New to here, I just wanted some advice really. I have had 2 private blood tests in the last year, both show abnormal results for most of my levels, so I finally contacted my Dr however she said as I have gone private I need to get them to deal with it.. After some conversation I have been booked in for a blood test at 11:20 tomorrow, but I don't think the NHS test for all the antibodies and FT3/4 etc?
It runs in my family so have previously been tested via the NHS and when I asked for my FT3/FT4 levels, they said 'we didnt check that' so I am a bit concerned its not going to show any issues, but I am sleeping way too much, put on way too much weight and have pretty much all of the symptoms.
Last results are below, does this need to be medicated or are these acceptable levels?
TOTAL THYROXINE(T4) : 64.1 nmol/L
THYROID STIMULATING HORMONE: 6.93 mIU/L
FREE THYROXINE: 11.2 pmol/l
FREE T3: 4.37 pmol/l
Thyroid peroxidase ab's: >600.0 IU/ml
Thyroglobulin Antibody: 548.0 IU/mL 0 - 115
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RachP47
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If I were you I would cancel tomorrow's appointment and rearrange one for no later than 9am. This is because you need the highest possible TSH for a diagnosis and TSH is highest early morning and lowers throughout the day. A 9am appointment will give you a much higher TSH result than an 11.20 appointment and a better chance of diagnosis.
Also, water only before the blood draw as some foods can affect TSH and caffeine containing drinks can as well.
If you take Biotin or a B Complex or any supplement containing Biotin then this needs to be left off for 3-7 days before the test as it gives false results.
Your raised antibodies confirm autoimmune thyroid disease, aka Hashimoto's, and an over range TSH together with raised antibodies should give you a diagnosis and a prescription for Levo.
NHS test TSH if this is in range then they assume FT4 & FT3 is in range.
Your TSH is above range? So The FT4 should also be tested.
Arrange blood draw early as possible before eating drink lots of water. This gives highest TSH lowest FT4.
Your GP can’t refuse you treatment as you have sought part of your treatment elsewhere.
Your GP can if willing accept your result and offer treatment if levels are within criteria but many GPs say private tests are not reliable in which case they should be repeating the test.
Ranges vary between lab can you add the ranges of your results.
Positive antibodies confirms autoimmune. Often antibody testing is not repeated beyond diagnosis as treatment is managed by thyroid levels.
Thank you all for your replies, I was a bit concerned myself with the 11:20 blood test as I was always told it needed to be before 9:30, but wasn’t sure if this was correct. That’s more what I was worrying about, incase my TSH levels come down to normal range at this time.
I will try and get this rearranged so hopefully my levels will be in the right range to prescribe levothyroxine
you have high antibodies this is known by medics here in UK as autoimmune thyroid disease.
Technically it’s Hashimoto's (with goitre) or Ord’s thyroiditis (no goitre). Both variants are autoimmune and more commonly just called Hashimoto’s
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 a further 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
Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out
If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)
If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
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.
If you informed an NHS GP of the above results, and they said since you'd had private blood tests ,you needed to go private to deal with it .... i'm appalled.
The TSH is plainly over range.
The TPOab's are significantly over range.
The fT4 is probably low in range or even under range , if range was [12-22] which is a common one .
The correct response should have been . "these results may indicate autoimmune hypothyroidism is developing , but we would need to retest these using our own lab . We would then need to redo the test 2 or 3 months later to rule out a temporary raise in TSH before we decide whether to treat you with Levothyroxine "
It is the NHS's JOB to deal with autoimmune hypothyroidism ,NOT the private sector.
It's not an optional / cosmetic procedure for heavens sake .. it's an autoimmune disease leading to the need for lifelong hormone replacement , for which the NHS gives free prescriptions.
It's worth re arranging you NHS blood test for as early as possible in the morning...if your private TSH was done early AM , and you now do one at lunch time ,it will probably be lower than 6.97 which won't help your case for treatment .
( it's simpler if you say you are "unable to get to one after 9am due to work commitments" than to try and argue the case for TSH needing to be a 9am test ... life's too short to argue with receptionists ) but you may obviously have to wait a few weeks for an early slot.
Thanks tattybogle, yes unfortunately my GP isnt the greatest.. I have gone private for the last few years to avoid her if I am honest. After I sent the blood test results and asked her to call me she called discussing a dermatologist.. When I said it was regarding my blood tests, she said I hadn't had any done there so I said no I have had them done private, her answer was 'so can they not deal with it'
I have just had my results in, they wouldn't reschedule before 9am so my blood test was taken at 9:20am, TSH level was 4.97 and the receptionist has said they are marked as normal.
I know this isn't massively over the limit, but I always though anything over 4 needed medication? Or are these levels ok now?
"TSH level was 4.97 and the receptionist has said they are marked as normal".OK so TSH has 'improved' ... we don't know if its over range or not without seeing the lab range , do you know what the lab range was ?
Even if it is 'in range' , 4.97 must be extremely close to the top of the range .
(so still not great, but 'better' than 6.93 )
If marked 'normal ' it might be just within range. If out of range there is usually some sort of indication in the lab comments, or a ! or * by the result.
If it is 'out of range' , you should ask GP to retest in 3 months ( according to NHS guideline)
..... unfortunately if it's 'in range' they aren't guided to retest TSH for quite a while.
In view of the of the raised TPOab (if they are prepared to acknowledge that result) then they might say they will check you thyroid bloods again in a year or something.
(Finding raised TPOab tells them you are more likely to have over range TSH , and under range fT4 eventually.)
You could ask them to test TPOab themselves if they don't accept the private one , but if TSH is now in range they might say there's no reason to.
"I always thought anything over 4 needed medication."
'Anything over 4' might well mean medication is going to be needed (especially if it comes with over range TPOab ), but they wouldn't start it unless they'd had 2 over range TSH result's taken 3 months apart.
"are these levels OK now ?"
No , the TPOab result of >600 is still relevant. It still shows what it showed before ie. evidence of autoimmune damage meaning you are more likely to become hypothyroid, and need to take replacement thyroid hormone in future.
and TSH 4.97 is so close to being over range, that it might as well be.. it would be extremely unusual to find a 'healthy' person with that level of TSH ...most of them are under 2...(3, is reasonably common , 4 is less so ..see this graph of the % of healthy people with each level healthunlocked.com/thyroidu...
fT4 .. did they not test this ? fT4 seemed very low in your private ones, (but we don't know for sure without the lab range for that private test)
I suggest you get hold of a copy of the NHS results [& ranges], then you know if TSH is now in or out of range , and if they did fT4.
Also ...... find out if they tested TPOab .. you would have thought that since you'd already told them about the >600 it would be reasonable for the GP to have requested one of their own to check if that was correct.
Thank you again Tattybogle. I was only tested for my TSH levels, the range reference says 0.27 - 4.2 mU/L which is what confused me when mine is over the 4.2 - ok not much but I thought with the antibodies as well they might have wanted to do further testing at least.
I asked about fT4 levels but they said they don't test for this unless specifically requested by the doctor and she didn't ask for it. Do you think its worth me booking another blood test in a few months time?
yes , if i had those results i'd go back to the doc's in exactly 3 months time , and request they retest TSH at least (and TPOab if they can't accept the private result).. on the basis that they have now had one over range TSH result (that 'somebody' has decided to write 'normal' next to !)... and their guidelines for subclinical hypothyroidism tell them to retest after 3 months if they get a TSH that is 'over range but less than 10', and then if TSH is still over range, to take TPOab and symptoms into account when deciding whether to treat at that point.
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