how I will feel if I take too much and will stop
Lots of literature suggests that below 2 or even below 1 is ok for people taking levothyroxine
If it isn't that I need my thyroxine increased may I have tests for all the symptoms please?
Because it isn't right that I feel so ill all the time, it's affecting my work and my family life
I'm getting lung function tests for my cough and would I like to try antidepressants for 6 months
Oh and a referral for the CFS clinic that they refused me in 2017 as my CFS diagnosis was too old
CFS/ME is a 'diagnosis of exclusion' which means it should not be diagnosed unless other potential causes of the symptoms have FIRST been excluded .
....you have a TSH over 2 .... and you have that list of references, some of which advise that TSH should be kept under 2 for optimal treatment of hypothyroidism .... so whatever your GP thinks , you DO have a good argument that your hypothyroidism has not yet been excluded as the cause fo your symptoms.
So , if you do ever get to a CFS clinic make sure you state this clearly.
(i assume waiting list for CFS clinics are extremely long ? )
Don't give up KatyMac .
Your request to try a dose increase is entirely reasonable, and does not pose any risk.
Your GP is a muppet.
Oh I have a diagnosis for CFS from 1996
My daughter is coming with me to my appt we are waiting now
At the appt I got:
Referral to thyroid team at hospital (woo-hoo! No idea when)
Referral for CFS team
Appt for an xray thursday
Blood test tomorrow (not thyroid)
Urine test (clear)
Chest listened to
Referral for lung function tests- which aren't currently happening in our area so I'm on the waiting list
No way will I be allowed more levothyroxine while my blood test is lower than 4
And maybe it's long covid,
Alongside a grudging admission that my daughter might need aware of any depression I might have even if I'm not! Despite me proving that the last 2 times I have needed antidepressants I have had to beg for them
So although I may not have got more thyroxine (as its dangerous to over medicate) she did take the "if its not thyroid what is it" reasonably seriously
ok so ...jump through their hoops re. checking out 'other causes', but keep banging on about the "TSH being over 2 so would like to trial a dose increase" whenever you get chance ....sooner or later they will probably agree to it just to get rid of you .
persistence usually wins in the end.
Tsh test refused by the lab but this is new
Serum free triiodothyronine level 4.5 pmol/L [3.1 - 6.8]
I'm guessing that's an OK result, but it was marked "Multiple requests for this patient received with
insufficient samples to process separately. In order
for us to complete all requests, these have been
amalgamated. A copy of the results have been sent to
all requestors"
So the first tsh was refused (retest too soon) so were the antibodies (already have been tested)
But my new tsh (1:30 I'd eaten but not taken my levothyroxine 50; no flexibility given in the time of the test)
Serum TSH level 1.48 mIU/L [0.27 - 4.2]
Serum free T4 level 16.2 pmol/L [12.0 - 22.0]
Is my blood test normal?
What does this mean?
My latest blood test is a surprise and my endocrinologist says I am correctly medicated but I still have the same symptoms, is this right?
What on earth do my results mean?
Advice on supplements after blood tests.
