19th Feb - Serum thyroid peroxidase antibody concentration 358 iu/mL [0.0 - 25.0] Above high reference limit
Stayed on 50mcg Levothyroxine
I'm annoyed as they should have done more than just TSH for the latest blood test. It should have been noted that I'm on medication. Now it says no action required which doesn't state whether they are stopping my repeat prescription. I feel I need to be on a higher dose as I need to start IVF and for fertility it needs to be below 2.5. The GP does have this information on record.
What do I do now? Can I push for another test? More tests? The blood test appointment waiting time is something like 3 weeks. I can go to a private GP if we think they can manage this better. It just seems the NHS can't / don't know how to handle thyroid problems.
Written by
luthien
To view profiles and participate in discussions please or .
"No action required" tends to mean they leave things as they are, you should get your repeat prescription but no change in dose.
However, your TSH is too high. The aim of a treated Hypo patient, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges. Also, for a successful pregnancy TSH should be below 2.5
You should request an increase in dose, use the following information:
Fine tuning of the dose could be necessary in some patients
* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
*
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional magazine 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 recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
*
ThyroidUK has an article with links to Guidelines for Pregnancy where you might find something useful to share with your GP:
Thanks that's a lot of information, but good things.
It's good that they're not stopping my medication, but it does need an adjustment.
Our GP only currently works by phone appointments and e-consult, so I have messaged, with some of the information you've provided, lets see what they say.
High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Essential to regularly retest vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common with Hashimoto’s
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
Request 25mcg dose increase in levothyroxine and bloods retested 6-8 weeks later
When adequately treated, TSH will often be well below 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
Have you had coeliac blood test done yet
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
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
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
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
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.
They will not test vitamin levels as "it's not standard practice". I've asked quite a few times now.
I've not had the coeliac test yet - again GP will no do that, which is frustrating. I shall look at online tests. I already have reduced gluten as it helps my endometriosis symptoms.
I've booked in with a private GP so I'll see what they will discuss / look at / want to test. I suspect it'll be more thorough than the NHS especially if I mention fertility.
We always recommend getting FULL thyroid and vitamins tested privately BEFORE booking any private consultation ...otherwise first consultation is waste of time and money
You should see/speak to your NHS GP now and get 25mcg dose increase in levothyroxine
Bloods should be retested 6-8 weeks after each dose increase
Likely to need further increase in levothyroxine after next test
TSH should be under 2 as an absolute maximum when on levothyroxine
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
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
Thanks for all the above, you've repeated a bit of what SeasideSusie has said but not to worry.
The private consultation is just a private GP; with the aim of finding out how they would manage my thyroid condition as my NHS GP is completely rubbish. So they'll most likely start from the beginning anyway considering my GP has missed lots of tests despite me pushing for them. They are happy to look at my current results / any medication / letters etc so I'll take all those with me.
If it said TSH on the blood form they will only test that, the lab tests further is this is abnormal. I'd make sure next time it says the extra bits on the blood form at the start as the lab will then test these.
Due to the fertility issues I'd highlight your concern to the GP as you need the level lower, however I guess as you are on meds it may be lower on the next test as it is already going in that direction or you could ask the GP if you could increase your meds, it does sound like they are just looking at the in range as in ok but they need to look at the fertility issue mostly....to get it below 2.5. Have you spoken to the GP yet or are you just looking at the action none required online? As that is only a generic term they state if in range that wont be taking into account the fertility requirements
I can't find out what's on the blood form myself as it's all done at the GP; I don't take a physical copy of the form for tests, so all digitised at the GP. I did ask what they would be testing and as usual i get "full thyroid" then I asked the nurse at my blood test appointment and she said "it only says TSH on your notes".
I've now sent a message to my GP regarding fertility; they do not connect the dots when blood results come through. The results go to the centre and any doctor reviews them, makes a note on action needed - like medication, phone consultation, those then get booked in automatically. My GP wont get to see them unless I mention to look them up, also the general doctor looking at the results will not look at my notes to check anything else. It's a rather pants system.
Our appointments are via telephone consultation and e-consults, so I've done the latter, then if they want to chat they'll ask me to call in and book a telephone consultation. Annoyingly unless it's an emergency we cannot book a telephone consultation ourselves, it seems that your issue to need to be reviewed by a doctor first to see if a telephone consultation is needed. It's a covid thing currently.
Our GP will not chat about normal results so results within range will be set as nothing needed, so that means I won't have a telephone consultation off the back of that particular result.
It is a pain isn't it, with things starting to open up GP's are still the same no face to face etc and can be hard to get an appointment. Keep pushing though as really it is not a chat about the "normal results" it is more an appointment to discuss fertility and to reach what the clinic are advising you need to be before they proceed on the IVF. The GP needs to take this on board at the end of the day fertility is an important aspect of life, I hope you have some better luck with them!
Come back with new post once you get FULL Thyroid and vitamin testing done privately 6-8 weeks after increase to 75mcg levothyroxine
Have you had coeliac blood test done yet
Are you now on strictly gluten free diet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
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)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
New thyroid results to add to my previous ones
Can someone take a look at my latest test results please.
can you help with these test results please?
