Just back from Drs for review of blood test results for thyroid & ferritin.
Currently on 75 mcg Levo & asked if I could trial 100mcg as feel I’m not on optimal dose. Without guidance from endocrine dept she would not prescribe so put in a guidance referral.
Endocrine have since got back and their advice is to remain on 75mcg as my most recent TSH in Jan was in range 0.84 miu/L (0.3 - 5.5) & my T4 last tested June 2022 in the upper parameter at 16.5pmol/L (10-22), my TSH then 0.92.
I realise I am within range but still feeling me symptomatic.
Whilst I agree some symptoms overlap with hormones & the menopause and she advised to try multi vitamins she still refused to titrated up by 25mcg .
Her reason that she would not stand up in a court of law if there was an issue with my health prescribing higher dose.
Then continued to say that if I went private they might look at differently and be happy to trial 100mcg. That is not an option for me for financial reasons unfortunately.
My ferritin came back abnormal, action required - need to speak to Dr.
Results 213ug/L (13.0-150.0) Above high reference limit.
Discussed and she told me not to worry so why put those comments on my patient records , why not put satisfactory no further action ! As it’s without a doubt you will worry and ask why?
So feeling very deflated of todays outcome and now seriously thinking of trialing 100mcg and asked for a blood test in 6/8 weeks. Am I being foolish and just accept they are right and I am wrong?
Any thoughts from anyone in a similar situation to mine would be greatly appreciated.
TIA
Written by
Maynan17
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Unfortunately both your doctor and endocrine department seem to be guided just by TSH which is typical.
my T4 last tested June 2022 in the upper parameter at 16.5pmol/L (10-22), my TSH then 0.92.
Your FT4 was 54% through range so you could argue that it's not in the upper parameter just barely mid-range. However, it would be better if dose is decided on current results of a full thyroid panel which includes TSH, FT4 and FT3. Your GP is unlikely to be able to get all three tests done so maybe consider doing one yourself with one of our recommended labs, Monitor My Health is cheapest for this basic test - see link below which gives a discount code:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):
"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).*"
*He confirmed, during a talk he gave to The Thyroid Trust in November 2018 that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw
You can obtain a copy of the article which contains this quote from ThyroidUK
Email : tukadmin@thyroiduk.org
and ask for the Dr Toft article from Pulse magazine. Print it and highlight Question 6 to show your GP.
See if your GP will compromise on an increase of 12.5mcg ensuring her that if you experience any symptoms of over medication you will immediately revert back to your former dose and make an appointment with her. Also mention that you will take full responsibility and are willing to put that in writing.
It is important for nutrient levels to be optimal for thyroid hormone to work properly so it would be a good idea to test Vit D, B12, Folate as well as ferritin. If GP wont do them then again one of our recommended labs can do them, check out Monitor My Health, Medichecks and Blue Horizon for thyroid/vitamin bundles.
Good idea about compromise to tritate by 12.5 mcg. Shame they didn’t think to suggest that me as I was unaware you could do that! I asked about T3 and she informed me lab does not offer this. I do not have a follow up appt as and had to wait 6 weeks for todays. Would they accept an email suggesting this with my consent do you think instead?
Other bloods you suggest have been done and within normal range accept the ferritin which was elevated , above high reference limit as outlined in my original post , Dr says she’s not concerned !
My surgery has got an email address so I may just try that and wait for a response.
Other blood results were
Folate 9.6ug/L (2.1-26.8)
B12 313ng/L (197.0-771.0)
VitD 68..3 nmol/L (>50)
I have just ordered thyroid panel blood test to inc T3 from Monitor My Health, will be interesting to receive the results as never had T3 done since diagnosis.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
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
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
This one has several references, (some written specifically for GP's) ~ all saying that TSH between 0.4 / 0.5 and 2/ 2.5 is fine , (even recommended) for patients on levo.
Since your TSH on 75mcg is 0.8/ 0.9 then a small dose increase to 87.5mcg may not take you TSH lower than 0.4/0.5 anyway .. in which case the GP's professional 'arse' is already covered by still being 'in range'
They CANNOT know what your TSH will be on 87.5mcg unless they try it .. so give your self a day or dso to regain your 'umph' and push back .... ask for 'a trial' of 87.5mcg for eg. 6 months to see the effect on TSH and symptoms ~ (12.5mcg can be enough to make a difference to symptoms , it does for me. 100 = constipated/ zombie /112.5= is pretty much ok )
Note in case GP doesn't know how to do it ~ 87.5mcg is usually prescribed as "75mcg / 100mcg on alternate days" (because 12.5mcg tablets are stupidly expensive and only com in Teva brand which a lot of people don't get on with )
This one will be of use in future if TSH ends up below 0.4 (and may calm GP nerves about offering an increase while TSH is at 0.8)
it basically shows that as long as TSH stays over 0.04 (and T4/T3 stay in range) there is no greater risk than when TSH is 'in range' ~ (below 0.04 the risks did increase)
When GP's mention "their responsibilites and whether prescribing a higher dose would stand up in law etc ", remind them of this ( it is a note to doctors from page one of the current NHS thyroid treatment guidelines):
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Thank you tattybogle for your in-depth reply , lots of information /guidelines to act upon now and in the future with regards TSH & levothyroxine. I am on Teva so wondering now if I too am not getting full benefits from this brand. Much appreciated.
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